# Seroiusly?



## lavender

I went and got labwork done yesterday. Called my endo's office today to ask for results. They said it would be 7-10 days for the endo to review and get back to me. I have an on-line account with them where they can post things for me to see immediately. Do I have a right to get a copy of my labwork before my doc reviews it?

I am feeling pretty fatigued, having a hard time managing to do anything, and I would really like to know for myself if this is related to thyroid levels or something else. 7-10 days is a long time to wait when I can't function.


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## lavender

Ok, working on being assertive instead of just mad here. Called the endo's office back, and left a message (since I can't actually talk to a live body). Told them I have been fatigued and have seen my PCP 2x in the last month and would really like to know if it is related to my thyroid levels or not. Could I get a copy before the doc reviews?

We'll see what happens. This guy is already on my "docs to fire" list as soon as I get into new integrative medicine doc.


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## desrtbloom

You are entitled to your results whether a doctor has looked at them or not. Call the lab where you had them taken and ask them to get you a copy and if it was at the doc's office as them to provide you a copy (hopefully you have a fax machine). Good luck!


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## Andros

lavender said:


> I went and got labwork done yesterday. Called my endo's office today to ask for results. They said it would be 7-10 days for the endo to review and get back to me. I have an on-line account with them where they can post things for me to see immediately. Do I have a right to get a copy of my labwork before my doc reviews it?
> 
> I am feeling pretty fatigued, having a hard time managing to do anything, and I would really like to know for myself if this is related to thyroid levels or something else. 7-10 days is a long time to wait when I can't function.


I sure would think that you have a right; you are the client, you are the payee. Yes?? Hmmmmmmmmmmmm!

You must let us know. I hope that you have access.


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## lavender

So frustrated with these docs. Endo and PCP work for the same network of doctors and they are both very inconsistent about giving me lab results. The doctor's office is the lab. And I feel like such a pain in the butt calling them all the time.

Summoned all my courage to call and leave a second message, trying to be a nice as humanly possible when I really want to scream at them. Voice mail says they have 48 hours to get back to me. That means Tuesday. Hoping it won't take that long.

In the meantime, I am stuck here wondering what the heck is going on with me. Extreme fatigue all week. Sleeping 12+ hours a day and having no energy to do anything. Awake and aler this morning, actually got my dishes done. Sad fact that being able to wash my dishes feels like a huge accomplishment. And now, after trying to resolve two issues by phone, my heart is flip flopping in my chest again and I feel all shaky.


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## mum2bradley

Wow that sucks. I hope you get some answers soon. I go for weekly blood work right now. Drawn on Wednesday, I call my Dr's office on Friday and they fax me results. My Endo is good at reviewing right away and adjusting my meds right away. Although 2 weeks ago I told them that i was feeling crappy and he said my levels were fine on Friday they called to adjust my meds. Hope you are feeling better soon. I off to see my Endo in 30 minutes


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## CA-Lynn

One of the things that's been happening lately is that some labs are making the patient wait a week after the doctor gets the results before they'll send the results to the patient.

Here's the ideal situation:
1. YOU choose which lab to go to.
2. Have the doctor write "cc to patient" on the lab order to ensure that the patient gets the results the same time the doctor does.

The other reason for "cc to Patient" is that if you choose to leave the doctor for another one, you'll already have your records. I can't tell you how many times people change doctors and pay through the nose to have their records photocopied.....not to mention the time it takes for the staff to get around doing it.

Must be proactive - after all - YOU'RE paying for the insurance.


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## lavender

I am seriously disappointed with these docs. Never heard back from the endo today as expected. The last time I had blood drawn, it took over 2 weeks to hear from him, and that was after I initiated a series of calls. My next appointment with him is a month away.

It's really not acceptable when I don't feel well and my PCP is trying to convince me to take anti-depressants instead of actually treating my thyroid or even considering how the synthroid is related to my symptoms. It's also not acceptable when I go to seem my PCP, and she tells me that the endo never even documented that my synthroid dose was changed in my chart. I could go on but It's just making me madder...

What I really need is a copy of my whole chart to take with me to see the next doc. I am afraid that if I ask for it, they will deny me care when there is a long wait to get into the next doc. I am able to call the new doc to try to get in on a cancellation list, but I don't see the point in going in without my records because my history is so complex.

I am considering just calling their administrative office on Monday, telling them how dissatisfied I am, and asking if they can help me get a copy of my chart or at least all the labs that have been drawn.


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## CA-Lynn

Lavender,

It's YOUR body, YOUR life, and YOU are paying the insurance premiums. They work for YOU.

Get on the phone with them and tell them you need the records now and ask when they will fax them to you. If you don't have a fax, arrange to pick them up. Don't ask them to mail them to you. They might get a little sticky and demand that you sign a release form. That's easy enough. Tell them you will sign it before they hand over the copies.


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## Andros

lavender said:


> I am seriously disappointed with these docs. Never heard back from the endo today as expected. The last time I had blood drawn, it took over 2 weeks to hear from him, and that was after I initiated a series of calls. My next appointment with him is a month away.
> 
> It's really not acceptable when I don't feel well and my PCP is trying to convince me to take anti-depressants instead of actually treating my thyroid or even considering how the synthroid is related to my symptoms. It's also not acceptable when I go to seem my PCP, and she tells me that the endo never even documented that my synthroid dose was changed in my chart. I could go on but It's just making me madder...
> 
> What I really need is a copy of my whole chart to take with me to see the next doc. I am afraid that if I ask for it, they will deny me care when there is a long wait to get into the next doc. I am able to call the new doc to try to get in on a cancellation list, but I don't see the point in going in without my records because my history is so complex.
> 
> I am considering just calling their administrative office on Monday, telling them how dissatisfied I am, and asking if they can help me get a copy of my chart or at least all the labs that have been drawn.


I absolutely believe you should get your records. Invoke HIPAA http://www.hipaa.org/

However, I am inclined to give my opinion here. I sometimes think giving your records to a new doctor prejudices their diagnosis.


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## lavender

I had assumed that with my complex history, it would be better to have records of what has been done. Sort of like taking a car to a new mechanic. But, now I am starting to wonder...is it better to just go in to a new doc with a list of here's my symptoms and history and make them figure it all out from scratch?

Would it be helpful to bring them copies of the labs I have had done recently? I have this ethic about being open and transparent so that whoever is working with me can get the full picture, but I have seen where this has worked against me getting good help from docs in the past. On MANY occasions.

I have one friend who has advised me not to tell the new docs about my history of PTSD as this tends to bias them towards mental illness and ignoring my physical symptoms. As if I am overly anxious and making things up. I have been told by many docs to just go and treat my PTSD while they refuse to do any further testing. It is very frustrating.

I know I have PTSD, and I have had extensive therapy to treat it. I am pretty self aware as to when it is acting up and when it is not. When it is an issue, I address it with my therapist. Medical doctors can't offer me any help with it besides to be sensitive to my needs (which never really happens anyway). The biggest factor that it plays in my medical care is that I have a really hard time standing up to docs, asserting what I know about my own body, and really getting my needs met. Which is probably at the root of why I started this thread in the first place.


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## Andros

lavender said:


> I had assumed that with my complex history, it would be better to have records of what has been done. Sort of like taking a car to a new mechanic. But, now I am starting to wonder...is it better to just go in to a new doc with a list of here's my symptoms and history and make them figure it all out from scratch?
> 
> Would it be helpful to bring them copies of the labs I have had done recently? I have this ethic about being open and transparent so that whoever is working with me can get the full picture, but I have seen where this has worked against me getting good help from docs in the past. On MANY occasions.
> 
> I have one friend who has advised me not to tell the new docs about my history of PTSD as this tends to bias them towards mental illness and ignoring my physical symptoms. As if I am overly anxious and making things up. I have been told by many docs to just go and treat my PTSD while they refuse to do any further testing. It is very frustrating.
> 
> I know I have PTSD, and I have had extensive therapy to treat it. I am pretty self aware as to when it is acting up and when it is not. When it is an issue, I address it with my therapist. Medical doctors can't offer me any help with it besides to be sensitive to my needs (which never really happens anyway). The biggest factor that it plays in my medical care is that I have a really hard time standing up to docs, asserting what I know about my own body, and really getting my needs met. Which is probably at the root of why I started this thread in the first place.


Yep; it could be a crap shoot alright. There is no reason if need be at a later date that you cannot furnish such information if you want to but no matter how you cut the cake, by divulging information, that in and of it's self causes a change in thinking. It "always" does. Sadly.

Part of the reason I am here is to help others stand up for themselves and to be able to advocate for themselves.

"Knowledge is power!! You are stronger than you think you are!! I know you are!


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## lavender

Well, I never heard back from the endo's office. Big Surprise. Got over my own resistance today, and called my PCP's office. They are printing out all labs from the last year from both my PCP and Endo. No questions asked. They didn't even mention my needing to pay for copies. I will pick them up later today!


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## Andros

lavender said:


> Well, I never heard back from the endo's office. Big Surprise. Got over my own resistance today, and called my PCP's office. They are printing out all labs from the last year from both my PCP and Endo. No questions asked. They didn't even mention my needing to pay for copies. I will pick them up later today!


This endo is not good. With thyroid, a person should not be left dangling in the wind in regards to labs re the need to titrate meds either up or down.

You suffer; this is unconscionable.

Glad PCP is getting your records for you. You might have to pay so be prepared.

Let us know.


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## lavender

Andros said:


> This endo is not good. With thyroid, a person should not be left dangling in the wind in regards to labs re the need to titrate meds either up or down.
> 
> You suffer; this is unconscionable.
> 
> Glad PCP is getting your records for you. You might have to pay so be prepared.
> 
> Let us know.


Yup, I am at the point that I do not even want to go to my next appointment. Why waste the money? My friends are encouraging me to stick it out because he works in an office run by an endo with a really good reputation, but her load is full so I got stuck with the newbie idiot. I would really rather be managed by a Primary Care Doc who is willing to listen to me at this point. I wish there was someone to report him to for being negligent.

The good news is that my PCP did not charge me for the labs! Sucks that's she's not much better with thyroid. I really love her office staff. They have been amazing to work with.


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## GingerCMusick

I'm also glad you are getting your records. It is very important to have access to your condition. I'm on my THIRD doctor. The first two really wasted my time and wanted me to go for a sleep study?? Really? The second one elected I needed surgery and meds and was going to schedule my pre op only to call me back the next day to decide to wait until after first of the year (at least) to do anything else. The ENT I am going to now basically told me on the first visit, I was looking at surgery and/or rad. pills because my nodules are big and 'cold' So, I go back to see him on Tues to see what my results of contrast CT scan and labs are...

You must be pushy and my personality is normally not like that but I have discovered that is the only way to get results FAST. My prayers are with you and remember, push....


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## Andros

lavender said:


> Yup, I am at the point that I do not even want to go to my next appointment. Why waste the money? My friends are encouraging me to stick it out because he works in an office run by an endo with a really good reputation, but her load is full so I got stuck with the newbie idiot. I would really rather be managed by a Primary Care Doc who is willing to listen to me at this point. I wish there was someone to report him to for being negligent.
> 
> The good news is that my PCP did not charge me for the labs! Sucks that's she's not much better with thyroid. I really love her office staff. They have been amazing to work with.


So glad there was no fee for your records. Whoohoo!!

If the endo runs the office, she is allowing this inept person/doctor to work there? Hmmmmmmmmmmmmmmmmmm! Giving that some thought on my end.

I have often said that, "Your veterinarian most likely could do a better job!" They know their stuff boy. They have to as the animals can't talk.


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## lavender

Andros said:


> So glad there was no fee for your records. Whoohoo!!
> 
> If the endo runs the office, she is allowing this inept person/doctor to work there? Hmmmmmmmmmmmmmmmmmm! Giving that some thought on my end.
> 
> I have often said that, "Your veterinarian most likely could do a better job!" They know their stuff boy. They have to as the animals can't talk.


I have one friend who swore the endo running the office was amazing, but has been having trouble even getting an appointment with her recently despite growing nodules! So, I think something is afoot with the whole office. Potentially the whole network of docs with the recent decline in service from my PCP.

Funny thing, I actually read the most informative article about my non-functioning parathyroid a while back only to realize it was written by a vet! Why are they able to put it in understandable language when our docs seem to think they have to talk way over our heads like we couldn't possibly understand these things. Sometimes I wonder if they are the ones who don't understand...


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## Andros

lavender said:


> I have one friend who swore the endo running the office was amazing, but has been having trouble even getting an appointment with her recently despite growing nodules! So, I think something is afoot with the whole office. Potentially the whole network of docs with the recent decline in service from my PCP.
> 
> Funny thing, I actually read the most informative article about my non-functioning parathyroid a while back only to realize it was written by a vet! Why are they able to put it in understandable language when our docs seem to think they have to talk way over our heads like we couldn't possibly understand these things. Sometimes I wonder if they are the ones who don't understand...


Wolf, wolf; meow, meow!! Ha, ha! Yep; it's true. My own veterinarian helped me more than anyone during the initial stages of Graves' Disease. So really, it wasn't a joke but I like to "humorize" things and I don't even know if that is a word but it should be.


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## mememe

My experience about letting the new doc in on my experience with the old doc was pointless. He asked me what my old doc said and when I told him, he agreed. There was no "investigating", so at least from my experience, I've learned to let the doc start from scratch.


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## Andros

mememe said:


> My experience about letting the new doc in on my experience with the old doc was pointless. He asked me what my old doc said and when I told him, he agreed. There was no "investigating", so at least from my experience, I've learned to let the doc start from scratch.


I ditto that big-time. That has been my experience as well.


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## lavender

Andros said:


> I ditto that big-time. That has been my experience as well.


Thanks for sharing your experience. My plan at this point is to take in all my labs. Come in with a written list of my symptoms and history of problems (which may be a novel). Tell the doc what labs I want tested and why.

My first priority is to get a script for Armour or at the very least some cytomel. Then to get ferretin and adrenal functioning tested (which may have to wait till after the holidays since I fly to Canada for 2 weeks the day after my appointment).

I also want the doc to test for additional auto-immune disorders, especially lupus. Would it be best to bring this up at the first appointment or to wait until I go in for follow up? I was thinking about bringing in a list of the symptoms of lupus with my own comments about my experience with each one, but I don't want the doc to write me off as a hypochondriac or to overwhelm her at the first appointment.


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## CA-Lynn

There's no harm in telling the doctor that you don't wish to share what the other doctor said as you want his independent opinion.

As far as doctors talking over the patient's head: I think patients need to become more proactive and stand up and say, "Hey, I don't understand - explain it to me." I recall years ago I saw a doctor who ducked in for two minutes and out he went and you were left wondering what the heck just happened. He had an excellent reputation, though. So the next time I went back I repositioned myself to block the door and forced him into answering my questions.

As for it taking so long to get in to see a specialist, sadly that's how it is with those doctors with excellent reputations.


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## lavender

Ok, I am going to stay off the board for the rest of the day since it is a holiday, but I just wanted to post this.

I checked my voice mail last night to find that I missed a call from the endo's office at 4:30 yesterday. His nurse was calling my to give me the results of my bloodwork from two weeks ago. The office is closed until Monday. Even if I had gotten the call, if I had any questions for the doc, it would have taken until Monday to get them answered anyway!

I am finding this almost comical at this point. Except that it's my health and this guy obviously is not concerned with it.

I am really tempted to give her a piece of my mind when I do call back on Monday, but I am thinking that it might be more productive to calmly and politely tell her that waiting two weeks to hear back from a doctor when I am not feeling well is really not acceptable to me and asking if I can see one of the other endos in that office.


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## Andros

lavender said:


> Ok, I am going to stay off the board for the rest of the day since it is a holiday, but I just wanted to post this.
> 
> I checked my voice mail last night to find that I missed a call from the endo's office at 4:30 yesterday. His nurse was calling my to give me the results of my bloodwork from two weeks ago. The office is closed until Monday. Even if I had gotten the call, if I had any questions for the doc, it would have taken until Monday to get them answered anyway!
> 
> I am finding this almost comical at this point. Except that it's my health and this guy obviously is not concerned with it.
> 
> I am really tempted to give her a piece of my mind when I do call back on Monday, but I am thinking that it might be more productive to calmly and politely tell her that waiting two weeks to hear back from a doctor when I am not feeling well is really not acceptable to me and asking if I can see one of the other endos in that office.


They did that on purpose knowing full well the doc is already out of town and unavailable for the holiday weekend.

This is a rotten thing to make a person wait so long when they feel so sick. In fact, this sort of treatment triggers the antibodies and autoantibodies thus making one even sicker.

Bleck.


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## lavender

I finally got in contact with the endo's office yesterday, and big surprise, they said all my bloodwork is "normal." Then, the nurse said the doctor wanted to know if I am still taking a medication HE TOOK ME OFF OF at my last visit 2 months ago! Then she asked me about my calcium supplements which he flat out said he did not care what I did about at my last appointment! I am beyond frustrated! I posted my results on another thread, but will post them again:

11/11
FT3 213 (200-490)
Free T4 1.8 (.7-1.8)
TSH 3.42 (.5-6)
Calcium 9.3 (8.5-10.5)
PTH 35.4 (8.2-83.5)

Now, my dilemma, I am scheduled to see him next week. Since I can't get into the new doc for 3 weeks, and don't know if she will treat my thyroid since she is a family practitioner, and all the synthroid samples I have expire in a few days, Do I keep the appointment and state my case for some T3 replacement (or even armour) or just cancel the appointment all together? I know this guy is a rotten doctor, and I want to see someone new, but in the meantime, I feel really awful, and I am very impatient to feel better soon. I just want to be able to function again.

Funny thing, the nurse never mentioned getting blood work done again for my appointment, even though these labs will be a month old by the time I see the doc next week. I am going to call tomorrow to see if they can order some, but feel very skeptical about getting any type of response.


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## McKenna

I'm so sorry for the way this doc is treating you! How frustrating!

I would maybe keep the appointment just to see what he says, and because you're almost out of meds. At least he can prescribe more for you until you can get into a new doc. But I would still look at finding a new doc. It wouldn't hurt to call the new doc's office and see if he has any patients on Armour or cytomel. Then you will know before hand.


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## lavender

I think I will keep the appointment to get meds and perhaps at least voice my concerns. I'm just frustrated that I keep having to pay for all this!

I know someone who sees another doc in the new doc's office who prescribes her Armour. Not sure what this will say about the doc I am seeing, but it is a holistic medicine center that incorporates alternative practices into treatment. I think I am just to afraid to get my hopes up after so many problems with docs this past year.


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## McKenna

I know what it's like to not fully trust your doc. My endo and I have had a very bumpy relationship from the beginning. We're finally at a point where we're "semi" on the same page.



> Not sure what this will say about the doc I am seeing, but it is a holistic medicine center that incorporates alternative practices into treatment.


That sounds very promising. They tend to me less narrow-minded.


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## lavender

Well, I changed my mind and canceled the endo appointment for tomorrow.

I heard back from the endo's office and they said it was too soon to run new labs, even though they are almost a month old. Not sure how he would titrate a dose on month old labs.

Realized I had refills on a bottle of levothyroxine at the same dose as the synthroid I have been on sitting around and got that filled. Have tons of synthroid samples from my PCP around, they just all expired yesterday! I suspect that the synthroid may be causing the rash on my chest, and want to see if it goes away now that I am back on the levo.

It's only two weeks until I see the new doc now, and I really didn't want to waste the money to see the endo so he can tell me there's nothing he can do since my thyroid levels are just fine. I'm done with him and just want to start over with someone new. Canceling the physical I have with the old primary care doc on Friday too. She's worthless to me at this point.

Sigh. I just hope the new doc can help. Anyone know if there's any risk to changing from levo straight over to armour or another dessicated thyroid? Armour site says 1 1/2 grains is equal to my dose of levo. Does the change need to be gradual or can I do it all at once? I want to be prepared when I see the new doc. I really want to change meds ASAP, but I leave for two weeks in Canada the day after my appointment and don't want to do anything that will land me in an ER out of country.


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## McKenna

I was on a low dose of synthroid before Armour, (25mcg) and my endo had me stop it for a week before starting an equivalent dose of Armour. I don't know what his reasons for doing it that way were.

After my TT, I upped my dose to 1/2 grain a week after, then my endo wanted to up it to 1 grain at two weeks post op, but I refused and asked him if I can go up to 3/4 grain first. That worked and now I'm on 1 grain and will lab in January.

My opinion is that you might want to consider not switching directly to an equivalent dose of armour, but a smaller dose at first, and then go up so you can adjust to the T3.

Good luck with the new doc!


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## lavender

Thanks, I read a similar suggestion last night that said to start on no more than 1 grain of armour and go up gradually from there to let your body get used to it.

My theory is that it has to do with T4 having a half life of 7 days and T3 having a half life of 1-2 days. Meaning it takes much longer for T4 to reach peak effectiveness and leave the body than T3. I wonder if doing a full switch could lead to a hyperthyroid state.


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## Andros

lavender said:


> Well, I changed my mind and canceled the endo appointment for tomorrow.
> 
> I heard back from the endo's office and they said it was too soon to run new labs, even though they are almost a month old. Not sure how he would titrate a dose on month old labs.
> 
> Realized I had refills on a bottle of levothyroxine at the same dose as the synthroid I have been on sitting around and got that filled. Have tons of synthroid samples from my PCP around, they just all expired yesterday! I suspect that the synthroid may be causing the rash on my chest, and want to see if it goes away now that I am back on the levo.
> 
> It's only two weeks until I see the new doc now, and I really didn't want to waste the money to see the endo so he can tell me there's nothing he can do since my thyroid levels are just fine. I'm done with him and just want to start over with someone new. Canceling the physical I have with the old primary care doc on Friday too. She's worthless to me at this point.
> 
> Sigh. I just hope the new doc can help. Anyone know if there's any risk to changing from levo straight over to armour or another dessicated thyroid? Armour site says 1 1/2 grains is equal to my dose of levo. Does the change need to be gradual or can I do it all at once? I want to be prepared when I see the new doc. I really want to change meds ASAP, but I leave for two weeks in Canada the day after my appointment and don't want to do anything that will land me in an ER out of country.


I recommend that you not start on that dose because 1 1/2grains contains 13.5 mcgs. of T3. It would be best to stop taking any other thyroxine replacement and start on 1/2 grain for 8 weeks, lab and increase by either 1/4 grain or 1/2 grain every 8 weeks until you feel tip top. You do not need more T4 than is already in your Armour because T3 is your active hormone.

Armour has 38 mcg. of T4 and 9 mcg. T3 per grain.

The above is my experienced humble opinion. I have seen many who have taken too much to start w/, they have gone hyper and never ever could they tolerate Armour in any dose ever again. That is sad. This is basically true w/ Cytomel also.


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## lavender

Andros said:


> I recommend that you not start on that dose because 1 1/2grains contains 13.5 mcgs. of T3. It would be best to stop taking any other thyroxine replacement and start on 1/2 grain for 8 weeks, lab and increase by either 1/4 grain or 1/2 grain every 8 weeks until you feel tip top. You do not need more T4 than is already in your Armour because T3 is your active hormone.
> 
> Armour has 38 mcg. of T4 and 9 mcg. T3 per grain.
> 
> The above is my experienced humble opinion. I have seen many who have taken too much to start w/, they have gone hyper and never ever could they tolerate Armour in any dose ever again. That is sad. This is basically true w/ Cytomel also.


My concern is that going from 150 mcg synthroid to 1/2 grain armour (which I think is equivalent to 50 mcg synthroid) would make me severely hypothyroid, worse than I am right now. Even dropping to 137 synthroid was disastrous for me. Am I basically going to just have to deal with the hypo for months until this can all get titrated and balanced out? This all just feels so overwhelming and hopeless to me.


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## Andros

lavender said:


> My concern is that going from 150 mcg synthroid to 1/2 grain armour (which I think is equivalent to 50 mcg synthroid) would make me severely hypothyroid, worse than I am right now. Even dropping to 137 synthroid was disastrous for me. Am I basically going to just have to deal with the hypo for months until this can all get titrated and balanced out? This all just feels so overwhelming and hopeless to me.


Okay; let's say you start on one grain; okay?? That would be 9 mcgs. of T3 entering your system which you did not have before. T3 is your active hormone. It will give you a fast pop. It is like speed.

I think a little differently as you can see. To me Synthroid cannot be equivalent to Armour no matter what the dose because they are entirely 2 different pharmaceuticals.


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## lavender

Thanks for the info, I do appreciate it, and I will take your advice with me to the doc. I don't want to make matters worse.

I am just so anxious to be able to get back to living and this feels like a long process. My docs have let me get sick for far too long. I think I could use some speed right now. I went out with some friends for less than 2 hours Saturday night and fell asleep sitting up (it was 8:00). Sadly, this is the norm for me now.


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## McKenna

FWIW, I was (and still am) pretty hypo. But....I feel that the T3 in the Armour has prevented me from feeling the full effects of hypo. I'm not yet at a full dose of Armour and still in the titrating process.

These were my number one week post TT:
TSH 10.61 (.450 - 4.50)
Free T4 .86 (.82 - 1.77)
Free T3 3.3 (2.0 - 4.4)

And I did not feel as bad as you would think with such a high TSH and low T4. My opinion is that the T3 is keeping me afloat b/c its a new batch of hormone each day. I'm sitting on one grain right now until the beginning of Jan.


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## lavender

McKenna said:


> FWIW, I was (and still am) pretty hypo. But....I feel that the T3 in the Armour has prevented me from feeling the full effects of hypo. I'm not yet at a full dose of Armour and still in the titrating process.
> 
> These were my number one week post TT:
> TSH 10.61 (.450 - 4.50)
> Free T4 .86 (.82 - 1.77)
> Free T3 3.3 (2.0 - 4.4)
> 
> And I did not feel as bad as you would think with such a high TSH and low T4. My opinion is that the T3 is keeping me afloat b/c its a new batch of hormone each day. I'm sitting on one grain right now until the beginning of Jan.


So glad to hear the positive results. Hoping for a Merry Christmas that I can stay awake for in Ottowa. Don't want to do too much Armour and end up in an ER hyper there!


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## lavender

My Christmas wish was answered! I saw my new doctor today, and she was wonderful. She looked at the blood work from my old doctor, listened to my symptoms, and said she thought I should try Amour! I didn't have to ask of fight for it or anything! I am so thrilled! She also had some dietary suggestions for me, but thought I ought to wait to try them out so I could find out if the switch to Armour helps. This is all perfect news to me. Since I will be traveling for the next two weeks, I think a dietary change would just be overwhelming right now.
I am off to a second pharmacy. The first did not have any Armour in stock and called around to find someone who did. 
I will be leaving in the morning and may not be on the boards much until I return! Happy Holidays!!!


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## McKenna

Congratulations! I'm glad your new doc worked out and very glad she prescribed Armour! I can't wait to hear how you feel on it.


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## sarah_r

I just wanted to share my latest blog post about How I healed my thyroid condition, perhaps there might be some new or alternative ideas to be found for others here. http://innerbeam.blogspot.com/2010/12/how-i-healed-my-thyroid-condition.html


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## lavender

I just wanted to share my progress. One week on Armour. I have tons more energy. I am participating in life again. Naps are fewer and further between. I love being able to stay awake for life again! My pain levels are decreasing drastically as well. I am now down to what I considered normal pain levels before my thyroid went berserk in the spring! I am noticing some occasional heart palpitations, but nothing that feels unmanageable.


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## McKenna

Glad to hear it's going well! What dose did you start on?


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## lavender

Doc wanted me to start at 120, but that seemed too high to me. I started with 60 for a week, then bumped up to 90. I am waiting for the palpitations to subside a bit before going up to 120. Just trying to listen to my body and go from there since that usually works best for me. Compared to all the heart palpitations I have had this past year, this has been really minimal, but I do want to avoid over-stressing my heart out more.

It has been pretty exciting to feel my energy returning. Spending two weeks without my car due to travel. Relying on public transportation is pretty scary when I have no energy. Last night I was out and decided just to walk home rather than wait for the bus. This is just huge progress for me.

Planning on ringing in the New Year at Old Port Montreal Bash if I am feeling up to it!


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## daisydaisy

Go there yourself and ask for a copy. They don't need to know if the doc has seen it yet or not. You are entitled to a copy. If they won't give you one sit there until they see you. Its your body, they are not suffering you are. Thats what i would do


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## lavender

Just wanted to post an update. I have been on Armour for about 6 weeks now, and I am feeling tons better. I can think and remember things again. Loads more energy, all over body pain has subsided. My fingers don't hurt anymore, and the swelling in my hands has gone down. There is still some swelling in my left ankle. I have had some on-going heart palpitations and racing, up to 108 a few days ago.

I saw my new doc for follow up today. I was a bit concerned when a medical student came in to talk with me first, but I still had a full visit with my doc. She drew labs for a thyroid panel and was concerned that I may be on too high of a dose of Armour. She said if my levels are not high, she will refer me for a cardiac study. I will get results in the mail inthe nest week. Told me to go to the ER if I feel dizzy when my heart starts acting up.

This is such a different response than I got from the last doc who told me the dizziness and heart palpitations were just anxiety. I am glad that my issues are actually getting validated and that she is willing to follow up but a bit concerned about my heart, not thrilled with the prospect of another ER visit.


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## Andros

lavender said:


> Just wanted to post an update. I have been on Armour for about 6 weeks now, and I am feeling tons better. I can think and remember things again. Loads more energy, all over body pain has subsided. My fingers don't hurt anymore, and the swelling in my hands has gone down. There is still some swelling in my left ankle. I have had some on-going heart palpitations and racing, up to 108 a few days ago.
> 
> I saw my new doc for follow up today. I was a bit concerned when a medical student came in to talk with me first, but I still had a full visit with my doc. She drew labs for a thyroid panel and was concerned that I may be on too high of a dose of Armour. She said if my levels are not high, she will refer me for a cardiac study. I will get results in the mail inthe nest week. Told me to go to the ER if I feel dizzy when my heart starts acting up.
> 
> This is such a different response than I got from the last doc who told me the dizziness and heart palpitations were just anxiety. I am glad that my issues are actually getting validated and that she is willing to follow up but a bit concerned about my heart, not thrilled with the prospect of another ER visit.


Lavender!! How nice of you to give us an update!! What is your dose amount currently?

It is a good sign that you are healing and I think that Armour was just the medication that you personally needed.

Consider low ferritin as a cause of arrhythmia. That is if you have not done so already.
Ferritin http://www.thewayup.com/newsletters/081504.htm


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## lavender

I am taking 120 mg which I think is 2 grains, and yes it was exactly what I needed. 
The other thing I noticed today was that this has been the first doc appointment since my surgery where I have not gained any weight! Woo-Hoo! 
I have read the ferretin info before and completely forgot to bring it up with my doctor. Somehow I got in her office this morning and forgot everything. I think I'll have to make a list the next time I go.


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## Andros

lavender said:


> I am taking 120 mg which I think is 2 grains, and yes it was exactly what I needed.
> The other thing I noticed today was that this has been the first doc appointment since my surgery where I have not gained any weight! Woo-Hoo!
> I have read the ferretin info before and completely forgot to bring it up with my doctor. Somehow I got in her office this morning and forgot everything. I think I'll have to make a list the next time I go.


I had to chuckle! If your ferritin is low, it could cause one to be forgetful!! LOL!!

Ferritin http://www.thewayup.com/newsletters/081504.htm

2 grains is 120 mg.. Exactly right!


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## lavender

Well, I read the anemia symptoms and the only one I can directly identify with is the heart palpitations, except that mine are not happening on exertion. I mostly notice them when laying down or especially when I wake up in the morning. I actually started taking my armour at night because I noticed that it makes the heart palpitations less during the day and my energy seems more consistent through the day. When I took it in the morning, I felt like I wanted to collapse by about 6 pm.

As far as the other symptoms: fatigue, pain, depression, memory, cognition; they have gotten so much better with just the armour, and I have been sick for so long that I don't remember what "normal" was like. That was one problem I had with the doc yesterday. The medical student asked me if something (and for the life of m I can't remember what) was normal for me, and all I could say was that nothing has been normal in my body in over a year. And when I think back through all the fibromyalgia stuff, it's really been years since my body felt normal. I can't pinpoint a time when things felt "normal" for me at all. Even when I was completing my undergrad, I had bouts of unexplained fatigue. I just never sought out any medical care.

I know I am at risk for low iron since I am a vegetarian. I also know I was slightly anemic last spring before I ended up in the hospital. At the time, I baked with blackstrap molasses and ate a bunch of cream of wheat to boost my iron. I bought a cast iron skillet a couple months back and use it to cook everything possible. Plus, I eat tons of nuts and seeds and quite a bit of fish.

Is there any risk to supplementing with iron without a ferretin blood test to see if I feel better?


----------



## Andros

lavender said:


> Well, I read the anemia symptoms and the only one I can directly identify with is the heart palpitations, except that mine are not happening on exertion. I mostly notice them when laying down or especially when I wake up in the morning. I actually started taking my armour at night because I noticed that it makes the heart palpitations less during the day and my energy seems more consistent through the day. When I took it in the morning, I felt like I wanted to collapse by about 6 pm.
> 
> As far as the other symptoms: fatigue, pain, depression, memory, cognition; they have gotten so much better with just the armour, and I have been sick for so long that I don't remember what "normal" was like. That was one problem I had with the doc yesterday. The medical student asked me if something (and for the life of m I can't remember what) was normal for me, and all I could say was that nothing has been normal in my body in over a year. And when I think back through all the fibromyalgia stuff, it's really been years since my body felt normal. I can't pinpoint a time when things felt "normal" for me at all. Even when I was completing my undergrad, I had bouts of unexplained fatigue. I just never sought out any medical care.
> 
> I know I am at risk for low iron since I am a vegetarian. I also know I was slightly anemic last spring before I ended up in the hospital. At the time, I baked with blackstrap molasses and ate a bunch of cream of wheat to boost my iron. I bought a cast iron skillet a couple months back and use it to cook everything possible. Plus, I eat tons of nuts and seeds and quite a bit of fish.
> 
> Is there any risk to supplementing with iron without a ferretin blood test to see if I feel better?


There would be a risk if you don't need iron; absolutely! Hey; good for you on the cast iron, molasses and etc.. I love molasses. I like it on my rolled oats.

I think you may have a handle on the ferritin thing. Stay on the pathway. It's definitely is a healing one. Love how you are eating. I do the same. Lots of seeds and nuts too. Honey, yogurt, unpasturized vinegar.....................


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## lavender

Well, after reading so much on this forum about ferretin, I decided to look at how I could add iron to my diet naturally. Bought the cast iron skillet at a thrift store, and scrubbed it down. It was worth it because it's one of the old ones with a super smooth cooking surface, and it's like cooking on glass. It's really easy to take care of, which surprised me. I looked up how to take care of it on you tube, and I cook in it as much as possible. Now I'm on the hunt for old cast iron since I like cooking in it so much.

What really scared me when I saw the doctor was that she told me to go to the ER if I start feeling dizzy or tired when my heart is racing. Well, I have felt dizzy or tired more times than I could count. And the thought of having to go back to the hospital is not at the top of my list of things to do. I just want to go back to having a normal healthy life.


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## Andros

lavender said:


> Well, after reading so much on this forum about ferretin, I decided to look at how I could add iron to my diet naturally. Bought the cast iron skillet at a thrift store, and scrubbed it down. It was worth it because it's one of the old ones with a super smooth cooking surface, and it's like cooking on glass. It's really easy to take care of, which surprised me. I looked up how to take care of it on you tube, and I cook in it as much as possible. Now I'm on the hunt for old cast iron since I like cooking in it so much.
> 
> What really scared me when I saw the doctor was that she told me to go to the ER if I start feeling dizzy or tired when my heart is racing. Well, I have felt dizzy or tired more times than I could count. And the thought of having to go back to the hospital is not at the top of my list of things to do. I just want to go back to having a normal healthy life.


How do you feel now?

That is totally awesome about your skillet. We have a really old one too and it is worth it's weight in gold.

You "are" going to have a normal healthy life. Count on it. You are doing all the right things. It takes a while; about 18 months. That body "is" healing!


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## lavender

I feel ok right now. I just keep waking up with these heart palpitations/racing heart in the morning which is no fun. Otherwise, I feel pretty good.


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## Andros

lavender said:


> I feel ok right now. I just keep waking up with these heart palpitations/racing heart in the morning which is no fun. Otherwise, I feel pretty good.


That is not fun but I think eventually that will go away. Do you take Magnesium?

http://www.umm.edu/altmed/articles/magnesium-000313.htm

I take 400 mgs. per day.


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## lavender

yup, Magnesium, Vitamin D and Calcium because my parathyroids were not working well after surgery.
Fish Oil
Grapeseed Extract


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## Andros

lavender said:


> yup, Magnesium, Vitamin D and Calcium because my parathyroids were not working well after surgery.
> Fish Oil
> Grapeseed Extract


Perhaps the magnesium before retiring? It might make a difference in the morning!

You "are" on top of things; big-time!


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## lavender

My doctor checked my magnesium level about 6 weeks ago, and it was really good, on the high end of normal. I have been taking my supplements during the day. I could try taking them with supper to get them in later in the day, but I think I have done this before and haven't noticed a difference. I try to take them early because if I wait, I end up forgetting altogether.


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## lavender

I received my lab results back today, and I am actually a little bit hyper.

TSH .639 (.55-4.78)
Free T3 4.5 (2.3-4.2)
Free T4 1.2 (.89-1.76)

I am taking 120 mg (2grains) Armour. The doctor was willing to keep me on this dose, but when I called back about my on-going heart palpitations/racing heart, she decided to lower my dose to 90 mg (1.5 grains). I have another appointment in a month to re-evaluate and check labs, and decide if I need a referral to a cardiologist.

I think I feel pretty good about this decision overall. I am worried about the fact that I am still not menstruating which is a signal to me that my dose may be too high, and I would really like to see my heart calm down without additional medical intervention. I can also ask her about checking my ferretin level when I see her in a month.


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## Andros

lavender said:


> I received my lab results back today, and I am actually a little bit hyper.
> 
> TSH .639 (.55-4.78)
> Free T3 4.5 (2.3-4.2)
> Free T4 1.2 (.89-1.76)
> 
> I am taking 120 mg (2grains) Armour. The doctor was willing to keep me on this dose, but when I called back about my on-going heart palpitations/racing heart, she decided to lower my dose to 90 mg (1.5 grains). I have another appointment in a month to re-evaluate and check labs, and decide if I need a referral to a cardiologist.
> 
> I think I feel pretty good about this decision overall. I am worried about the fact that I am still not menstruating which is a signal to me that my dose may be too high, and I would really like to see my heart calm down without additional medical intervention. I can also ask her about checking my ferretin level when I see her in a month.


Gosh! Well, depending on what time you took your Armour and what time you took your labs; T3 may be high or not.

About 6 months ago, I took my "new Armour" the same morning as labs just as I have done for so so many years, I don't remember. Egads. FT3 came back at 705. Doc and I freaked but she even commented that I did not seem hyper nor did I feel hyper.

Now I take the new Armour "after" my labs and my FT3 comes in @ below the mid-range. LOL!!

I am certain the new Armour is more quickly absorbed and better absorbed. That in fact is what the fuss was all about and the FDA made them change the filler to something more acceptable.

Glad to hear you will have your ferritin checked next time around. Will be "very" interested in that.
Of course we know that low ferritin can cause heart palps and much more.


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## lavender

I took the Armour at least 4 hours before the labs were drawn. Probably closer to 6 hours. Now I wish I had written it down because I know I was aware that I needed to not take it right before I had my blood drawn but I can't remember exactly how long it was.

I do feel a bit hyper. Having trouble maintaining a sleep schedule. Eyes are feeling dryer than they were before the Armour. Absent menstrual cycle and increasing heart palpitations. Fatigue that was initially better on the Armour seems to be increasing.

I would like to see how I feel on the lower dose, and I am glad that I see the doctor in a month. If this dose is too low, I won't have to be miserable for long.

I will say for this new doc that even though it still took two weeks to get my labs back, after I called the office on Friday, she called me personally on a Saturday, left a detailed message, and called in a new script. This is a huge improvement over my old endo who only sent messages through incompetent staff days later and pretty much refused to follow up on anything between appointments. Even my last family doc never called me herself.

Right now, I am just anxious about my heart. Sometimes it's pumping fast, other times just strangely out of rhythm. I was so relieved when the heart palpitations stopped after my surgery. It's frustrating that they keep returning, and I keep getting myself all worked up about the possibility that being so hyper for so long may have done permanent damage to my heart. I know that's not likely the case. But I have a hard time not worrying when I am home alone at night and my heart feels like it's playing strange tricks on me.


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## Andros

lavender said:


> I took the Armour at least 4 hours before the labs were drawn. Probably closer to 6 hours. Now I wish I had written it down because I know I was aware that I needed to not take it right before I had my blood drawn but I can't remember exactly how long it was.
> 
> I do feel a bit hyper. Having trouble maintaining a sleep schedule. Eyes are feeling dryer than they were before the Armour. Absent menstrual cycle and increasing heart palpitations. Fatigue that was initially better on the Armour seems to be increasing.
> 
> I would like to see how I feel on the lower dose, and I am glad that I see the doctor in a month. If this dose is too low, I won't have to be miserable for long.
> 
> I will say for this new doc that even though it still took two weeks to get my labs back, after I called the office on Friday, she called me personally on a Saturday, left a detailed message, and called in a new script. This is a huge improvement over my old endo who only sent messages through incompetent staff days later and pretty much refused to follow up on anything between appointments. Even my last family doc never called me herself.
> 
> Right now, I am just anxious about my heart. Sometimes it's pumping fast, other times just strangely out of rhythm. I was so relieved when the heart palpitations stopped after my surgery. It's frustrating that they keep returning, and I keep getting myself all worked up about the possibility that being so hyper for so long may have done permanent damage to my heart. I know that's not likely the case. But I have a hard time not worrying when I am home alone at night and my heart feels like it's playing strange tricks on me.


Yeah; the Armour peaks at about 4 to 5 hours after ingestion. LOL!! I did a lot of research on this as you might well expect. LOL!!

Well, my dear sweet friend. I do worry when you say you are symptomatic like this.

Ferritin definitely plays a role if it is too low; that is a given.


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## lavender

Thanks, this whole heart issue has been keeping me up at night since the last doc appointment when she gave me a list of reasons to go to the ER. Every time my heart starts feeling funny, I wonder if I should go, but then I don't go because it doesn't seem that bad, I don't want to be one big hypochondriac, and I don't want to be in the hospital.

It seems possible that my T3 had peaked when I had my labs drawn, but my TSH is pretty low too. I would like to see how I do at a lower dose and go from there. Hopefully that plus checking on my ferretin and adding some iron if necessary will be the trick!


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## lavender

Finally got some labs back from my doc and found out why I have about as much strength as a wet noodle. I thought I was being lazy and unmotivated perhaps really depressed not being able to get my schoolwork done for the last 6 weeks, but now I get it. I'm in finals week, and having a hard time getting papers finished. Think I'm going to call the school and talk to the disability person tomorrow to ask for an extension based on medical issues. I don't want to fail this semester. I can barely read or process anything right now. I'm exhausted, in pain, and I can barely get myself dressed and out of the house every day.

4/4/2011
90 mcg Armour for 6 weeks
TSH: 29.531 (.55-4.78) WHAT????? 29.5?????
T3 uptake .83 (.75-1.23)
Total T4 5.9 (4.5-10.9)
Free Thyroxin Index 4.9 (4.2-13)

Ferretin 7 (10-291)

She did a CBC, and some other tests. I'm only posting the abnormal ones:

Mean Cell Volume 78.6 (81-100)
RBC Distribution 17.2 (11.6-14.8)

I seriously don't know why she didn't order a FT3 and FT4 when I am on Armour. She called me after she reviewed the tests to tell me she wants me to go in and repeat them because she was concerned the test was faulty. That was at least 2 weeks ago, and I have not gone because I haven't had the energy to get myself out of the house on any day I haven't had class. After seeing this, I'm going tomorrow. I really hope she's ordered the right tests this time. I may ask the lab before they stick me. I don't actually see her, but perhaps they can call and get the right ones authorized.

She raised my Armour dose and had me start iron supplements two weeks ago. I'm now taking 105 mcg/day Armour.

What concerns me is the huge jump in my TSH.
Here's my labs from the last time she tested me. I had been on 120 mcg Armour for a month. She lowered it at my request because of heart palps and hyper symptoms.

2/11/11
TSH .639 (5.5-4.78)
FT3 4.5 (2.3-4.2)
FT4 1.2 (.89-1.76)

Before that:

11/11/10
150 mcg synthroid for 1 month
FT3 213 (200-490)
Free T4 1.8 (.7-1.8)
TSH 3.42 (.5-6)
Calcium 9.3 (8.5-10.5)
PTH 35.4 (8.2-83.5)

So, what in the world would cause my TSH to go from .63 to 29.5 in two months? I'd say it was a total fluke except the total T4 is so darn low. I have no idea how to read FTI or T3 uptake. The lowered dose wasn't that much lower. Could it be because I was really active hiking daily the week before the labs were run? The only other canges I made during that time was to try a gluten free diet for a few weeks. I was eating gluten at the time of the test, but a very small amount. I started taking a different type of Fish Oil that my doc recommended. I also started taking nasonex, which is basically a steroid shot up your nose, as well as zyrtec for allergies a week earlier.


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## McKenna

Awww, Lavender. I feel for you!

I'm not far behind you....on 90 mgs of Armour for 6 days per week and 60mgs on one day (stupid endo!) and I'm feeling rough. I plan to go to my family doc to get him to help me. I know I need to have my Armour upped.

The endo put me on this stupid schedule b/c he was concerned about my TSH being really low in March. I think it was .08-something. Even though I had NO hyper symptoms. My t4 was low (but that's to be expected on natural) and my T3 was mid range, which was great. Sigh.... And I just started with those awful arm and leg pains again, depressed, anxious, foggy head, and tired.

I hope you can get it sorted out. That's a HUGE jump in TSH.

Have you had your antibodies tested lately? Mine won't go down so I've started a gluten free diet too to see if it helps.


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## lavender

that's not a lot of armour for someone without a thyroid! I second that, stupid endo!

I knew I needed an increase 6 weeks ago, and finally convinced her after I called about the lab results two weeks ago. Since Armour only comes in 60, 90 and 120 (is it mgs or mcgs? I can't keep it straight) doses, I found out it does come in 15 mgs, and asked her to add that to the 90, bringing me up to 105. I've been on that for two weeks now and can still barely get off the couch. Plus it seems like every little thing I do totally drains my energy. Walking my friend's dog for 30 minutes whiped me out for a week! I love doing the exercise, just not the results!

My doc has not checked any antibodies. I didn't know that they were important now that my thyroid was gone. The lab she ran today was just TSH. Stupid doctor! When will they learn that Free T3 and Free T4 are essential for us? Well, I called the office, and was able to schedule an appointment for tomorrow so I can let her know how bad I feel and hopefully clarify labs and such. I also got info from the lab today about an on-line system for checking my labs. Doc's office tells me I can set it up in the office tomorrow. So, at least I have a plan.

I hope the gluten free helps you. It didn't help me at all from what I could tell. I honestly don't think its possible to sort anything out without the right amount of hormones coming into my body. maybe if you let the endo know how you're feeling now, he'll let you go back up to 90 mgs every day. If not, you could ask about adding 15 to the 60.


----------



## Andros

lavender said:


> Finally got some labs back from my doc and found out why I have about as much strength as a wet noodle. I thought I was being lazy and unmotivated perhaps really depressed not being able to get my schoolwork done for the last 6 weeks, but now I get it. I'm in finals week, and having a hard time getting papers finished. Think I'm going to call the school and talk to the disability person tomorrow to ask for an extension based on medical issues. I don't want to fail this semester. I can barely read or process anything right now. I'm exhausted, in pain, and I can barely get myself dressed and out of the house every day.
> 
> 4/4/2011
> 90 mcg Armour for 6 weeks
> TSH: 29.531 (.55-4.78) WHAT????? 29.5?????
> T3 uptake .83 (.75-1.23)
> Total T4 5.9 (4.5-10.9)
> Free Thyroxin Index 4.9 (4.2-13)
> 
> Ferretin 7 (10-291)
> 
> She did a CBC, and some other tests. I'm only posting the abnormal ones:
> 
> Mean Cell Volume 78.6 (81-100)
> RBC Distribution 17.2 (11.6-14.8)
> 
> I seriously don't know why she didn't order a FT3 and FT4 when I am on Armour. She called me after she reviewed the tests to tell me she wants me to go in and repeat them because she was concerned the test was faulty. That was at least 2 weeks ago, and I have not gone because I haven't had the energy to get myself out of the house on any day I haven't had class. After seeing this, I'm going tomorrow. I really hope she's ordered the right tests this time. I may ask the lab before they stick me. I don't actually see her, but perhaps they can call and get the right ones authorized.
> 
> She raised my Armour dose and had me start iron supplements two weeks ago. I'm now taking 105 mcg/day Armour.
> 
> What concerns me is the huge jump in my TSH.
> Here's my labs from the last time she tested me. I had been on 120 mcg Armour for a month. She lowered it at my request because of heart palps and hyper symptoms.
> 
> 2/11/11
> TSH .639 (5.5-4.78)
> FT3 4.5 (2.3-4.2)
> FT4 1.2 (.89-1.76)
> 
> Before that:
> 
> 11/11/10
> 150 mcg synthroid for 1 month
> FT3 213 (200-490)
> Free T4 1.8 (.7-1.8)
> TSH 3.42 (.5-6)
> Calcium 9.3 (8.5-10.5)
> PTH 35.4 (8.2-83.5)
> 
> So, what in the world would cause my TSH to go from .63 to 29.5 in two months? I'd say it was a total fluke except the total T4 is so darn low. I have no idea how to read FTI or T3 uptake. The lowered dose wasn't that much lower. Could it be because I was really active hiking daily the week before the labs were run? The only other canges I made during that time was to try a gluten free diet for a few weeks. I was eating gluten at the time of the test, but a very small amount. I started taking a different type of Fish Oil that my doc recommended. I also started taking nasonex, which is basically a steroid shot up your nose, as well as zyrtec for allergies a week earlier.


Oh, my gawd!! Girlfriend...............................!!!! What in the world is going on?

MCV.................. decreased with iron deficiency and thalassemia

But....................you are taking iron, using cast iron, eating foods high in iron and I know you take your Armour faithfully!!!

Something else is going on to cause the anemia, I am thinking. I am so upset and so worried for my dear sweet hard-working Buckeye friend!


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## lavender

The labs were done before I started taking Iron. But I'm not feeling OK. It's finally clicked that not being able to get dressed and out of my house for weeks is a sign that something's really wrong. That not being able to understand written instructions is important. Seeing the doc tomorrow. Will have a new TSH result from today.

Don't even know what to ask the doc tomorrow. I think I just need to make a list of how I've been for the past few weeks and go from there.


----------



## Andros

lavender said:


> The labs were done before I started taking Iron. But I'm not feeling OK. It's finally clicked that not being able to get dressed and out of my house for weeks is a sign that something's really wrong. That not being able to understand written instructions is important. Seeing the doc tomorrow. Will have a new TSH result from today.
> 
> Don't even know what to ask the doc tomorrow. I think I just need to make a list of how I've been for the past few weeks and go from there.


Like you have said, you need the FREES done. We must have those; it is essential.

Look how active you are; and you are a youngster compared to me at the age of 68. I am on 3 1/2 grains of Armour daily for Pete's sakes. Yeah, I am active but do act my age. LOL!!


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## lavender

I know I need the frees. TSH is ridiculous. I want to have that conversation with her tomorrow if I can get it out in a coherent way. I'm having trouble putting words together and understanding words right now. Do you have anything I could print out and take to her to explain it? She's not an endo, so maybe she doesn't know what to order. And then maybe my insurance company is limiting what she can do.

Is it possible that the dose of Armour that is working when I am sitting around doing schoolwork is not enough when I'm really active and hiking for several days. Like, is hiking, which could feel really good at the time I'm doing it, depleting my thyroid stores and turning me into a wet noodle that can't get off the couch?

Or is there some other health issue making my thyroid drugs not work? You might not be able to answer that. I'm just trying to get some sense of what's going on with me right now. I really help my doc can help me sort this out. Things are really not OK in my world.


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## Andros

lavender said:


> I know I need the frees. TSH is ridiculous. I want to have that conversation with her tomorrow if I can get it out in a coherent way. I'm having trouble putting words together and understanding words right now. Do you have anything I could print out and take to her to explain it? She's not an endo, so maybe she doesn't know what to order. And then maybe my insurance company is limiting what she can do.
> 
> Is it possible that the dose of Armour that is working when I am sitting around doing schoolwork is not enough when I'm really active and hiking for several days. Like, is hiking, which could feel really good at the time I'm doing it, depleting my thyroid stores and turning me into a wet noodle that can't get off the couch?
> 
> Or is there some other health issue making my thyroid drugs not work? You might not be able to answer that. I'm just trying to get some sense of what's going on with me right now. I really help my doc can help me sort this out. Things are really not OK in my world.


Yes; that is correct. You burn up the T3 when you are more physically active.

And............I happen to know that if the Ferritin is tanked, it does impede the efficacy of thyroxine replacement. Indeed it does. Also estrogen dominance will do that. I presume on your vegetarian diet that you forego all soy products?

http://www.thyroid-info.com/articles/freet3woliner.htm#ken

http://www.amarillomed.com/howto/#Thyroid

The Free T3 and Free T4 are used to monitor the treatment. They should be above the median (middle) but below the upper end of the laboratory normal reference range. The goal for healthy young adults would be to have numbers close to the upper part of the range, and for cardiac and/or elderly patients, the numbers should be in the middle of its range.

The Free T3 and Free T4 levels should be checked every month and the hormone therapy readjusted until the FT3 and FT4 levels are in the therapeutic range described. Once a theraputic range is acheived the levels should be checked at least once a year. A small number of large, overweight, thyroid-resistant women may need 6-8 grains of Armour thyroid or the equivalent of thyroxine per day (counting 0.1mg of T4 as 1 grain of Armour Thyroid).
http://healthrecipes.com/armour_thyroid.htm

I don't know if any of the above will help. It is hard to find credible sources. Wah!


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## lavender

My current theory is that after I started feeling better from the armour, I did a whole bunch of exercise all at once, and left myself on empty with not enough for a refill. I will have to see if the doc thinks it's too soon to up my dose again.

If low ferretin reduces the effectiveness of thyroid hormone replacement, does that mean I'm not absorbing the hormones in my Armour? Would a higher does help, or is the solution to treat the anemia, or Both?

So, how long does it take to build iron levels back with low ferretin? 7 seems extremely low to me. Is it something to build slowly or should I start eating a big juicy steak every night until I feel better? I really can't stand the idea of eating steak, but maybe that's exactly what my body needs.

Soy-as far as I know, the only soy I eat is occasional Tofu. And that's pretty rare.

What is estrogen dominance? Do I need to get someone to check all my hormone levels? If my thyroid was so whacked out does that mean my whole endocrine system is tanked? Is it significant that a few days after that last blood test, I had my first period in 4 months, that it was extremely heavy and left me in a lot of pain? Wouldn't my iron levels tank after my period, not before? My doc doesn't want to look into the issue with my periods until my thyroid is stable, but could that be affecting how unstable my thyroid levels are?

I am just soooooo confused. many questions. want to feel better now. I think I need to type out a list for tomorrow or else I won't remember anything. Brain not working. Major melt down.


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## lavender

And my TSH is now a whopping 23! Yes, that's 23, not .23 or 2.3, 23.!!!

Which is actually an improvement over the 29 that it was a month ago.

And my doctor was very puzzled. Wanted to know if I had stopped taking my Armour. Seriously. As if I don't know that not taking my thyroid meds would kill me slowly and miserably.

Then she asked about switching to another thyroid medication. I told her I had already been on Synthroid, and I would absolutely not go back on it. As bad as I feel right now, I don't feel as bad as I was on the Synthroid with my TSH at a 3. Believe it or not.

Her next theory was that I had a bad batch of medication. Wanted me to take what I have back to the pharmacy and have them send it to a lab to be tested and have them re-fill the script. Now, if a pharmacy already gave me bad drugs, why would I want to pay them for more? I will take them back, but I'm not going to buy more.

I suggested that I go back to the 120mg I was taking in February when my TSH was .639. I still have some in my cupboard, so I don't even have to buy any. And I will go back to the pharmacy that filled that to get more. She agreed. I'm scheduled for another set of labs in a month. She wanted me to just get TSH, but agreed to FT3 and FT4 when I asked.

I'm supposed to call if I'm not feeling better in two weeks so she can do testing on other non-thyroid issues.

Oh, and I asked about the physical exercise depleting my thyroid hormones in the body, and she just looked at me puzzled and said that exercise should increase your thyroid levels. I don't have a thyroid. There's nothing in my body to boost anything. The only way I get hormones is what I put in!

Not quite sure about how I'm feeling about the doctor. She seems a bit clueless, but at least she was willing to increase my meds and listen to me about the labs and what I wanted. It's slightly better than the last doctor telling me I was just crazy when the synthroid wasn't working, but still not very reassuring. At least I got an increase. At least I didn't get sent away with a script for anti-depressants and told that nothing was wrong with me.


----------



## Andros

lavender said:


> My current theory is that after I started feeling better from the armour, I did a whole bunch of exercise all at once, and left myself on empty with not enough for a refill. I will have to see if the doc thinks it's too soon to up my dose again.
> 
> If low ferretin reduces the effectiveness of thyroid hormone replacement, does that mean I'm not absorbing the hormones in my Armour? Would a higher does help, or is the solution to treat the anemia, or Both?
> 
> So, how long does it take to build iron levels back with low ferretin? 7 seems extremely low to me. Is it something to build slowly or should I start eating a big juicy steak every night until I feel better? I really can't stand the idea of eating steak, but maybe that's exactly what my body needs.
> 
> Soy-as far as I know, the only soy I eat is occasional Tofu. And that's pretty rare.
> 
> What is estrogen dominance? Do I need to get someone to check all my hormone levels? If my thyroid was so whacked out does that mean my whole endocrine system is tanked? Is it significant that a few days after that last blood test, I had my first period in 4 months, that it was extremely heavy and left me in a lot of pain? Wouldn't my iron levels tank after my period, not before? My doc doesn't want to look into the issue with my periods until my thyroid is stable, but could that be affecting how unstable my thyroid levels are?
> 
> I am just soooooo confused. many questions. want to feel better now. I think I need to type out a list for tomorrow or else I won't remember anything. Brain not working. Major melt down.


Yes; the ferritin must be addressed. It should be 50 to 100 and the closer to 100, the better. Raising the Armour would not help;sad but true.

And learning to pace your self would help a lot. I am very regimented in all I do especially when it comes to exercise. I never miss a day of fast walking at least several miles, most usually 8 and whatever else I decide to do. I am not sedentary and I know that should I stop all this for any reason, I would have to seriously back down on my Armour dose. My dose was titrated based on what I "always" do. It took over a year of getting labs every 8 weeks until I hit my personal peak output. I have maintained on my current dose for many years now and that is only because I change nothing. I am in this for the long haul. LOL!

You don't have to forego your commitment of being a vegetarian. Just religiously take your iron supplement and use your cast iron and eat veggie stuff high in iron.

I do agree w/your doc about treating the thyroid actually treats the periods to a certain degree BUT if you were in a lot of pain, that leaves to wonder if you should be checked for endometriosis.

http://www.drrind.com/therapies/estrogen-dominance

And this guy here knows his stuff. I have been reading him for years. http://www.drlam.com/opinion/soyandestrogen.asp

http://www.migraine101.com/thyroid.htm

So..................see if you can get estrogen hormone test if the doc can do it.


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## lavender

well, I'm getting my period again, which makes no sense that I'm menstruating when my thyroid level is tanked. My TSH is 23. Even without the Free Ts, I know that's bad.

And if it's all ferretin, why were my levels good in February? Why was I feeling good the week before my TSH was 29 in April? I doubt I lost all that ferretin in two months.

I will read the estrogen dominance stuff later. I can't make heads or tails of anything right now. I have decided to schedule with an actual OB/GYN. My old primary care doc used to take care of my exams, but I think it's time to call in an expert on this one.


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## lavender

I finally took the brave step of walking into my optometrist's office today to ask about a referral to an ophthalmologist to find out what is going on with my eyes. I'm having a hard time seeing. I'm having a really hard time reading because all the letters look like one big jumble.

I've known all year I would need to do this eventually, but I kept putting it off because every time I tried to ask a doctor about my eyes and Graves Eye Disease, they either blew me off and said nothing looked wrong or just looked at me like I was crazy. And I put if off too because it was just one more thing I didn't have energy for.

I was really sensitive to light when I was in thyroid storm last year, had to sleep with a dark mask over my face, but it got better. And my eyes have been really dry, but that was nothing new. The optometrist has been telling me I have allergies and prescribing me eye drops that I never fill for years. This past year, I actually asked her to prescribe something and she sent me for an OTC product. Which kind of helps sometimes. Sometimes I'm dumping a whole vial in my eyes every hour.

Then last week, I was trying to read something off the computer for school, and I realized I couldn't read. Everything was all jumbled. Tried to explain it to my doctor yesterday, and she just didn't get it.

So, in to the optometrist's office today, and my doctor is on vacation. Actually, all the doctors are on vacation, so there was just an office full of staff people. I spoke to a very nice woman and tried my best to make her understand I needed the name of an ophthalmologist so I could call and schedule an appointment. She actually got it and told me she has a friend with Graves disease, and that she needs a medical doctor to do blood tests and help with her eyes in a way the the optometrist can't. She said that all sorts of medical things affect vision, and that I need to be seen by a medical doctor for evaluation. Finally. Someone who gets it.

She was really apologetic that the doc wasn't there to do an actual referral, but started googling names, and told me where to call. Told me I needed to get in today because I shouldn't be driving with double vision. Great. One more thing I don't want to hear is not to drive.

So, I called the vision center. Had to get through several offices to find the surgeons who treat Graves Eye Disease. Surgeon? I don't want my eyes sliced into. Not at all. Having my thyroid out was enough. But, I am telling myself surgeons are doctors, they do a lot more than slice people open. Maybe they just need to do bloodwork to find something my family doc isn't looking into. Maybe this is a good thing for my health overall if the family doc's only theory was that I'm taking bad Armour.

I'm scared, but I'm going.


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## Andros

lavender said:


> I finally took the brave step of walking into my optometrist's office today to ask about a referral to an ophthalmologist to find out what is going on with my eyes. I'm having a hard time seeing. I'm having a really hard time reading because all the letters look like one big jumble.
> 
> I've known all year I would need to do this eventually, but I kept putting it off because every time I tried to ask a doctor about my eyes and Graves Eye Disease, they either blew me off and said nothing looked wrong or just looked at me like I was crazy. And I put if off too because it was just one more thing I didn't have energy for.
> 
> I was really sensitive to light when I was in thyroid storm last year, had to sleep with a dark mask over my face, but it got better. And my eyes have been really dry, but that was nothing new. The optometrist has been telling me I have allergies and prescribing me eye drops that I never fill for years. This past year, I actually asked her to prescribe something and she sent me for an OTC product. Which kind of helps sometimes. Sometimes I'm dumping a whole vial in my eyes every hour.
> 
> Then last week, I was trying to read something off the computer for school, and I realized I couldn't read. Everything was all jumbled. Tried to explain it to my doctor yesterday, and she just didn't get it.
> 
> So, in to the optometrist's office today, and my doctor is on vacation. Actually, all the doctors are on vacation, so there was just an office full of staff people. I spoke to a very nice woman and tried my best to make her understand I needed the name of an ophthalmologist so I could call and schedule an appointment. She actually got it and told me she has a friend with Graves disease, and that she needs a medical doctor to do blood tests and help with her eyes in a way the the optometrist can't. She said that all sorts of medical things affect vision, and that I need to be seen by a medical doctor for evaluation. Finally. Someone who gets it.
> 
> She was really apologetic that the doc wasn't there to do an actual referral, but started googling names, and told me where to call. Told me I needed to get in today because I shouldn't be driving with double vision. Great. One more thing I don't want to hear is not to drive.
> 
> So, I called the vision center. Had to get through several offices to find the surgeons who treat Graves Eye Disease. Surgeon? I don't want my eyes sliced into. Not at all. Having my thyroid out was enough. But, I am telling myself surgeons are doctors, they do a lot more than slice people open. Maybe they just need to do bloodwork to find something my family doc isn't looking into. Maybe this is a good thing for my health overall if the family doc's only theory was that I'm taking bad Armour.
> 
> I'm scared, but I'm going.


I am so scared for you and very extremely worried. I had and still have the double vision. They can put stick-on prisms on your glasses for now to correct that and then once your eyes settle (and I hope to God you don't need surgery) you can get your lens w/ the prisms ground in. That is what I have.

The pharmacy could have given you Armour that was on the shelf for a long time and has disinegrated. I have my doctor Rx bottles of 100 unopened from Forest Pharmaceuticals. Get mine at Sam's Club. I don't get it the same day as they have to get from the supplier but I do get it in about 48 hours and believe me, with careful planning, it is worth every bit of it.

Please do keep us updated. One thing I know; "You are worth every effort put forth to take care of yourself!"


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## lavender

I had to order the Armour ahead of time at both pharmacies so they could order it in. So, it was coming out of fresh bottles. I just got back from both pharmacies that I had gotten the 90mgs from, and they both said I am the only one who has complained. They would not take the medication back and said its not possible to send it to a lab to have tested like my doctor recommended. the first pharmacy accused me of not taking my medication. The last pharmacy I filled it at said they could take back the rest of the script I still had and replace it, but admitted that it might be replaced from the same bottle. So, what's the point? Then the pharmacist suggested that I get my doc to add Cytomel to my Armour because I might need some T3. Um, really? What about the T3 that's already in Armour? She said it wasn't enough. Right. Armour's high in T3. I know that.

I took 120mgs today from a bottle I had filled in February. I'm actually up and moving with lots of energy today. After 1 day on supposedly 15mgs more. I can think and talk in complete sentences again. I don't want to lay in bed. When I switched to Armour from Synthroid, the difference was almost as dramatic. This is only one day, and time will tell, but a TSH of 29 or 23 looks like I wasn't taking any medication whatsoever.

So, maybe the doctor was right, maybe it was a bad batch of meds. I don't have any other explanation for how I would go from barely moving to alive and well in 24 hours. I doubt a 15 mg increase would account for that significant a difference.

So, I suppose that means if I do have double vision, its irreversible. Do prisms mean no more contacts? Who orders the prisms, the optometrist or the ophthalmologist? Does surgery stop the double vision? the only thing I can see is that my left eye is open a bit wider than the right. And its been that way for years. When I was doing theatre in undergrad, I took a stage makeup course, and we had to analyze our faces/other people's faces for symmetry. that was 14 years ago, and the right side of my face droops. So, I doubt it's the graves, but who knows. I'm sure I'll find out a whole bunch more from the doc tomorrow. I just want my life back. I want to be able to see and read again.


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## Andros

lavender said:


> I had to order the Armour ahead of time at both pharmacies so they could order it in. So, it was coming out of fresh bottles. I just got back from both pharmacies that I had gotten the 90mgs from, and they both said I am the only one who has complained. They would not take the medication back and said its not possible to send it to a lab to have tested like my doctor recommended. the first pharmacy accused me of not taking my medication. The last pharmacy I filled it at said they could take back the rest of the script I still had and replace it, but admitted that it might be replaced from the same bottle. So, what's the point? Then the pharmacist suggested that I get my doc to add Cytomel to my Armour because I might need some T3. Um, really? What about the T3 that's already in Armour? She said it wasn't enough. Right. Armour's high in T3. I know that.
> 
> I took 120mgs today from a bottle I had filled in February. I'm actually up and moving with lots of energy today. After 1 day on supposedly 15mgs more. I can think and talk in complete sentences again. I don't want to lay in bed. When I switched to Armour from Synthroid, the difference was almost as dramatic. This is only one day, and time will tell, but a TSH of 29 or 23 looks like I wasn't taking any medication whatsoever.
> 
> So, maybe the doctor was right, maybe it was a bad batch of meds. I don't have any other explanation for how I would go from barely moving to alive and well in 24 hours. I doubt a 15 mg increase would account for that significant a difference.
> 
> So, I suppose that means if I do have double vision, its irreversible. Do prisms mean no more contacts? Who orders the prisms, the optometrist or the ophthalmologist? Does surgery stop the double vision? the only thing I can see is that my left eye is open a bit wider than the right. And its been that way for years. When I was doing theatre in undergrad, I took a stage makeup course, and we had to analyze our faces/other people's faces for symmetry. that was 14 years ago, and the right side of my face droops. So, I doubt it's the graves, but who knows. I'm sure I'll find out a whole bunch more from the doc tomorrow. I just want my life back. I want to be able to see and read again.


You can have strabisimus surgery to correct. The muscles have weakend. However, I personally opted out because in researching I read that it has to be redone every 7 years or so. I already had orbital decompressions and lid retraction surgery so I had "enough" of that to last me a life time. I do fine w/ prisms. You would have to wear glasses. I don't think they can do prisms in contact lens; at least I have never heard of such.

My left eye was the worst as well. Most of us have the left eye being the worst but for some it is the right eye.

I am surely wondering about your meds. Did you call Armour?

http://www.armourthyroid.com/ It's an 800 # number and over the years, I have called a lot. They are super super nice. Give them a call!


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## lavender

You read my mind. Calling Armour was my next thought when the last pharmacist told me the medicine had not been recalled and insisted there was no possibility of bad drugs being distributed in the US because our FDA is SOOOOO good. (I kept typing god...the FDA is god....HA!)

This morning, my heart is racing, which is exactly what happened on this dose before. I thought the doc was a bit crazy when she told me the meds might be bad, but maybe she's right.

I'm scared of meeting with the doc, scared of the S word again. With my new insurance, I have to pay 20% of anything, and I don't have 20% to cover a surgery. barely have 20% to cover a doc visit. Besides, I could get over letting someone cut into my throat, but my eyes are a whole nother issue. I have a horrible time with dental work. I can't even imagine the eyes.


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## rockabette

Oh Lavender..... Im hearing you there about costs. I had no idea endos were so expensive AND consults are not covered by my top cover private health insurance and isnt by any other insurance. However, if I was to be admitted to hospital for surgery overnight in a private hospital then I am completely covered but a small excess fee. Consults are only partly rebated by medicare (Australia's public health program).

Anyways..... im scared to find out how much the meds are here in Australia and if they are even on the PBS (pharmecutical benefits scheme = prescription drugs subsidised by the Australian Govt).... if not I have to pay all costs and I am only covered for up to $600 of prescription drugs per year on private health cover for drugs not on the PBS. sorry if this sounds confusing.

Anyways hope they get you sorted soon.


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## lavender

Andros, I spoke with Armour, and they were very nice. took a detailed report with all my contact info and told me it would be passed onto their drug safety department. I feel better. Maybe I will at least help someone else out who is getting bad meds and doesn't know it. But perhaps like me, they don't have the energy to get out of bed and notice that anything's wrong!


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## lavender

The one good thing is that my general practitioner works for a university where my portion of the bill is covered by a sliding fee scale. I'm not sure about this eye surgeon because he's a specialist. I don't know what scares me more, the thought of eye surgery or the cost. I know I'll find out more this afternoon. I'm feeling a bit terrified of the possibilities.


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## Andros

lavender said:


> Andros, I spoke with Armour, and they were very nice. took a detailed report with all my contact info and told me it would be passed onto their drug safety department. I feel better. Maybe I will at least help someone else out who is getting bad meds and doesn't know it. But perhaps like me, they don't have the energy to get out of bed and notice that anything's wrong!


You are one very cool lady!! Love it!!


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## lavender

Good news (I think), the eye surgeon said that I don't have "many of the changes that they normally associate with graves patients" and I'm supposed to go back in a month so they can monitor my condition until it stabilizes. He put some prisms in front of my eyes, and the smallest one helped my right eye, but when I asked what I could do to help myself see now, he told me to cover one eye. Sigh.

He said it could be that muscle weakness is making it hard for me to focus. Said he could test bloodwork to see if I have Myasthenia Gravis
I have an order for TSI and 
"Acetycholine Antibody Receptors binding, blocking and modulating"
The script says I have a diagnosis of "diplopia"
No, he didn't explain what that means.

He wants to see things even out with my thyroid hormones because apparently that could be affecting my vision.

He said I could get a cat scan of my head to see if my eyes were pushing out of their sockets. I really don't see much point of doing that unless there's something significant.

The doctor was very nice, but also spoke to me like I was 10. Ok, maybe 15, he at least asked me if I wanted the bloodwork and cat scan done. H really didn't explain much, which just leaves me more confused.

So I just read about Myasthenia gravis. It sounds horrible. I'm glad I'm getting the bloodwork, but I think I probably shouldn't read any more about it until I get the results or I will spend the next two weeks obsessing.


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## rockabette

gawd.... i just had a quick look on what that Myasthenia gravis was too and gee whiz i hope u dont have it.

Also.... google says diplopia is a case of double vision.


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## lavender

yeah, the doc said it would be a few weeks for the bloodwork to come back. I've decided not to look up anything until I have results because Myasthenia Gravis just sounds too frightening, and I will convince myself I have it if I keep reading because the symptoms sound like something I have been dealing with for years, especially the part about exercise making fatigue worse.

I was told I had fibromyalgia a few years back, I went to see my doctor about it because I had to quit yoga because I was no longer able to manage the gentle class after being in the advanced class for over a year. Well, when they told me fibro, I was told to take an aqua arthritis class and to exercise. I kept trying to tell the doc that every time I tried to exercise, ti made everything worse. And I did try that stupid aqua arthritis class (after I was feeling better), and less than 20 minutes after I was out of class, I couldn't keep my head up, and was a mess for weeks.

Every time I try to get really active, I feel really good at the time, and send my self into a tailspin for weeks afterward.

My muscle fatigue was so bad I was in thyroid storm that I couldn't make it up a flight of stairs and eventually breathing got to be really hard work and painful.

I know I can make myself a total wreck for weeks if I let myself go there.


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## Andros

lavender said:


> yeah, the doc said it would be a few weeks for the bloodwork to come back. I've decided not to look up anything until I have results because Myasthenia Gravis just sounds too frightening, and I will convince myself I have it if I keep reading because the symptoms sound like something I have been dealing with for years, especially the part about exercise making fatigue worse.
> 
> I was told I had fibromyalgia a few years back, I went to see my doctor about it because I had to quit yoga because I was no longer able to manage the gentle class after being in the advanced class for over a year. Well, when they told me fibro, I was told to take an aqua arthritis class and to exercise. I kept trying to tell the doc that every time I tried to exercise, ti made everything worse. And I did try that stupid aqua arthritis class (after I was feeling better), and less than 20 minutes after I was out of class, I couldn't keep my head up, and was a mess for weeks.
> 
> Every time I try to get really active, I feel really good at the time, and send my self into a tailspin for weeks afterward.
> 
> My muscle fatigue was so bad I was in thyroid storm that I couldn't make it up a flight of stairs and eventually breathing got to be really hard work and painful.
> 
> I know I can make myself a total wreck for weeks if I let myself go there.


Don't think you have MG. I call this faux Myastenia Gravis. Myopothy due to thyroid disease.

Do you wear glasses? If so, you can get stick on prisms to get you through.


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## lavender

So does this faux Myastenia Gravis get better as my thyroid levels get better? It is reassuring to her from you, I know I'll feel better when I see the blood test.

yeah, I wear glasses or contacts depending on the day. He didn't mention stick on prisms, which I was thinking might help after he held them up to my eyes. Do I have to get a script from the doc, or can I just get some on my own?

I can probably ask him the next time I go in, but right now I need to be able to read for school.


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## Andros

lavender said:


> So does this faux Myastenia Gravis get better as my thyroid levels get better? It is reassuring to her from you, I know I'll feel better when I see the blood test.
> 
> yeah, I wear glasses or contacts depending on the day. He didn't mention stick on prisms, which I was thinking might help after he held them up to my eyes. Do I have to get a script from the doc, or can I just get some on my own?
> 
> I can probably ask him the next time I go in, but right now I need to be able to read for school.


Yes; I had this really bad. All organs prolapsed. Even the muscles supporting the lungs. I could not breath. It was horrible. It is essential to get to the euthroid state for healing. It is true; the orbital muscles are weakening.

You need to get them from the eye doc. Don't know why the Ophthalmologist did not offer them.

You "will" get better and by the way, getting to the place that is euthyroid is going to help the eyes also. That does not treat the eyes in their entirity but it helps.....................a lot.

Please (if you can) read this.
http://www.caleyes.com/webdocuments/...ease_paper.pdf


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## lavender

I sure hope you're right about this. It's been over a years since I got sick, and I'm starting to loose faith, especially this week.

I tried to look up that link, and it just takes me to a doctor's web site. Not sure that's what you intended.


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## Andros

lavender said:


> I sure hope you're right about this. It's been over a years since I got sick, and I'm starting to loose faith, especially this week.
> 
> I tried to look up that link, and it just takes me to a doctor's web site. Not sure that's what you intended.


Just had to go to conditions and treatement from the index. Sorry about that.
http://www.caleyes.com/condition-thyroid-eye-disease-bay-area-ca.html


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## lavender

I just wanted to let you all know I'm still here. Don't feel any better, thought I saw an improvement on day 1&2 of 120 mg armour, but I'm feeling awful again. Have since Sunday.

Barely leaving the house. Having a hard time convincing myself to shower. When I do go out, I'm dizzy and disoriented, my head is in the clouds, and I get tired very easily. I'm scared to drive.

I'm supposed to wait another week to go back in to the doctor, but I'm not sure how I'm supposed to keep waiting if I can't function. How do I know things are bad enough that I ought to check myself into a hospital? I'm at least getting up to fix myself meals, get water and take my meds, which is better than I was in thyroid storm, but I feel just awful.


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## lavender

Back to the Doc's yesterday because I'm not feeling any better. Still barely getting off the couch. Head's still foggy all the time. Can barely keep up a conversation because my brain moves so slow, and I get tired listening to people talk because I can't put it all together right now.

The doc's looking at me again like she has no idea why my TSH is so high, why Armour is doing nothing, asking when I switched from Synthroid even though she's the one who took me off it and prescribed Armour (do doctors even read charts anymore?)

The doc asked if I had seen an endo, and I told her he just wanted to keep me on synthroid even though I felt wretched. And I did. I think that was worse than I feel right now because my whole body was in pain, and now it's not. I'm slow and tired and confused, but I'm not in serious pain. Which is nice for someone who's been diagnosed with fibro and can't take pain meds.

The doc decided to order more labs. From what I could tell when I took a peak at the little vials, it was TSH, FT3, T4, FTI, and thyroid antibodies. I'm really not sure what thyroid antibodies have to with this now that I have no thyroid, but she ordered them.

I have been having heart palpitations again, with my heart racing. We talked about sending me for a cardio workup again, but the doc wants to wait to see how I'm doing at the next appointment.

The doc did agree to switch me to Nature Thyroid to see if that works better for me than Armour. And boy, was filling that ever fun. 3 chain pharmacies didn't have it, told me they couldn't order it because it's not being made anymore. I called the independent compounding pharmacy. They said they could get it and I should be able to pick it up this afternoon.

I go back for more labs and another appointment in 3 weeks, but at this point I'm not sure the doc is helping. I know the whole thing about thyroid levels being slow to change, but I want to be better, to have some kind of hope in getting better and being functional again soon. I want to feel like my doctor knows something and isn't just looking at me like she has no clue how to help me. She just keeps saying, "I hope you feel better." I do too, but I also want more than well wishes from a doc. Maybe I'm just expecting her to wave a magic wand to make me all better and I just need to be patient. Maybe it's time to drag myself back into see an endo. I really don't know at this point.


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## Andros

lavender said:


> Back to the Doc's yesterday because I'm not feeling any better. Still barely getting off the couch. Head's still foggy all the time. Can barely keep up a conversation because my brain moves so slow, and I get tired listening to people talk because I can't put it all together right now.
> 
> The doc's looking at me again like she has no idea why my TSH is so high, why Armour is doing nothing, asking when I switched from Synthroid even though she's the one who took me off it and prescribed Armour (do doctors even read charts anymore?)
> 
> The doc asked if I had seen an endo, and I told her he just wanted to keep me on synthroid even though I felt wretched. And I did. I think that was worse than I feel right now because my whole body was in pain, and now it's not. I'm slow and tired and confused, but I'm not in serious pain. Which is nice for someone who's been diagnosed with fibro and can't take pain meds.
> 
> The doc decided to order more labs. From what I could tell when I took a peak at the little vials, it was TSH, FT3, T4, FTI, and thyroid antibodies. I'm really not sure what thyroid antibodies have to with this now that I have no thyroid, but she ordered them.
> 
> I have been having heart palpitations again, with my heart racing. We talked about sending me for a cardio workup again, but the doc wants to wait to see how I'm doing at the next appointment.
> 
> The doc did agree to switch me to Nature Thyroid to see if that works better for me than Armour. And boy, was filling that ever fun. 3 chain pharmacies didn't have it, told me they couldn't order it because it's not being made anymore. I called the independent compounding pharmacy. They said they could get it and I should be able to pick it up this afternoon.
> 
> I go back for more labs and another appointment in 3 weeks, but at this point I'm not sure the doc is helping. I know the whole thing about thyroid levels being slow to change, but I want to be better, to have some kind of hope in getting better and being functional again soon. I want to feel like my doctor knows something and isn't just looking at me like she has no clue how to help me. She just keeps saying, "I hope you feel better." I do too, but I also want more than well wishes from a doc. Maybe I'm just expecting her to wave a magic wand to make me all better and I just need to be patient. Maybe it's time to drag myself back into see an endo. I really don't know at this point.


Have you been tested for Lyme Disease, Epstein Barr and a few others? Just a thought.


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## lavender

Nope, nothing besides thyroid, which is why I am seriously doubting the doc at this point. Thinking of asking the compounding pharmacy if they can recommend anyone who prescribes dessicated thyroid. Considering if I do need to go back to an endo.

I did get a referral to a dermatologist for a lovely rash, which I will spare you the details about. I see the dermatologist Monday, which is the quickest referral I have ever gotten to a specialist ever. Doc wanted me to call for a referral if it wasn't better last week, but I just didn't have the energy to do it. Now I'm trying to keep myself from looking up pictures of skin cancer all weekend because I have never seen anything like this and the doc looked seriously stumped when she saw it!


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## Andros

lavender said:


> Nope, nothing besides thyroid, which is why I am seriously doubting the doc at this point. Thinking of asking the compounding pharmacy if they can recommend anyone who prescribes dessicated thyroid. Considering if I do need to go back to an endo.
> 
> I did get a referral to a dermatologist for a lovely rash, which I will spare you the details about. I see the dermatologist Monday, which is the quickest referral I have ever gotten to a specialist ever. Doc wanted me to call for a referral if it wasn't better last week, but I just didn't have the energy to do it. Now I'm trying to keep myself from looking up pictures of skin cancer all weekend because I have never seen anything like this and the doc looked seriously stumped when she saw it!


Lupus??? You were in the sun a lot over the weekend. Also if you used sunscreen you could be having a violent reaction to that. I have that problem because of Lupus.

Mind you; I don't want you to have any of these things but we have to toss the ball here. Just throwing "stuff" out there.


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## lavender

The rash is 3 weeks old at this point, and not in a sun-exposed area. It came out of nowhere in a matter of hours, and looks nothing like anything I have ever had before. And it doesn't itch or hurt, which is strange for how bad it looks. The doc called it a "lesion" in the referral. Steroid cream has done nothing for it. I have looked at photos of discoid lupus and some skin cancers that look similar, but its hard to tell by a photo.

I have wondered about lupus before because of my extreme sensitivity to the sun. My arms break out in a bumpy itchy rash after I have been in the sun for a short time.

I think it's good that I am getting into the dermatologist so quickly, not what I expected. The trick is not obsessing about it in the meantime.


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## Andros

lavender said:


> The rash is 3 weeks old at this point, and not in a sun-exposed area. It came out of nowhere in a matter of hours, and looks nothing like anything I have ever had before. And it doesn't itch or hurt, which is strange for how bad it looks. The doc called it a "lesion" in the referral. Steroid cream has done nothing for it. I have looked at photos of discoid lupus and some skin cancers that look similar, but its hard to tell by a photo.
> 
> I have wondered about lupus before because of my extreme sensitivity to the sun. My arms break out in a bumpy itchy rash after I have been in the sun for a short time.
> 
> I think it's good that I am getting into the dermatologist so quickly, not what I expected. The trick is not obsessing about it in the meantime.


I am with you on the positive thinking part big-time. Just take it one day at a time here.

You might want to watch this.
http://lupus.webmd.com/slideshow-lupus-overview


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## lavender

I'm not sure with this rash in particular, but I've got the redness on my upper chest. It's been there since my surgery. The first person who noticed it was a friend who has lupus. It was itchy for a while, but now it's just red, like a sunburn, even through the winter when there was no sun, and when I put pressure on it for a moment, the skin turns white and gradually fades back to red again. I showed it to my doc several times, but it hasn't been severe enough to warrant a referral.

I'm hoping the dermatologist would be willing to look at a couple different things, but I will see how things go Monday.

I wonder if lupus could be related to the continued heart palpitations and my body not responding to Armour...or if it's all just the anemia. I don't know.


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## Andros

lavender said:


> I'm not sure with this rash in particular, but I've got the redness on my upper chest. It's been there since my surgery. The first person who noticed it was a friend who has lupus. It was itchy for a while, but now it's just red, like a sunburn, even through the winter when there was no sun, and when I put pressure on it for a moment, the skin turns white and gradually fades back to red again. I showed it to my doc several times, but it hasn't been severe enough to warrant a referral.
> 
> I'm hoping the dermatologist would be willing to look at a couple different things, but I will see how things go Monday.
> 
> I wonder if lupus could be related to the continued heart palpitations and my body not responding to Armour...or if it's all just the anemia. I don't know.


The low ferritin is the most likely culprit when it comes to the palps and not responding well to thyroid hormone Rx.

Here are the most common symptoms of Lupus. Of course nothing is carved in stone.
http://lupus.webmd.com/guide/lupus-symptoms-types


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## lavender

I've seen this before. A lot of it seems familiar but I don't know if it's lupus or just a collection of symptoms.
* Fatigue: have had it for years, diagnosed as fibro, is also related to hypothyroid
* Joint and muscle pain: yup, for a long time. waxes and wanes, also diagnosed as fibro
* Skin problems: lots of rashes, not sure if they are lupus rashes, but very sensitive skin
* Sensitivity to light: yup, makes me break out in a rash
* Nervous system symptoms: headaches, poor memory and concentration (which could also be hypothyroid), diagnosed as fibro, could also be explained by hypothyroid
* Heart problems: Not that I know of...palpitations and racing, don't know why
* Lung problems: Don't think so
* Mental health problems: have had MH issues for years. But not necessarily from lupus, also related to thyroid
* Fever: have had low grade fever from time to time. Very common when I am sick.
* Changes in weight: all thyroid related
* Hair loss: thyroid related
* Swollen glands: Not sure. Don't think doc has found this in the past. That's why they diagnosed me with fibro and not chronic fatigue syndrome. because swollen glans are more related to chronic fatigue
* Raynaud's phenomenon: Don't think so. Hands and feet have been cold my whole life, but I'm not sure that's a symptom of anything
* Inflammation of blood vessels in the skin (cutaneous vasculitis): Don't think so
* Swelling of the hands and feet: yes, especially since thyroid disease
* Anemia: yup.

So, who knows? and who knows when/if a doc will put things together. I can't get into a rheumatologist without a referral and the only one who ever saw me refused to treat me.

I'm taking iron now. I just have no idea how long it takes to raise ferretin. and if my low ferretin would account for how high my TSH is.


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## Andros

lavender said:


> I've seen this before. A lot of it seems familiar but I don't know if it's lupus or just a collection of symptoms.
> * Fatigue: have had it for years, diagnosed as fibro, is also related to hypothyroid
> * Joint and muscle pain: yup, for a long time. waxes and wanes, also diagnosed as fibro
> * Skin problems: lots of rashes, not sure if they are lupus rashes, but very sensitive skin
> * Sensitivity to light: yup, makes me break out in a rash
> * Nervous system symptoms: headaches, poor memory and concentration (which could also be hypothyroid), diagnosed as fibro, could also be explained by hypothyroid
> * Heart problems: Not that I know of...palpitations and racing, don't know why
> * Lung problems: Don't think so
> * Mental health problems: have had MH issues for years. But not necessarily from lupus, also related to thyroid
> * Fever: have had low grade fever from time to time. Very common when I am sick.
> * Changes in weight: all thyroid related
> * Hair loss: thyroid related
> * Swollen glands: Not sure. Don't think doc has found this in the past. That's why they diagnosed me with fibro and not chronic fatigue syndrome. because swollen glans are more related to chronic fatigue
> * Raynaud's phenomenon: Don't think so. Hands and feet have been cold my whole life, but I'm not sure that's a symptom of anything
> * Inflammation of blood vessels in the skin (cutaneous vasculitis): Don't think so
> * Swelling of the hands and feet: yes, especially since thyroid disease
> * Anemia: yup.
> 
> So, who knows? and who knows when/if a doc will put things together. I can't get into a rheumatologist without a referral and the only one who ever saw me refused to treat me.
> 
> I'm taking iron now. I just have no idea how long it takes to raise ferretin. and if my low ferretin would account for how high my TSH is.


It takes a while on that ferritin bearing in mind this did not happen over night.

I think you need to be tested for Lupus; I really do. Anti-DNA, C3, C4


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## lavender

If I can talk my doc into one more test that she doesn't seem to understand. I'm not feeling too hopeful here. Feels like I am fighting a loosing battle. I suppose I can always ask when I see her again in a few weeks.


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## Andros

lavender said:


> If I can talk my doc into one more test that she doesn't seem to understand. I'm not feeling too hopeful here. Feels like I am fighting a loosing battle. I suppose I can always ask when I see her again in a few weeks.


The magic words are, "I hope I don't go into kidney failure because of undiagnosed Lupus!" That will make her sit up straight. Just run that by her! And I am not joking. I am serious.


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## lavender

I know you're serious, but that really made me laugh! I hate sounding melodramatic, but after the last doc totally missed my thyroid storm, I know it's important. I have heard of skin biopsy's for lupus, which I am wondering if I can talk the dermatologist into. I'm sure a positive result there could land me a referral to a rheumatologist. But a blood test would be less painful....or theoretically should be if my veins didn't hide and collapse every time someone tried to stick me!


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## Andros

lavender said:


> I know you're serious, but that really made me laugh! I hate sounding melodramatic, but after the last doc totally missed my thyroid storm, I know it's important. I have heard of skin biopsy's for lupus, which I am wondering if I can talk the dermatologist into. I'm sure a positive result there could land me a referral to a rheumatologist. But a blood test would be less painful....or theoretically should be if my veins didn't hide and collapse every time someone tried to stick me!


]
Drink plenty of water starting the evening prior to labs. If you are dehydrated, they can't access the veins too well if at all.


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## lavender

yeah, I just learned from a friend about drinking water at night. They had a horrible time this past week, doctor's office sent me to a lab because they couldn't get a vein. I drank a large bottle of water in between that did nothing.


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## Andros

lavender said:


> yeah, I just learned from a friend about drinking water at night. They had a horrible time this past week, doctor's office sent me to a lab because they couldn't get a vein. I drank a large bottle of water in between that did nothing.


LHM! (Lord have mercy) That had to be a mess.


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## lavender

I haven't even mentioned the phlebotomist who never looked me in the eye, didn't speak a word to me, just looked at the arm with two band-aides already on it and started muttering under his breath in some Eastern European language as if I purposely brought him bad veins to ruin his day! At least he got the vein on the first try, but it was a slow bleeder, and there were 3 vials to fill! When I dared to take a deep breath because it took so long, he just looked at me, like how dare you? Seriously, where do they find these people? The thing is, I'm laughing about the whole thing because this has NOT been the worst blood draw of my life! But I think I have horrified a few friends telling them the story!


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## Andros

lavender said:


> I haven't even mentioned the phlebotomist who never looked me in the eye, didn't speak a word to me, just looked at the arm with two band-aides already on it and started muttering under his breath in some Eastern European language as if I purposely brought him bad veins to ruin his day! At least he got the vein on the first try, but it was a slow bleeder, and there were 3 vials to fill! When I dared to take a deep breath because it took so long, he just looked at me, like how dare you? Seriously, where do they find these people? The thing is, I'm laughing about the whole thing because this has NOT been the worst blood draw of my life! But I think I have horrified a few friends telling them the story!


Well, don't be a pin cushion anymore. Get hydrated the night before!

(The kid's a poet and doesn't know it!)


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## lavender

LOL! Now I know!

As for the rash, dermatologist gave me some prescription anti-biotic ointment I'm supposed to put on 3x a day after washing with anti-bacterial soap. They took a picture of it, and if it's still there in 3 weeks, I get a biopsy. Thrilling. I'm supposed to call immediately if it get bigger or I get another one.

She told me what it was, but I couldn't remember. Said something about possible immune system issues. Ya Think? The took swabs of my nostrils for a culture also. Apparently, if that comes back positive, I get to smear the ointment up my nose! Fun Times!


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## Andros

lavender said:


> LOL! Now I know!
> 
> As for the rash, dermatologist gave me some prescription anti-biotic ointment I'm supposed to put on 3x a day after washing with anti-bacterial soap. They took a picture of it, and if it's still there in 3 weeks, I get a biopsy. Thrilling. I'm supposed to call immediately if it get bigger or I get another one.
> 
> She told me what it was, but I couldn't remember. Said something about possible immune system issues. Ya Think? The took swabs of my nostrils for a culture also. Apparently, if that comes back positive, I get to smear the ointment up my nose! Fun Times!


Interesting that the doc took nasal swabs. I wish more would do that before Rx'ing Antibiotics. This way you know if it is gram positive, gram negative or fungal. And that way, one does not run the gamut of hit and miss antibiotics.

Did she give you Chlorhexadrine soap?


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## lavender

Nope, just told me to get something anti-bacterial like dial. The ointment is bactro-ban. I think it's good did a swab too, but I have never heard of sticking anti-biotic ointment up your nose!


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## Andros

lavender said:


> Nope, just told me to get something anti-bacterial like dial. The ointment is bactro-ban. I think it's good did a swab too, but I have never heard of sticking anti-biotic ointment up your nose!


Are you having erythemia of the nasal passages per chance? That would be a symptom of Lupus.


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## lavender

What's that? I have allergies and was given prescription allergy medication this year for the first time ever, but that might just be because I have a new doc. I had a really bad allergy attack when I was in Montreal 6 weeks ago. Couldn't stop sneezing for days and it felt like some allergen was stuck up my nose. Other than that, my nose seems ok.


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## lavender

New labs, and I just want to say that I love the on-line reporting! Much quicker!

TSH, HIGH-SENSITIVITY	4.413	(0.550 - 4.780)	
T3 FREE	2.4	(2.3 - 4.2) 
T3 UPTAKE 0.79	(0.75 - 1.23)	
T4 TOTAL THYROXIN	9.1	(4.5 - 10.9)	
FREE THYROXIN INDEX	7.2	(4.2 - 13.0)	
THYROGLOBULIN ANTIBODY	<20.0	<40.0
ANTI MICROSOMAL ANTIBODY	<10.0	<35.0

So, things are getting better. I'm still pretty low in FT3, and I don't know why she didn't order the Free T4, when I specifically asked. It's on my order for next week, but I can see that this is a huge improvement over a TSH of 23! Maybe the doc was right and the 90 mg tablet was a bad batch of Armour. I started Nature Thyroid yesterday and now I'm wondering if that was a good idea or if I should just go back to the Armour 120 that was working.

I had to look it up anti-microsmal antibody seems to be the same thing as TPO. So, my antibodies are quieted down since surgery, which makes sense.

I think my plan for now is to push for an increase in dose until I get my TSH back under 1 and my Free T3 closer to 4. Labs for next week are TSH, Free T3 and Free T4 and a visit with the doc the week after.


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## Andros

lavender said:


> New labs, and I just want to say that I love the on-line reporting! Much quicker!
> 
> TSH, HIGH-SENSITIVITY	4.413	(0.550 - 4.780)
> T3 FREE	2.4	(2.3 - 4.2)
> T3 UPTAKE 0.79	(0.75 - 1.23)
> T4 TOTAL THYROXIN	9.1	(4.5 - 10.9)
> FREE THYROXIN INDEX	7.2	(4.2 - 13.0)
> THYROGLOBULIN ANTIBODY	<20.0	<40.0
> ANTI MICROSOMAL ANTIBODY	<10.0	<35.0
> 
> So, things are getting better. I'm still pretty low in FT3, and I don't know why she didn't order the Free T4, when I specifically asked. It's on my order for next week, but I can see that this is a huge improvement over a TSH of 23! Maybe the doc was right and the 90 mg tablet was a bad batch of Armour. I started Nature Thyroid yesterday and now I'm wondering if that was a good idea or if I should just go back to the Armour 120 that was working.
> 
> I had to look it up anti-microsmal antibody seems to be the same thing as TPO. So, my antibodies are quieted down since surgery, which makes sense.
> 
> I think my plan for now is to push for an increase in dose until I get my TSH back under 1 and my Free T3 closer to 4. Labs for next week are TSH, Free T3 and Free T4 and a visit with the doc the week after.


Glad the antibodies came down. Your T3 uptake is interesting. Kind of low. A

You might like to read about it.

This test helps estimate the availability of thyroxin binding globulin (TBG). This is the protein that carries most of the T3 and T4 in the blood. The higher the level of TBG, the lower the value of T3RU. A higher T3RU value means less TBG is available

Lower than normal levels may indicate:

•Acute hepatitis
•Pregnancy
•Underactive thyroid (hypothyroidism, primary hypothyroidism, or secondary hypothyroidism)
•Use of estrogen

http://www.nlm.nih.gov/medlineplus/ency/article/003688.htm

I personally think progress is being made and I am very very happy about this also.


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## lavender

I feel like I see a ray of light behind the clouds.

I don't really understand T3 uptake or why she has been running it. It was .83 on 4/4 when my TSH was 29.5. So, it does sound worth looking into.

Here's labs from 4/4 compared to last week (I have to see them side by side to make any sense of them):

4/4/2011
90 mg Armour for 6 weeks
TSH: 29.531 (.55-4.78) WHAT????? 29.5?????
T3 uptake .83 (.75-1.23)
Total T4 5.9 (4.5-10.9)
Free Thyroxin Index 4.9 (4.2-13)

6/2/2011
120 mg Armour for 2 weeks
TSH, HIGH-SENSITIVITY 4.413 (0.550 - 4.780)
T3 FREE 2.4 (2.3 - 4.2)
T3 UPTAKE 0.79 (0.75 - 1.23)
T4 TOTAL THYROXIN 9.1 (4.5 - 10.9)
FREE THYROXIN INDEX 7.2 (4.2 - 13.0)


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## Andros

lavender said:


> I feel like I see a ray of light behind the clouds.
> 
> I don't really understand T3 uptake or why she has been running it. It was .83 on 4/4 when my TSH was 29.5. So, it does sound worth looking into.
> 
> Here's labs from 4/4 compared to last week (I have to see them side by side to make any sense of them):
> 
> 4/4/2011
> 90 mg Armour for 6 weeks
> TSH: 29.531 (.55-4.78) WHAT????? 29.5?????
> T3 uptake .83 (.75-1.23)
> Total T4 5.9 (4.5-10.9)
> Free Thyroxin Index 4.9 (4.2-13)
> 
> 6/2/2011
> 120 mg Armour for 2 weeks
> TSH, HIGH-SENSITIVITY 4.413 (0.550 - 4.780)
> T3 FREE 2.4 (2.3 - 4.2)
> T3 UPTAKE 0.79 (0.75 - 1.23)
> T4 TOTAL THYROXIN 9.1 (4.5 - 10.9)
> FREE THYROXIN INDEX 7.2 (4.2 - 13.0)


Wow! Interesting T3 uptake up on 6/2 and TSH down.


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## lavender

Yeah, that does seem a bit counter-intuitive. It seems that T3 Uptake measures a protein separate from the actual thyroid hormones, and actually dictates how well thyroid hormones are able to work if it carries thyroid hormone throughout the body. What's not clear to me, is how to increase a low T3 uptake. More thyroid hormones?


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## Andros

lavender said:


> Yeah, that does seem a bit counter-intuitive. It seems that T3 Uptake measures a protein separate from the actual thyroid hormones, and actually dictates how well thyroid hormones are able to work if it carries thyroid hormone throughout the body. What's not clear to me, is how to increase a low T3 uptake. More thyroid hormones?


Yes; it is sort of like the ferritin situation which is also a protein and I have "wondered" the same. How do you bring up the T3 uptake?

I do believe that taking T3 or being able to convert T4 to T3 well may have something to do w/that.


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## lavender

Well, my T3 is still pretty low, even though I am on a med with T3. Hopefully the doc will be willing to prescribe an increase when I see her in 2 weeks.


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## Andros

lavender said:


> Well, my T3 is still pretty low, even though I am on a med with T3. Hopefully the doc will be willing to prescribe an increase when I see her in 2 weeks.


And that further reinforces my thinking along those lines. The other thing could be some other kind of binding or blocking antibodies to the protein? I know that sounds way out there but you never know.


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## lavender

yeah, I am still waiting on the results of the TSI test and myastania gravis antibody test from the ophthalmologist. I'm not sure what those will show or if they are involved. I just know I want more thyroid med because right now I am still so exhausted. Woke up an hour ago and I already want to go back to bed! Yesterday, I went to an appointment then had friends over for dinner, and after that, I was toast! I know there's more to life than this! I just want a little piece of it back.

I'm not sure about the Nature tTyroid because right now, my hands are swollen up again after only 3 days. I notice that whenever I am really hypo, my hands start swelling. It was the first thing I noticed before the blood test in April where my TSH was 29. On Armour 120 mg, the swelling had gone away and was staying away, and now it seems to be back. I'm thinking of re-filling my Armour script and just sticking with that until I see the doc, but not sure of how good it is to keep switching back and forth.


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## Andros

lavender said:


> yeah, I am still waiting on the results of the TSI test and myastania gravis antibody test from the ophthalmologist. I'm not sure what those will show or if they are involved. I just know I want more thyroid med because right now I am still so exhausted. Woke up an hour ago and I already want to go back to bed! Yesterday, I went to an appointment then had friends over for dinner, and after that, I was toast! I know there's more to life than this! I just want a little piece of it back.
> 
> I'm not sure about the Nature tTyroid because right now, my hands are swollen up again after only 3 days. I notice that whenever I am really hypo, my hands start swelling. It was the first thing I noticed before the blood test in April where my TSH was 29. On Armour 120 mg, the swelling had gone away and was staying away, and now it seems to be back. I'm thinking of re-filling my Armour script and just sticking with that until I see the doc, but not sure of how good it is to keep switching back and forth.


It is not good; each time causes a major set back. Consistency is key in all things with thyroid disease.


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## lavender

yeah, maybe I pushed the doc to quick with the switch to Nature Thyroid. I just get so darn impatient when I'm feeling bad, and I forget to keep it all in perspective. I keep thinking if I'm going back to Armour, it would be better sooner rather than later.


----------



## lavender

Just got a call back from the dermatologist, and my nose swab came back positive for klebsiella bacteria. Now I get to start on antibiotics too! Doc's got to decide if they're going to risk something in the penecillin category since I appeared to get itching after I started taking amoxicillin in my thyroid storm last year. Don't know if it was an actual allergic reaction or the thyroid storm that caused the itching, but now they have to be extra careful.

I need to go stock up on some yogurt, and do some reading about klebsiella.....


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## lavender

Just wanted to check in. I had a bad reaction to the antibiotic, could only stomach it for 3 days, literally, I was throwing it up and had a horrible headache from the meds. I kept trying to take it on the advice of the pharmacist since I couldn't get a hold of my doctor through the weekend. Last night, I took it and started coughing and choking about an hour later, which I think was my throat swelling up. I was still having a hard time talking this morning. Needless to say, the doc took me off the antibiotic, and now I am using 2 topical antibiotics.

Sigh. I know none of this is related to my thyroid, but I am just so tired right now and I want to feel better. Today was a beautiful day. I met some friends in the park for a picnic, and now I am home ready to crash.


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## Andros

lavender said:


> Just wanted to check in. I had a bad reaction to the antibiotic, could only stomach it for 3 days, literally, I was throwing it up and had a horrible headache from the meds. I kept trying to take it on the advice of the pharmacist since I couldn't get a hold of my doctor through the weekend. Last night, I took it and started coughing and choking about an hour later, which I think was my throat swelling up. I was still having a hard time talking this morning. Needless to say, the doc took me off the antibiotic, and now I am using 2 topical antibiotics.
> 
> Sigh. I know none of this is related to my thyroid, but I am just so tired right now and I want to feel better. Today was a beautiful day. I met some friends in the park for a picnic, and now I am home ready to crash.


Oh, my dear!! What was the name of the antibiotic? Hope it was not in the Quinalone family? Levaquin, Cipro, Flouroquinalone etc.????

By the way, that bacteria strain is often found in those of us who have compromised immune systems.


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## Andros

lavender said:


> Just wanted to check in. I had a bad reaction to the antibiotic, could only stomach it for 3 days, literally, I was throwing it up and had a horrible headache from the meds. I kept trying to take it on the advice of the pharmacist since I couldn't get a hold of my doctor through the weekend. Last night, I took it and started coughing and choking about an hour later, which I think was my throat swelling up. I was still having a hard time talking this morning. Needless to say, the doc took me off the antibiotic, and now I am using 2 topical antibiotics.
> 
> Sigh. I know none of this is related to my thyroid, but I am just so tired right now and I want to feel better. Today was a beautiful day. I met some friends in the park for a picnic, and now I am home ready to crash.


Are you doing better today?


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## lavender

Doxycycline.

I am feeling better today, but worried about this thing ever healing. I'm relieved to be off an oral antibiotic and not have to deal with all the yuckiness anticipated yeast infection and what not, but worried if this thing will really clear up. As you said, it sounds like an opportunistic infection, and if I can't take antibiotics anymore, how will they treat it or anything else? I can't take anything in the penicillin family anymore either.

I'm allergic to any kind of adhesive, and now have small sores around the large one from the tape. I'm trying to find a way to keep it covered without tape to prevent more spreading and not sure at what point I should call the doc again over these little sores. The whole thing is on my breast, so I can keep a bandage secure with my bra during the daytime (hope that's not too many details), and just use the tape at night. Maybe I could get a loose sports bra that I could stand to wear at night and ditch the tape all together.


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## Andros

lavender said:


> Doxycycline.
> 
> I am feeling better today, but worried about this thing ever healing. I'm relieved to be off an oral antibiotic and not have to deal with all the yuckiness anticipated yeast infection and what not, but worried if this thing will really clear up. As you said, it sounds like an opportunistic infection, and if I can't take antibiotics anymore, how will they treat it or anything else? I can't take anything in the penicillin family anymore either.
> 
> I'm allergic to any kind of adhesive, and now have small sores around the large one from the tape. I'm trying to find a way to keep it covered without tape to prevent more spreading and not sure at what point I should call the doc again over these little sores. The whole thing is on my breast, so I can keep a bandage secure with my bra during the daytime (hope that's not too many details), and just use the tape at night. Maybe I could get a loose sports bra that I could stand to wear at night and ditch the tape all together.


I still think you have Lupus. Your body is attacking it's self big time here. I am so so sorry for you right now, Lavender! You are such a wonderful lady and you don't deserve this.

I have to ask. Did doc do a slide for staph, Clostridium difficile and MRSA?? Something is going on here. Better safe than sorry. C Difficile is easily acquired IN doctor's offices.

That is a good idea to get a sports bra. You will be much more comfortable with that and no allergic reaction to the adhesive.

My poor friend.


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## webster2

Lavender,
I am so sorry you are not feeling well, and have had such a tough road. I hope someone will figure it out soon. I, too, have been shoving some delightful cream up my nose for something that won't heal. I have stuff on my scalp that won't heal. I never thought they might be connected to autoimmune or thyroid. I am adding you to my prayer list. Feel better. (())


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## lavender

I'm not sure what exactly she checked for. She did a swab of my nose and sent if for a culture. Nothing from the lesion itself. Just said she would consider biopsying it when I go back, which is still 2 weeks away. Right nwo I feel like I sit around and wait for doctor appointments, LOL.

I'm so tired all the time. I have barely been able to convince myself to go out and buy groceries, cook, do laundry, anything. I was out with friends for a few hours yesterday and came home and collapsed. I am thinking more clearly and in less pain, but I have no energy whatsoever. And I just get so anxious that the docs are not paying attention, putting the pieces together. I want to trust my docs, but I've had a bad track record here. I look healthy, nothing appears seriously wrong, but I'm exhausted and I have no life anymore. I'm just not sure where to turn for help and I feel like the docs are just waiting to see if anything gets better when I want someone to wave a magic wand.

I see my chiropractor tomorrow. She's a great resource and may be able to suggest something. Labs next Monday and then I see the doc on Wednesday. I'll take in the list of Lupus labs and try to get the courage up to ask her to test them. I have a friend with Lupus who I would love to bring around for support, but she's not feeling so well, and I'm afraid to be around anyone who's sick because I don't know if I'm contagious or not and I don't want to make someone else sick.

I never use anti-bacterial anything because I have read that the stuff is responsible for all these drug resistant bacteria, but I went out and bought anti-bacterial everything this week. I want to do everything I can to keep this thing from spreading.


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## lavender

Thanks Webster. At least I know I'm not alone sticking goo up my nose. Now I'm sitting here bawling like a baby and afraid that my snot is contaminated, LOL!


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## Evernight74

I think we all should take Andros with us to our doctors appointments!!! He is the best!


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## webster2

I always worry my snot & the goo are running down my face without my knowing! Pretty picture, huh!?!?!

Today was a couch day here. Long day yesterday, topped off with an exciting trustee meeting at work. I am looking into the FMLA.

Hang in there! Hopefully the missing piece will show up soon.


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## Andros

webster2 said:


> Lavender,
> I am so sorry you are not feeling well, and have had such a tough road. I hope someone will figure it out soon. I, too, have been shoving some delightful cream up my nose for something that won't heal. I have stuff on my scalp that won't heal. I never thought they might be connected to autoimmune or thyroid. I am adding you to my prayer list. Feel better. (())


Sounds like Lupus Erythemia to me. Aaaaaaaaaaaaaaargh.


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## webster2

Andros said:


> Sounds like Lupus Erythemia to me. Aaaaaaaaaaaaaaargh.


 I meet with my GP on the 24th. I am going to get him to run the labs you suggested. When it rains it pours?hugs6hugs6 Goodness....even in the nose????


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## lavender

I get sores on my scalp too. If I don't shampoo everyday, I get itchy, and big flakes fall off leaving puffy sores. I use tea tree oil shampoo every day and leave it on for 10 minutes to keep it at bay.


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## webster2

Evernight74 said:


> I think we all should take Andros with us to our doctors appointments!!! She is the best!


Sounds like a good deal to me!


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## webster2

lavender said:


> I get sores on my scalp too. If I don't shampoo everyday, I get itchy, and big flakes fall off leaving puffy sores. I use tea tree oil shampoo every day and leave it on for 10 minutes to keep it at bay.


 Mine aren't too itchy. Sometimes they're painful and puffy, sometimes they ooze. Sounds great, huh?!? I've been using Pert shampoo, and it seems to keep them dried down a bit.

Sounds like these auto immune things are from head to toe. I was surprised at how difficult stairs have become to navigate. I've always biked and kayaked during the summer. Biking at least 10 miles a day, I miss it. I wonder if I will do that again.

The potential weight gain has me pretty worried. Did that happen to you?

I have to get ready for work. The big question is how long will I make it today?! Were you able to continue working? I hope the FMLA will be applicable in my situation. Two of our trustees are ready to can me. The only saving grace is I have been there forever, and am familiar with all aspects of the job.

I hope you will feel much better today.


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## lavender

Auto-immune affects a lot more than we know, but I think when symptoms go beyond the thyroid, it's necessary to keep looking for additional diagnoses. I hate to admit that I think more is going on with me than just hypothyroid at this point because I really thought my thyroidectomy was going to set me on a better path toward healing, and it has just brought up more complications and health issues.

I haven't been able to spend a summer in the way that I like for years because when I expend a lot of energy at once, I always end up paying for it later, no matter how good it feels at the time. Just a few months ago, I went hiking for the first time in years. I felt great, and thought it was a sign of who well I was doing, and then in a matter of weeks, I was barely leaving my apartment from the fatigue as my thyroid levels bottomed out again.

I still want to hike and kayak and camp the way I love. I have always dreamed of hiking and white water rafting through the Grand Canyon. I don't know if I can give up on that dream yet.

I have gained some weight, but I was already overweight. I did not loose while hyperthyroid as expected until the very end when I was in thyroid storm. I have gained further weight since being hypo. I keep telling myself that I want to get it off when I feel better and have energy for exercise, but I'm loosing hope. It's hard to motivate myself to do something totally new when I see very little progress.

I haven't worked since last May when I went in the hospital. I worked as long as I could in thyroid storm, would go in for a half day or even an hour when I couldn't make it a full day. But then I would be on the verge of collapse. I loved my job. I was a case manager for a transitional housing program for 12 homeless women. I had worked really hard to build up a solid program so those women would have a safe place to call home, and it was really hard to let go of.

I was fighting the docs to let me out of the hospital so I could go back to work, then I was shocked when my doc wrote me off work for a month. I didn't improve on anthi-thyroid meds, and was sure I would feel better after surgery, but by then my FMLA was up and I was let go. I returned to graduate school this fall. I want to get a counseling license, but I have had to take classes half time to get through. I thought I would be able to get a summer job, but I don't have the energy to attend to my basic needs right now, let alone to be a reliable employee. I had someone offer me a regular dog walking gig, but I collapsed for an entire weekend after walking the dog once.

Sigh. It's been a downer couple of days, and dwelling on all this isn't helping. I'm just not sure what will at this point. Off to the chiropractor to see if she has any suggestions. At least I know she will cheer me up.


----------



## Andros

lavender said:


> Auto-immune affects a lot more than we know, but I think when symptoms go beyond the thyroid, it's necessary to keep looking for additional diagnoses. I hate to admit that I think more is going on with me than just hypothyroid at this point because I really thought my thyroidectomy was going to set me on a better path toward healing, and it has just brought up more complications and health issues.
> 
> I haven't been able to spend a summer in the way that I like for years because when I expend a lot of energy at once, I always end up paying for it later, no matter how good it feels at the time. Just a few months ago, I went hiking for the first time in years. I felt great, and thought it was a sign of who well I was doing, and then in a matter of weeks, I was barely leaving my apartment from the fatigue as my thyroid levels bottomed out again.
> 
> I still want to hike and kayak and camp the way I love. I have always dreamed of hiking and white water rafting through the Grand Canyon. I don't know if I can give up on that dream yet.
> 
> I have gained some weight, but I was already overweight. I did not loose while hyperthyroid as expected until the very end when I was in thyroid storm. I have gained further weight since being hypo. I keep telling myself that I want to get it off when I feel better and have energy for exercise, but I'm loosing hope. It's hard to motivate myself to do something totally new when I see very little progress.
> 
> I haven't worked since last May when I went in the hospital. I worked as long as I could in thyroid storm, would go in for a half day or even an hour when I couldn't make it a full day. But then I would be on the verge of collapse. I loved my job. I was a case manager for a transitional housing program for 12 homeless women. I had worked really hard to build up a solid program so those women would have a safe place to call home, and it was really hard to let go of.
> 
> I was fighting the docs to let me out of the hospital so I could go back to work, then I was shocked when my doc wrote me off work for a month. I didn't improve on anthi-thyroid meds, and was sure I would feel better after surgery, but by then my FMLA was up and I was let go. I returned to graduate school this fall. I want to get a counseling license, but I have had to take classes half time to get through. I thought I would be able to get a summer job, but I don't have the energy to attend to my basic needs right now, let alone to be a reliable employee. I had someone offer me a regular dog walking gig, but I collapsed for an entire weekend after walking the dog once.
> 
> Sigh. It's been a downer couple of days, and dwelling on all this isn't helping. I'm just not sure what will at this point. Off to the chiropractor to see if she has any suggestions. At least I know she will cheer me up.


Lavender.............................don't get discouraged!! It is easy to do when you don't feel well and your whole life is going to poo.

I was were you are and it wasn't purty. That said, I sure hope I can give you and many others hope that life will be good again because it will be.

You will see. Meanwhile, I and others are here for you to lean on.

It is easy to see that you are much loved by many members on this board.


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## lavender

I know Andros, you give me hope that I will be twice my age and walking 8 miles a day like you. I still have hope that my best years are to come. It's just hard to be patient.

Bless my chiropractor! She says I need more nutrition since I haven't had much energy to cook, and sent me home with a free bottle of pre-natal vitamins. She keeps telling me that some years ask questions and some years answer them, and that this year is a year of questions. She says I may not know the lessons for a long time, but they are there. I started seeing her when this whole thing started, and she has been the best ally and resource I could imagine. It took me years to justify spending the money to see her, and I am so glad I have. I am finally living in less pain without drugs. I don't know if its her or what is working, but something is.


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## webster2

lavender said:


> I know Andros, you give me hope that I will be twice my age and walking 8 miles a day like you. I still have hope that my best years are to come. It's just hard to be patient.
> 
> Bless my chiropractor! She says I need more nutrition since I haven't had much energy to cook, and sent me home with a free bottle of pre-natal vitamins. She keeps telling me that some years ask questions and some years answer them, and that this year is a year of questions. She says I may not know the lessons for a long time, but they are there. I started seeing her when this whole thing started, and she has been the best ally and resource I could imagine. It took me years to justify spending the money to see her, and I am so glad I have. I am finally living in less pain without drugs. I don't know if its her or what is working, but something is.


Wise words. I can see where she has been very helpful to you. I am glad you have her to help you. I am thinking some big dietary changes are in my future. I am a candy junkie so it will be hard. We can do this, it may take time but we can live an active life, eventually!


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## lavender

I wanted to check in for an update today. I had a long day today. 3 doctor's appointments, and I am exhausted!

I actually have some good news, which is that my skin infection is healing. the dermatologist says it looks like there's just scar tissue at this point. I was worried that it still looks gross, and am relieved to hear it's only scar tissue! I was also a bit afraid to go swimming with this thing. So hearing that's it's healing means I will be in the pool, and the pond when I go camping next weekend!

The ophthalmologist said that my TSI test came back high (didn't ask how high) which shows that I do have the piece of Graves that affects vision. Interesting, I didn't know that TSI was directly related to vision, but now I know. The tests for Mystania Gravis all came back negative, which is a relief. He tested my vision again, and gave me a script for a stick on prisym in my left lens. He said he only wants to put it in my non-dominant eye because it can make vision less clear. Doesn't make a lot of sense to me since I am seeing worse out of my right eye.

Had more labs run on Monday:

T3 UPTAKE 0.85	(0.75 - 1.23)	
T4 TOTAL THYROXIN	7.6	(4.5 - 10.9	)	
FREE THYROXIN INDEX	6.5	(4.2 - 13.0	)
TSH, HIGH-SENSITIVITY	9.171	(0.550 - 4.780)
Free T4 .89 (.89-1.76)
Free T3 2.3 (2.3-4.2)

The doc increased my dose of Armour from 120mg to 150mg. She had the script out the pharmacy before I even saw her. Interesting that my TSH jumped back up quite a bit again, when my T3 only went down .1. I wonder what it is that makes my TSH go all over the place like that when I am on the same dose that I was on 3 weeks ago when my TSH was 4.4.

I have been having a lot of heart palpitations again and my heart's been racing quite a bit. It was really high in the doctor's office as well. My pulse was 120, and my BP was 140/100, the highest it has ever been except for when I was in the hospital in thyroid storm last year. That earned me an EKG, which basically just showed that my heart was beating really fast. I got a script for Atenolol. And the doc finally broke down and wrote the cardiac referral. I think that gives some explanation about my level of fatigue lately, and probably the dizziness.

I get to go back in tomorrow for more blood work to check on adrenal functioning and kidney functioning. I have been having unusual back pain, and that's why she's checking my kidneys. The adrenal is to see if that's affecting my thyroid levels.

At this point, I think there's a whole lot more than just my thyroid going on, and I am glad she's checking in to other things. I still want to talk with her about checking for other Auto-immune issues, but decided to wait to see how these labs come out. We really covered a lot today, and broaching the topic of Lupus was more than I could manage. She is following up on me, and I think I will feel a lot more comfortable pushing her for further testing once we have some more pieces of the puzzle.

I'm just waiting for the day when I can report that I feel well again....


----------



## Andros

lavender said:


> I wanted to check in for an update today. I had a long day today. 3 doctor's appointments, and I am exhausted!
> 
> I actually have some good news, which is that my skin infection is healing. the dermatologist says it looks like there's just scar tissue at this point. I was worried that it still looks gross, and am relieved to hear it's only scar tissue! I was also a bit afraid to go swimming with this thing. So hearing that's it's healing means I will be in the pool, and the pond when I go camping next weekend!
> 
> The ophthalmologist said that my TSI test came back high (didn't ask how high) which shows that I do have the piece of Graves that affects vision. Interesting, I didn't know that TSI was directly related to vision, but now I know. The tests for Mystania Gravis all came back negative, which is a relief. He tested my vision again, and gave me a script for a stick on prisym in my left lens. He said he only wants to put it in my non-dominant eye because it can make vision less clear. Doesn't make a lot of sense to me since I am seeing worse out of my right eye.
> 
> Had more labs run on Monday:
> 
> T3 UPTAKE 0.85	(0.75 - 1.23)
> T4 TOTAL THYROXIN	7.6	(4.5 - 10.9	)
> FREE THYROXIN INDEX	6.5	(4.2 - 13.0	)
> TSH, HIGH-SENSITIVITY	9.171	(0.550 - 4.780)
> Free T4 .89 (.89-1.76)
> Free T3 2.3 (2.3-4.2)
> 
> The doc increased my dose of Armour from 120mg to 150mg. She had the script out the pharmacy before I even saw her. Interesting that my TSH jumped back up quite a bit again, when my T3 only went down .1. I wonder what it is that makes my TSH go all over the place like that when I am on the same dose that I was on 3 weeks ago when my TSH was 4.4.
> 
> I have been having a lot of heart palpitations again and my heart's been racing quite a bit. It was really high in the doctor's office as well. My pulse was 120, and my BP was 140/100, the highest it has ever been except for when I was in the hospital in thyroid storm last year. That earned me an EKG, which basically just showed that my heart was beating really fast. I got a script for Atenolol. And the doc finally broke down and wrote the cardiac referral. I think that gives some explanation about my level of fatigue lately, and probably the dizziness.
> 
> I get to go back in tomorrow for more blood work to check on adrenal functioning and kidney functioning. I have been having unusual back pain, and that's why she's checking my kidneys. The adrenal is to see if that's affecting my thyroid levels.
> 
> At this point, I think there's a whole lot more than just my thyroid going on, and I am glad she's checking in to other things. I still want to talk with her about checking for other Auto-immune issues, but decided to wait to see how these labs come out. We really covered a lot today, and broaching the topic of Lupus was more than I could manage. She is following up on me, and I think I will feel a lot more comfortable pushing her for further testing once we have some more pieces of the puzzle.
> 
> I'm just waiting for the day when I can report that I feel well again....


Wow!! A lot of this is good news. So glad about the stick-on prism, the labs and so on.

I am still thinking Lupus antibodies wreaking havoc causing a rise in your TSH.

So glad you don't have MG.

Your doctor sounds so wonderful; very caring.

Let us know how that prism works out for you. I know you have a lot of reading to do all the time so this is of a great concern.

Hugs,


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## lavender

I'm suspecting lupus more and more myself, but just couldn't spring one more thing on the doc yesterday. I am finally feeling satisfied and a bit more confidence in her. I have a hard time trusting folks, especially docs after everything I have been through. I'm a bit anxious for today test results. I tried to take a nap today and had to get up like ever 15 minutes to pee little tiny bits and I feel really nauseous. I did drink a lot of water last night in order to be well hydrated for my blood draw this morning, but I think my symptoms are at a point where I suspect something with my kidneys.

It's strange. I can tell I'm really sick again. But for some reason I feel this sense of calm. Like it's all being worked out. The pieces of the puzzle are finally showing up so I can get some docs to help me put them together. For so many years, I have felt sick without enough evidence of what was going on. It's similar to how I felt in thyroid storm last year. Really sick, but also relieved to have a diagnosable condition and docs paying attention.

I just hope that once I have a diagnosis, there's some hope for treatment. Some day I want to have a life again. A job I love. Hiking and being outside. Babies. I'm just trying to keep faith and live through each day as is comes. I know people with lupus who have good lives, and I want that to be me. I just need a doc to put it all together and help me come up with a treatment plan.


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## webster2

lavender said:


> I'm suspecting lupus more and more myself, but just couldn't spring one more thing on the doc yesterday. I am finally feeling satisfied and a bit more confidence in her. I have a hard time trusting folks, especially docs after everything I have been through. I'm a bit anxious for today test results. I tried to take a nap today and had to get up like ever 15 minutes to pee little tiny bits and I feel really nauseous. I did drink a lot of water last night in order to be well hydrated for my blood draw this morning, but I think my symptoms are at a point where I suspect something with my kidneys.
> 
> It's strange. I can tell I'm really sick again. But for some reason I feel this sense of calm. Like it's all being worked out. The pieces of the puzzle are finally showing up so I can get some docs to help me put them together. For so many years, I have felt sick without enough evidence of what was going on. It's similar to how I felt in thyroid storm last year. Really sick, but also relieved to have a diagnosable condition and docs paying attention.
> 
> I just hope that once I have a diagnosis, there's some hope for treatment. Some day I want to have a life again. A job I love. Hiking and being outside. Babies. I'm just trying to keep faith and live through each day as is comes. I know people with lupus who have good lives, and I want that to be me. I just need a doc to put it all together and help me come up with a treatment plan.


I am sorry you are not feeling well, but glad you have a calm feeling about it. I will pray that things are worked out quickly for you, and that you will have all of the things you want in life. I hope you will have a treatment plan in place soon.

I know something is going on with me again. It is strange how we know these things. My body feels like it has absolutely no moisture. My mouth and scalp are broke out. I regret taking good health fro granted, and that it would always be there. I've convinced my husband to go gluten free with me.

Last year, the principal in our town was diagnosed with Lupus. She was treated but her health didn't improve. She had to leave a job she was great at and loved. After some time. it was found she didn't have Lupus at all. She had to wait until the medication she was taking left her body to be diagnosed correctly. She was diagnosed with Sjorgrn's (??). Any way, she is my inspiration, today she looks wonderful: is jogging, has a life. I want that for all of us.
:hugs:

sue


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## lavender

Oh, that gives me hope. I read a bit about lupus last night. The more I read, the more it all sounds familiar. I know I'm not crazy, and never have been with all these random symptoms. I just think enough needs to show up at once for it to all make sense to those scientist doctor folks.


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## Andros

lavender said:


> I'm suspecting lupus more and more myself, but just couldn't spring one more thing on the doc yesterday. I am finally feeling satisfied and a bit more confidence in her. I have a hard time trusting folks, especially docs after everything I have been through. I'm a bit anxious for today test results. I tried to take a nap today and had to get up like ever 15 minutes to pee little tiny bits and I feel really nauseous. I did drink a lot of water last night in order to be well hydrated for my blood draw this morning, but I think my symptoms are at a point where I suspect something with my kidneys.
> 
> It's strange. I can tell I'm really sick again. But for some reason I feel this sense of calm. Like it's all being worked out. The pieces of the puzzle are finally showing up so I can get some docs to help me put them together. For so many years, I have felt sick without enough evidence of what was going on. It's similar to how I felt in thyroid storm last year. Really sick, but also relieved to have a diagnosable condition and docs paying attention.
> 
> I just hope that once I have a diagnosis, there's some hope for treatment. Some day I want to have a life again. A job I love. Hiking and being outside. Babies. I'm just trying to keep faith and live through each day as is comes. I know people with lupus who have good lives, and I want that to be me. I just need a doc to put it all together and help me come up with a treatment plan.


We don't want our "SuperMod" to be sick. By the way, Lupus does get the kidneys.

Let me tell you........................I have a very very good life!! As you know, I am a really really active 68 year old woman. Nothing stops me.

http://www.lupus.org/webmodules/web...aboutintroduction.aspx?articleid=100&zoneid=9

You are ever in my prayers;

I am very distrustful of doctors. So much so that I never say anything is wrong with me. I just say I am fine. I have issues which I would like to address but I trust no one. And with good reason.

Sad; but true.


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## webster2

Andros, you are my inspiration too! I know with people like you around to support us, we will succeed too! :hugs:

Thank you for all of your support, information, and kindness!


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## Andros

webster2 said:


> Andros, you are my inspiration too! I know with people like you around to support us, we will succeed too! :hugs:
> 
> Thank you for all of your support, information, and kindness!


If I have anything to do with it; you will, you will, you will.

Remember the story of the "Little Engine That Could?"

You are so very welcome. If I save even one life, my own life will have been worth living! That's my motto!


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## webster2

Andros said:


> If I have anything to do with it; you will, you will, you will.
> 
> Remember the story of the "Little Engine That Could?"
> 
> You are so very welcome. If I save even one life, my own life will have been worth living! That's my motto!


You are just wonderfully wonderful, no doubt about it! You have already made my life, and my loved ones, so much easier! Thank you again my friend! :hugs:


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## lavender

Andros said:


> We don't want our "SuperMod" to be sick. By the way, Lupus does get the kidneys.
> 
> Let me tell you........................I have a very very good life!! As you know, I am a really really active 68 year old woman. Nothing stops me.
> 
> http://www.lupus.org/webmodules/web...aboutintroduction.aspx?articleid=100&zoneid=9
> 
> You are ever in my prayers;
> 
> I am very distrustful of doctors. So much so that I never say anything is wrong with me. I just say I am fine. I have issues which I would like to address but I trust no one. And with good reason.
> 
> Sad; but true.


Yup, it's the combo of heart + kidney symptoms that are making me suspicious now. Something happened to make my heart rate and BP suddenly skyrocket. And it's not my thyroid this time. I feel like I'm sitting around waiting for the signal that it's time to the hospital. I knew last year with the Graves when I woke up with chest pain. I hope I don't have to get there again, but sense it coming. And something about it all feels a little less scary this time because I have already been there. I know if I end up there again that emergency medicine is amazing, and I will be taken care of. I just wish preventative medicine was a little bit better!

I read something last night about the waxing and waning of lupus symptoms and how Lupus patients often feel like they have a flu bug that just won't go away. That's me dead on. For 4 years prior to my graves diagnosis, I would have months-long bouts of the flu every year, and then I would eventually get better again. I knew it wasn't the flu, but the docs kept telling me it was. I finally got the fibro diagnosis in the midst of one bout, but the bloodwork to rule out Lupus was never done. And then fibro became a great reason to dismiss any other concern I had.

Thankfully, this doc is not dismissing me. So, now I just wait until enough pieces add up together....


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## Andros

webster2 said:


> You are just wonderfully wonderful, no doubt about it! You have already made my life, and my loved ones, so much easier! Thank you again my friend! :hugs:


<blushes> No claim to fame; just doing what I think the Good Lord would have me do.

And when I see results and see people encouraged, it fills my cup. It's not like I don't benefit for I "really" do!


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## webster2

Andros said:


> <blushes> No claim to fame; just doing what I think the Good Lord would have me do.
> 
> And when I see results and see people encouraged, it fills my cup. It's not like I don't benefit for I "really" do!


I think He is very happy. Thank you!


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## lavender

Wanted to check in again. I got more labs back, and everything is "normal," even though I don't feel normal, lol. None of this stuff is thyroid, but I'm posting it in the off chance that anyone here understands any of it. For now, I am just waiting to go back to my doc next week. I get to see the cardiologist on July 17th. Thrilling.

6/23/11
AM CORTISOL 19.41	3.09 - 22.40
CALCIUM 8.8 8.6 - 10.0	
MAGNESIUM,SERUM	2.2 1.6 - 2.6	
BUN 8 6.0 - 20.0	
SODIUM 139 136 - 145 
POTASSIUM 4.0 3.5 - 5.1	
CHLORIDE 104 98 - 107	
CARBON DIOXIDE (CO2) 25	21 - 31	
CREATININE SERUM	0.72 0.60 - 1.10	
ANION GAP 14 
BUN/CREA RATIO	11 
ESTIMATED GFR, >60


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## Andros

lavender said:


> Wanted to check in again. I got more labs back, and everything is "normal," even though I don't feel normal, lol. None of this stuff is thyroid, but I'm posting it in the off chance that anyone here understands any of it. For now, I am just waiting to go back to my doc next week. I get to see the cardiologist on July 17th. Thrilling.
> 
> 6/23/11
> AM CORTISOL 19.41	3.09 - 22.40
> CALCIUM 8.8 8.6 - 10.0
> MAGNESIUM,SERUM	2.2 1.6 - 2.6
> BUN 8 6.0 - 20.0
> SODIUM 139 136 - 145
> POTASSIUM 4.0 3.5 - 5.1
> CHLORIDE 104 98 - 107
> CARBON DIOXIDE (CO2) 25	21 - 31
> CREATININE SERUM	0.72 0.60 - 1.10
> ANION GAP 14
> BUN/CREA RATIO	11
> ESTIMATED GFR, >60


Your kidneys (GFR) are good; we always like to see that.
http://www.kidneyfund.org/kidney-health/kidney-tests/kidney-test-egfr.html

Anion Gap may be a bit high so I would ask doc. Don't know much about it myself.

The anion gap can be normal, low or high, and each result has a different clinical implication.

NORMAL ANION GAP. In this case there is no lab evidence for anion gap acidosis. This result does not always rule out an anion gap acidosis, but certainly makes that diagnosis unlikely.

VERY LOW OR NEGATIVE ANION GAP. There are several reasons why this can occur, including: 
halide ion measured as chloride, as seen in bromism (some cough medications contain dextromethorphan bromide); 
excess unmeasured cation, as seen in lithium toxicity; 
reduction in the unmeasured anions, as seen in hypo-proteinemia; a 1 gm/dl decrease in serum albumin causes a 2.5 mEq/L drop in the AG. 
presence of abnormal, positively charged proteins (paraproteins), as may occur in multiple myeloma. 
Except for hypoproteinemia, conditions that cause a reduced or negative anion gap are relatively rare compared to those associated with an elevated anion gap.

ELEVATED ANION GAP. The patient may have an anion gap metabolic acidosis (Table 8-1). The higher the gap above normal the more likely this will be the case.

The thing is, I can't find what range is considered normal so your doc would know.
http://cjasn.asnjournals.org/content/2/1/162.full.pdf
http://www.lakesidepress.com/pulmonary/ABG/bicarbgap.98.htm


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## lavender

There was no range given for Anion Gap, Bun/Crea Ratio, or Estimated GFR. I looked up Anion Gap, and saw normal ranges of 8-16 in several places.

It is good to know that my kidneys are in good shape. The new back pain must be from some other cause. The doc seemed to think it was a muscle thing.


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## Andros

lavender said:


> There was no range given for Anion Gap, Bun/Crea Ratio, or Estimated GFR. I looked up Anion Gap, and saw normal ranges of 8-16 in several places.
> 
> It is good to know that my kidneys are in good shape. The new back pain must be from some other cause. The doc seemed to think it was a muscle thing.


I hope that is all it is. Try some soothing soaks in the tub. And a few "gentle" back exercises.


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## lavender

I wanted to follow up again since I saw my doc yesterday.

She was concerned that my Cortisol was a bit high even though it's in the normal range. I just love having a doc who is willing to look beyond the "normal" range! Her suggestion is for me to take 25 mgs DHEA daily and to follow up in a month.

I finally got the nerve up to talk to her about seeing a rheumatologist, and she agreed to the referral with no problem. I got the call from the rheumatolgoy clinic yesterday and I am scheduled for the end of August with a guy who specializes in Fibro and Lupus. I'm going to ask if he will do tests to rule out Lupus and other auto-immune conditions besides just the fibro.

My doc also ran more thyroid labs. I will post when I get the results.

I'm actually feeling pretty happy with her finally. I realized that it takes me a while to start knowing and trusting a doc. I'm just so relieved to have someone who takes time with me, and is not telling me this is all mental.

Then she tells me she's going on maternity leave at the end of August. So, I have one more appointment with her . She spoke with me about who I can see in her office in the meantime. I have two options. Either another female doc or a male doc who she says runs lots of labs that are not all covered by insurance. First she said the female doc might be better because of cost, but then said the male doc might help uncover something she's missed. She suggested I might talk to him about cost/insurance. So I have a choice to make. I'm pretty confident that both docs will prescribe Armour since it is an alternative medicine center.

I thanked the doc at the end of the appointment. I guess I was just trained to be polite. She said, "I want you to be able to thank me because you're feeling better."

Next stop is the cardiologist next week. The good news is that my heart rate and BP were down so the atenolol seems to be doing something even if I am still havign heart palps.


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## Andros

lavender said:


> I wanted to follow up again since I saw my doc yesterday.
> 
> She was concerned that my Cortisol was a bit high even though it's in the normal range. I just love having a doc who is willing to look beyond the "normal" range! Her suggestion is for me to take 25 mgs DHEA daily and to follow up in a month.
> 
> I finally got the nerve up to talk to her about seeing a rheumatologist, and she agreed to the referral with no problem. I got the call from the rheumatolgoy clinic yesterday and I am scheduled for the end of August with a guy who specializes in Fibro and Lupus. I'm going to ask if he will do tests to rule out Lupus and other auto-immune conditions besides just the fibro.
> 
> My doc also ran more thyroid labs. I will post when I get the results.
> 
> I'm actually feeling pretty happy with her finally. I realized that it takes me a while to start knowing and trusting a doc. I'm just so relieved to have someone who takes time with me, and is not telling me this is all mental.
> 
> Then she tells me she's going on maternity leave at the end of August. So, I have one more appointment with her . She spoke with me about who I can see in her office in the meantime. I have two options. Either another female doc or a male doc who she says runs lots of labs that are not all covered by insurance. First she said the female doc might be better because of cost, but then said the male doc might help uncover something she's missed. She suggested I might talk to him about cost/insurance. So I have a choice to make. I'm pretty confident that both docs will prescribe Armour since it is an alternative medicine center.
> 
> I thanked the doc at the end of the appointment. I guess I was just trained to be polite. She said, "I want you to be able to thank me because you're feeling better."
> 
> Next stop is the cardiologist next week. The good news is that my heart rate and BP were down so the atenolol seems to be doing something even if I am still havign heart palps.


Lavender; how awesome!!! I am so glad you will finally be able to see the rheumatologist. I know you feel a huge burden lifted.

Really; that sounds like a really lovely "group" that have fallen into for your medical care.

Thinking outside the box is my idea of fun!

Did you start the DHEA yet? You must let us know how that goes!


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## webster2

Hello! Sounds there is some improvement on couple of fronts. Too bad about the doc's maternity leave, darn...but things do sound better. Hope it continues for you!


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## lavender

I haven't started DHEA yet. Only found 50 mg tablets at the store yesterday and need to keep looking. I have been reading up on it. Sounds like studies have shown it is effective for Lupus, depression and Adrenal issues. But it is actually a hormone with some potential side effects that make me wonder why it is available OTC. Anyway, I want to make sure I am taking the dose my doc prescribes and need to check out a few stores.


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## Andros

lavender said:


> I haven't started DHEA yet. Only found 50 mg tablets at the store yesterday and need to keep looking. I have been reading up on it. Sounds like studies have shown it is effective for Lupus, depression and Adrenal issues. But it is actually a hormone with some potential side effects that make me wonder why it is available OTC. Anyway, I want to make sure I am taking the dose my doc prescribes and need to check out a few stores.


I wonder that also. Do your research and decide what is best for you. Also, you may not want to take it until you see the rheumy as it could skew your Lupus tests. No?


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## lavender

I was wondering about that. And thinking do I try to make myself as sick as possible before the appointment to try and make sure something diagnosable shows up or just do what I can to feel better now and let the cards fall as they will? My understanding with Lupus is that some people never test positive for anything. I think my goal is to do anything I can to feel better rather than to fight to get a particular diagnosis.


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## bigfoot

lavender said:


> IBut it is actually a hormone with some potential side effects that make me wonder why it is available OTC.


After wandering the halls of hormone-land over the last year, I would be careful and definitely do some reading/research. (Wish I had done that myself.) At some point though, you just have to dive in and try things to see if they work for you.

:anim_32:


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## lavender

Well, my labs are finally looking a bit better this time. Only problem is I took my Armour that morning, a few hours before the blood draw. So, I am sure that falsely elevated my FT3. I would still like an increase in my Armour, but suppose I will have to wait until after my next blood draw. I just need to remember not to take me meds the AM of my next appointment.

7/13/2011--on 150 mg Armour
TSH, HIGH-SENSITIVITY	1.757	(0.550 - 4.780)
T3 FREE	4.6	(2.3 - 4.2)
T4 FREE	1.10	(0.89 - 1.76)

I'm still exhausted. Wondering if I will start to feel human again once this is stable for a while or if it will ever be stable.


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