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Very hyper-graves, allergic to methimazole, Now on PTU

Posted , 6 users are following.

melissa74622
melissa74622

I'm going to try to make this short: I'm a female 33, hyperthyroid, graves disease, overweight (biggest ever) was on methimazole two weeks but became allergic to it.....worst hives ever. Now my endo has me on PTU 200 mg a day. My metabolism is running 4xs higher then a normal one and slightly large. Has anyone been on PTU (this is short terminology) ? If so did your joints hurt? Once I began this medicine my joints have started killing me....is this normal? Will it get better? If not there is no more medication for me and I don't want my thyroid gone. My Mom has this but her levels were not as extreme as mine and she has been in remission twice.....so I know there is hope.

3 likes, 20 replies

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  • jeanette25032
    jeanette25032 melissa74622

    Posted

    Hi Melissa

    I have been on PTU for 4 years as I too was allergic to Carbimazole. My joints ache and i feel very unwell although it keeps my thyroid levels in normal range.

    Docs kept telling me my symptoms weren't from my thyroid but said they hadn't seen a case like mine. Anyway after years of researching and tests for my underlying condition I tested positive to lyme. I haven't been treated for lyme yet as docs are now blaming my symptoms on PTU, and won't accept my lyme results. I'm going round in circles as getting nowhere.

    I don't know if it's normal to ache with PTU but I know it can have horrid side effects. Get liver function tests regularly especially during first 6 months and go to ER if you start looking yellow, develop mouth ulcers, sore throat etc and tell them you are on PTU.

    • melissa74622
      melissa74622 jeanette25032

      Posted

      Thanks so much!! My Dr didn't say anything about the liver issues this medicine can cause, but I have read a lot of forum's and its always mentioned.
  • jean34329
    jean34329 melissa74622

    Posted

    Dear Melissa

    I wondered if you would advise me as to what your tsh etc levels were when you first diagnosed. I ask because my TSH was 0.17 T4 16.5 and TPOA less than 33. I also have a multinodular goitre.

    Kind regards

    Jean

    • melissa74622
      melissa74622 jean34329

      Posted

      T3 395, T4 1.46, TSH 3.05......these numbers mean nothing to me but I have not done any research.
  • acd
    acd melissa74622

    Posted

    Hi Melissa

    Sorry to hear osf your problems & yes I PTU can give you joint issues.

    From my own experience I was initially started on carbimazole (think same as methimazole I'm in UK) and when the endo doubled the dose because he thought my levels were not coming down fast enough I started experiencing issues, I would constantly feel like I was going to faint, was really spaced out feeling, had varirous niggly things like heartburn then I started with hives.  Endo then decided I was allergic to carbimazole & switched me to PTU.  Was fine to start with then he doubled the dose of this also & thats when my issues started, I had really bad joint pain & swelling, so bad I could hardly walk, plus had other symptoms but can't remember what they were now because this all happened a few years ago.  My endo refused to believe joint issues were a side effect of PTU & got his little reference book out & thrust it across the desk at me & said these were the only known side effects from PTU & because joint swelling/pain were not listed he said it was nothing to do with the meds & I should go & see a physio!! this was the last straw for me, I had felt perfectly ok until I went to docs with slight breathlessness then had about 18 months of feeling extremely unwell once I started on medication! Lost all faith in medical profession & came off all meds.  Of course once off PTU my joint issues went away but I know this was not a sensible thing to do & I basically went untreated for about 5 years, I think hoping the Graves would go away!  Needless to say it didn't go away & I became very sick and developed rheumatoid arthritis.

    I will never know if the RA developed as a resut of thyroid being out of control of if indeed the ATDs actually triggered it, which I have read can sometimes happen but I will never be able to prove it either way.

    So on visiting a new endo after the long gap of being untreated I was put back on carbimazole but this time I was started on a low dose which was very gradually increased & I was able to tolerate it fine and I'm still on it now although I am trying to find alternative ways to treat the condition as I do not want to loose my thyroid.  

    So my advice to you would be see if your endo will let you start on a low dose methimazole and see how you get on.  In the meantime start researching as much as you can, there are lots of people that have put this disease into remission by using natural methods.

    It is not easy & requires a great deal of commitment but I believe it is the only way to keep this vital body part and remember it is not your thyroid that is broken it is your immune system that is being overstimulated by something, for example by food allergies, stress, heavy metal toxicity (do you have any amalgam fillings?), too many toxins from pesticides or household products etc etc, probably not just one thing but a combination.

    Good luck

    Ann

    • melissa74622
      melissa74622 acd

      Posted

      Thank you so much!! In the last few months my street level has been maxed out!! I will try to find ways to destress and hope that helps along with natural ways because medication is not going to work for me at this time.
    • linda187
      linda187 melissa74622

      Posted

      Melissa, the reaction you had to methimazole is common when doctors start you on too high a dose.  That high a dose is not required.  Regarding your lab results, you should always get a paper copy of your lab tests and then post the normal ranges for your lab beside your values because the ranges vary from lab to lab.  From what I can tell, your TSH is in the range of hypo now, not hyper, the T3 seems exceedingly high and I do not know about the T4 as I said each lab is different.  There is a lot you can do to keep your thyroid that doctors do not tell you about.  First watch your diet and avoid aspartame (the artificial sweetener), sugar and gluten in your diet, take supplements like vitamin D and Regular L-Carnitine.  This will help with the muscles problems and will also help with normalizing the lab results.  Do you have eye problems as well.  There are a lot of anti-inflammatory supplements you can take along with your meds.  Please keep us posted on your course.
    • melissa74622
      melissa74622 linda187

      Posted

      Linda here are my levels. Tsh: 0.015, T4, 4.39, TSI 501, I don't see anything one T3 unless its thyroid peroxidase auto antibodies.....that is 435/until/m).... I can't read these lab results real well.

      As for the diet I will do some research and avoid sugars that are not in natural foods.

      I have no eye problems at all.

    • melissa74622
      melissa74622 linda187

      Posted

      My doctor did not do a test on my T3 levels. TPO (autoimmune) 435, and TSI (immune globin) is 501. I called and got my levels and the last post is correct.
    • linda187
      linda187 melissa74622

      Posted

      So the TSI and TPO are the antibodies and they are still high.  The TSH is low (indicating hyperthyroidism) and I do not know if the T4 is in range because this differs from lab to lab and I do not know your labs ranges.
    • melissa74622
      melissa74622 linda187

      Posted

      All of my levels are out of range by massive amounts. I called and got my levels along with what's normal. I mainly wanted to know if PTU causes joint pain or if after a few weeks this pain will go away.
    • candice55574
      candice55574 melissa74622

      Posted

      Hi. So what are there levels everyone is talking about? I have just been recently diagnosed so I'm new to all of this.
    • melissa74622
      melissa74622 candice55574

      Posted

      Your thyroid levels. I' new to this also....like three weeks new. You have your TSH which I think is an overall level, the T3 and T4, I can't explain those just functions with the thyroid ....I guess. I haven't researched everything but in time I will.
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