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I commented elsewhere giving this, and thought it might be helpful to others if I start a new discussion with it:
I would like to share "my nightmare tour with Methimazole" (MMI) but I have to be careful, because I might tend to write a book.... I will try to be as brief as possible, however.
I started the MMI probably in May 2009, having been told to take 3 pills (5 mg each) in the mornings and 3 in the evenings for one month, along with a beta blocker because my heart rate was quite fast, then to stop the beta blocker and go down on the MMI to 2 in the morning and 2 in the evening for the next month.
By the time that second month came around I was so blank minded, often referred to as "brain fog" that I would forget to take my morning dose, then remember my evening pills, the following morning and evening but the next morning I would forget again. (that's complicated, isn't it?) So, say, Monday I would take the full dose, Tuesday I would forget the morning dose, Wednesday I would remember all day, Thursday i would forget the morning dose again, etc. So when I realized I was following this pattern, I tried calling my Endo but couldn't get through to him. So I took it upon myself to simply skip the morning dose. Then I got in trouble with the Endo. He called me "non-compliant" and insisted I take the MMI as directed. I had also forgotten to get a blood test the week before coming in, and he wouldn't have my blood tested at that point because I had been "non-compliant."
I stayed with him until the end of March 2010. That was when he stopped reducing my MMI dose, then at 12.5 mg daily. By then, I was suffering a great deal from what I thought was hypothyroid symptoms, even when the endo said I was "in the middle of the normal range". I just weaned myself off of it in about a week. I cancelled my next appointment and had a very pleasant summer. But my levels were distinctly hyper. (I didn't obtain copies of my lab reports until the end. Then I had them all printed out for me, but I misplaced most of them...)
Other doctors, and my husband as well, began pressuring me a great deal to return to the Endo. Finally, in September 2010 I agreed to go to Endo #2 for a second opinion. He told me that Endo #1 had made me hypothyroid.
He had a slightly different approach, starting low (5 mg) and going up from there, but it was the same thing all over again: the coldness, the low energy, the brain fog. He didn't seem to even understand the term "brain fog" until I fell face down in the street. between my blood draw and the appointment. He wondered why I had all the scrapes on my face and I told him. "Why did you fall?" he asked. "I don't know," I said and explained how hard it was to keep track of what I was doing when my brain was in a fog.
He obviously didn't really want to do it, but he dropped my dose of MMI by one pill per week, saying I would probably go hyper. I didn't . My TSH shot up from 0.01 to 2.53 (from what I remember.) [From Feb. to May] I felt very good though. I asked him to lower my dose again, though, because I thought feeling that good was only temporary. Those two appointments were 3 months apart, and the next one was two months later. He lowered the dose by another pill per week, again predicting I would "go hyper". I felt better at first, but then started going downhill again. His office called me as soon as my labs came in, telling me to reduce my meds further. My TSH was above 5.1 (can't remember exactly.) It was a little less of a nightmare after that, because I became confident enough to start reducing my meds gradually on my own and letting the endo know after the fact what I had done. I was always careful to leave my dose constant for the 4-6 weeks prior to my next lab date. Since my TSH stayed within the normal range, the doctor never complained. In December of 2012 I could hardly stand the MMI any more, and was taking 1/2 pill per day. As soon as the labs were taken, I stopped it altogether. I really wanted the Endo to prescribe me replacement thyroid meds but he wouldn't, even though he agreed that I did the right thing going off the MMI. My TSH wasn't high at that point, but my Free T3 was below normal range.
My TSH didn't go out of range again until near the end of November last year, nearly a year after I was able to stop the MMI. ... (continued as comment...)
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