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marney88 profile image
7 Replies

Hi

Was diagnosed with overactive thyroid and Graves in March. Have been on carbimazole 30 mg being adjusted accordingly. Now own to 15mg. Saw endorsed on 18/09, had bloods done. Just got results and not entirely sure what is happening to me !!! Please help me decipher 🤔

TSH 7.37mU/L

T4 8.9pmol/L

Thyroid peroxidase antibody 132.2lu/ml

Received letter last night with these results, had phoned GP on 19/09 told satisfactory !!!!!

So annoying as am desperate to keep on top of feeling like crap. Letter says to stop taking carbimazole, why did GP not state this ? I knew I was feeling worse then normal had also put 3kg on in a very short period. Please help me make sense of my bloods as struggling to understand.

Many thanx

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marney88
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7 Replies
Frances0008 profile image
Frances0008

Slipping into hypothyroidism? Looks like it. Tsh is subclinical hypo (or would be if you weren’t already taking meds that mess with it), but then t4 level is extremely low, which is obvious even without ranges. I’m not an expert on graves or it’s medication, but I’d definitely expect you to be experiencing symptoms of hypothyroidism with that t4 level.

SeasideSusie profile image
SeasideSusieRemembering

Marney88

Was your Graves confirmed by testing TSI/TRAbs antibodies?

We have had many posts like yours recently and members have had a diagnosis of Graves and prescribed Carbimazole when in fact they have Hashimoto's (underactive, where antibodies fluctuate and cause fluctuations in test results/symptoms) but they have been going through a Hashi's "hyper" swing.

Have you had Thyroid Peroxidase (TPO) an0pd Thyroglobulin (TG) antibodies tested?

If not I would ask for all 4 antibodies to be tested

TPO

TG

TSI

TRabs

to find out exactly what you have.

Marz profile image
Marz in reply toSeasideSusie

Anti- TPO result above 😊

marney88 profile image
marney88

Hi Susie,

Thanx, I am going to have bloods done Monday . Will post results when I get them. At the moment my FT4 is 8.9pmol/L. When I last had my TPO done is when I was really ill, my thyroid was at 198, still not sure what it meant just know I was scared and told to go straight to the hospital. Endo says I have positive antibodies for Graves, find this all so draining on body and mind !

Again thanx for any feedback

Karen x

SeasideSusie profile image
SeasideSusieRemembering in reply tomarney88

my thyroid was at 198

Which result was that? TSH, TPO antibodies???

Endo says I have positive antibodies for Graves

Ask which antibodies were tested. For Graves it's TSI and/or TRab

SeasideSusie profile image
SeasideSusieRemembering

marney88 - I've moved this reply as I replied to the wrong person :)

Marz has pointed out that I didn't notice your TPO antibodies listed in your opening post (thanks Marz :) ). Your raised level suggests Hashimoto's.

I think you have possibly been misdiagnosed with Graves during a Hashi's hyper swing and that you shouldn't be on Carbimazole.

You are definitely in a hypo phase at the moment.

I would ask for confirmation of the Graves diagnosis by testing TSI/TRab antibodies.

Can you post your results when diagnosed with Graves.

Can you please include reference ranges so that we can interpret your results properly. I am assuming your current FT4 is below range.

Valarian profile image
Valarian

Do you have the ranges for the tests ? (Typically in brackets after the result).

It looks as though you were over-medicated with the carbi, which means your results are in the hypo range. I’m a little surprised they stopped the Carbimazole altogether, might have expected them to cut it to eg 5mg/day first, as you’ve only been on it for six months so far, and usual thinking is that a treatment cycle of 12-18 months gives the best chance of achieving remission. If this isn’t Graves’, you may not have needed Carbimazole at all, or at least, only for a short, carefully monitored period.

How long was it since the previous test ? Have you ever had TRAb or TSI tested (antibodies indicating Graves’).

Your endo may feel that having brought your thyroid levels right down is ‘satisfactory’ as regards treatment of Graves’ , and reported this to the GP. He may not have been particularly concerned that your thyroid levels were low, expecting to bring them into range quickly by reducing your medication. It’s quite difficult to get the dose of antithyroids right, especially as those pesky antibodies may have their own ideas on the subject, and it isn’t uncommon to overshoot and end up below range.

However, after months of being hyper, being hypo is a bit of a shock.

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