positive thyroid antibody test: So I've had a... - Thyroid UK

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positive thyroid antibody test

andie25 profile image
27 Replies

So I've had a positive antibody test (don't know which one )and now I've read on my nhs app that I've been discharged ..can anyone help me

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andie25 profile image
andie25
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27 Replies
SeasideSusie profile image
SeasideSusieRemembering

andie25

Contact your surgery and ascertain which antibody test it was and get the result plus reference range, this is essential to know and means the difference between a diagnosis of overactive thyroid (Graves disease) or Hashimoto's (underactive/hypothyroid with periods of false hyper). You need to know so that you know you are getting the correct medication.

The different types of antibody tests are:

For Graves disease:

TSI - Thyroid Stimulating Smmunoglobulin

TRAb - TSH Receptor antibodies

Hashimoto's:

TPO - Thyroid Peroxidase antibodies

Tg - Thyroglobulin antibodies

PurpleNails profile image
PurpleNailsAdministrator

Who has discharged you?

Sometimes endocrinology specialists do not monitor patients long term & you may have been discharged for GP monitoring.

Are you still taking carbimazole? Your last results were showing hypothyroid.

You shouldn’t have been discharged without a discussing with you & your agreement on how to monitor / what plans going forward.

TSI or Trab confirms Graves - TPO & TG antibodies confirm autoimmune condition but not Graves. You must obtain results to see which antibodies were tested.

andie25 profile image
andie25

Just phoned the doctors and they have received a letter today stating that I'm discharged from the gp and to let the hospital deal with it so I've got to wait for the endocrine unit to contact me ...the doctors haven't received a copy of my results so still in the dark

PurpleNails profile image
PurpleNailsAdministrator in reply to andie25

From the sound of it GP doesn’t want to get involved with anything specialist might be expected to manage.

Your GP shouldn’t be refusing to treat you or potentially de-registering / discharging you. Is that what are saying? You’re still a patient with them.

GPs have a tendency to pass everything on to specialist -even when it’s not thyroid related- it eases their case load.

Likely endocrinology have accepted GP referral so they have taken that as being able to pass everything to specialist.

Can you contact endocrinology and ask what the plan is.

Are you currently taking carbimazole? Having regular thyroid function checks eg 6 weekly?

How are your levels.

andie25 profile image
andie25 in reply to PurpleNails

Sorry I didn't make my last reply very clear ...the hospital have told the doctors to discharge me for the thyroid issue not permanently...I havent taken any medication since the end of march and had my last blood test 2 wks ago which is when they did the antibody test .. I was in the endocrine unit today having a plasma blood test done and the nurse asked me if I had a appointment with the consultant as my antibody test was positive but she didn't say which one

PurpleNails profile image
PurpleNailsAdministrator in reply to andie25

Once you have copy of results come back and post them - we can explain more.

andie25 profile image
andie25 in reply to PurpleNails

Thank you 😊

Wua13262348 profile image
Wua13262348 in reply to PurpleNails

Your reply to andie25 is my situation exactly, so although andie25 doesn't feel this applies to him, you have clearly described what happened to me.Luckily, Tattiebogle gave very good advice on this.

I appreciated your reply, as confirmation that a g.p. would actually do this!

PurpleNails profile image
PurpleNailsAdministrator in reply to Wua13262348

That’s my experience. Unfortunately I also find that specialist automatically say “ that’s unrelated - see your GP” (Even when they symptom has a known classic connection).

This happened to me on 3 separate symptoms, (eyes issues, palpitations & toe numbness)

GPs routinely told me to mention issue at next appointment (months away) or even in what could be serious eg I had tachycardia when they did do a ECG - they just said please contact the specialist yourself…. I of course rang around and left messaged when they did get back to me they said they would send blood test form. I had to book appointment at hospital blood testing because practice couldn’t get a sample. The thyroid function result were in range therefore not their remit. Months past to get to this stage - it’s not helpful when your passed between departments.

andie25 profile image
andie25 in reply to PurpleNails

Hi so I've eventually after 7 months heard off the hospital and received a letter today with my results from last July!!!! So I was positive for thyroid peroxidase antibody and positive for tsh receptor antibody ...free t4 was 25 free t3 was 11.7 and tsh was 0.01 ....ive had blood tests done two wks ago and they have come back normal but consultant has sent another blood form to have bloods done again for the 10th March before my next appointment

PurpleNails profile image
PurpleNailsAdministrator in reply to andie25

what treatment are you taking?

Positive TRab confirms Graves’ disease, the hyper is not expected to be transient. Usually treated with carbimazole for 18months plus - this should be managed by Hospital endo specialist.

What has gone on since letter ?

andie25 profile image
andie25 in reply to PurpleNails

I havent been on carbimazole since June 2022 ...with my last results on the 8th Feb being normal I'm gathering he won't put me back on carbimazole...more blood tests on the 10th march and tsh receptors to be tested again

pennyannie profile image
pennyannie in reply to andie25

If this is Graves Disease and Trab are positive the most recent research is suggesting the longer the patient stays on the AT drug ( Carbimazole or PTU ) the better the outcome for the patient :-

pubmed.ncbi.nlm.nih.gov/338...

andie25 profile image
andie25 in reply to pennyannie

I was only on the carbimazole for about 2 wks and it took my t4 level from normal 22 to 10 so then they said that was a abnormal result

pennyannie profile image
pennyannie in reply to andie25

Well if your T4 was normal = what was your T3 reading ?

I'll need to look back at previous posts as this doesn't seem to make much sense ?

Unless a mistake ?

andie25 profile image
andie25 in reply to pennyannie

March 2022 t3 10.2 ..t4 22.. tsh 0.01

May 2022 t4 10 ..tsh 1.37 ...t3 not tested

July 2022 t4 24 ...t3 11.7 ..tsh 0.01

Feb 2023 ...dont have levels just what the consultant has wrote in the letter saying normal result and that the July 2022 test showed positive thyroid peroxidase antibody and positive tsh receptor antibody

pennyannie profile image
pennyannie in reply to andie25

So the AT drug blocks your own new thyroid hormones and guess responsible for the dramatic drop in T4 down from 22 in March to 10 in May and then without the AT drug in your system you T4 has increased back up to 24 in July :

So it would seem you had positive antibodies for both Hashimoto's and Graves which are both auto immune diseases and generally speaking Graves treatment takes precedence as Graves is seen as life threatening if not treated with AT drug.

andie25 profile image
andie25 in reply to pennyannie

So if my levels are normal now does that mean I don't have Graves or Hashimotos anymore 🤔

pennyannie profile image
pennyannie in reply to andie25

Well these are both auto immune diseases and something has triggered your immune system to turn and attack your body rather than defend it - which is what the immune system is there for :

Quite why and what has triggered and upset your immune system is turn on itself and attack, rather than defend your body the 64 billion $ question.

Graves can wax and wane throughout one's life as can Hashimoto's but Hashimoto's dies with the gland whereas with Graves you have this AI condition for life as currently there is no cure.

Graves generally only gets diagnosed when the immune system ends up attacking the thyroid and or the eyes because then it's serious as the thyroid is a major gland, the body's engine. With Graves the T3 and T4 keep rising higher and higher causing total havoc within the body and it's alarming, scary and life threatening if not medicated with an AT drug to block the T3 and T4 levels rising any higher - frequently we see T4 readings up in the 80's nd 90's.

With Hashimoto's and antibodies just attack the thyroid and eyes and the T3 and T4 do not rise as high as with Graves and drop back down into range by themselves and this AI disease systematically destroys and disables the thyroid gland over a period of time and the patient becomes hypothyroid and requires T4 - Levothyroxine - thyroid hormone replacement.

For Graves you might like to dip into - elaine-moore.com

For Hashimoto's you might like to dip into - thyroidpharmacist.com

andie25 profile image
andie25 in reply to pennyannie

Thank you ...im thinking it was from having covid maybe 🤔

pennyannie profile image
pennyannie in reply to andie25

Could be - are there any people within your family - possibly a generation away from you with any thyroid health issues ?:

There's likely a genetic predisposition to Graves with stress and anxiety being a possible ' drivers ' -

with Hashimoto's I think food intolerances play a greater part and many feel better for removing gluten, dairy, wheat from their diet and healing gut issues to reduce inflammation and their immune system response to certain foods.

I hope I've replied to all your questions - as when alerted - I'm not taken to exactly your last question so hope I've covered everything asked.

andie25 profile image
andie25 in reply to pennyannie

I've had ibs for 19 yrs so have loads of food intolerences and nobody in my family has any thyroid issues

pennyannie profile image
pennyannie in reply to andie25

OK then - so you maybe onto something there with your years dealing with IBS - have you been tested for anything over these years ?

As for family - what about your extended family and a generation away from you - aunts, uncles - just another thought.

andie25 profile image
andie25 in reply to pennyannie

No never been tested for anything was just told to see what foods bother me and then just avoid them and then yrs later told to do the fodmap diet ....thinking about it I'm sure my mum told me her sister has thyroid problems ...underactive I think 🤔

pennyannie profile image
pennyannie in reply to pennyannie

Reads more like a ' blip ' as you were only on the AT drug for 2 weeks last year :

I'm a bit confused and thinking on :

andie25 profile image
andie25 in reply to pennyannie

I'm confused too 😕 ...he's sent me another blood test form with what he wants testing and put on there .."Graves ? Relapse"

pennyannie profile image
pennyannie in reply to andie25

Ditto - ??

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