please help !I have crazy joint pain started from allergies to Methimazole !!!!

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Hi I was diagnosed by hyperthyroidism 50 days ago my TSH level was 0.005 so I had to take 30mg methimetazole per day , my Dr suggested that I take them all in one doze at night but i think that was wrong thing to do , at week 3 I started to have crazy skin rash but they didnt noticed that its from medicine they thought its food allergy!  so I kept taking it until it went all over my joints and after day 10 started to have horrible joint pain and swelling in very different locations keep changing every few hours so then my Dr figued out that my body reacted to MMI ! then He Suggested that I switch to PTU , so now its been 4 Days Im on PTU but still have really bad Joint pain and its getting way worse and sometimes I feel like im ok and again I will have crazy pain.. my DR said with my TSH number I dont have any choice but taking pills until it reaches a level that is required for surgery and he is telling me to take antihistamines with my pills and I should bare but Im dying from pain I really cannot walk or move my arms sometimes... anyone had the same issue? please please suggest !! help me is there any wayto get rid of allergy or medication that wiuld help me? im loosening my life im sick for 20 days now from skin rash straight to joint pain please help me

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  • Posted

    Hi Yasmin,

    What is the cause of your hyperthyroidism?  Is it an autoimmune disease like Graves disease or Hashimoto's thyroiditis?  I am sure you had full thyroid tests like FT3 and FT4 as well as TSH - can you post those results as well as the ranges for normal beside your results?  Did you have antibody testing?  If so can you post those results and if not, can you ask your doc about this.  I have heard of many patients on high dosages having hives from the meds.  My TSH was less than 0.001 which is not unusual for patients who have Graves disease.  I was put on 10 mg of Methimazole because my FT3 and FT4 were not too much out of range, however, even at that dose I would develop a welt across my forehead.  I swabbed it with Betamethasone scalp lotion (need a prescription for this) and it went away.  My Free T3 and T4 came down into the middle of the range as long as I stayed on the 10 mg dosage but my TSH would not rise until I did more research and added some supplements to my meds.  Once I did this, my TSH began to rise and my doc could gradually lower the dosage of Methimazole.  I have arthritis and had it before I had Graves disease.  What helps me is the arthritis drug called Arthrotec.  This is a prescription drug.  Vitamin D3 is most important to take for thyroid patients at least 1,000 to 2,000 IU per day.  You may also have Rheumatoid arthritis.  Can you ask your doctor about this possibility?  I was able to normalize all my thyroid test results and am in remission though still on a very low dose of Methimazole a few days a week.  My antibodies are non-detectable now though.  For myself, I really did not want radiation or surgery so I am happy to stay on a low dose of meds forever if necessary.

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    • Posted

      Hi Linda Thank you so much for your response, I took some romatism tests and everything was normal , Im just waiting for my ANA test other than that

      I switched to PTU on 19th of april and I already had joint pain from mwthimazole allergy , but what I feel ,is that its getting worse by starting PTU !! 

      Im taking 2 , 50 mg every 8 hours but I use to take methimazole 6 in one dose 5mg so 30mg methimazole per day ,but the dr noticed that the result didnt change in one month TSH stayed the same,but he said sometimes it takes time ... 

      This is my result 

      Free TS3 :6.20 H 

      Free TS4 : 1.80 H 

      RBC :  5.57 

      and TSH :0.005

      what supplements youre using ? I just had monthly D3 injection and Neurobion every 4 days but nothing changed imagine im sick since 2nd of april having skin rash followed by joint pain and im sleeping every night hoponh I will be Ok tomorrow but I dont even sleep sometimes cause I cannot move my arms and I wakeup with crazy pain in new joint !! I live in Dubai amd to be honest Drs here are not amazing cause the community is small .. they were telling me its food allergy the first 8 days so I was continuing using methimazole and I was getting worse amd Worse ! Its 5:23 AM now here and I did not sleep cause I cannot move my left arm and its so painful and yesterday it was my right arm ! in my blood test there is no inflammation and I just have minor blood which im taking ferfolic with it and Im taking pranol for my heart beat cause if I run or do activities it will go crazily high .. the Dr told me this is the only two medicines ( methimazole , PTU ) and you havento bare with them until you resch specific number which allows you to do surgery.. im really disappointed and sick I donno what to do how long I should bare..

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  • Posted

    So you need to know the ranges for normal for FT3 and FT4 for your particular lab.  What I learned for me is that there are a lot of causes of hyperthyroidism and it is important for you to know what is causing yours.  People like me who have Graves disease have a more difficult time getting their TSH to rise even when on Methimazole which will block the excessive thyroid hormone being produced but not necessarily raise their TSH as happened in my case.   People with Hashimoto's thyroiditis have just the opposite problem - they are very sensitive to the prescribed medications either methimazole for hyperthyroidism or levothyroxine for hypothyroidism and they bounce from hyper to hypo and back again.  I think this is because in Graves disease the antibodies attack the TSH receptors in the pituitary gland whereas in Hashimoto's the antibodies attack the thyroid gland itself.  What worked for me was doing some research and I found an article that said hyperthyroid patients did better if they took 3,000 to 4,000 mg a day of Regular L-Carnitine.  I also saw articles that mentioned the importance of vitamin D for good thyroid function.  I got tested for my Total Carnitine and Free Carnitine levels and I was deficient.  I was tested for Vitamin D and I was deficient and I was low on Magnesium.  So after my testing, I took 3,000 mg of Regular L-Carnitine and my TSH climbed from less than 0.001 up to 0.12.  Still not in the normal range but going in the right direction.  I then experimented with different types of carnitine and added 1,000 mg of Acetyl-L-Carnitne and this raised my TSH to 0.70.  From when my TSH began to rise, my docs, lowered my Methimazole dose by 2.5 mg at a time.  The first time my doc dropped it by 5 mg and I had a backlash of symptoms in two weeks so from then on it was 2.5 mg at a time.  It required a lot of paying attention to my body, my symptoms and my lab tests and after starting Acetyl-L-Carnitine I really required more frequent lab tests and more adjustments.  The Regular L-Carntine has a lot of Carnitine and a little bit of Acetyl in it and the Acetyl-L-Carnitine is just the opposite - it has a lot of acetyl and a little bit of carnitine in it.  Carnitine acts like a thyroid hormone blocker.  The Acetyl crosses the blood-brain barrier and carries anything you are taking with it into the cell nucleus.  I think that's what helped me improve my TSH.  However, i must caution you about Acetyl.  While it was a blessing I felt for my recovery, it is extremely sensitive and requires a lot of adjustments to meds, to supplements dosages and sometime not taking the supplement etc.  The Regular L-Carnitine is not so sensitive and helps with muscle pains.  Hyperthyroid patients lose a lot of vitamins, minerals and amino acids from their bodies when they are running hyper.  Other people on the Board have added acidophilus supplements and found this helpful.  People on this Board who have Hashimoto's did better on strictly the Regular L-Carnitine.  So while we all suffer from hyperthyroidism, there is no one size fits all.  The various supplements mentioned are available in health food stores.  When I first took the 3000 mg of Regular L-Carnitine, I got it by prescription in liquid form because it was easier to take that way.

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  • Posted

    Hi yasmin59378, unfortunately, skin rash and joint pain is a rather common side effect of Methimazole. It is more likely to get these side effects at higher doses (30mg and above). I had skin rash and took anti-histamines and it helped. At higher doses, my joints felt stiff and painful and the muscles as well. It got better after my dose was reduced. I started with 30 mg and now I am taking 20 mg per day. I take 4 tablets a day, the first early morning the last late at night. 

    Like Linda said, it is important to establish the cause of your hyperthyroidism. Is your thyroid enlarged due to nodules? In general, it is preferred to bring the thyroid hormone levels to a normal range before any operation. 

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