Clarification please on Graves/ Hashis antibodies?

[TaraJR]

I was hypER in 1987. I had Carbimazole and PTU, but T4 went high and TSH low again when I stopped the tablets.

I then had RAI in 1989, and have been hypO ever since.

I assumed I originally had Graves, but there aren't any antibody results from those years in any of my complete medical records. One endo report said "her antibodies, in particular her thyroid microsomal antibodies, are strongly positive. Interestingly her thyroid tests, despite her clinical state suggestive of thyrotoxicosis, have now settled and are normal. Her FT4 was 24, with a TSH of 0.7. I find it difficult to believe that this is Hashitoxicosis - ie Hashimotos, which would normally lead to hypothyroidism, but with an early thyrotoxic phase - simply from the time course. I suspect her thyroid function tests are now normal because of delayed effect from Carbimazole."

I find that confusing, as if the endo didn't know either, and I'd love to know for certain how it started.

I've never had TSI or TRAb tests done, ever.

My antibody results in 2018 and 2019 have been:

TPO 58 54 43 (0-34)

TGAb 55 88 (0-115)

I can get a private TSH Receptor Stimulating Antibodies blood test done - is this the definitive test for Graves? I assume that is the TRAb test? Would I still have Graves antibodies if that is what I started with? I am, and have always been very heat intolerant.

Advice welcome please! Thanks.

[greygoose]

If you had Grave's, you would still have the antibodies, I believe. But I'm not sure that either is the definitive test.

I very much doubt if your endo did know much about your condition. I know it's hard to believe but the majority of endos know very little about thyroid. For example, this: Her FT4 was 24, with a TSH of 0.7. I find it difficult to believe that this is Hashitoxicosis - ie Hashimotos

It's difficult to say much about the FT4 because there's no range. But, a result of 24 wouldn't be very high on any range I've seen. Were they the results when you were diagnosed? Or after taking carbi? Even the TSH isn't low enough to be Grave's. It looks much more like Hashi's to me - and he even says that your Hashi's antibodies were 'strongly positive'. So, why couldn't he believe it? And, if he didn't believe it, why didn't he test the Grave's antibodies? I shall never understand how an endo's mind works.

[TaraJR in reply to greygoose]

Thank you greygoose . I'm going through 450 pages of records, and they're not all in the right order!

I've now found a test relating to that endo letter:

T4 was 24 (10-25) TSH was 0.07 (0.15-3.2) T3 was 1.5 (1.1-2.8) I was on my second round of Carbimazole at that point.

On diagnosis a year earlier, results say:

Thyroxine: 141 (60-140) Free T4 Index: 199 (60-140) Free T3: 11.7 (3.9) TSH: <0.1 (0.5-7)

So I wonder if I originally had Hashi's but started out being overactive, as I know that can happen. Hence I'd like to get the appropriate antibodies test done to find out.

Interesting to see many results over many years showing T4 near top of the range, and T3 near the bottom, and often my symptoms said 'lassitude'. I finally became very ill in 2014, but got my life back bigtime when I started T3 in 2016. And endo letters since 1990 saying they didn't know why I felt fatigued... ...

[greygoose in reply to TaraJR]

OK, so on diagnosis, they didn't do the right FT4 tests. I've never heard of FT4 index, but the range says it's not the same as FT4. And, your thyroxine was only 1 point over-range. Those results are saying Hashi's, not Grave's. The FT3 is not high enough for Grave's. But it's the right level for a Hashi's 'hyper' swing - which isn't true hyperthyroidism, because the gland is not over-active, it's just the dying cells releasing their store of hormone into the blood. So, if they didn't do antibodies testing, they should not have been treating you with carbi.

If your FT3 was always at the bottom of the range, that would have accounted for your 'lassitude'. It's low T3 that causes symptoms.

[TaraJR in reply to greygoose]

greygoose many thanks. Since reading my records I have a feeling you may be right. Scary. But I then had RAI ! I think I'll get a TRAb test done and see if it sheds any more light on things.

[greygoose in reply to TaraJR]

It is scary to think that our doctors are that ignorant! There's really no excuse for them. The tests are there to be used, and for things like TSH, the tests are king! But, if there's any chance the tests might prove them wrong, then that's another story!

[TaraJR in reply to greygoose]

All this happened 30 years ago, so I could be kind and make allowances. But I'm not sure things are much different now to be honest

[greygoose in reply to TaraJR]

From what we read on here every day, things are getting worse rather than better.