Hashimotos?: I am currently mostly bedbound. Can... - Thyroid UK

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Hashimotos?

Seal33 profile image
17 Replies

I am currently mostly bedbound. Can I ask if these autoimmune results are a diagnosis of Hashimotos?

TGB-ab 330 High

TPOA 9. 6 Normal

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Seal33 profile image
Seal33
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17 Replies
NWA6 profile image
NWA6

TpoAb is usual the one for Hashimotos. But positive/high TGab result means something going on with the thyroid. But try not to get hung up on them. What’s your full thyroid results. TSH, FT4/3?

Seal33 profile image
Seal33 in reply to NWA6

Thanks. TSH 3.39 Free T3 4.9 I'm not caught up on it, I just want to know if that technically constitutes a Hashi diagnosis and if not what is going on with it?

SlowDragon profile image
SlowDragonAdministrator in reply to Seal33

High TPO or high TG antibodies confirms autoimmune thyroid disease

healthline.com/health/antit...

If in U.K. NHS won’t classify as autoimmune with only high TG antibodies

How much levothyroxine are you currently taking

What are your most recent Ft4 and Ft3

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Essential to regularly retest vitamin D, folate, ferritin and B12 as well

What vitamin supplements are you currently taking

NWA6 profile image
NWA6 in reply to Seal33

So technical, no, not Hashimotos with a low Tpoab but most of us patients know that with your high TSH and TGab results, somethings going on. Unfortunately the NHS don’t recognise Hashi’s without a tpoab result but we all know it’s something Thyriod. What’s the range n your FT3 result and what’s your FT4 result? Are you on medication?

tattybogle profile image
tattybogle

opinions differ ....

" ..a positive (TGab)antibody is not diagnostic of Hashimoto's thyroiditis because Tg antibodies are found in numerous other conditions. They are present in approximately 50% of Graves' disease cases, 20% of non-toxic goiter and thyroid cancer cases, and also in normal individuals, especially older females. Tg antibodies are also found in non-thyroid autoimmune diseases, such as Sjögren's syndrome, myasthenia gravis, celiac disease, and type 1 diabetes [9], a finding suggesting that thyroid autoimmunity is more prevalent than actual Hashimoto's thyroiditis. The titer of Tg antibodies does not usually correlate with the degree of thyroid dysfunction."

sciencedirect.com/topics/ne...

it get's complicated , it is said TGab are found in other autoimmune diseases not just autoimmune thyroid disease , but ..... while TSH is still in range like yours is , then autoimmune hypothyroidism isn't acknowledged to be there ...... even though the thyroid may already be being damaged by it .

NHS wouldn't consider Raised TGab to be diagnostic of autoimmune hypothyroidism , unless they also found raised TPOab.

Even then, they only consider raised TPOab to indicate an increased PROBABILITY that the person will EVENTUALLY go on to become hypothyroid . (with over range TSH and under range fT4)

They don't consider raised TPOab / or raised TGab to be a 'diagnosis' of anything .. unless you actually become hypothyroid .. and then they are just tested to just confirm 'autoimmunity' as the cause of the hypothyroidism.

But ... Given that the usual level for TSH in healthy people is closer to 1 (in most people) ... then most of us on here would think that your high TGab result, coupled with your (relatively) high TSH result DOES probably indicate an autoimmune thyroid problem is developing.

* edit .i wrote this assuming you don't have any thyroid diagnosis/hormone treatment yet. Sorry, should have checked first.

Animal-lover2 profile image
Animal-lover2 in reply to tattybogle

What a fantastic reply 👌

Seal33 profile image
Seal33 in reply to tattybogle

Thank you. Not on any treatment. Have had a TSH of 7 and 11 in the past and nothing gets done. Things become particularly bad 2 weeks of the month leading up to monthly cycle. These were my medicheck results in 2017 and haven't been back since to GP because I can't seem to get any help from an NHS doctor when I sent them across. I thought I had at least found a blood result which could be irrefutable and they couldn't brush me off. Obviously not. Was trying to get some sort of blood result which would explain my poor health.

tattybogle profile image
tattybogle in reply to Seal33

When were these results from " TSH 3.39 Free T3 4.9 " ?

When was TSH 7 ? .... and 11?

Seal33 profile image
Seal33 in reply to tattybogle

2017 TSH 3.39 then a few years earlier with a gap between each TSH 7 and TSH 11. Is there any blood test I could take that could be irrefutable so I have something to take to a GP? I was alway quite thin and could eat as much as I wanted and they called me anorexic (I wasn't). Now I am slightly overweight and can't shift the weight no matter what and no matter minimising calories. They will label me an overeater. (I was an over eater when I was thin). The cognitive issues are the worst and feeling like my head is going to explode.

tattybogle profile image
tattybogle in reply to Seal33

unless TSH went back into range between the 7 and 11 , you should have been offered Levothyroxine at that point.

(NHS guidelines say 'two (over-range , but under 10) TSH results, taken 3 months apart , plus symptoms of hypothyroidism' ....

constitutes a diagnosis of 'sub clinical hypothyroidism '.

and they 'may consider offering a trial of Levo to see if getting TSH back into range improves symptoms' )

definitely something going on for you to have got TSH 7 and 11 in the past...

with history of TSH 7 and 11 and raised TGab , and if not been tested since 2017 you should definitely get GP to retest thyroid bloods now .

TSH is highest early a.m .. so don't get a blood test 1/3pm TSH is lowest then.

Seal33 profile image
Seal33 in reply to tattybogle

I was diagnosed with ME/CFS so I don't get the correct testing. It gets ignored. Things may have changed now with the new NICE guidelines.

tattybogle profile image
tattybogle in reply to Seal33

"I was diagnosed with ME/CFS so I don't get the correct testing.".....

depending on the timing of those events ..

you cant give a 'diagnosis' of CFS/ME to someone if they have TSH 7 (or 11) at the time .... 7/11 shows subclinical hypothyroidism (at least ... over 10 is actually diagnostic for hypothyroidism, see guidelines )

you can only give CFS/ME 'diagnosis' to someone with 'no other cause for the symptoms' ..... subclinical hypothyoidism is a potential cause for the symptoms.

tattybogle profile image
tattybogle in reply to Seal33

nice.org.uk/guidance/ng145/...

"1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

**Note ... this recommendation is not dependant on having over range TPOab

'sub clinical hypothyroidism' means having over range TSH but fT4 is still in range.

If TSH is over range AND fT4 is under range ,it is 'primary or overt hypothyroidism'

You need to have new thyroid blood tests done to see what TSH and fT4 levels are now .

You could get private ones done , but GP will need to do their own anyway .... 2017 is too long ago to be any use .

You have a history of over range TSH and high TGab so it's perfectly reasonable for them to check it again now if you have symptoms of hypothyroidism .

tattybogle profile image
tattybogle in reply to tattybogle

i'm a bit too tired to answer properly this evening, but will come back and have another look in the morning when i can see to type straight x

Seal33 profile image
Seal33 in reply to tattybogle

I really appreciate the advice and help. Struggling massively so am having to take time too. Thank you very much.

SlowDragon profile image
SlowDragonAdministrator in reply to Seal33

You need vitamin D, folate, ferritin and B12 tested too at least once year

ALWAYS test thyroid levels as early as possible in morning before eating or drinking anything other than water

This gives highest TSH

Request testing of oestrogen and progesterone too

SlowDragon profile image
SlowDragonAdministrator

Two thyroid test results where TSH is over 5 should get a trial of levothyroxine

See flow charts on here

gp-update.co.uk/Latest-Upda...

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