# Doc Appointment Tomorrow



## lavender (Jul 13, 2010)

It's been two months since my thyroid was removed, and I have been feeling pretty down. My endo reduced my synthyroid 2 1/2 weeks ago because I was having heart palpitations feeling anxious and was seriously worried about my temper flares. 
Now, I have been depressed with no energy or motivation. Feeling hopeless about ever feeling normal again and wanting to cry all the time. 
After much prodding from friends, my therapist and my chiropractor, I called my Family doc's office Monday and told them how I really felt. They offered me an appointment Oct 26, and I told them that was not good enough, I was not sure I could make it that long. 
They had me come in today to draw labs (I am assuming just thyroid as I did not have an opportunity to discuss this with the doc) and I have an appointment tomorrow. 
I do feel better having taken action and stuck up for my needs. Now, I just need the courage to go in and tell her how I have really been feeling. It is absolutely terrifying for me to be honest with a medical professional when I feel depressed. I am scared that they are going to think I am crazy, but I know that unless I am honest, they will not be able to help me. 
If she thinks it's all my thyroid, I am going to tell her to have a talk with the Endo who keeps telling me it's not. I need someone who is willing to take me seriously and help me find out what is going on so that I can feel better!

I also had some success with my crazy low calcium issues since my parathyroids have been low functioning since surgery. I was taking 16 calcium pills a day to keep away low calcium symptoms. My endo wanted me to reduce the calcium, but had no suggestions to help me do this without feeling bad. I discussed it with my chiropractor yesterday, and she explained that I needed Magnesium and Vitamin D to help my body absorb the calcium. That I had to take so many Calcium because my body was not processing very much. Well, I took the Magnesium and Vitamin D, and was able to but my calcium in half yesterday with no ill effects! Same thing today! I will probably try to drop it even lower over the next few days since I figured it was better to go down gradually.


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## Andros (Aug 26, 2009)

lavender said:


> It's been two months since my thyroid was removed, and I have been feeling pretty down. My endo reduced my synthyroid 2 1/2 weeks ago because I was having heart palpitations feeling anxious and was seriously worried about my temper flares.
> Now, I have been depressed with no energy or motivation. Feeling hopeless about ever feeling normal again and wanting to cry all the time.
> After much prodding from friends, my therapist and my chiropractor, I called my Family doc's office Monday and told them how I really felt. They offered me an appointment Oct 26, and I told them that was not good enough, I was not sure I could make it that long.
> They had me come in today to draw labs (I am assuming just thyroid as I did not have an opportunity to discuss this with the doc) and I have an appointment tomorrow.
> ...


I am so glad you have an appt. for tomorrow and will be anxious to hear what the doc has to say.

You have been through a lot. Maybe the doc put you on thyroxine replacement too soon and now it is time. Labs will tell the story.

Let us know.


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## greatdanes (Sep 25, 2010)

Hopefully you get a better picture of what's going on at your apoinment. I have one this Friday, and I'm sure my GP will look at me like I have two heads when I tell him I think I have hashi and graves at the same time. However I will have my labs as proof so he can't say I'm crazy or dismiss me, lol. At this time I will also ask for another referal to swithch endos. It's nice to come to a place where we can talk about these issues. I'm starting to sound like a medical wikipedia to my friends, hehee.hugs1


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## Andros (Aug 26, 2009)

greatdanes said:


> Hopefully you get a better picture of what's going on at your apoinment. I have one this Friday, and I'm sure my GP will look at me like I have two heads when I tell him I think I have hashi and graves at the same time. However I will have my labs as proof so he can't say I'm crazy or dismiss me, lol. At this time I will also ask for another referal to swithch endos. It's nice to come to a place where we can talk about these issues. I'm starting to sound like a medical wikipedia to my friends, hehee.hugs1


That is not a two-headed statement. Hashi's often progresses into Graves'.

http://books.google.com/books?id=lQ...&resnum=6&ved=0CCcQ6AEwBQ#v=onepage&q&f=false


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## lavender (Jul 13, 2010)

Well, I just got back from seeing my doc. She said my TSH was 7. I do not think she ran any other labs yesterday. When I asked her about running additional labwork to check to see if anything else was going on, she said it was not necessary as my low thyroid levels explain my depression. She increased my snythroid back to 150, and has me coming back in two weeks for follow up. 
She was a bit confused by what my endo was doing when he lowered my dose, and said she thought there were too many different doctors treating this. She and the endo have access to the same electronic chart, and aparently, the endo never documented lowering my synthroid. She gave me more samples of the brand name, and agreed that it was not good for me to switch back and forth with the generic, especially because of all my medication allergies.
I told her about the heart palpitations I was having at 150 synthroid before, and she seemed to think it was likely something other than my thyroid. She talked about my PTSD and Fibromyalgia existing prior to Graves, and that treating my thyroid will not fix that. She said she does not want to prescribe anti-depressants or anti-anxiety meds for me because of my medication sensitivities. (which I agree with)
She suggested I meet with my therapist to work on ways to deal with anxiety and cope with other life stressors. Funny, I have had anxiety my whole life, but I never had a heart palpitation before this past spring when I went really hyper. Right now, I feel like my health is my biggest life stressor. 
She said that I felt bad before I had Graves, and that treating the Graves was not going to fix everything, and that basically she does not have all the answers.
Then she said that although she does not think there is enough good science around it, there is a doctor(another PCP) in her office who deals with natural thyroid replacement, and that is an option I should be aware of. She basically said the endo would not support this because of the lack of research about it. 
She actually talked with me for quite a long time and made some notes about symptoms that I told her are different from my pre-graves state.
I do not feel like a whole lot got solved in the appointment today, but I do feel better knowing that we have opened a dialogue and that I have someone to follow up with more closely than the endo is willing to do. I am interested to see what happens when I go back up to the 150 synthroid since I am not ready to give up on it completely yet, and I at least feel like I have an option if I want to explore natural thyroid hormone. 
I will have to say that the universe works mysteriously because I ran into my therapist as I was leaving her office! We talked for a few minutes, and I gave her a very brief run-down of the appointment. She suggested I keep a diary of how I am feeling for the next two weeks on a scale of 1-10 so I have something concrete for the doc. I know this is what I need to do because I am having a lot of difficulty remembering and reporting my symptoms, but I hate journaling! Every time I start for a day, I forget about it and never come back to it. Time to try again. 
My therapist also reminded me that I have the right to fire anyone I want to, and encouraged me to take some time to think about what I want to do.
So, I have some thinks to mull over for now. I need to put this aside for the rest of the day and finish a paper and study for a test tonight. Then, I am off to Montreal in the morning. I am hopeful that the time away will give me a chance to relax and have a good time and that this increase in synthroid will help something.


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## Andros (Aug 26, 2009)

lavender said:


> Well, I just got back from seeing my doc. She said my TSH was 7. I do not think she ran any other labs yesterday. When I asked her about running additional labwork to check to see if anything else was going on, she said it was not necessary as my low thyroid levels explain my depression. She increased my snythroid back to 150, and has me coming back in two weeks for follow up.
> She was a bit confused by what my endo was doing when he lowered my dose, and said she thought there were too many different doctors treating this. She and the endo have access to the same electronic chart, and aparently, the endo never documented lowering my synthroid. She gave me more samples of the brand name, and agreed that it was not good for me to switch back and forth with the generic, especially because of all my medication allergies.
> I told her about the heart palpitations I was having at 150 synthroid before, and she seemed to think it was likely something other than my thyroid. She talked about my PTSD and Fibromyalgia existing prior to Graves, and that treating my thyroid will not fix that. She said she does not want to prescribe anti-depressants or anti-anxiety meds for me because of my medication sensitivities. (which I agree with)
> She suggested I meet with my therapist to work on ways to deal with anxiety and cope with other life stressors. Funny, I have had anxiety my whole life, but I never had a heart palpitation before this past spring when I went really hyper. Right now, I feel like my health is my biggest life stressor.
> ...


Sounds to me like you had a real puppy upper day and that this doc is a "keeper!" She cares. You both can learn together.

The limbic system in the brain (mood related portion) is dependent upon sufficient T3 penetrating the blood brain barrier. T3 is vital to emotional well-being. So, for that reason, you do need sufficient Synthroid and if you are not converting well, consider adding T3 to the mix.

I really like the way this doctor talked to you. Not at all condescending and very caring.


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## Melimac (Sep 12, 2010)

I agree with Andros, I like the way your doctor spoke with you. You are a couple of weeks ahead of me with the TT. I had labs yesteray and will see my doctor tomorrow morning. I'm starting with my family practice doctor, who I really like, before continuing on with the endo. The endo usually keeps me waiting for over an hour and then spends less than 5 minutes with me, whereas the family practice doctor will have a real conversation with me.

I hope the 150 mcg helps with your symptoms.


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## lavender (Jul 13, 2010)

I am back home after a week in Montreal, and wanted to post an update. I really appreciate all the feedback, and have been talking this over with friends as well. 
I have been keeping a diary of symptoms. I have not been keeping up with it every day, but I am doing much better at writing things down than ever before. I hope this helps when I see my doc next. 
Depression has been much lower this past week. I am sure that the excitement of being on vacation and seeing my significant other for the first time in two months had a big impact on my mood. I also have had a chance to reflect on how much I have improved since my surgery. This was the first visit we have had together where I have not been completely incapacitated by illness since March! It helped to have someone else around who could give me another perspective on my illness and progress.
I was a lot more active than I expected. Traveling by subway and bus in a big city takes much more energy than my usual getting around by car. I was surprised at how active I was able to be as long as I took it slow and took breaks as needed. We took advantage of every sunny moment available in last bit of fall, and I was out walking around for several hours every day. This was pretty encouraging. I know it is harder to motivate myself to get out and exercise when I am home alone, but I want to do it because I do feel better now. 
I did notice that exhaustion started to set in towards the end of the trip. Yesterday was the worst. I slept on the bus/plane at every moment I could and barely had the energy to cart myself and my bags through the airports. I am concerned that this may have to do with increasing heart palpitations/heart rate since increasing the synthroid dose again. 
After a couple days on the 150 synthroid, I noticed that I was having heart palpitations again. They have gotten worse each day, and I have been checking my pulse, which has also been getting higher every day. I decided to drop back to the 137 synthroid one day because I was worried about my heart and did not want to end up in an ER in another country! Went back to the 150, and heart symptoms are increasing. Yesterday, I checked my pulse in the airport while I was waiting at baggage claim, and it was about 140! I had just walked across the airport, but I am still worried that this is way too high, and it had not gotten that high while I was out walking all week. 
My heart is my biggest concern right now. I see my doctor next week and will have a chance to discuss this all with her then. But it really scares me when I am having heart palpitations and my heart starts racing. Heart disease runs in my family. I had a grandmother who died of heart disease when I was 7, and then my father had a major heart attack and bypass surgery when I was 13. He was only 43. Going to the ER for chest pain in May was terrifying, and despite having been told that my heart is fine and that it was all caused by Graves disease, I still worry about the long term effect this will have on my heart. 
I know this is something that I need to discuss with my doctor, but I am wondering if other people have had heart palpitations/increased heart rate with an increase in synthroid. I know that 137 is too low for me, but I can hardly tolerate 150, and I am wondering if this will get better as I stay on the dose and my body gets used to it.


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## Andros (Aug 26, 2009)

lavender said:


> I am back home after a week in Montreal, and wanted to post an update. I really appreciate all the feedback, and have been talking this over with friends as well.
> I have been keeping a diary of symptoms. I have not been keeping up with it every day, but I am doing much better at writing things down than ever before. I hope this helps when I see my doc next.
> Depression has been much lower this past week. I am sure that the excitement of being on vacation and seeing my significant other for the first time in two months had a big impact on my mood. I also have had a chance to reflect on how much I have improved since my surgery. This was the first visit we have had together where I have not been completely incapacitated by illness since March! It helped to have someone else around who could give me another perspective on my illness and progress.
> I was a lot more active than I expected. Traveling by subway and bus in a big city takes much more energy than my usual getting around by car. I was surprised at how active I was able to be as long as I took it slow and took breaks as needed. We took advantage of every sunny moment available in last bit of fall, and I was out walking around for several hours every day. This was pretty encouraging. I know it is harder to motivate myself to get out and exercise when I am home alone, but I want to do it because I do feel better now.
> ...


Glad you had such a wonderful trip; that is very encouraging.

Have you checked your ferritin levels? Ferritin should be 50 to 100; the closer to 100, the better. If your ferritin is low, one cannot tolerate thyroxine increases too well. Some not at all.

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


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## midgetmaid (Jul 22, 2010)

Have you tried building up to the new dose gradually? My husband had to do that.

Renee


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## lavender (Jul 13, 2010)

midgetmaid said:


> Have you tried building up to the new dose gradually? My husband had to do that.
> 
> Renee


As far as I know, 150 is the next highest dose available above the 137 that I was on. I am not sure that there are any other more gradual options, but I will ask my doctor. I know I have read where some people have taken different doses on different days as in:
137 4 days a week and 150 the other 3
This is something I will keep in mind when I see my doc. I would feel more comfortable discussing it with her first.


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## lavender (Jul 13, 2010)

Andros said:


> Glad you had such a wonderful trip; that is very encouraging.
> 
> Have you checked your ferritin levels? Ferritin should be 50 to 100; the closer to 100, the better. If your ferritin is low, one cannot tolerate thyroxine increases too well. Some not at all.
> 
> Ferritin http://www.thewayup.com/newsletters/081504.htm


I am glad that I had a good time as well. It was nice to be able to do something besides worry about the state of my heath.

I am aware of the ferretin issue. You have suggested it to me several times. I asked my PCP if she could run any additional bloodwork when I saw her last week, and she was not at all receptive. She seemed to think that the heart palps could be explained by my PTSD, not issues with synthroid. I have been keeping the daily journal in hopes that I can show her that my heart palps and heart rate increase in direct response to raising my synthroid dose, and I will try to bring it up again when I see her next week.


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## CMantz (Jun 4, 2010)

I am not sure if this relates to synthetics as it does natural replacements but I have been reading up on natural replacements and you can experience heart palps when trying to up your replacement meds when you haven't address adrenal issues. The palps aren't caused by the thyroid meds, but rather the lack of adrenal function. Once you address adrenals and ferritin, you can gradually up your replacements meds without heart palps.

Does anyone know if this is true when on Synthroid?

I know this is what they preach on the Thyroidless yahoo group but they are anti-Synthroid.

Maybe something to ask your GP. Or join that group and post there.

I do understand what you are going through. My surgery was 2 months ago and I think I am going through a funk as well. I just don't feel as well as I did after surgery. Having depression issues, tired alot, some days feeling anxious, little motivation, etc. I had a blood draw yesterday and see the endo on Friday. It will be interesting to see where I am as far as labs and see what he recommends. At least I did get him to draw both FT4 and FT3!


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## lavender (Jul 13, 2010)

Depression seems to have lifted for now which tells me I can not tolerate a lower dose of synthroid. Heart symptoms have been a bit frightening at times.
I have heard that both Ferretin and adrenal issues can cause havoc with increasing thyroid doses. 
I see my doc tomorrow for follow up. I want to bring up both concerns with her, and I feel a bit intimidated. She is usually by the book science, and I am afraid that she will not take concerns seriously. I suppose there's no harm in asking. Trying to summon the courage. 
I am also due to get labs drawn for the endo this week, but I am not sure if it wouldn't be better to wait since my PCP just increased my dose 2 weeks ago after drawing labs then.

I have been to the thyroidless site, but I got turned off pretty quickly because: 
1. I am not mad that my thyroid was removed. I wanted it out, and despite the struggle, I feel quite relieved that it is gone. 
2. I feel pretty suspicious of anyone telling me that there is only one treatment that works for everyone. Just like I am suspicious when my endo tells me synthroid is the only option, I am suspicious when a group of people tell me that synthroid works for no one. 
3. I feel reluctant to pay for a bunch of lab work without a doctor to help me sort it out and help me come up with a treatment plan. I value sound medical advice, and I am not going to self medicate on the advice I get off the internet.
Just my opinion.


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## Andros (Aug 26, 2009)

lavender said:


> Depression seems to have lifted for now which tells me I can not tolerate a lower dose of synthroid. Heart symptoms have been a bit frightening at times.
> I have heard that both Ferretin and adrenal issues can cause havoc with increasing thyroid doses.
> I see my doc tomorrow for follow up. I want to bring up both concerns with her, and I feel a bit intimidated. She is usually by the book science, and I am afraid that she will not take concerns seriously. I suppose there's no harm in asking. Trying to summon the courage.
> I am also due to get labs drawn for the endo this week, but I am not sure if it wouldn't be better to wait since my PCP just increased my dose 2 weeks ago after drawing labs then.
> ...


Your opinion is a good on and you clearly are in the driver's seat here. I just hope you can get your doc to think outside the box on your behalf. If she does not take your concerns seriously; you know what to do.

Here is keeping my fingers crossed for you. Please let us know.


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## lavender (Jul 13, 2010)

Saw the doc today, and I am feeling very confused. I told her about all my increasing heart symptoms, and she seems to think it is anxiety. After telling me two weeks ago that she was reluctant to prescribe anti-depressants, she had me fill out depression and anxiety scales today. Apparently, I scored in the moderate range on both. She ultimately sent me off with a script for a low dose anti-depressant. Follow up in 4 weeks. Says that my illness and going back to school have been very stressful and that I may need anti-depressants for 6 months.

No discussion of bloodwork or following up to see if anything else is going on physically. I honestly did not have the energy to challenge her. Woke up feeling good today and left her office wanting to cry. Overwhelmed, frustrated, confused and scared.

I see my therapist on Friday and told the doc I would like to discuss this with her first.

Despite my own reluctance, I am seriously considering taking the meds because I know I feel depressed and I am really struggling to do the things I want/need to do on a daily basis. I would like to be able to function better. But I am worried that something else may be going on medically that she is not willing to consider.

I feel backed into a corner and I really don't know what the right thing to do is. I generally like my doc, and I believe that she genuinely cares about me. I have seen her for 5 years, and I think we have built a fairly good relationship. She is the only doc I have stayed with for more than a few months in my entire adult life. But I am concerned that she is not willing to look outside the box on this.

Doc advised me to wait two more weeks to get labs run for endocrinologist since I just upped my synthroid two weeks ago. Seems like a good idea to me. Labs are for TSH, FT3, FT4, PTH and calcium. I am not sure they would be very helpful without waiting long enough for the meds to build up in my system.

Our local university medical center has an integrative medicine center that I have heard good things about. I have a friend who recommended his doc who has helped him sort out suppliments and dietary changes in addition to prescription meds. I am thinking about going there for a second opinion and to see if she is willing to test for ferretin and adrenal functioning. Would also like to get vitamin B tested since I have been a vegetarian for years. Seems like it may take a while to get an appointment, but I guess I need to call to find out.


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## Andros (Aug 26, 2009)

lavender said:


> Saw the doc today, and I am feeling very confused. I told her about all my increasing heart symptoms, and she seems to think it is anxiety. After telling me two weeks ago that she was reluctant to prescribe anti-depressants, she had me fill out depression and anxiety scales today. Apparently, I scored in the moderate range on both. She ultimately sent me off with a script for a low dose anti-depressant. Follow up in 4 weeks. Says that my illness and going back to school have been very stressful and that I may need anti-depressants for 6 months.
> 
> No discussion of bloodwork or following up to see if anything else is going on physically. I honestly did not have the energy to challenge her. Woke up feeling good today and left her office wanting to cry. Overwhelmed, frustrated, confused and scared.
> 
> ...


I may have asked but we have so many posters and I can't remember; have you had antibodies' tests? Have you had sonogram (at the very least) or RAIU?


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## lavender (Jul 13, 2010)

My thyroid was removed two months ago for Graves. 
In May, I had: Thyroid Peroxidase Antibodies 99 (<35)
Thyroglobuin Antibodise 76 (<20)
these were done before I want into thyroid storm, ended up hospitalized in May
After that, I started seeing my endo. He ordered TSI in June, and said no other antibodies were necessary.
TSI 258 (<=125)

RAIU was done and it was consistent with Graves. Pathology report post thyroidectomy was consistent with Graves.

I have a history of PTSD Fibromyalgia and Sleep Apnea. I have had a history of wacky immune responses for years, feeling sick for months at a time, and have had many docs tell me it's just the flu. Illness comes and goes and I will have periods where I function really well for months until my body just collapses. Usually in response to stress. I can function at a really high level for months at a time until the stress is over and my body just shuts down for months at a time. Chronic pain, fatigue, muscle weakness. Depression because I can not do the things I want to do.

A few years ago, my PCP sent me to a Rheumatologist after I tested with a high CRP level.
Rheumatologist saw me for about 5 minutes. refused to do any further lab work or to treat me. Said I had fibromyalgia and there was nothing she could do for me. Told me to exercise, even though I was physically unable to. Tried the Arthritis water class once, and it sent me into a pain and fatigue tailspin.

PCP sent me to a Sleep Medicine Neurologist at the same time. Tested borderline for sleep apnea and inconclusive for narcolepsy. I have been on a CPAP since then which does seem to help me sleep better at times.

I have been on anti-depressants several times, but they never seem to help, Usually makes things worse because I have crazy reactions to lots of meds. I have a huge list of medication allergies and feel pretty leery about pharmeceuticals in general.

I am convinced thyroid disease has been a part of my symptoms for years, and the Neurologist seemed to agree with me when I saw her for my yearly follow up a month ago, but I have never gotten any other doctor to believe me.

I had a really low TSH 5 years ago, but that doc left her practice and never forwarded my records. My current PCP refused to believe there was anything to follow up with my thyroid because TSH and FT4 tested normal twice in 5 years. I had to fight with her to get her to test it this past spring, and even after testing hyper, she told me I had the flu for a month as I went into hyper storm.

Sorry this is so long. I am just so tired of being sick and blown off by doctors. I am 33, and I can barely function. I am so greatful to be alive, and I believe there is a better quality of life for me. I refuse to just sit back and watch my body deteriorate until I am permanently disabled. I have too much living to do.

I called the integrative medicine center, and scheduled an appointment for Dec 20. They told me to call to see if there is a cancellation in the meantime. I do not know if this is the answer, but I just want a doctor who has some hope that I can feel better.


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## Andros (Aug 26, 2009)

lavender said:


> My thyroid was removed two months ago for Graves.
> In May, I had: Thyroid Peroxidase Antibodies 99 (<35)
> Thyroglobuin Antibodise 76 (<20)
> these were done before I want into thyroid storm, ended up hospitalized in May
> ...


I "really" appreciate your refreshing my memory! Thank you so much. Yes; well............once again, ferritin is very important and for some reason I am thinking you should be tested for Lupus. Your symptoms sort of put me in mind of those 2 things.

The test for Lupus would be Anti-DNA, C3 and C4.

Read this please and see if it applies.

http://www.lupus.org/webmodules/web...nunderstanding.aspx?articleid=2235&zoneid=523

More than anything in the world, I wish for you to feel better too! It is not an easy task to advocate for self when one is so sick and consistently being fluffed off on top of it.


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## lavender (Jul 13, 2010)

I want to get ferretin and vitamin B tested. have been a vegetarian for 13 years, and I am concerned about nutritional deficiencies. Hence the integrative doc. She is supposed to be really good with this.

I would like an adrenal test because I know stress is a huge factor in my bouts of illness. I am not exactly sure how it is treated, but I suspect that getting to the bottom of it would help.

I am aware of lupus, and have thought about it a lot. I have several friends with lupus. Some of the symptoms fit and others don't. There's an ad on the radio for "Do I Have Lupus" that keeps getting my attention. Looked up the info a few days ago, and it didn't seem to fit. However, when I watched the video on the site you just pointed me to, the first minute was like spot on. I have believed there was an auto-immune component for years, it took thyroid storm for the docs to do anything!

I honestly don't know, and I know I can't sort this out without a good doc willing to listen to me, take me seriously, and do blood tests without making me fight. I know I have a good intuitive sense, and when I can shut out all the doubts and listen to myself, I can at least point myself in the right direction. But I do not know everything. Heck, I insisted on having my thyroid tested in April because I thought I was hypo when I was really going into hyper storm! Thyroid intuition was right, but in the completely wrong direction!

I know that talking to my therapist on Friday will at least help me decide if anti-depressants are a good idea right now. Two weeks ago when I made the appointment with my PCP, I was at the point where I was willing to take them if she suggested it, but she went in a completely different direction, and I have been feeling a bit better. So, now I am just confused. I don't want to take the med unless I feel good about it because I think that half the cure is believing it will work. Possibly the belief is really just my intuition that something is or is not right for me.


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## Andros (Aug 26, 2009)

lavender said:


> I want to get ferretin and vitamin B tested. have been a vegetarian for 13 years, and I am concerned about nutritional deficiencies. Hence the integrative doc. She is supposed to be really good with this.
> 
> I would like an adrenal test because I know stress is a huge factor in my bouts of illness. I am not exactly sure how it is treated, but I suspect that getting to the bottom of it would help.
> 
> ...


It is my humble opinion that only a psychiatrist should Rx anti- D's.

Listen to your instincts. You have worn your body all your life. Who would know better than you?

You need to be validated. Withholding validation from you by the medical community is causing much emotional angst and unrest. Just stick to your guns here. I "believe" you and we all want to help you best we can from afar.


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## lavender (Jul 13, 2010)

Common Symptoms of Lupus

To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

1. Malar rash - a rash over the cheeks and nose, often in the shape of a butterfly --Nope
2. Discoid rash - a rash that appears as red, raised, disk-shaped patches --Not exactly, I get a lot of rashes, but not disk like. my skin is generally sensitive to everything. I do get sores on my scalp. Couldn't tell you what they look like. They itch and tend to scab over. Doc told me to use dandruff shampoo which made them worse. Now I use a natural teat tree oil shampoo that seems to help
3. Photosensitivity - a reaction to sun or light that causes a skin rash to appear or get worse--Have been extremely sensitive to she sun for years. As if my skin is allergic. Eyes are very sensitive too, have been since I was a teenager and developed migraines
4. Oral ulcers - sores appearing in the mouth-rarely
5. Arthritis - joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed--ankles have been swollen since before my thyroidectomy. Many joints hurt. have had injuries in the past, but pain never gets better. Have lots of muscle pain
6. Serositis - inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)--don't know, used to get bronchitis a lot, but not much since I stopped smoking over 6 years ago.
7. Kidney disorder - persistent protein or cellular casts in the urine--Urine tests always come back normal
8. Neurological disorder - seizures or psychosis--I was psychotic in hyper storm. Migraines since I was a teenager
9. Blood disorder - anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)--only time I ever tested anemic was right before my thyroid storm
10. Immunologic disorder - abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies--??
11. Abnormal antinuclear antibody (ANA)--?? not sure this has ever been tested

People with lupus also may experience symptoms that do not appear among the ACR criteria:

* fever (over 100° F)--usually when I get sick, I have a low grade fever below 100 in the AM, by the time I see my doc, it is usually fine, but it tends to get higher with exertion
* extreme fatigue--yes, on and off for years.
* hair loss--no more than usual
* fingers turning white and/or blue when cold (Raynaud's phenomenon)--nope


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## Andros (Aug 26, 2009)

lavender said:


> Common Symptoms of Lupus
> 
> To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
> 
> ...


Honey Bunny;I do believe that you have Lupus. I read enough. Dang!! Listen now; ANA is only "suggestive" of a myriad of autoimmune diseases. You can not have 
ANA but have Anti-DNA, C3 and C4 (# 10 on the list.)

Also, anemia is common w/ Lupus. I am sure you read that. Rashes are not necessarily always disc shaped. I have the scalp erythemia and this is a riot, Tea Tree oil is my best friend. I put it in my shampoo actually as well.

Pluerisy, costalchondritis!! OMG!! It all fits. Bronchitis, joint pain. Well; GF....................fear not. As you know, I have Lupus and am doing quite well.

First you must get the relevant tests.

I will help you.


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## Andros (Aug 26, 2009)

lavender said:


> Common Symptoms of Lupus
> 
> To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
> 
> ...


I hope you can find a good rheumatologist. My doc is a rhemumatologist/immunologist.


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## lavender (Jul 13, 2010)

Thank you so much for your help.

Tea tree oil is my best friend, and I put it straight into my shampoo until I found a shampoo that is basically all herbs and oil. I have no idea how it works, but it does. Makes me feel tingly all over. I have been thinking of getting the body wash from the same company to help with skin infections. Was on tetracycline for a year or so like 8 years ago, and it did nothing.

I also get frequent yeast infections. not just female yeast infections, but on my skin as well. Hope this is not TMI. Is this common with lupus?

My friends all see the same rheumatologist that basically kicked me out of her office a few years back. They all swear by her, but I refuse to go back there. It was the most degrading/depressing doctor's visit of my life. I know there is another fibro rheumatologist at the university who I have heard is willing to run any test you ask him for. I have thought about going there, but I have heard it takes months to get in. Not sure if I need a referral. I do not expect to get one from my PCP at this point.


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## Andros (Aug 26, 2009)

lavender said:


> Thank you so much for your help.
> 
> Tea tree oil is my best friend, and I put it straight into my shampoo until I found a shampoo that is basically all herbs and oil. I have no idea how it works, but it does. Makes me feel tingly all over. I have been thinking of getting the body wash from the same company to help with skin infections. Was on tetracycline for a year or so like 8 years ago, and it did nothing.
> 
> ...


I sure would like to hear some "doctor" success stories. This is just too sad, I kid you not. Unfortunately, my experiences have been the same. Very degrading, condescending and sadist.

I hope you can get in to see this doc. That would be good. Look at it this way, you could make appt., get on cancellation list and still look around. If you find help before your appt., you just cancel the appt.


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## lavender (Jul 13, 2010)

the fibro doc also has lupus listed as an area of specialty. I think I need to make an appointment if I can.


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## lavender (Jul 13, 2010)

flu vaccine? For some reason I have been leery of getting one this year. Especially with H1N1 in it. I already got that last year. Even if I get vaccinated, I tend to get every flu virus that walks within a mile of me. I have even been diagnosed with the flu in the summer time. Usually turns into a bacteria infection and I need azithromyacin to get rid of it.


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## lavender (Jul 13, 2010)

Andros, 
I want to thank you so much. I feel like I have had this huge AHA moment today. I feel this huge sense of relief and I feel really hopeful that I have a direction to go in to get some help and validation. I have been so obsessed with my physical health for the past month that I have had a hard time focusing on anything else. I feel like I have an idea of some actions to take so I can let this go until I get in to see a doc.

The more I have read about lupus, the more it feels seems strangely familiar. It's like this has been staring me in the face for years, and I just haven't seen it.

And I believe that even if I don't have lupus, getting in to a doc who will take me seriously and do bloodwork will help me get to the bottom of whatever is going on.

Something really strange happened a few weeks ago. One of my friends with lupus walked up to me, and pointed at my thyroid scar observing that I was developing a rash. She said that whenever she gets rashes (which is pretty often), they always hit an old surgery scar she has first. It was such a weird experience because no one else has noticed the rash. It is not all that obvious, but my whole collar/neck area is slightly inflamed, red, and itchy, especially my scar. Similar to what happens to my arms when I am in the sun, but I haven't been in the sun. And it hasn't gone away. I though it was a bit unusual. It's irritating enough to bug me, but not bad enough to run off to see a doc. I did talk with my doc about it yesterday, and she suggested I get mederma, which I think may just irritate it more. I have been using hydrocortisone.


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## Andros (Aug 26, 2009)

lavender said:


> the fibro doc also has lupus listed as an area of specialty. I think I need to make an appointment if I can.


I agree whole heartedly with that! Let us know!


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