Joint/muscle pain and MM

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.

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. 

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).

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.

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.

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.

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.

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.