[CMoore124]

#1018240

I posted another post on something different but then I realized I had another question.

I was tested for GD several years ago and levels were very high. I have been on PTU for 4+ years and remained normal (although low side of normal – .7 – 1.0 range) I have only been 2 pills a day (100mg total) for about 2 years and recently went to one pill (50mg) for 8 weeks and now have been off the PTU for 4 days. My antibodies test came back negative. Does this mean I am currently free from GD? The Endo tested the antibodies to see how much he felt remission was possible for me. (Meaning if I showed higher antibodies – my chance of remission was less)

Thanks for any help
Christina

[Bobbi]

#1063467

Hi, Christina:

Antibody levels fluctuate for no well-understood reason. You might check out EllenB’s comments today about antibody levels and remissions. It sounded to me like having negative antibody titers is not unheard of. And, that having a negative antibody level doesn’t necessarily predict remission possibilities.

[Ellen_B]

#1063468

Hi Christina,
Just a comment about antibody tests and Graves’ disease. There are two antibody tests (TBII and TSI) specifically for Graves’. Only if you have Graves’ disease will they be positive. However, not everyone who has Graves’ disease will test positive for these antibodies. Only 85 to 90% of Graves’ patients will test positive for TBII and TSI antibodies—that means that as much as 15% could have Graves’ and none of these antibodies. Negative test results are more likely to occur if the hyperthyroidism is mild.
Did you have the antibody test done when you were first diagnosed? Does the antithyroid medication affect the immune system and antibody level? Too many questions without definite answers!
In any case I wish you the very best!

Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/

[Kimberly]

#1063469

Hello – I don’t know which tests you had run, but I did want to mention that the TSI (Thyroid Stimulating Immunoglobulin) test can cause some confusion. The TSI test is a measure of how much stimulation the thyroid gland is receiving from our immune system’s attack on our thyroids. A result above the “normal” range indicates that there is enough antibody activity going on to make us hypERthyroid. However, a result below the “normal” cutoff still indicates the presence of the antibodies that cause Graves’ – but *in theory*, the antibodies should not be causing enough stimulation to the thyroid gland to make us hypER.

So if you did get the TSI test run, you might ask your doc for a clarification of what your endo meant by “negative”. (Or even better, get a hard copy of your labs!)

Sounds like you had great success with the PTU, but keep in mind that you will want to be vigilant for hypER symptoms in the future and get tested ASAP if you think you might be relapsing.

Best of luck!

[CMoore124]

#1063470

This is the one antibody test I do have
THYROPEROXIDASE ANTIBODY – TPO AB was 28.9 (It was in the 4000 range when I was originally tested)

I dont have with me right now the name of the other one – but that is the one that came back negative.

Thanks for all the helpful info

PTU worked very well for me. I am being checked every 2 weeks to make sure we keep a very close eye on any changes. I never want it to get as bad as it was again and my Endo knows that. I have been off the meds for one week now. Weird thing is – 2 days after coming off meds – I got very bad sore throat, sinus issues (so Im assuming a virus since no strep throat) but weird thing is my mentrual cycle turned wacky. I suddenly have yet to have it (it was suppose to start 3 days after I stopped meds) and I have never been late except when pregnant. (and that is not a possibilty) So my body is obviously going through something. Thats why I asked in another post if it was possible to have withdrawl issues?

Christina

[Kimberly]

#1063471

Hello – I am not aware of any specific “withdrawal” issues related to Anti-Thyroid Drugs, but every patient’s journey is a little different. Light or absent periods are commonly associated with hypER…But since your doc just took you off the PTU, I would assume that is NOT the case for you. Still, I would suggest mention these symptoms to your doctor or pharmacist for their input.

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