When is it Hashimotos?: I have positive TPOab... - Thyroid UK

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When is it Hashimotos?

L154C0 profile image
9 Replies

I have positive TPOab (356 in a range of 0-9.0). After a few months of having low TSH, it has now gone up to 11 (0.3-5.0) and my T4 is 7.9 (7.0-20) so the transient hyper phase has abated. I also have a Thy3 nodule showing inflammatory cells.

…and yet my endocrinologist is still refusing to class it as Hashimotos Thyroiditis. I am still unmedicated and yet have classic symptoms.

At what level does TPOab, and TSH have to rise for confirmation in your experience?

He has said that the anxiety of the nodule is causing all my symptoms and that it is not my thyroid causing it. I’m sick of it always being attributed to mental health when clearly my thyroid is struggling.

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L154C0
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9 Replies
tattybogle profile image
tattybogle

if they are being pedantic about terminology , then to be classed as hashimoto's disease there needs to be a goitre (enlarged thyroid gland)

NHS usually just refer to all types ( hashimoto's ( autoimmune with goitre ) / Ord's (autoimmune without goitre)as "Autoimmune Hypothyroidism"

so technically , if you don't have goitre (?) , it's not actually hashimoto's ...

tattybogle profile image
tattybogle in reply totattybogle

but for them to suggest 'anxiety about a nodule' is capable of causing an initially low TSh to then rise over 10, (and also magically create loads of TPOab )..... that is , er .... rubbish.

i very much doubt that being anxious could create TSH over 10 and TPOab of 300,... ask them to show you the evidence.

tattybogle profile image
tattybogle in reply totattybogle

oh sorry , iforgot you'd been taking carbimazole until recently , so TSH 10 might still be related to that , depending on dates .

L154C0 profile image
L154C0 in reply totattybogle

Yes, true. I took carbimazole for 2 weeks (on locum Gp’s advice 🤬) but the latest bloods were 4 weeks post stopping.

He also said T4 reflects what’s happening at that time of blood test but TSH reflects what’s was happening 2/3 weeks beforehand.

Confusing!

tattybogle profile image
tattybogle in reply toL154C0

yes , 4 wksa bit too soon to know what tsh is after stopping carb , for same reason we have to wait 6 wks after changing dose levo ,,, because TSH takes a while to settle .

he's correct , fT4 /3 results are looking at what's in blood today,,, but TSH result is more like a window into the recent past , ie what sort of T4/T3 levels your pituitary / hypothalamus have been experiencing for the past few wks/ mths

L154C0 profile image
L154C0 in reply totattybogle

I mean, anxiety doesn’t cause cold extremities, dry skin and a slow heart rate etc

It’s so infuriating. What makes it worse is that ENT are suggesting they don’t want to operate to remove nodule if tft are unstable but Endo is saying if it is Hashimotos (if!!) then it could be unstable for months/years.

greygoose profile image
greygoose

Lazy doctoring! If all your symptoms come from anxiety he doesn't have to do anything. If he diagnoses you with hypo/Hashi's then he has to actually do his job! Quelle horreur ! He needs reminding of a few things:

- anxiety is a hypo symptom so you'd probably have it even if you didn't have a nodule.

- that's what ranges are for: to make it easy for him to diagnose: if you're in range you don't have it (debatable but for the sake of argument) if you're over-range then you do have it! Imagine that! Sooooo simple.

- ranges are not there for him to manipulate for his own convenience: i.e. to be ignored when you can't be arsed to treat the patient!

Of course, the NHS in general is guilty of N° 3 when they say that TSH has to be over 10 on two consecutive blood tests to get a diagnosis. But, anyone that knows their NICE would be able to tell him that with high antibodies you can over-rule that - if you so wish. But, I expect he's a diabetes specialist with scant knowledge of thyroid, isn't he? So, he'd probably just plead ignorance - or out-right deny it's true!

I think the only hope for you is a new endo - or at least a second opinion!

TrainWreck59 profile image
TrainWreck59 in reply togreygoose

Oh my goodness, your last paragraph really hits home for me and what happened with my endo on Friday just gone! You could have been describing my circumstances to a tee!

L154C0 profile image
L154C0

Update: TSH rose from 10 to 20 (0.3-5.0) so, finally, a diagnosis of hypothyroidism from Hashimotos. Put on 50mcg levothyroxine.

However, endo has discharged me. Said GP can deal with this from now on. Despite a THY3 nodule still under investigation and the implications of that.

Yes… I think I need a new endo.

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