# It's official; Grave's Disease



## JPGreco

Hey everyone, if you don't know me, I'm James
(refer to here)

I finally was able to see and Endocrinologists which was great. So nice to talk to a professional and not my general practitioner. She put me on 20 mg of methimazole and a beta blocker. My GP only put me on 10mg of methimazole.

However, I got a phone call today and she told me my blood tests came back "critical" and doubled all of my medication. I'm not sure what critical means, but its usually not good... lol. I am going to get a copy of my bloodwork in the next couple of days and post it up here.

The original plan was for me to come back at the end of May after yesterday's appointment to see how things were going, but with my results, she wants to see me in two weeks.

So until then, I'm taking my meds (today was the first time taking anything and its only half a days amount) and the beta blocker is already working. My heart rate is down a little already, which is awesome.

The most likely inevitability though will be the destruction of my thyroid.
To Be Continued....


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## Lovlkn

JP,

Welcome to the board - you've found a home to help support you through your journey.

It's a good idea to keep a log of lab results and symptoms and doses.

40mg of methimazole is a HUGE dose - if you get a sore throat call your doctor immediately and have a CBC done. Did they do a CBC before they medicated you as a baseline? If they did not they should have.

I had a bad sore throat the first 2 months on anti thyroid medications - it was likely from the gland being slowed down.

With that high a dose it is important to get lab's within the 2 weeks as instructed - you likely will go hypo very quickly. Please pay attention to the labs they run on you - you will definitely need a FT-4 and a FT-3 for proper calibration. What is likely to happen is one or the either number will go up or down as doses are adjusted. Be proactive and question your doctor if you do not agree or understand their reason for increasing or decreasing doses.

My Endo made my severely hypo within 2 months - so bad in fact I had to go see a counselor because of the depression it induced. I hope your endo is better and brings you into range as being hypo can be as bad as being hyper.

Please keep us updated on how you are feeling.

Post your labs with ranges when you get them too!


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## JPGreco

They did do a full panel yesterday and will do another in two weeks, so no worries there.
I do not know what a CBC is.

Basically, I'm an idiot and also very odd when it comes to medications and issues (another story), but I've had symptoms for years and just now am doing something about it. I don't think the doc expected things to be so bad so the high dose is a more of an "oh sh*t" kind of response.


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## Lovlkn

CBC - complete blood count.

If you post lab's, ranges, doses and your symptoms we can help you out.

As much as we like to believe the medical world knows everything they are suppose to about treating us for Graves or Hashi's they don't because they have not lived it. They treat it on paper and rarely listen to symptoms.


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## JPGreco

Wow, I can say for sure so far that the meds are working. I took 20mg of methamizole yesterday around 5pm with 25mg of atenolol. Took the same amounts this morning around 9am.

My heart rate is down like 30 beats per minute from 115ish to 85ish and my throat doesn't feel full right now.

Next dose is around 9pm.


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## Andros

JPGreco said:


> Hey everyone, if you don't know me, I'm James
> (refer to here)
> 
> I finally was able to see and Endocrinologists which was great. So nice to talk to a professional and not my general practitioner. She put me on 20 mg of methimazole and a beta blocker. My GP only put me on 10mg of methimazole.
> 
> However, I got a phone call today and she told me my blood tests came back "critical" and doubled all of my medication. I'm not sure what critical means, but its usually not good... lol. I am going to get a copy of my bloodwork in the next couple of days and post it up here.
> 
> The original plan was for me to come back at the end of May after yesterday's appointment to see how things were going, but with my results, she wants to see me in two weeks.
> 
> So until then, I'm taking my meds (today was the first time taking anything and its only half a days amount) and the beta blocker is already working. My heart rate is down a little already, which is awesome.
> 
> The most likely inevitability though will be the destruction of my thyroid.
> To Be Continued....


Critical apparently means very very hyperthyroid so I am glad your doctor is on this on your behalf.

Just in case, it is good to be familiar w/ this..................

Thyroid Storm Symptoms
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001437

When you get your labs, please include the ranges as different labs use different ranges.

Has your doc run any of the antibodies listed below, would you know?

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/


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## JPGreco

I believe most, if not all of that has been ran. I know immunoglobulins were ran because I asked the nurse and she fumbled her way through that word. I also believe the t3 and t4 was ran. I asked for a full thyroid panel to be done and a lot of things were listed when I asked the nurse to read them off. They were supposed to fax me the results today, but I haven't gotten them. I will hopefully be able to post tomorrow with it all.

Oh, and for reference the beta blocker is antenolol and its 50mg a day (two doses of 25mg)


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## Lovlkn

Good thing they are testing you in 2 weeks.

Both of the meds you are taking are high doses. You'll be chillin soon.


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## JPGreco

Yeah, so much for them faxing me my results. I'll get them Monday for all of you. Its been a few days now on the meds and its been a little strange.

As I said, the beta blocker definitely works. I take it every 12 hours and it seems that at abut hour 9 my heart rate starts to climb a little. My resting heart rate before meds was anywhere from 110 to 120. Now, an hour after taking the beta blocker it is in the 80's.

The methimazole seems to quell the shakes and the feeling of a full throat. Those are the only symptoms that are immediately noticed reducing.

However, the I'm fighting a cold and allergies, so there are a lot of random events that I can't figure out if they are tied to the medication or not. I got a wicked rash before I even took the first dose and got a rash yesterday. I think that is from my allergies causing a mild heat rash. I felt like garbage last night after taking a dose, but the night before I felt great. So yeah, no idea whats happening.

What should I be on the look out for in case this medication starts taking me hypo before the end of the coming week?


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## Lovlkn

Your body is going through alot and I mean alot of change right now.

Keep an eye on the rash - are you taking antihistamines for your allergies?

I had wicked hives right before I was diagnosed but not after starting the tapazole - if it gets worse you may want to put a call into your doctor.


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## JPGreco

No, I don't take anything but a natural and organic vitamin for my allergies. Benadryl makes me sick and I've never taken anything like claritan.

The rash comes and goes just as quickly, currently its gone. I really think its more related to my allergies. The last one was in opposite my elbow and it was just red and irritated. I actually got very mild hives on the rash I had before I took the medicine that coincided with the first hour or so on the medication. The only thing I can think of is that its either my normal allergies (I really don't remember last years season) or a mild combination of my allergies and the medication. All of my symptoms are inconsistent other than a mild ill feeling I get for the first hour or two when I take all the meds, but again, a lot of medicine bothers me to some degree, but not to a point where its an allergic reaction.

The other possibility is that the meds or allergy combination is just making my skin a little sensitive and I get a lot of irritants on me at work.

I appreciate your concern and words of advice though.


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## JPGreco

Ok, so here goes... lol

TSH: 0.006 (.27 - 4.2)
Free T3: >6.51 (.8-2.0)
T4: >7.77 (.82 - 1.60)
Thyroperoxidase AB (TPO): 2059 (0 - 35)
Anti-Thyroglobulin AB: 547 (0 - 40)


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## Lovlkn

Wow!

You are really hyper.

While you are taking high doses of anti thyroid meds you definitely need them.

Keep us updated on your progress


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## JPGreco

Yeah, figures it was so far out of range. Granted I do believe my "normal" would be closer to the hyper side.

If I told the doc everything I've been doing with those results she probably wouldn't believe me.

Drawing more blood tomorrow for an appointment Tuesday.


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## JPGreco

Does this mean it is Hashi's though? Or is it still Graves?


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## Lovlkn

JPGreco said:


> Yeah, figures it was so far out of range. Granted I do believe my "normal" would be closer to the hyper side.
> 
> If I told the doc everything I've been doing with those results she probably wouldn't believe me.
> 
> Drawing more blood tomorrow for an appointment Tuesday.


Just so you know... normally you do not take your anti thyroid or replacement meds before a blood draw. When are you having labs drawn? If in the morning take your meds after the draw - if in the afternoon, re-schedule your lab draw for the morning.

You are so hyper I would not delay taking your meds any longer than you need to have the blood drawn.

Ask them if they are running the FT-4 and FT-3 along with your TSH which the doc will always order. You need to be dosing by your FT-3 and FT-4 only and ignore the TSH.

You have high antibodies for both Graves and Hashi's - possibly hashitoxicosis? I don;t think they give out that DX often but with your levels and lack of symptoms it's likely as both diseases occurring at the same time can cancel out some symptoms.


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## Andros

JPGreco said:


> Ok, so here goes... lol
> 
> TSH: 0.006 (.27 - 4.2)
> Free T3: >6.51 (.8-2.0)
> T4: >7.77 (.82 - 1.60)
> Thyroperoxidase AB (TPO): 2059 (0 - 35)
> Anti-Thyroglobulin AB: 547 (0 - 40)


Given the high numbers of those antibodies, I would strongly suggest an ultra-sound if you have not had one to make sure you don't have cancer.

As you know, you are very hyper. Yikes! Are you having itching w/ the rash?

cancer TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
http://www.wikigenes.org/e/gene/e/7173.html

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

Anti-microsomal Antibodies- TPO Ab
Negative test is normal; you should not have any of these antibodies. And the healthy person does have a low titer of TPO.
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm


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## JPGreco

The rash is gone already, I don't think its linked to the meds or thryoid problem.

Yes, I had an ultrasound and the doc said nothing seemed really out of the ordinary. Some small nodules, but nothing that looked odd. I know that's not really conclusive, but since the odds are RAI or surgery will be needed, I'm just gonna wait on that worry for a bit.

Lovlkn, this is the second blood draw, so I do have a base line. As for not taking meds, too late. I take meds both morning and evening, but the blood test landed right in the middle of that. Other than that, been taking the meds regularly.


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## JPGreco

Well got some new labs. The only one that can be read since its from 2 different labs and is the only one applicable is my T3 total.
It went from 6.51 to 3.94 (I think). They are from two different labs and I think I converted them correctly into the same units. Range is from about (.8 - 2.0) so its come down quite a bit. Still way out of normal, but thats a hell of a result for only a weeks worth of drugging.

Next appointment is in 1 month and I was told to continue on the current meds of 50mg of Antenolol and 40mg of Methimazole.


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## JPGreco

Also, my alkaline phosphate levels have increased. Is this normal? I've read that it can be normal and my doc didn't make any mention of it.


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## JPGreco

My doc may be upping my meds to 60mg of methimazole a day. I got a VM about calling back, but the doc wasn't in today to answer and nobody could answer me, so I'll find out monday.


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## Lovlkn

Can you post all your labs -dates - test name- result and range on one post please.

While your numbers are still high if there is movement down I would question your doctor on the decision to increase to 60 of meth. A dose that Hugh can cause serious side effects and possibly low white blood counts.

How are you feeling?


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## JPGreco

The only things retested for my second visit was TSH and T3. I think she ordered T4 from the labs afterwards so I don't have those results.
TSH cannot be determined since the first lab had a higher degree of accuracy at .006. The second lab says <.01, so even if there is some change, I can't determine it.

T3, as I posted is it went from 6.51 to 3.94 (I think). They are from two different labs and I think I converted them correctly into the same units. Range is from about (.8 - 2.0) so its come down quite a bit. Still way out of normal, but thats a hell of a result for only a weeks worth of drugging.

T4 will be unknown until monday since the doc wasn't in today to talk to.

I just don't know if its a mistake in my file or they actually want me on 60mgs. If the doc didn't write down that she called me and upped my meds already, it could be a mistake.


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## Lovlkn

Your labs are going down which is good. Don't worry about TSH as that can lag 6 weeks and is a diagnostic test not a test to base medication dosage by. Many doctors do but it's useless for determining doses. FT4 and FT 3 are what you need to ask for.

Be aware that during initial dosing sometimes the T-4 or T-3 do a teeter totter meaning while 1 falls the other goes up. In my opinion it's better to give the meds time to work rather than increasing for the teeter titter event.

When this happened to me my endo raised my dose and I was hypo within 4 weeks.

Ask questions of your doctor. 60mg is an extremely high dose. If your labs are falling ask why they want to increase


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## JPGreco

Yeah, it was kind of random. I was called about a T4 test that isnt on my labwork copy so I'm not even sure where this test came from.


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## JPGreco

Well so much for anymore methimazole. I just had an allergic reaction to it it seems. About 5am this morning I woke up with hives all on my upper legs. My doc is closed so I can't call, so I'm just not taking the meds and took some benadryl. Just waiting to see how it all goes. If the benadryl doesn't do anything really affective, its off the ER I guess.

So far the benadryl is relieving the symptoms. Just took a second dose.


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## Andros

JPGreco said:


> Well so much for anymore methimazole. I just had an allergic reaction to it it seems. About 5am this morning I woke up with hives all on my upper legs. My doc is closed so I can't call, so I'm just not taking the meds and took some benadryl. Just waiting to see how it all goes. If the benadryl doesn't do anything really affective, its off the ER I guess.
> 
> So far the benadryl is relieving the symptoms. Just took a second dose.


I had that experience and the itching was unbelievable. That is when I got the ol' critter zapped. And I have no regrets..................at all.

Except if I had been given a choice, I would have rather had surgery. This was a loooooooooooooooong time ago however. Not much was known about the thyroid and that includes me.

Let us know how you do. Hope they do a white blood cell count at the ER.


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## JPGreco

I'm gonna ride it out a little right now. The benadryl did relieve the symptoms for a few hours. Its just a matter of if it continues to work and if the symptoms subside any every few hours after taking the meds.


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## JPGreco

And yeah, it seems like I'm gonna be looking into surgery real soon now. I am gonna try for the surgery if I can find a place that offers help to uninsured.


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## Andros

JPGreco said:


> And yeah, it seems like I'm gonna be looking into surgery real soon now. I am gonna try for the surgery if I can find a place that offers help to uninsured.


Lord knows so many of us need help. This is ridiculous. Hubby and I live in fear. We have only medicare. When we were working, self-pay was fine but not so fine when you are retired.

Medicare is a big joke. They want to do everything you don't need and don't do what you "do" need.

See if there is a clinic in your area that can give you a referal for surgery.

http://findahealthcenter.hrsa.gov/Search_HCC.aspx


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## JPGreco

Yeah, there are a few places around that may be able to help. I know one local hospital dropped my parents ER bill quite a lot. If I end up having to go, I'm going to that ER.


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## JPGreco

Man, that really kicked my ass. I just slept for like 4 hours. Still feel like dung though.


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## Lovlkn

JPGreco said:


> Well so much for anymore methimazole. I just had an allergic reaction to it it seems. About 5am this morning I woke up with hives all on my upper legs. My doc is closed so I can't call, so I'm just not taking the meds and took some benadryl. Just waiting to see how it all goes. If the benadryl doesn't do anything really affective, its off the ER I guess.
> 
> So far the benadryl is relieving the symptoms. Just took a second dose.


You need to call your doctors office. Someone is on call.


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## JPGreco

If its still around tomorrow I'm going to the Doc. For now I'm taking benadryl every 4-6 hours. Basically if I wake up with it I'm going as soon as the clinic opens.


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## Lovlkn

I'm concerned with the idea of you being off the anti thyroid meds and how your system will react to that.


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## JPGreco

why is that? I have no idea whats going on right now


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## JPGreco

do you think i should take a lower dose? I mean i read the thread about this


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## JPGreco

ok, so called the doc on call, he said no more methimazole. Continue benadryl for now and if its not any better tomorrow, he'll help me out.

I mean, its like a total relapse, but I think its from stress right now more than anything else.

Looks like I'm going for surgery or RAIA as as I can since the meds are out of the equation....


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## Lovlkn

There have been others who have had similar reactions in the beginning. Sometimes a course of antihistamines works to get used to the meds.

PTU is another anti thyroid med they may try with you.

Start another thread titled methamazol and hives and people with hive reactions will share their experiences.

The doctors are going to want to have your thyroid levels lower before surgery or RAI.


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## JPGreco

Will do, but the one problem I see with that is that there is a good chance I can be allergic to PTU as well. I'm taking to Andros' advice and just want this thing ripped out.

I mean, to be honest, it is very possible that its not the methimazole, but rather the methimazole creates some sort of sensitivity in my skin. This is not my first rash, just the worse and I slept on a new bedsheet last night. God I feel so weird between the stress and lack of medication.

Will start a new thread.


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## JPGreco

Ugh, not even two full days off my meds and my throat feels so full. Not like an allergic reaction swelling, but just full. Basically how it felt before I started the meds. Its like I'm starting all over again. Tremors are starting again too. This sucks.


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## JPGreco

My doc is suggesting RAI Ablation because of the reaction I'm having to the medication. I guess I'm going nuclear due to costs.


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## JPGreco

Is it possible to not completely destroy the thyroid with this procedure? Sort of like a parathyroidectomy?


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## JPGreco

RAI Uptake is schedule for thurs/friday.


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## Andros

JPGreco said:


> Is it possible to not completely destroy the thyroid with this procedure? Sort of like a parathyroidectomy?


It is possible; especially in advanced cases of hyper. I had to have RAI 3 times.

But once again, that was a long time ago. I think they will give you a sufficient zapping to wipe it out.

Let us know when you have it set up.


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## JPGreco

Honestly, I would be happy to not completely nuke my thyroid. I'm sure my entire life I've been to the high range of "normal" if not slightly hyper. If I were to nuke into that I would play the wait and see game to see if I started drifting back into the danger zone quickly or slowly. If slowly, I would do it every few years if need be depending on costs. Maybe combine that with some homeopathic ways to reduce thyroid function and I could find a happy place.

Might be wishful thinking or maybe I should start my own research and clinical trial on myself... lol


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## Lovlkn

Wishful thinking with your high antibodies.

I'm sorry for your sake the anti thyroid meds did not work out. Naturopathic remedy likely will not work in your case.

Surgery in my opinion would be your best bet but without health insurance you're limited on your choices.

Let us know how it goes.


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## JPGreco

And I am radioactive. Just took the RAI for the uptake scan tomorrow.


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## Andros

JPGreco said:


> And I am radioactive. Just took the RAI for the uptake scan tomorrow.


Whoohoooooooooooooooooooo! Are you feeling okay?


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## JPGreco

its been about an hour and I don't feel any different than I have. Just took a short nap. I mean, I'm on methylprednisolone for the allergic reaction and a beta blocker still. The doc said I can go about my normal routine other than a couple of foods to avoid till the scan is done, so all seems good.


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## Andros

JPGreco said:


> its been about an hour and I don't feel any different than I have. Just took a short nap. I mean, I'm on methylprednisolone for the allergic reaction and a beta blocker still. The doc said I can go about my normal routine other than a couple of foods to avoid till the scan is done, so all seems good.


What time do you have to be front and center tomorrow? Hope you have a restful evening.


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## JPGreco

2pm. But I have no plans to do anything different from what I've been doing, which includes working a half day before coming home to shower and go for the imaging.


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## JPGreco

Imaging is done. Should have results Monday. I almost fell asleep during the imaging.


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## Andros

JPGreco said:


> Imaging is done. Should have results Monday. I almost fell asleep during the imaging.


Glad it is done; now we wait!! Don't fall asleep!


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## JPGreco

Haha, thanks. Yeah, I walked out of it and a bit disoriented. I got to my car and realized I didn't stop at the front desk or ask a single question, just shook the docs hand and thanked him... lol

Anyways. Basically it seems I'm at a point of either ablation or surgery. The only other thing I've found in my research is this Dr. Hull lady who says she cured her grave's with her detox plan, which I'm very wary of. However, the only reason I bring it up is that I do have a single source of artificial sweetener (sucralose) in my diet. I actually started it about a year before the first symptom (in retrospect) may have shown up. However, I have gone extended periods of time without it (a couple of months on and off) with no real change in how I feel. As for detoxing, I do tend to drink a lot more water than the average person due my job and the fact I still have an active lifestyle. So I really question the validity of it, but I do believe that there is a large role that diet plays on health.
Any comments?


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## JPGreco

I have also read that soy and other herbs can reduce thyroid function, anyone have any comments on that?


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## webster2

I wish I had known the evils of artificial sweeteners. Maybe things might have been different.


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## JPGreco

Care to elaborate? I'm not convinced its the cause of my problem, but if it is, then detoxing should be the answer.


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## webster2

I don't think it actually caused anything maybe just contributed to something I was probably going to end up with anyway. Aspartame used to cause my tongue to go numb, but zero calories was great....maybe not.

I don't think you can stop autoimmune once it has started, JMHO.


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## JPGreco

I will say that whatever is in diet snapple will make me ill. I know this cause i accidentally bought it before and just drank it on a couple of occasions, so it wasn't a fluke one time thing.

I'm curious about the results this dr hull has had, but that hesitation is because like you, I'm wary of being able to stop an autoimmune response. But as I said, because it is not a constant activity and the severity of my problem doesn't change, I have heavy doubts. Though I am on the look out for a holistic doctor, just to have a conversation with at least.
I think I am gonna try to find a way to to the surgery if I can. Its just hard without insurance. I need to either apply for aid from some local hospitals or just bite the bullet and try for medicaid/care, whichever applies.

for reference: http://www.janethull.com/


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## webster2

I have found the most help with a naturopath. However, after a blip in March the ENT and the GP have "insisted" I see an Endo. I am not really wild about it but the ENT did recommend one he said was "human" and he is also an osteopath.

Best of luck to you. Apply for the help, Graves isn't anything to let go.


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## JPGreco

I'll tell ya, after some real research I've found some interesting topics to discuss with someone who won't cover their ears and just say "drugs na na na, RAI na na".
I'm not a person that believes ground up stone from a goats stomach will cure everything. But I do believe that sometimes lacking vitamins and minerals can really impact health for some people. We're not all carbon copies.

I've found info on some things that seem to either inhibit the production of TSH by the adrenal glands or inhibit the bonding of TSH to thyroid cells. Both would reduce T4 sythesis by the thyroid. I've also come across a study that seemed to show another item that prevent cells from taking in T3, alleviating symptoms. I've also come across a mineral that seems to reduce antibodies.
I would like to pursue these avenues since basically it seems that only have 2 options that end in a single outcome. So why not see if any of these could work by doing my clinical trial with a natural doctor of the next 6-12 months. If they fail to work it will be clear in any blood work. The trial can be abandoned at any time for surgery/rai. Or just maybe there is some truth to all of this and I find myself improving.

I'm glad that you found some success with a naturopath and hope you can continue on that path.


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## JPGreco

So results are in.

Uptake 72% @ 24 hours.
Uptake was homogeneous with no dominant hot or cold nodule.

Basically, it is now 100% Graves disease.


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## webster2

JPGreco said:


> So results are in.
> 
> Uptake 72% @ 24 hours.
> Uptake was homogeneous with no dominant hot or cold nodule.
> 
> Basically, it is now 100% Graves disease.


Wow, that is a high uptake. The other bit about the lack of nodules is very good news. What is your treatment plan for Graves?


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## JPGreco

Well, I'm sure my Endo will recommend RAI Ablation since I don't have insurance and it will be cheaper than surgery. A local nuclear medicine place offers really good financial assistance for that too, so it may be free.

I'd rather do surgery (I think). I mean, from my research it seems there is a small chance that RAI can make you euthyroid, but I will end up hypo eventually and it seems like its a real pain to balance meds and everything else. Plus, since I can't take meds to go hypo before RAI anyway, it may not be an option. Surgery would just cut the bastard out and start on hormones quicker.

Since I basically only have those two options I'm gonna look for an alternative doctor to discuss some of the stuff I have found. I mean, it can't hurt since my back is against the wall anyway. Maybe see I can put off surgery till the winter/late fall. If I can, and I follow a homeopathic approach till then, maybe I get lucky and something happens. If not, I've lost nothing.

I mean, I do feel better and my throat feels more open after I take my multivitamin (which I just started a couple of days ago). It stays that way for a couple of hours after taking it and 4 of the suggested minerals are in my multivitamin, so who knows.

Other than that, as I said, I'm gonna try for surgery. It just seems easier.


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## JPGreco

also, I may be able to get assistance for the surgery from the local hospitals. I know at least 2 of them offer assistance and one is a teaching hospital.


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## webster2

Teaching hospitals are good. Most hospitals have a patient advocacy department and might have some info on financial assistance. I was glad RAI was not an option for me either time. I think surgery is easiest, IMHO! Good luck to you!


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## JPGreco

Thank you, I really appreciate the sense of community here. It has made things easier for sure to know I'm not alone.

I think RAI may not be an option for me because I can't get hypo since I'm allergic to the meds. At least I think I read that somewhere.


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## JPGreco

So the Endo wants to see me on my previously scheduled appointment in about 2 weeks. It was supposed to be the 1 month appointment for the medication, now its gonna be the "what are we gonna do" consultation. The good thing is it gives me some time to do some research for surgery. She recommends RAI.


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## webster2

Hmmm...why does sher prefer RAI? Two weeeks is a good amount of time to research and figure out the best for you. Good luck!


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## Andros

JPGreco said:


> So results are in.
> 
> Uptake 72% @ 24 hours.
> Uptake was homogeneous with no dominant hot or cold nodule.
> 
> Basically, it is now 100% Graves disease.


That is a high uptake.

The criteria for Graves' is clinical. You must exhibit..........goiter, exophthalmos, pretibial myxedema and thyrotoxicosis as per Dr. Robert Graves' of the 1800 era. 3 out of the 4 qualify.

I am personally very grateful the nothing suspicious was noted. That is the best news!


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## JPGreco

Trust me, I'm very happy too.

I was told that the antibodies were what defined graves vs hyper, but I guess that has become common definition, rather than clinical. I really only display two of the above, goiter and thyrotoxicosis. I might have an issue related to my one eye that may be related to this, but I can recall having the issue for a long time and it is very minor, so I can't be sure.


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## JPGreco

Webster, she prefers RAI I believe because of my lack of insurance. I assume the cost is less in my case where nothing suspicious was found vs surgery. I sent a message to one local hospitals patient relations about billing and such, so I'm waiting on hearing back from them. Also both local hospitals offer financial assistance.

We're a little spoiled around here. 2 hospitals in my town, 1 next town over, then the township hospital is close as well. Not to mention all the hospitals closer to NYC. I couldn't tell you how many hospitals are within an hour and a half of me. But that just means I have a few to call to see what they can do for me.


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## webster2

I am glad there are a lot of options for you in terms of hospitals. Up here in the boonies, there is one! Good luck!


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## Andros

JPGreco said:


> Trust me, I'm very happy too.
> 
> I was told that the antibodies were what defined graves vs hyper, but I guess that has become common definition, rather than clinical. I really only display two of the above, goiter and thyrotoxicosis. I might have an issue related to my one eye that may be related to this, but I can recall having the issue for a long time and it is very minor, so I can't be sure.


TSI; of course. The caveat is they are present in Hashimoto's, hyper and Graves.

And the one eye thingy is disturbing to me. It usually is the left eye w/ the majority of Graves' patients but "sometimes" it is the right eye.

TSI and the eyes
http://www.ncbi.nlm.nih.gov/pubmed/1677484

http://www.caleyes.com/webdocuments/...ease_paper.pdf


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## JPGreco

Well, the anomaly is with my left eye. There is no protrusion or sense of constant pressure. Also, it most always happens after staring at computer screens for extended periods of time. Its hard to explain. Its like a muscle spasm. But like I said, I've always had some strange issue for as long as I can remember.


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## Andros

JPGreco said:


> Well, the anomaly is with my left eye. There is no protrusion or sense of constant pressure. Also, it most always happens after staring at computer screens for extended periods of time. Its hard to explain. Its like a muscle spasm. But like I said, I've always had some strange issue for as long as I can remember.


It started w/my left as well. Dang. Do you have photophobia? Retracted upper eyelid on that eye? Dry eye; do you see double sometimes?

I hope not.


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## JPGreco

Nope, that's why I don't believe its related.


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## webster2

I have only minimal eye involvment, left eye and photophobia was the first thing I noticed.


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## Lovlkn

JPGreco said:


> Well, the anomaly is with my left eye. There is no protrusion or sense of constant pressure. Also, it most always happens after staring at computer screens for extended periods of time. Its hard to explain. Its like a muscle spasm. But like I said, I've always had some strange issue for as long as I can remember.


I have been experiencing this since I began working 19 months ago -

My latest eyeglass prescription was changed 5x and I still have issues with strain. My doctor even added prisims but that really made it much worse. Try some used wet caffeinated tea bags - squeeze out the tea and place cooled or room temp on eyes for 10-15 minutes daily and you will get alot of muscle strain relief. I learned this from my 89 year old mother last week - what a relief it has been.

The doctor does not know what is wrong but he is an optometrist. I am going to have a pair of reading only glasses made to see if it helps.


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## JPGreco

Webster, I do not have photophobia. In fact, I work outside regularly and often against walls that are reflecting sunlight and I never wear sunglasses or rarely do.

Lov, I don't require glasses. I can read and see things at a distance no problem. I really think it isn't related.

Honestly, the muscle spasm increases with physical exertion sometimes, so its related to blood pressure or the tremors involved with hyperthyroid to begin with.


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## JPGreco

So I just heard back from the Nuclear Medicine lab and they are recommending 11 mci of RAI. Still have a few days before my apt. with the Endo, but I'm still hoping for surgery.


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## webster2

JPGreco said:


> So I just heard back from the Nuclear Medicine lab and they are recommending 11 mci of RAI. Still have a few days before my apt. with the Endo, but I'm still hoping for surgery.


Who is recommending the RAI? Is it the Endo? Will your preference be taken in to consideration? Be assertive if surgery is what you want, ask why they prefer RAI? I made my preference known, the endo said okay, referred me to an ENT and that was it.

If there are strong medical reasons for your doctor to prefer RAI over surgery ask them to explain them to you.


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## JPGreco

Three reasons...
Cost
Cost
No Insurance

Though I am going to apply for aid from a couple of the local hospitals, which I am going to discuss with my Endo.


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## JPGreco

Well, looks like I'm getting NUKED.

The endo is really concerned about my blood work and symptoms and wants me to schedule the RAI Ablation ASAP. She actually wants me to do it within a week and if not wants me to go to the ER for surgery. She threatened to admit me... lol

She also wants me on a steroid for right now, which I'm gonna confirm with the nuclear doctor about it first. Seems a little odd.

The nuclear doc suggested 11.5 millicurries, but my endo wants me to ask for more, 14 to be exact. She also wants me to talk to them about it and see if they will administer even more. She said up to 17 in her opinion to make sure its nuked.


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## Andros

JPGreco said:


> Well, looks like I'm getting NUKED.
> 
> The endo is really concerned about my blood work and symptoms and wants me to schedule the RAI Ablation ASAP. She actually wants me to do it within a week and if not wants me to go to the ER for surgery. She threatened to admit me... lol
> 
> She also wants me on a steroid for right now, which I'm gonna confirm with the nuclear doctor about it first. Seems a little odd.
> 
> The nuclear doc suggested 11.5 millicurries, but my endo wants me to ask for more, 14 to be exact. She also wants me to talk to them about it and see if they will administer even more. She said up to 17 in her opinion to make sure its nuked.


While RAI was not my choice (no insurance and no disposable income), I had RAI 3 times and I am T-totally fine. I would have preferred surgery but as you and I both know, we don't always get what we prefer.

But....................we "do" make lemonade out of lemons; right?

Pred is probably to protect your eyes.


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## JPGreco

Yeah, I was assuming that, but its odd cause I have no eye problems. Just more money to spend on Rx's. I have to refill my beta blocker as well.


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## JPGreco

9am, Monday morning I go Nuclear. I'll post all of my experiences in the RAI ablation forum to help with the info this forum has.

The only thing I have to do is talk to my endo about the bloodwork. I noticed she is testing Total T3 so I got to talk to her about that vs Free T3. She's testing Free T4 so its a bit odd.


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## Andros

JPGreco said:


> 9am, Monday morning I go Nuclear. I'll post all of my experiences in the RAI ablation forum to help with the info this forum has.
> 
> The only thing I have to do is talk to my endo about the bloodwork. I noticed she is testing Total T3 so I got to talk to her about that vs Free T3. She's testing Free T4 so its a bit odd.


As a sales point, tell her you need a "baseline" on the FREE T3.

Keeping you in thoughts and prayers.


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## JPGreco

Well I won't be having blood drawn before I go in for the nuke, so I'll just call her and ask her about it. She seems willing to work with me. If not, I'll just ask for someone else.

Thank you for your well wishes as well.


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## Lovlkn

What's the point of drawing a FT-3 at this point?

With the anti thyroid meds not working and JP just having labs done on the 17th and his FT-3 was above range.



> Lab Results first visit 4/17/12:
> TSH: 0.006 (.27 - 4.2)
> Free T3: >6.51 (.8-2.0)


Just assume if/when you begin replacement you should shoot for mid to 3/4 range on both he FT-4 and FT-3.


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## JPGreco

Um, I'm not sure where you got drawing FT3 at this point from. I was just commenting on noticing that my bloodword order is for TT3. It won't be drawn for like 3 weeks to see how things are going about 2-3 weeks out from the RAI131. I figure its so soon because of how high my uptake was. It may affect me quicker at such a high uptake so she wants to be on top of it. I've seen people have started replacement meds at a month out.

As for treatment, I'm definitely not gonna allow my "range" to dictate my medication. How I feel is foremost in decisions on adjustments.


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## Lovlkn

The only thing I have to do is talk to my endo about the bloodwork. I noticed she is testing Total T3 so I got to talk to her about that vs Free T3. She's testing Free T4 so its a bit odd.[/QUOTE said:


> Um, I'm not sure where you got drawing FT3 at this point from. I was just commenting on noticing that my bloodword order is for TT3. It won't be drawn for like 3 weeks to see how things are going about 2-3 weeks out from the RAI131. I figure its so soon because of how high my uptake was. It may affect me quicker at such a high uptake so she wants to be on top of it. I've seen people have started replacement meds at a month out.
> 
> As for treatment, I'm definitely not gonna allow my "range" to dictate my medication. How I feel is foremost in decisions on adjustments.
> 
> 
> 
> I subscribe to this thread and only read the last 2 posts and obviously misunderstood.
> 
> Post RAI you definitely will need to have your FT-4 and FT-3 tested for replacement dose calibration.
Click to expand...


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## JPGreco

I was wondering... No problem of course. I'm guilty of responses that don't make sense as well.

But that's whats odd. I have the paperwork for the next blood test, which will be the first post RAI and it does not include FT3, but rather TT3. So I may swing by tomorrow on my way home to ask about it or just call.


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## Lovlkn

JPGreco said:


> I was wondering... No problem of course. I'm guilty of responses that don't make sense as well.
> 
> But that's whats odd. I have the paperwork for the next blood test, which will be the first post RAI and it does not include FT3, but rather TT3. So I may swing by tomorrow on my way home to ask about it or just call.


I've written it in on lab req sheets before and then just asked for it the next time.

You need to get your doctors who are dosing your replacement on board with the tests you want run.

Being uninsured I have no clue what they will bill you but you can get what you need online for around $85 for TSH, FT-4 and FT-3. My doctor bills my insurance like $400 but Blue Cross only pays about $23.


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## JPGreco

Yeah, Ft4 is like $150. I have about a grand in blood test bills on my desk...lol


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## miltomeal

JP-
Going thru your posts here sounds a lot like myself last year before RAI. 
You - No nodules, 72% uptake at 24 hours, graves
me - No nodules, 63% uptake at 24 hours, graves - 12.6 mci RAI on 5.6.2011, and you saw where i am now with this thing maybe growing back.

I am glad to hear your doc is talking to the nuc med dept to get you a better/higher dose for your treatment! I do believe that you should have more than what the nuc med dept wanted to give you.

Best wishes! You will get better with time, i am sure!


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## JPGreco

Thanks, its nice to find someone who goes through something so close to what I am going through.

I guess the silver lining of all this if it does grow back on me is that my RAI treatment is around 150 dollars. So if it gives me a year buffer before surgery, that's cool with me.


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