My History with Graves', Hypo symptoms, and acetyl-l-carnitine

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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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  • Posted

    Continuation... :

    In the meantime, though, I was in misery, feeling all the symptoms of hypothyroid without the TSH to back it up, or the anti thyroid drug to discontinue.... No supplements. My TSH gradually dropping, but feeling worse. I went out of state, and an 8 hour drive away, to an Endo (#3) I thought would be better. She is the one who told me I had both types of antibodies: both for Graves' Disease (GD) and Hashimoto's Thyroiditis (HT). She said I should have RAI (radioactive iodine) because she didn't believe that my crossed eyes were due to the GD, and she said that the anti TPO antibodies (HT autoimmune attack) would destroy my thyroid just like the RAI would, but with RAI, I would be able to start on the thyroid supplements. She was too afraid of giving me supplements without the RAI because "the smallest possible dose" might make me go hyper again.

    She did write a letter, however, instructing me to take it to my PCP (primary care physician) which would allow him to run the lab reports every 3-4 months and she would see me in a year unless something more drastic turned up before that. That was last May. My TSH was borderline low.

    In June, I tried to see my old endo #2, but he dismissed me as his patient because I went elsewhere for a second opinion. Then I turned to my regular doctor. I talked with him and he agreed with me that I was walking a tightrope between the GD and the HT, and that no doctor could walk it for me and I just needed the means to do it. He gave me choices and I chose Cytomel because I knew it was fast acting and fast leaving my system in case the GD flared up again as well.

    Cytomel helped me immediately, but I could tell it was much more potent than I had imagined. I had only started with a 1/2 pill (5 mcg per pill) and it made me feel like a normal person again, but it raised my heart rate to 93, and I was committed to taking my blood pressure and pulse to determine if the GD returned. My doctor tested my TSH, free T4, and free T3 every 6 weeks after that, and my TSH rose the first two times I was tested, while I had been gradually increasing the Cytomel (Liothyronine, or L-T3) from a restart level of 1/8 of a pill, to a half pill. Then I was more confident that I wouldn't go hyper again, so I increased it to a whole pill and the doctor had prescribed Levothyroxine (L-T4) as well to stabilize me. I thought it would be 25 mcg L-T4, but the pharmacy gave me 50 mcg tablets, so that's what I took. I also increased the L-T3 to a pill and a half just before my next labs (big mistake). That was when, last November, my TSH dropped to 0.009, and I was really in big bad trouble. I dropped my doses, but it didn't matter to anyone, except for making me feel hypo and making me miserable again.

    That resulted in my being referred to Endo #4 who I saw a month ago and who really wanted me to stop the L-T3 altogether, but consented to my dropping it gradually, and when my labs came back last month and they were 0.18, I think, he said I could continue taking 1/2 pill... or at least try it if I could tolerate it. I couldn't tolerate less than 1/2 pill in the morning and 1/4 pill in the afternoon, so I let him know.

    Today, he told me I could stay on that dose, get new labs done in a month and see him in three months. (So my labs will be 2 months apart.) He will let me know if anything changes.

    I also asked him what he thought about the Carnitine. He said it wouldn't matter with the thyroid, so he would neither recommend it nor forbid my taking it.

    He is a "Fellow" which means he is a newbie, just starting out after his Residency. He asks other endocrinologists their opinions a lot, and the others are very hard-nosed, I think. One came in and talked to me today, and was very dismissive of 23andme because he knew from news reports that it was being investigated by the FDA. He said no one lives past infancy with primary carnitine deficiency, even though I have just read clinical studies involving adults with it. Mothers were diagnosed when their infants were found to have it, because when a person has only one copy of the mutation their symptoms aren't so severe.

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  • Posted

    First off, NEVER let your doctor reduce your meds based on blood tests, if you take your meds before blood is drawn the it will show up as OK but in reality all that is measured is what is flowing round in your blood stream!! You know the symptoms of hyperactivity so you can adjust your meds yourself. Labs are only as good as the person doing them!! That is not to say they don't know what they are doing but if they are doing the same tests over and over then mistakes can be made, plus as I believe doctors only look at the lines on the computer screen to show where things are out of range!! Even then sometimes they ignore it!!

    Can't help with the Carnitine thing, sorry. take your health into your own hands and be more assertive with your doctor, he can go home and forget what he has prescribed / tested / said but you have to live with his decisions!!

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  • Posted

    Thank you, glynis, for your supportive comment. I agree that we have to take our health into our own hands, but I also realize it is a lot easier to reduce the amount of medicine we are prescribed than to take more. That is why I did better on the anti thyroid drug-- I could control it myself.

    Now I'm in a double bind. First to update my report:

    "...I went to the health food store in my neighborhood and found the lowest dose I could find on the shelf, 500 mg., bought it and started using one capsule per day.

    "I feel much better, more "normal" even when I don't feel entirely good, like being forgetful in a normal way instead of being totally blank minded. Or drowsy at night time when I really do need more sleep, etc." [written March 3rd.]

    "Endo #4 called me yesterday after I called the office. I called because I was running out of Levothyroxine and it would only last me for a week or two, when it was my understanding that I should stay on the present levels for the next month until I have the labs. Now he tells me that in discussing my case with his colleagues it is decided that I should go off the Levothyroxine right away, and taper off the Cytomel, and be tested a month after I have stopped them both.

    "I'm feeling so much better taking the Acetyl-L-Carnitine that I really don't hardly care, but it is a little stressful feeling like I am totally at the mercy of the current medical practice." [written this morning -- about 9:00 a.m. my time, March 4th. (now 9:38).

    I am left with the feeling that it would be much easier to get narcotics than to get thyroid supplements from a doctor once having been diagnosed with Graves' Disease.

    My main hope is the Carnitine supplements and so far I feel good enough that the thyroid supplements don't matter so much. If I were allowed to do it myself, I would probably do the same thing, or would have at least skipped a Cytomel chunk (1/4 tablet) a couple of days ago.

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  • Posted

    Another update:

    I had taken my 25 mcg Levothyroxine and 3.75 mcg Cytomel when the Endo called and told me that I should go off everything. The insinuation is there that he will not (or will not be allowed to) prescribe the thyroid supplements unless my TSH shows the need, and doesn't expect that to happen unless I have been off the supplements for a month before the lab tests.

    So even before I changed the doses, the night after the Endo called, I was almost too stressed out to sleep and when I went to bed, I didn't drop off to sleep right away, and then I woke up again after about 5 hours sleep unable to fall asleep again until I had a 3 hour "nap" around noon.

    Last night, I slept only 3 hours, being very obviously stressed, after reducing my meds. Today, I plan on increasing the Acetyl-L-Carnitine to 500 mg twice per day.

    I don't believe the old established Endocrinologists are right, just that I have to cooperate with them in order for the medical breakthrough to occur which will benefit everyone, not just myself.

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  • Posted

    Fern and Others,

    Keep in mind that the carnitine does NOTHING to help your thyroid hormone levels. It is not curing anything.

    The real reason you feel better is because when you are hyperthyroid, the thyroid "eats up" the carnitine that occurs naturally in your body. And carnitine is a VERY important element in the process of powering up your muscles. If you don't have the carnitine available to do that, then you experience muscle weakness/fatigue.

    Getting extra carnitine in your body through supplements or red meat gives your body enough "extra" that can then be used within the process of powering up your muscles. Thus, you feel better - no muscle weakness/fatigue!

    HOWEVER...the overactive thyroid issue still needs to be dealt with. Your thyroid hormone levels have NOT changed just because you feel better taking the carnitine. The carnitine is NOT harmful. And it relieves the symptoms of muscle weakness/fatigue. But it is NOT healing or curing your thyroid at all.

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  • Posted

    This thing about how the thyroid "eats up" the carnitine may or may not be true. I read the article. The thing is that it is not the only reason carnitine may be low in our bodies, nor does it mean that the symptoms of carnitine deficiency are not a close mimic for low thyroid symptoms, regardless of the actual state of our thyroids.

    The only thing I am saying is that my DNA data shows something different and suspiciously out of the ordinary for the gene that normally provides the carnitine naturally in our bodies.

    It is also conceivable to me that carnitine and other amino acids could play a role in TSH (Thyrotropin) production.

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  • Posted

    Thanks for your explanation, Fern. I'm sure you will figure it all out.
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