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Graves Disease to hypothryoidism without surgery

I haven't been to medhelp.org since 2014, so my first question is, what happened to the doctor forums?  Did all the doctors withdraw?  I appreciated the advice I received from Dr. Lupo on several different occasions as a supplement to the information I get from my own endocrinologist, who is usually too rushed to go into any detail.

Anyone else ever have undeniable Graves Disease (hyperthyroidism), received treatment through medication (methimazole in my case) alone, went into remission for a few months, then dived headfirst into hypothyroidism that didn't quit even after anti-thyroid hormone meds were stopped?  If so, how did your doctor handle the switch?  

After a year of methimazole for Graves, my TSH raised to normal levels and my free T4 normalized.  After a few months of no treatment, my TSH level began to rise in January 2014, and hasn't stopped.  At first my endocrinologist was reluctant to prescribe more than a token amount of levosynthroid, although I was becoming symptomatic with hypothyroid symptoms.  She feared Graves disease returning.  I see her every 6 weeks and get blood drawn, and she has gradually raised the synthroid every time so that I am up to 112 mg per day.  Obviously, every time I get labs done, I am thyroid-deficient.  The last TSH level was 9.5.  

9.5 is high, but not super high.  Nonetheless, I feel exhausted.  58-year-old women here working full-time, and it is a trial to fight the fatigue just to make it through the day.  I have other symptoms of hypothyroidism, such as hand numbness and recalcitrant high blood pressure.  I've gained a lot of weight.  Can Graves disease turn into Hashimotos?  Should I be a lot more aggressive in pushing for higher doses of synthroid?  Would I be inviting a return to Graves disease if I did so?  Although I had heart palpitations, had to go the bathroom constantly, was anxious, and crashed to sleep for 14 hours on Saturdays with Graves disease, it still seems preferable to this sluggish, every-day tiredness of this existence with excess weight to carry around.  Anyone else every been in this boat?
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Avatar universal
It's not thyroiditis.

The hypO is often caused from the type of TRab called Blocking TSH-Receptor antibodies(TRab).

Graves disease hyperthyroidism is caused by Stimulating TSH-Receptor antibodies. During therapy, those antibodies slowly begin to bind to the receptors differently -- the further out they bind, the less stimulation they bring.  Eventually, they are not making any stimulation, but can still prevent stimulation from TSH.

While blocked, the thyroid stops making hormone.

This is why it is ESSENTIAL that Methimazole therapy does not stop until the TRab test shows completely NEGATIVE, not just "within range"".
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649848 tn?1534633700
COMMUNITY LEADER
As noted, the doctor forums have been shut down and we don't know if they will be brought back online again or not...

Have you been tested for all the antibodies?  For Graves Disease the definitive test is the TSI and for Hashimoto's you'd have had to have TPOab and TgAb tests.
  
There are a couple of possibilities with your hypothyroidism... One is that you really didn't have Graves - that possibly you've had Hashimoto's all along, as the early stages of Hashimoto's often present with periods of hyperthyroidism.  Another is that you have, both, Graves and Hashimoto's and that your Graves may have gone into remission and Hashimoto's has become dominant... Since your thyroid is being destroyed and is not able to produce adequate amounts of thyroid hormones, the chances of becoming hyper again, are pretty slim, unless you would become over medicated.

Is TSH the only thing your doctor is testing?  What about Free T3 and Free T4?  Is he not testing those?  Those are the actual thyroid hormones and if he's only adjusting medication based on TSH, he's simply shooting a moving target since TSH fluctuates as much as 75% over the course, of a day.
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1756321 tn?1547095325
"The "Ask a Doctor" forum has been shut down since June 2014; MedHelp has not indicated whether or not they plan to reactivate it." - Wikipedia.

Excerpt from Hashimoto's thyroiditis following Graves' disease. Acta Med Indones. 2010 Jan;42(1):31-5....

"Pathogenesis for chronic thyroiditis following anti-thyroid drug treatment in patients with Graves' disease remains unclear. It has been estimated that chronic thyroiditis or Hashimoto's disease, which occurs following the Graves' disease episode is due to extended immune response in Graves' disease. It includes the immune response to endogenous thyroid antigens, i.e. thyroid peroxidase and thyroglobulin, which may enhance lymphocyte infiltration and finally causes Hashimoto's thyroiditis."
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649848 tn?1534633700
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