Reduce HyperThyroid Side Effects : Body aches and cramps when stretches?

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I have been taking thyroid meds for almost 3 years. off for 6 months in between. 

It all started with thyroid storm, to controlled, to good for 6 months (possibly due to body stress (i work in a noisy environment sometimes)) to back to hyperthyroid/Graves disease.

I have been taking methimazole. What i notice is 

i get a lot of body cramps/ache/pain/sore. Not sure what to call it, but it sure has the same feeling as cramps. The body that get such cramps are actually muscles that stretches. For example turning my body to put a belt on will stretch neck and back muscles. I get cramps on those muscles. It was going on for a while. I asked my endo doctor, and he says he don't think it is the medicine nor is the thyroid.

What i noticed were, when i was off for 6 months, i felt great and in shape. When i have hyperthyroid back, all these symptoms came back, of course including my fast heart beat of 110-120s. (Lopressor will help).

Anyways, last night was my first time skipping methimazole just because i left the pills at office. At the same time, it was my first time trying out Acetyl L-Carnitine HCL (800mg) + Alpha Lipoic Acis (400mg).

Reason for trying this? Been reading for a while that it actually will help with muscles and they are supplement so it shouldn't affect any medication. Or even  L-Carnitine HCL.

Anyhow, it was my first time i don't have any cramps! But, my brain & body has memory of telling myself don't stretch whenever i move automatically. Lol. Pretty amazing when i think of memory in muscles and brain. 

Today, I am going to go back on the methimazole again, without the Acetyl L-Carnitine to see if it comes back from cramp. After that, if it does I'll continue it with Acetyl L-Carnitine, and check back. if it does, then i'll try to stop methimazole. Who knows i might need the lighter version PTU rather than methimazole? Or maybe even carbimazole.

Will keep everyone up to date.

At the same time, i hope whoever has the same experience would chip in as well.

Cheers,

AT cheesygrin

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11 Replies

  • Posted

    I applaud you for being so focussed on your body and what happens to it.  In my opinion, this leads to being an empowered patient.  It has been shown in research studies that when a person experiences thyroid storm or even is just hyperactive without storm, they lose a lot of vitamins, minerals and amino acids from their muscles through urination.  Replacing these with supplements helps the problem of muscle cramps a lot.  Some of the more prominent and necessary vitamins, etc that are lost are Carnitine, vitamin D3 (which is extremely important for good health and recovery) and Magnesium.  One study was focussed on Regular L-Carnitine and the benefits to hyperthyroid patients.  My story is that I had Graves disease diagnosed in 2007 and was put on treatment with 10 mg of Methimazole.  This immediately normalized my Free T3 and Free T4 levels but my TSH remained essentially at 0.  Then I read that study and first got my GP to test my Free Carnitine and Total Carnitine level and I was deficient.  I was in a research study that tested Vitamin D and was deficient in that.  And I asked my doc to check my Magnesium, though not deficient in that I was at the bottom of the range.  So I started taking these supplements and my TSH began to rise slightly.  My main reason for doing this was to find out how to normalize my TSH.  Then I experimented with adding Acetyl-L-Carnitine, 1,000 mg to my program and my TSH just shot right up.  I was stunned,  However over the ensuing months, it took a lot to keep me within range and regular because Acetyl-L-Carnitine when it is combined with even a low dose of Methimazole or Carbimazole will drastically alter thyroid levels.  I don't think it has this effect when used alone with no antithyroid meds.  I experimented with dosages and got blood testing often (like every 3 weeks) to remain stable.  I really think it was responsible for lowering my antibodies.  So though supplements usually are not a problem if you are taking prescribed meds, that is not true of Acetyl.  HOWEVER, while it did a lot for me, I caution anyone considering using it to be aware that it is so powerful that unless you have frequent testing and adjustments, you run the risk of becoming very hypoactive.  Other people on the Board took it and many added other things that caused them to go VERY hypoactive.  I even tried to get a company to research this to no avail.  The difference between Regular L-Carnitine and Acetyl-L-Carnitine is that Regular has a little bit of Acetyl in it and a lot of Carnitine and Acetyl is just the opposite - a little bit of Carnitine and a lot of Acetyl.  It is the Acetyl part that crosses the blood-brain barrier.  In my opinion because of this, this is getting the carnitine and Methimazole into the cell nucleus but I really wish they would do a valid research study on this product.  My disease was triggered by stress and I have been stable for many, many months on an extremely low dose of Methimazole (2.5 mg daily).  Then at my last visit, my endo asked me to take 2.5 mg every other day and I have been.  However, one day last week, I was experiencing symptoms again and took 5 mg for that day and then back on the regular program.  I stopped taking Acetyl-L-Carnitine 2 years ago because it was causing palpitations and my values were too low on the range.  People feel better when their values are at the middle or upper part of the range.  
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    • Posted

      Linda

      You could have been writing my story in your above post.  I too am taking both the Acetyl-L-Carnitine and the L-Carnitine.  I adjusted my dose of Tapazole to 2.5mg a day and my T4 levels are on the high end of the scale.  Doctor is not ordering T3.  My TSH is still very low.  Are you saying I should stop taking the Acetyl-L-Carnitine.  I'm scheduled for another blood test......guess I'll wait and see and go from there.

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    • Posted

      At the beginning, I did not have a problem taking it but when my levels of TSH started to rise quickly and my Frees went to the bottom of the range, I started getting the palpitations.  As far as continuing to take it, that depends on what your values are now in relation to the ranges for normal and your body symptoms.  Also Vitamin D3 is very important to take with it. 
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  • Posted

    John I would also say that in my journey, I took responsibility for taking the supplements and adjusting them while I worked with my Endo to adjust Methimazole doses and he took responsibility for that.  To be an empowered patient, I have always gotten copies of any lab tests done on me and asked for antibodies at least once a year to confirm my diagnosis and to see if they had reduced any and they were normal at my last test.  I would not discontinue Methimazole without normalization of my antibodies.
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    • Posted

      Hi Linda!

      I'm happy to hear you are an empowered patient too!

      Now, it sure does sounds like stress causes thyroid for me too. I'm wondering, what kind of supplement mg do u take for mag & D3 daily?

      Also, about acetyl carnitine, as you said it will cause us to go hypoactive, but at the same time you said it causes palpitations as in heart beating fast? I would think that Acetyle-Carnitine would help with palpitation, plus it causes hypo.

      I think i will stop my acetyl L-Cartine today, since I am going to get a blood work panel done this coming thursday. That way I can get an appropriate range of where I am , and what I am deficient in.

      Thanks!

      John

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    • Posted

      The Magnesium Citrate works best for me.  I take one 150 mg capsule a day.  It is also cheaper too.  I did try Magnesium Glycinate but did not like it as much.  I take vitamin D3 gel caps, 1,000 IU caps.  I have been taking one a day for a long time but as it is winter now, I take two a day  I did try vitamin D pills and did not like them at all.  It needs to be D3 and the gel caps are small and easy to swallow.  I did not have the palpitations with Acetyl until my levels dropped right to the bottom of the normal range.  I know from other Boards that you can get palps with either hyper or hypo.  I also had an Echo done and the doc said the abnormality that showed up on it was common in menopausal women.  It wasn't a big deal but I have stayed off it since then.  I do take Regular L-Carnitine 500 mg on the off days that I don't take Methimazole. 
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    • Posted

      Hi Linda, rewriting post since I accidentally post links.

      today I went to get a blood work done. Was quite some work, as the doctor didn't want to perform carnitine test just because he feels it was expensive and insurance will not covered. I still requested it to be done just so I know how this acetyle carnitine pill actually help.

      Meanwhile, I have questions on whether to change the pill I'm taking or not since the one I have only has qty of 50 and it's almost done. Acetyl l carnitine HCl (800mg) + alpha lipoic acid (400mg).

      Only reason i started with this is because thats what they carry aroynd the grocer at that time.

      Should i try to take a step back and try just l-carnitinr, or just acetyle lcarnitine?

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  • Posted

    I didn't bother testing the Carnitine after I started the supplements.  I just wanted to make sure I was deficient before I started them.  Once you start on them, especially Acetyl-L-Carnitine you want to get and keep a copy of all your lab reports on thyroid tests (TSH, Free T3 and Free T4).  Some docs only test TSH and Free T4 but they should test both.  The Acetyl-L-Carnitine will raise your TSH and lower your Free T3 and Free T4 and you want to keep on top of that or you will go hypOactive very quickly.  So I am assuming he checked these when you saw him?  That's what you want to follow in your lab tests, not the amount of carnitine.  And if the TSH goes over 1.5, stop the Acetyl.  Depending on where your lab values are, you can always take the Regular L-Carnitine which helps  your muscles but doesn't alter your thyroid lab tests as much as Acetyl does.
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    • Posted

      Hi, last night after dinner, i took the :

      1. [Acetyl L-Carnitine HCL (400mg) + Alpha Lipoic Acis (200mg)]

      2. Vit d3 (500mg)

      3. L-carnitine (1000mg)

      for the first time. I've notice some effect such as:

      Body heat up during my sleep, which causes me to itch from head to legs.

      I'm wondering if this is because of the L-Carnitine or Vit D3.

      I'm going to try to lower the dosage of L-carnitine to 500mg and check it out today.

      But, apparently according to my experience and family experience, when our body gets too warm from taking vit B, D, E. We usually feel itch as well.

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    • Posted

      What kind of vit D3 are you taking - pill or gelcaps?  I found the D3 pill not to work and caused me to gain weight.  I like the gelcaps.  My experiments with supplements, I took them one at a time so I could see the effects of each one before I added any together.  There is also something called histamine intolerance and mastocytosis and from the diagram I saw, H.pylori has something to do with causing this.  I think I have this as well so I have to avoid histamine containing foods.  I am just learning about this condition and most docs know nothing about it.  When will you know your thyroid blood test results? 

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