Initial hyper phase of Hashimotos: I haven’t... - Thyroid UK

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Initial hyper phase of Hashimotos

L154C0 profile image
9 Replies

I haven’t managed to get a TRab test to rule out Graves yet so am currently working on the basis that I’m still going through the initial hyper phase of Hashimotos. If that is the case, how long does this phase last generally or is that the proverbial piece of string question?

Is there anything one can do to not feel so wretched in this unmediated phase?

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L154C0 profile image
L154C0
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9 Replies
greygoose profile image
greygoose

A TRAB test is not going to rule out Graves' because it can be high with Hashi's. But looking at the levels in your last post I would have thought that Graves' has ruled itself out. Your FT3 is still in-range, your FT4 is only slightly over-range - it would be much higher with Graves' - and both Hashi's antibodies are high.

But if you really insist on a test to rule out Graves', what you want is TSI.

And you answered your own question: how long is a piece of string. I'm afraid one just has to grit one's teeth and sit it out.

FallingInReverse profile image
FallingInReverse

Hi greygoose I reference this image periodically from thyroid.ca

Now I’m uncertain about the tsab/tbab above and where tsi fits in. Even in the footnote in the visual it refers to two trabs.

Is there a list you know of that explains how those relate?

Just curious.

Antibodies
greygoose profile image
greygoose in reply toFallingInReverse

No, I'm sorry, I can't help you there. I think tattybogle is the person you neeed. :)

tattybogle profile image
tattybogle in reply toFallingInReverse

Thyroid Stimulating Hormone Receptor antibodies = T(SH)Rab usually written as TRab

of which there are 3 different kinds : most TRab tests measure all of them together, but can't tell you which sort you have (or have most of)

1. 'Stimulating' (TSab) cause highT4/T3 (by acting on the thyroid in the same way as TSH does)~ the test which measures ONLY the stimulating ones is called TSI (Thyroid Stimulating Immunglobulin)

2. 'Blocking ' (TBab) cause low T4/T3 ( by blocking any 'real' TSH from acting on the thyroid

3. 'Neutral'

So ......a positive TSI test confirms that high T4/ T3 is due to graves 'stimulating' antibodies (TSab /TSI)

but if you had someone with a low T4/T3/ high TSH and positive TRab result , it means that most of those TRab must be the blocking sort .. because if the stimulating sort were dominating they would be causing high T4/T3 levels.

when you only have a TRab result to look at , you have to deduce which sort of TRab have caused the positive TRab result by looking at the T4/T3 levels ..... if the patient has highT4/T3 , the TRab must be (mostly) the stimulating sort .. but if they have low T4/T3 the TRab must be (mostly) the blocking sort . This is an unusual form of hypo that has nothing to do with hashimoto's damaging to the thyroid .. this form of hypo can (theoretically) get better ,,,,, the thyroid itself is not damaged, so if/ when the blocking antibodies go away , then the real TSH can the get to the thyroid and act on it.

Unfortunately it's not usually possible to test for 'just' the blocking sort, outside of research settings.

but the majority of Graves patients , (but not all) will also have some TPOab . so it can all get a bit 'muddy'... you have to look at not just the antibody results , but also at what the T4/T3 / TSH are doing .. and most importantly , look at how the picture changes over several years .. some people who have positive TRab will go from 'mostly stimulating' to 'mostly blocking' and back again , often with periods of being euthyroid in between .

waffle waffle .. are you confused enough yet FIR ? :)

L154C0 profile image
L154C0 in reply totattybogle

well and truly confused @tattybogle! It was my endo who requested TRab test to rule out Graves. From what you’re saying, it still won’t. So, in your opinion, is an uptake scan the gold standard for diagnosing Graves? That and a TSI test.

tattybogle profile image
tattybogle in reply toL154C0

a positive TSI test with high T4/T3 and low TSH would prove graves . ie. the cause of the high T4/T3 levels was definitely the stimulating form of TRab antibodies , because TSI test only see those ones . (TSI= Thyroid Stimulating Immunoglobulin)

a positive TRab test with high T4/T3 and low TSH would also prove graves ie. the TRab test could be seeing either the stimulating or blocking sort of TRab ,,, but if the TRab were the blocking sort , then the T4/T3 would be low not high .. so.... if T4/T3 are high the TRab's the test has seen MUST be mostly stimulating ones.... so therefore it's graves. a

a positive TRab test with hypothyroidism ( very low T4/T3 / very high TSH) proves the TRab the test found MUST be the blocking sort... because if they were the stimulating sort they would have caused high T4/T3 ( this is a much less common form of hypothyroidism . sometimes called 'graves hypothyroidism' but it doesn't have a name everyone agrees on)

when it get much more tricky is when the T4/T3 / TSH are NOT particularly high or low but are wandering around , or borderline..... in this scenario, even if you do get a positive TRab result it's not immediately obvious what sort of TRab the test has found. but observing what the T4/ T3 /TSh levels are doing over a long time could help understand what is going on.

So if you want a test that gives certainty for "do i have stimulating antibodies ? " ... you could ask endo if their lab can do a TSI test ,, these are definitely available at some labs .

But if you want a test that gives certainty about "do i have blocking antibodies ?", it's more or less impossible .

I don't know much about different forms of thyroid scan cos i've never ( knowingly !) been hyperthyroid .... tagging PurpleNails she knows more about scans than i do .

(i really should have read your 'previous' before i started writing that , so i knew why you were asking ,, sorry ...i'll read it now .lol )

tattybogle profile image
tattybogle in reply totattybogle

looking back

3 months ago:

TSH 3.8 ( no T4 done).

2 mths later :

TSH: 0.1 (0.3 - 5)

T4: 15.7 (7 - 20)

Ferritin: 130 (15 - 20) interestingly, results from 2 months ago showed ferritin at 57.

symptoms still there including hoarse voice, hair dropping etc/ A&E vist , tachycardia/. According to the scales in A&E I’ve lost 6lbs in 4 weeks without trying, lost appetite.

prescribed beta blockers ,,, helping with palpitations / tremor

2 wks later (medichecks):

TSH 0.05 [0.27 -4.2]

fT4 25 [12-22]

fT3 5.8 [3.1- 6.8] TPOab 250 [<34]

high cortisol.

then endo letter : healthunlocked.com/thyroidu... ~ asks GP to retest in 2mths to see pattern.

So .... apart from beta blockers which you have already , there is not much to do but wait for next test unfortunately..... regardless of whether this is early /mild graves that is potentially worsening and might end up properly hyper ... or just early hashimotos that is wobbling around a bit and will eventually go hypo at some point later on , it doesn't actually make any difference in practical terms at this point...... even if they did a TSI test today and it was positive , they (presumably) won't risk giving you antithyroid drugs unless T4/ T3 are shown to be consistently over range ... (because they risk potentially serious side effects on liver) and you obviously don't need any levo at this point .... so what happens next will depend on the results of the next test .

The only tools they have to fix thyroid problems ( whatever the cause is) are antithyroid drugs , levo , beta blockers , or remove / destroy thyroid ..... or wait and see ... that's the lot.

when you get next test in ? about a month .... it should hopefully be clearer what is happening .

Sorry ,,, thats not a lot of help i know .

tattybogle profile image
tattybogle in reply totattybogle

oh ,,,, only just seen latest post, not read it yet :)

Angel_of_the_North profile image
Angel_of_the_North

I'm not sure whether any TRab tests we can get here differentiate between the two types of Thyroglobulin/TSH receptor antibodies:thyroid stimulating antibodies and thyroid blocking antibodies. TSI (thyroid-stimulating immunoglobulin) is for the stimulating ones, so for hyper Graves

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