[Bobbi]

#1074340

I am glad to hear that your liver is recovering from the problem created by PTU. Methimazole carries the same type of risks as does the PTU. It is a different chemical, but it also has the known side effect possibility of liver damage. It is not common for either PTU or methimazole to cause liver damage, but it is common enough to make the side effects lists, and for our doctors to monitor liver function while we are on the drugs.

I work in a local not-for-profit with two women who have had thyroid cancer and had their thyroids completely, utterly and totally removed via surgery and RAI. They live healthy lives. I had my thyroid removed via RAI. I, too, have regained my heatlh. The liver is an essential organ — we cannot live without a liver. We can live without a thyroid.

[Cordsniper]

#1019829

I am a 26 year old female and I was diagnosed with graves disease in Sept. ’08 and put on PTU in October of ’08. At the end of December I turned jaundiced and it was discovered that the PTU had caused drug induced hepatitis and gave my liver a lot of trouble. I was taken of the PTU and sent to the hospital. My liver is recovering just fine and immediately responded to being off PTU. I have now been of the meds since the end of December or about 3 weeks and my thyroid levels are back to being uncomfortably high (Free T3 1840 pg/dL , Free T4 4.8 ng/dL, TSH .02 mciu/ml). My endocrinologist initially wanted to do the radioactive iodine but met with some other endocrinologists and suggested I have surgery instead. She said she could not treat my thyroid symptoms if I did not respond immediately to RI because she could not give me PTU. She said she did not want consider trying Methimazole because of how my liver reacted to PTU. I have an appointment to see a surgeon at UCLA on the 27th of January (a little over a week from now).

I was wondering if anyone has experienced this reaction to PTU and what your course of treatment was following it? I would like to try taking methimazole because I was responding well to PTU until the liver complications and was starting to feel a lot better. I also find RI and surgery to be very permanent solutions and I am uncomfortable with that considering I’m so young. I have been very healthy all my life, I play sports and exercise 4 to 5 times a week. It seems difficult to research my situation because there are so few reports of PTU causing this and everyone seems very unsure of how I should proceed considering it is all such gray area. I’m very confused and it all seems like its going very, very fast.

[DianneW]

#1074341

My thought on this is that your liver can’t be functioning at 100% after suffering hepatitis from the PTU, and so at best your liver may be more sensitive to the Tapazole. I think this is a case where following your endocrinologist’s recommendation would be wise.

Of course it’s a decision only you can make, but I agree with Bobbi’s advice to you. Either way, please let us know what you’re doing.

Best wishes,

[Cordsniper]

#1074342

My liver panel was back to normal last tuesday except for the biliruben which was still slightly high, though it could be in the normal range by now. So my liver has recovered very quickly and quite well which I am happy about. I’m just not sure I want to go to such a permanent and final treatment without even trying tapazole. I am going to ask my endocrinologist at my appointment tomorrow and see if she will relent and let me try it, maybe with weekly blood tests to check my liver. The hepatologist said I would have no lasting effects from the hepatitis and didnt see why I couldnt try tapazole with extra care and monitoring. They all seem to have different advice. Either way, I’ll still see the surgeon next week just because I am curious as to whether they would want to do a full thyroidectomy or just a partial.

[DianneW]

#1074343

Yes, many times we don’t get the same advice from different doctors, but fortunately each of us has the right to make the choice that suit us personally.

I’m glad to hear your liver has recovered, and if you decide to try the methimazole I wish you success. Have you asked your doctors what the chances are of permanent damage if you caught any problems right away? If that risk isn’t high, that’s on your side I would think.

When you talk with the surgeon I think you’ll find there are varying philosophies about how much of the thyroid to remove. Some surgeons want to remove as much as possible, and others like to leave enough that the patient has a chance to remain euthyroid. The disadvantage to that approach is that there are more treatment failures, which is the reason the other group of surgeons believes in "taking it all". As with any other treatment, a person can usually find a doctor who will do what the patient wishes.

Let us know what you find out. Best wishes,

[marauder]

#1074344

I started off my hyperthyroidtreatment on Carbimazole but developed an allergic reaction and was put on PTU instead. Over period of time I starte feeling very ill only to discover the PTU was casuing my liver to fail and to cut a long story short I ended up in Intensive Care facing a liver transplant. Luckily I was immendiately taken of of PTU and my liver started to improve. Right now it is vitually back to normal but I still see the Hepatologist and the Endocronologist every month to have my liver function and thyroid function checked. I am now back on carbimazole and my thyroid is responding to it, thankfully.

[sabinaa]

#1074345

Boy, this is a touch one. If I had been in this situation, I would certainly not rush into surgery either. You can deal with Grave’s for a while without meds and do some more research and get more opinions, may be from some reputable holistic specialists. I only took a fraction of the PTU that was prescribed to me and felt that was more than enough. And I got my thyroid down without liver problems and now my thyroid is functioning normal without meds – against the predictions of my past doctors! But then, every body is different. It is hard to advise on this as I only understand my own body. But I would certainly take the time to explore other options first.

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