[Bobbi]

#1074631

The best news in your message here was that the new endo is considering whether or not something else is going on. Truly. That shows that he/she is giving your symptoms relevance, and is continuing to think about things. That is crucial to good medical care.

And the one, main problem that a huge percentage of us have after successful GD treatment is to associate the symptoms that we felt before our diagnosis solely with GD. It is very normal to go back to our doctors and say our thyroid levels are off, and ask for blood work, and find out that they are fine (at least a lot of the time). It isn’t that these symptoms are not associated with GD, but that they can also be associated with other physical conditions. That is one of the reasons why it is sometimes hard for us get the GD diagnosis in the first place: our doctors were going through the long list of other possibilities before they hit on thyroid. After successful treatment the process has to work in reverse: If all of your thyroid numbers are truly within normal (and that means a complete panel) then you need to look for something else as the culprit.

With your symptoms developing so quickly after you completely stopped the methimazole, it is completely understandable why you associate the problem with the removal of the drug. You might be right, if the blood tests you were taking were not thorough (including T3 etc.). But if the blood tests were thorough, you’ve got too look for another reason.

[jaidelennon]

#1074632

This is excellent, Bobbi. Thank you!

[jaidelennon]

#1019863

I was diagnosed with Graves last year…and went through the typical rollercoaster we’ve all been through. Interestingly, I evened out on my TSH, T4 and T3 on Methimazole….and felt PERFECT. Endo eventually tapered the dose and weened me off Methimazole. I am technically in GD "remission" and on no meds. HOWEVER!! ALL IS NOT WELL!!! As soon as I came off the methimazole….immediately, in fact, I went straight into a myriad of symptoms again….insomnia, palps, racing anxiety, etc. Re-ran blood tests, normal. Endo didn’t want to change anything because my numbers were normal (I was doing so well on just 2.5mg of methimazole!!). This was the end of August. It’s Jan and still not on any meds. Have a new endo now on the west coast (I’m bi-coastal), numbers are again "normal". He doesn’t want to change anything either. But I feel absolutely HORRID. I sleep now 15 hours a day. I get up….do a few things….my concentration is poor….will get tired, go back to bed….sleep another 3 or 4 hours….get up, do it again. Sleep again for another 6 hours. Ridiculous.

Has anybody else evened out their numbers but still had crazy, full blown symptoms and lethargy like this??? My endo is wondering if it is something else and not GD. I can’t help but feel it is directly related to GD. I felt "perfect" on my meds…..PERFECT…..my downward spiral didn’t occur until I came OFF the meds. And it was almost instantaneous. The trace amounts of methimazole were just enough to keep my thyroid "in check", at least that is how I felt.

Anybody have any advice on this??? Has this happened to anyone else? Are there foods that can trigger a symtomatic response with GD, but still maintain normal levels??? I am meticulously careful with my diet as well (no caffeine, choc, iodine, etc). HELP!!!!!! Thanks in advance for any advice/recommendations!

[LaurenC]

#1074633

I felt very hypothyroid after we "normalized" by thryoid levels on Synthroid post-RAI. My endocrinologist explained to me that after being hyperthyroid, the body’s tissues become almost "addicted" to extra thyroid hormone and feel "low" even when the levels are normal again. We keep my levels just slightly elevated because that’s where I feel "well"–and he agrees that feeling normal is more important than having a normal number on a lab sheet. There may be some risks to staying mildly elevated–bone loss and possibly cardiovascular risks (though he checks my blood pressure and pulse every visit and says I’m ok)–but to me those risks are worth it not to feel fatigued and depressed all the time.

[npatterson]

#1074634

You got excellent advice from Bobbi. If you are seeing people on both coasts, it might be a good idea to keep a copy of your lab results with you, as well as faxing them back and forth to whomever you are seeing.
Second opinions are always a good idea, until you reach the point that you are "doctor-hopping". Whatever the cause, you are certainly not feeling, nor functioning, in any kind of a normal mode.
I am not sure I understand "sub-clinical" hyper- or hypo-thyroidism, but you might ask your doctor about that concept. It generally means you have symptoms, but bloodwork does not confirm it–yet.

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