Joint/muscle pain and MM

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Hi, Can anyone with experience confirm that joint/muscle pain is one of the many side effects of taking MM (Methimazole)? I think I suffered a bit joint/muscle pain on my left-hand wrist since starting taking MM -- not sure though it's after or before. I recently became euthyroid and decided to experimentally drop MM. After three days of MM-free, surprisingly noticed the joint/muscle pain has subsided a bit (but still lingering). So can I conclude that MM is the devil of joint pain infliction? Or the pain would come from the autoimmune disorder? Anyone?

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  • Posted

    I don't think it is due to the Methimazole.  When you are running hyper, you lose a lot of vitamins, minerals and amino acids from your body.  One of those amino acids is Carnitine,  You can get tested for Total Carnitine and Free Carnitine levels and you will probably find you are deficient.  You can replace this by taking 3,000 to 4,000 mg of Regular L-carnitine and you should find your muscle pain improves.  My levels were deficient.  I was also deficient in vitamin D which is very necessary for good thyroid functioning.

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    • Posted

      Thanks, Linda. This is my thoughts: the autoimmune antibodies indirectly attack thyroid to produce more than needed hormones. And MM is taken to block thyroid producing hormones... their (autoimmune antibody and MM) acts are against each other. When MM gain the upper hand, autoimmune could again misfire to attack other body parts?  BTW, just recheck the long long list of MM side effects -- joint/muscle pain is certainly one of them. I like your theory of nutrition (supplements) deficiency. Yet, my experience is that some herbs possess working effect on fighting auto-antibody and power in reducing inflammation. Just my 2c.
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  • Posted

    Hi Mike

    I've been thinking about a MM connection too. I've developed a stiffness/pain in my left middle finger. Just that one. Thought it might be arthritis. I stopped MM for 2 months for other reasons and I believe the pain in my finger stopped. Started MM a little over a week ago and pain is back. Do you find it eases after awakening?  I was trying to pin this on sleeping position because after I waked up and flex a few times, it's usually better or gone. But my left hand does not have the dexterity it used to have. Might be totally unrelated to MM and perhaps muscular? Seeing an ortho in 2 weeks and I'll know more ... I hope. 

    As for other pain, I believe I had muscle cramps in my thighs before ever starting MM and that's gone now. Difficult to pin things down. I don't have hyper tremors but this left hand has a mind of its own these days. My middle finger is stiff now, come to think of it. 

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    • Posted

      Hi Jay, Thank you for sharing. I do not think your left hand suffers arthritis, specifically RA, because RA usually attacks both sides of the body quite symmetrically. So you did have/having pretty clear evidence on the joint/muscle pain connection with taking MM from your real experience. And yes, I do find it eases a bit in the morning. I don't know if it is due to sleeping position, but I think good metabolism can make it go away a bit. Normally our thyroid is busiest secreting T4 T3 at/after midnight that would cause our body under high metabolism condition (that's why many GD patients suffer palpitation at night because of too high thyroid level -- not good level). If we have a night of "good metabolism", it would benefit our body with joint/muscle pain. Thus awaken with pain eased! On another occasion, I found out that exercise (e.g., machine workout at a gym) can also alleviate the joint/muscle pain (of hands and feet) rather than escalate (I was afraid of). Again this is because of the "good metabolism -- blood circulation" factor? Just my thought.

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  • Posted

    Hi, Just want to clarify that all my messages posted so far are just my thoughts based on my experience and "theory". They are not science-proved. Now I have crossed over a related information, online, from some Harvard U educated professional stating "inflammation = hormone receptors shut down". First we, in GD case, would think TSI (autoantibody) attacking TSH receptors in pituitary would be the cause of the inflammation- joint&muscle pain. However, TSI shuts down the TSH hormone only to make thyroid produce too much T4 T3 - metabolism hormone. It is the MM blocking thyroid hormone receptors that shut down the production of metabolism hormone - which in turn causes the inflammation on joint&muscle. It is more science-based information, I reckon. Other than the short-term side effect, MM also has a more serious long-term side effect: cause a liver problem (I think it needs to be reminded for those long time MM users).

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  • Posted

    The liver problems associated with MM usually happen at higher dosages. that's why when I am seen by my Endo first was quarterly, now it is every 6 months, he always does liver function tests.  I have been on MM since 2007  and I have never had liver problems.

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    • Posted

      Thank you for your sharing. You are lucky to have no liver problem with long time taking of MM. But that's probably because of the low dose or infrequent taking you can handle. Not all hyperthyroid patients receive or afford the same "ideal" treatment like you do, so still need to aware of this serious side effect.

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  • Posted

    Yes I am aware of the liver problem side effect.  That's why good docs always do liver function tests every time they do thyroid lab tests and I do think I have had no problems because of low dosage.  I would not, however, be where I am today if I was a passive patient and only followed doc's instructions.  I would be on 10 mg of MM with a less than 0.001 TSH because that's where I was for 2 years until I did some research and experimentation,  Also got lab tests for vitamin D, magnesium and carnitine levels and fixed those deficiencies. The medical profession does not even think of doing that yet most hyper patients are depleted and deficient in vitamins, minerals and amino acids.

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    • Posted

      I think, in theory, and in GD case, the nutrient deficiencies are due to hypermetabolism (hyper-thyroid) effect and in turn, hyper-metabolism is caused by the autoimmune disorder. So replacing lost nutrients alone can benefit improving symptoms and general health recovering, but if the underline autoimmune disorder is not addressed and resolved, the disease cannot be fully recovered. In your case, the antibodies causing your illness has been down to nondetectable level, so there must be part of your treatments were taken to address and tackle autoimmune disorder (please share). Thus you're well in euthyroid now and on the way to remission and full recovery.

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  • Posted

    I agree that solely replacing nutrients will not get one recovered.  However, just taking medical treatment to stop the excessive thyroid hormones will not replace those lost nutrients either.  I was fortunate to be diagnosed early when I was only 10 points above range in my FT3 and FT4.  However, while 10 mg of MM immediately brought those levels down to mid-range, my TSH remained at less than 0.001 for 2 years.  Then I read an article in a Medical Journal on the benefits of Regular L-Carnitine for hyperthyroid patients, asked my boss about it (he is a genetic metabolic specialist) and he said, "well it won't hurt you.".  So I tried the 3,000 mg dose of Regular L-Carnitine and my TSH rose to 0.12.  Then I experimented with different types of Carnitine and added Acetyl-L-Carnitine to my program and my TSH just shot right up well into the normal range.  When that happened,  my Endo kept adjusting my MM dosage downward.  I believe Acetyl L-Carnitine was what made the difference because it crosses the blood-brain barrier.   However, that said, it is certainly not without cautions.  When taken together with MM, it raises TSH extremely quickly and if not carefully monitored one can go very hypo very fast so it requires a lot of adjustments.  I have seen others on the Board who didn't know this and went very hypo.  Also, when I was taking a higher dose at the beginning i.e. 1,000 mg of Acetyl, I had side effects of loud noises in my ears etc.  Since I stopped it for awhile and then required it again, I took it at a much lower dose (500 mg) and only every other day with MM.  No side effects with this dose. I also found out vitamin D is very important for thyroid patients and accidentally found out I was deficient in this.  While I was  using Acetyl to raise my TSH, my Frees fell to the bottom of the range but not out of range.  I didn't mind that though as long as they stayed in range.  Now they are in mid-range again.  I believe that's what made the difference for me.  That and a lot of monitoring and adjustments.

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  • Posted

    Hi Linda, Thanks for sharing your experience again. As you mentioned, the thing that made the difference for you was: taking LC and ALC with MM to lift TSH through "a lot of monitoring and adjustments". I wonder if you can link this "different thing" to the result of your nondetectable TSI level~ (sorry I lost the question mark key on my keyboard)  Anyway, my intention for starting this discussion was to find out "how to monitor and adjust treatment" during the time between blood tests. Originally, I thought weight changes could be a clue, sign for med adjustment... now I think it's not enough and still needs more ways of monitoring the thyroid level. Other symptomatical changes are either too subtle or too drastic to make the needed adjustment in time without big danger. Appreciate all ideas.

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  • Posted

    I was very fortunate that my GP would order tests between my Endo quarterly visits so I was tested about every 6 weeks.  It worked out that my Endo would adjust my meds dose downward (usually by small amounts of 2.5 mg and then more recently taking it 3 or 4 days a week only) and I would adjust Acetyl by either lowering the dose or only taking it every other day or at one point, I stopped it altogether for about 8 months.  That was interesting because after I stopped it, my TSH level would drop a bit each month which I expected though it never fell out of range.  When it hit about 0.70 all of a sudden it shot up again and I didn't do anything to make it do that.  More recently due to stress it fell again to 0.51 and I restarted the Acetyl albeit at a lower dose of 500 mg every other day with my MM dose and so far I have raised TSH again to .81.  I take 500 mg of Regular L-Carnitine on the off days.  This has been the best I have felt while taking these supplements because again it is a very low dose.  I managed to keep my TSH in the normal range for a long period of time this way and I think this is what lowered my TSI antibodies.  My TSH has ranged most of the time from 0.70 to a high of 2.5.  When I see a TSH level of 2.5 I really make adjustments to lower it because I like it at 1.0 to 1.5. 

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  • Posted

    That was my level before I became hyper and I feel good at that level.  
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    • Posted

      So your TSH was at 1.0 to 1.5 before going down to < 0.4 (the hyper limit)?  (: I fixed my keyboard)

      If so, it sounds a bit too rapid of becoming hyper? In my case, TSH changed from 1.29 to 1.15 to 1.41 to 0.2 to 0.01 to <0.01  The changes were yearly except the last change from 0.01 to <0.01 was made in just 3 months. It took one year to make a change from 1.41 to 0.2 and another year from 0.2 to 0.01   I am pretty sure during the years I didn't feel or suffer obvious hyper syndrome/symptom, not until the test showed 0.01 letting me worried and started feeling something wrong (persistent weight loss). Even at the review meeting with my doctor, he just dismissed it as subclinical saying my T4 T3 numbers were still (barely) in the range. I doubted very much about it and insisted to do another test 3 months later... then he immediately sent me to an endo for further diagnose as TSH became <0.01 and T4 ran over the limit. AW, in my case, TSH did not drastically decrease from normal to hyper level.

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