I have been on PTU for about 17 years now and I have had Doctor's in the past say to me that I may have to be on them for about 25 years. My thyroid tests are normal. I take 50 mg. of PTU once a day. I have recently physically moved to another area and I don't have a family Doctor. I have gone to see Doctor's in walk-in clinics and they have told me that PTU wasn't designed to be taken over a long period of time and that long-term use can lower white blood cell counts. Everytime I come off of the medicine I am not functioning normally and have to quickly come back on the medicine. These other Doctor's want me to come off of them completely. I am scared to do that as I know what to expect. Any help would be much appreciated.
Ask them to test your liver function and check your white blood cell count. If they are both normal then don't rock the boat.
This is a case of you are right, and they are right.
PTU, in the United States, is considered by most doctors to be a drug that one can only take for a year or two safely. In Europe they believe it can be used safely for decades, as long as the liver holds up.
So the choice many people are faced with is ruining their liver or killing their thyroid with Radioactive Iodine (RAI). RAI would be a simple choice if results were guaranteed, but for hyper people RAI doesn't always work completely, and can bring on problems if you are unlucky.
They want you to trade one risky treatment option for another risky treatment option.
I would get another opinion along with the tests I mentioned.
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