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Propylthiouracil PTU problems

Posted , 4 users are following.

jeanette25032
jeanette25032

I have been taking PTU for 3.5 years as I was allergic to Carbimazole. I am now getting upper gastric pain whenever I eat or drink as well as bloating. I had a MRI of the abdomen last week which shows liver and kidney cysts. The doctor isn't worried about it but I am as PTU can damage the liver. I have so many awful symptoms and blood tests showed up positive then negative to lyme and porphyria. I havent a clue what is wrong and neither have doctors. Could all this be side effects of the PTU and Propranolol

0 likes, 3 replies

3 Replies

  • fern12
    fern12 jeanette25032

    Posted

    I believe your symptoms could be due to the PTU.  

    What were your lab values and normal ranges for your thyroid at your last test?

    Also, why have they kept you on the Propranolol so long?  What are your blood pressure and pulse numbers?  Is your heart rate particularly fast without this beta blocker?

    How much PTU are you on?  Can you decrease the amount?

    • jeanette25032
      jeanette25032 fern12

      Posted

      My tests are in normal range but they have kept me on the meds as they say there must be an underlying problem as they have never seen a case like me. My thyroid is multi nodular but uptake is low and nodules neither hot or cold. Thyroid antibodies are ok. I have looked for the underlying problem but test results are weird. American test for lyme positive but UK doesn't accept results and UK test negative. 1 German test for porphyria positive but 3 month later UK test negative. 7 years of feeling like hell and no answers. Adrenal maladaption along with cysts in liver, kidneys, breasts, ovaries and thyroid and doctors can't find what's wrong. I read that garlic cures lyme so i started eating garlic bread every day. 2 weeks into it came out in huge boils so i stopped for weeks. Now if I eat the slightest bit of garlic the boils turn up on my head and stomach. My body has gone nuts. I am also allergic to perfumes, pesticides etc.
  • julie13804
    julie13804 jeanette25032

    Posted

    I don't have state that I am not a doctor... but had grave's disease about three years ago... They put me on PTU and it worked well. My endo at the time said he would only let me take it for one year - and then see if I went into remission. I BEGGED to stay on an extra 6 months because I was finishing up school and did not want to have the symptoms I had when my grave's was active. He told me 6 extra months was it! So I too wonder why they have left you on it for so long... grave's has been known to go into remission (but can come back, as I am experiencing now) and I have several friends who also went into remission. It is a good short-term help/fix, but I don't think I would want to be on it much longer than a year or so. The side effects and issues that can arise are not good- as you are possibly experiencing. I hope not.

    Maybe it is time to see if you have gone into remission? I hate thyroid issues and the lack of knowledge or work that doctors seem to want to give this little organ that controls so much. With these issues, I do think we need to be our own advocates - it is hard because they are DOCTORS! They should know better, right? Time to step up and maybe see if you can get off it and see if you even still need it. 

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