Discussions By Condition: I cannot get a diagnosis.

Hashimoto Encephalopathy

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Finally
  • April 8, 2008
  • 06:41 PM

Hi,
I was wondering how high are the antibodies when people are diagnosed with HE?

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6 Replies:

  • I think there is a women on this board who was diagnosed with this....can't remember her name...but keep posting here and I think she will see it :) Joan
    Joan5555 316 Replies Flag this Response
  • I think there is a women on this board who was diagnosed with this....can't remember her name...but keep posting here and I think she will see it :) Joan Elke i think it was, i actually read that post today :)
    Eyes, Ears 24 Replies Flag this Response
  • Hello Elke,I wanted to know how high your antibodies for tpo were when you were diagnosed?Thank you.
    Finally 3 Replies Flag this Response
  • I think they were about 8 times the normal limit, and my thyroglobulin ones were about twice as high.There's a lot of different assays for thyroid antibodies, all with different normal ranges, so the actual numbers are hard to compare.Apparently, with HE, it's not the absolute values that determine they symptoms, just that they are high and you have an autoimmune thyroiditis (the encephalopathy is a complication of the thyroiditis).Hope this helps!By the way, a certain percentage of the population has mildly elevated antibodies but no thyroid disease. So, it's possible to have false positives. My doctor told me that when they are real high, such as twice the normal level or higher, then that's significant.Best Wishes
    Anonymous 42789 Replies Flag this Response
  • Hi Elke,Thanks for replying. I have Hashimoto thyroiditis and my tpo antibodies were in the 380s but from I have read they'r ussually like a 1000 or higher.But Ihave gone to neurologist and psychiatrist and endos. My migraines are horrible and I get Auras alot. Sometimes full blown on both eyes and most of the time just very photosensitive and blurry vision. I get anxiety around the two weeks of my period. I have had tinnitus for two years constant never stops. I get that muscle jerking thing everyday (myoclonus). I've had rls for weeks and then it gets better. My short term memory is forgetful. I take synthroid 50mcg. The neuro did an mri and diagnosed me with clasic migraines. The normal limit when I was diagnosed was 0-34. I know that a few people in my thyroid group feel the same way. So I thought maybe there was a milder form of HE that doesn't cause seizures. I found your posts. What do you think?
    Finally 3 Replies Flag this Response
  • my daughter was diagnoised 2 yrs ago and her levels were above 3000 they were off the scale and unreadable she has been in 4 comas now but on the positive she has been in remission for just over a yr
    Anonymous 42789 Replies Flag this Response
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