[wombat]

#1060303

I was on PTU for over 3 years after being diagnosed with Grave’s disease. I just went through 3 months of nightmare due to PTU induced anca positive vasculitis. I was initially diagnosed with reactive arthritis and was given harsh medications which put me through severe pains. I was experiencing severe muscle and joint pains which completely crippled me from doing anything. I was in screaming in pain for hours EVERYDAY of those months. Mentally, it got to a point where I had suicidal thoughts. None of the doctors I consulted knew what exactly was going on until the second rheumotologist suspected vasculitis. After f’n Googling once, I was able to find relevant publications. I stopped taking PTU immedicately and all the symptoms started disappearing fast as in days. I also ended up getting the RAI treament. It’s been a month since the treatment and I feel very normal. I am very upset about what happened but the doctors seem careless and inconsiderate. My endocrinologist who I initially asked whether PTU was causing all the pain, flat out rejeted the idea doesn’t seem to acknowledge that it was a huge misdiagnosis. I am back to being healthy for now but I have no long what long term effect this has caused. I am sharing this information on whatever forums I can find so there are no more victims of PTU. Feel free to reply or contact me if you’re experiencing such pain so I can help you out.

[Kimberly]

#1181841

Thanks for sharing your story!

The latest medical guidance from the American Thyroid Association & American Association of Clinical Endocrinologists (which can be found in the “Treatment Options” thread in the announcements section of the forum) notes that unlike *most* side effects with anti-thyroid drugs, where the risk is the greatest during the initial period of taking the meds, the risk of ANCA-positive vasculitis acctually *increases* over time with extended use of PTU.

This is definitely an issue for patients to be aware of!

[snelsen]

#1181842

wombat,
I m so very sorry this happened to you. What a terrible and life changing experience.
I have not had your same experience, but most definitely have had disastrous experience of my own with missed diagnoses, and defensive and unapologetic physicians.

So glad you have has RAI, and feel good now. That’s the important thing.

I am a long way from PTU and methimazole now, but my understanding is that methimazole is the preferred ATD except for a period of time during pregnancy.
Did you ever hear that? Perhaps there are many people on PTU, and I just don’t know about it.

Shirley

[Author]

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