Long Term PTU

[sam246]

  I have had  Graves for over  10 years, and although I have failed to go into "remission" permanently. I have been doing great on 25 mg of PTU (1/4 pill  a day) for the past year.  (Before this year, I was on and off Methimazole, but would always slip back into hyper eventually).  My Endo says I will need surgery eventually  due to unknown long term sides effects of using PTU (we both ruled out RAI due to eye issues  that I have) . However, it seems that surgery is such a drastic step for treating something that is so well-controlled on such a low dose of meds. We are even trying to go as low as 1/4 pill every other day. I am VERY sensitive to being Hypo-a few times when they over-medicated me and my THS approached 5, I had the symptoms of someone with a TSH of 50 and was unable to go to work due to chronic fatigue,joint pain, and depression (all of which resolved when we get my TSH under 2 and my Frees in range). The symptoms of hyper have never bothered me, other than feeling slightly "hyper" at times; no heart issues. And  much prefer feeling a little hyper than being unable to crawl out of  my bed.   I'm a professor and a researcher, and I simply can not imagine how I would keep my job during the  year following surgery  if it brings on these hypothyroid symptoms while we fiddle with doses, etc. I realize PTU carries the risk of liver disease, but how big is this risk with such a small dose? How many years might this be a safe option (yes, I realize nothing is 100% safe).

[stella5349]

Have you looked into selenium or diet changes?

[sam246]

I am, and have, done a lot of alternative things (acupuncture, chiropractic, supplements, meditation, exercise)-but all of these seem to be very non-specific...although of course good for general health. Any other thoughts?

[stella5349]

Its a big risk.. and the PTU is only a band-aid for the condition and will effect the liver. In fact the disease can be linked itself to the liver not functioning to its full level and adding in PTU can cause damage more.

Without leveling out naturally and getting to the root of WHY the Graves antibodies rage on and on for you in not being looked at and fixed with PTU or even going for a sugical removal.

Depending on dozens of things and seeing you express the Graves isn't life threatening in cardio or causing huge symptoms you may be a mild case at this time and could benefit well from reading how natural suppression can happen with some lifestyle changes and supplements that can curb autoimmune antibodies for some patients.

How much "out of the box" information have you been researching about Graves?