Graves’ disease

[Capture1]

is it possible to have grave’s disease with negative TRAb but positive TPO?

[greygoose]

If your TRAB is negative, did they not test the TSI antibodies?

How was your Graves' diagnosed, then? And how long ago?

[Capture1 in reply to greygoose]

So what I can gather is that TSH, T4, T3, TRAb, and TPO have been tested I was told on Thursday that it is Graves’ disease causing my issues it was described to me in my appointment that normally TRAb is positive for graves but sometimes it does show negative with positive TPO?

[greygoose in reply to Capture1]

Sounds like a typical endo mish-mash of half understood facts.

TPO is usually high with Hashi's - although can sometimes be high with Graves' but is not the cause of the Graves'. Hashi's can swing between hypo and false hyper, and this confuses doctors enormously. They cannot seem to grasp the fact that you can have hyper thyroid hormone levels in the blood without having Graves'. Personally, I would insist on a TSI antibody test for Graves'. But it's very likely that you actually have Hashi's. In which case, carbi would be the wrong treatment and that's possibly why your levels aren't coming down fast enough to satisfy your endo. That's my conslusion, anyway, but I'm not a doctor.

[Capture1 in reply to greygoose]

I will ask for a TSI test on my next review

[Capture1 in reply to greygoose]

I’m new to all of this so still getting to grips with it all 🫣

[greygoose in reply to Capture1]

Yes, of course. It takes time. What irritates me is that doctors don't know any of this! It's supposed to be their job.

[helvella Administrator]

Years ago, Graves was talked about in terms of an unknown substance referred to as LATS - long-acting thyroid stimulator.

When it was eventually determined that there is an antibody that stimulates the TSH receptor, the name changed from the very general description (LATS) to the specific way it acted and what sort of substance it is (TSH Receptor Antibody or Thyroid Stimulating Immunoglobulin).

But this is what Graves is! Therefore it is impossible to have Graves without something acting as a LATS. And the only thing that is known to do that is TRab/TSI.

There are other causes of hyperthyroidism, of course. For example, an autonomous nodule, pumping out thyroid hormone without being under the control of TSH.

[Buddy195 Administrator]

Definitely push for TSI antibodies. I say this because I was initially misdiagnosed as Graves, largely in symptoms (including TED, which is more often associated with Graves) but thanks to members of this forum I pushed for correct antibodies. I found I’m actually hypothyroid with Hashimotos (despite having ‘hyper like’ symptoms such as palpitations, tremor, weight loss etc)

[HealthStarDust in reply to Buddy195]

Did you have a TSI blood test? I’m finding that mainly it’s the tranbs blood test that is carried out within the NHS at least.

[Capture1 in reply to HealthStarDust]

No I haven’t had a TSI test, but will request one on my next review.

[Buddy195 Administrator in reply to HealthStarDust]

I tested negative in private tests for TRab (TSH receptor antibodies) and TSI (Thyroid-Stimulating Immunoglobulin), but this was 6 months after my original Graves diagnosis. With hindsight, I wish I’d pushed for full antibodies to be tested earlier. Endo still adamant I initially had Graves, but over time this moved to Hashis….

[HealthStarDust in reply to Buddy195]

They don’t make it easy.