Antibodies and Endo's treatment in UK - Thyroid UK

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Antibodies and Endo's treatment in UK

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For those of you who've been referred to an Endo' in the UK and know you have raised antibodies, please could you let me know what your Endo' has said, and have they changed your treatment or scanned your thyroid? I know nearly all hypothyroidism is due to these and most of us have Hashimoto's but it seems to me that the autoimmune disease side of things are just ignored, in the NHS at least, and few people (like me) only have an annual blood test and rarely see the GP and never get referred to a consultant (unless it Graves disease)

Mine are going up (although I've recently started taking selenium, D3 and going gluten free as advised by the knowledgeable posters on here, in an effort to reduce them)

Has your Endo acknowledged that having these raised antibodies can in itself make you feel ill?

I'm trying to decide whether to present my Medichecks report to my GP and ask for a referral and/or scan, but thinking it's probably a waste of time and effort if there's nothing that can be done/changed.

Thanks again for everyones help, this site is so valuable, for moral support and practical advice

10 Replies
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Unfortunately that's endocrinology standard in UK. Bad and backward.

Most European countries, USA, Australia, Japan acknowledge and test for Hashi and also use LDN to lower Hashi antibodies.

A lot of people see endo and even immunologist on regular basis there.

SlowDragon
SlowDragonAdministrator

Currently NHS medics seem to completely ignore autoimmune aspect, which is completely ridiculous

Because of this NHS rarely tests for antibodies, and it is even rarer to have repeat antibodies testing.

Yet if you do get antibodies regularly tested privately, then it can clearly show antibodies falling after adopting strictly gluten free diet and/or dairy free diet.

If you put all these test results on spreadsheet, it makes it easy to see downward trend over time.

Both my GP and endo found my spreadsheet showing this a real eye opener.

My GP now tests for antibodies and advises other Hashimoto's patients to change to strictly gluten free diet.

Hidden
Hidden in reply to SlowDragon

Thanks Slowdragon, I'm using Medichecks for tests and they put them on a graph so I'll have that as evidence. Did your Endo bother to scan your thyroid when they saw evidence of high antibodies? If you have Hashi's did you have to ask for a referral as I know the normal protocol is just a GP appointment if you're lucky and annual blood test and no contact whatsoever if TSH is in range!

SlowDragon
SlowDragonAdministrator in reply to Hidden

If you read my profile I was extremely ill when first diagnosed and started on Levothyroxine. Bedbound / wheelchair.

I did have scan of thyroid, plus many many other tests. MRI for possible brain tumour, tested for MS, Addison's, pheochromocytoma, etc etc

Only realised importance of vitamins and gluten through this forum.

Yes not all my tests were Medichecks. Plus I don't think you can print out the graph.

trelemorele
trelemorele in reply to Hidden

I've got Hashi.

I asked for antibodies- was refused. After few attempts, GP finally agreed. That was 10 years ago.

At the same time asked for thyroid scan both GP and Endos and was refused, told you don't need it.

I've done scan privately in the end to make sure.

Had to beg for endo app.

Nowadays, last three years constantly refused.

I’d say the antibodies only confirmed that I had Graves Disease. They were never looked at, tested or referred to again.

Hi I took my medichecks thyroid test to my GP my thyroid function is normal my Peroxidase antibodies were 5.1 IU/mL but my Thyroglobulin antibodies were 435.0 IU/mL my GP did nothing so I went and got a private Thyroid u/s scan as thyroid disease runs in my family, the report said - Diffuse changes seen in the thyroid gland suggestive of gross thyroid disease in particular Hashimoto's thyroiditis with lymphocytic infiltration - clinical / biochemical correlation is suggested. I took this report back to my GP I got my referral to see an endo, endo said I haven't got Hashimoto's and wrote back to GP saying I'm clearly postmenopausal give me a trial of hormone replacement therapy. I was diagnosed with CFS/ME in 2015 I have been having B12 injections for 8 years Intrinsic factor negative and my vitamin D keeps dropping and need to supplement this also. So pissed off with getting no help. I'm making a complaint to NHS see what they have to say.

SlowDragon
SlowDragonAdministrator in reply to Cabernet

Suggest you email Thyroid UK for list of recommended thyroid specialists.

please email Dionne at

tukadmin@thyroiduk.org

Hidden
Hidden in reply to Cabernet

Cabernet I’m so sorry you’re having to deal with this without the support of your GP, and thanks for sharing your experiences. This is exactly why this forum is helpful. How on earth can the Endo’ dispute a scan report!!!?? Unbelievable!

You say your thyroid function is “normal “ the scan proves it’s not, your blood TSH may be within the NHS range but leading Endos say this range is too high. There’s links on the website for the report stating medication should be given sooner rather than later to lessen the thyroid damage once antibodies are indentifed

Sadly I’ve lost most of my hearing due to NHS negligence- they refused to operate but as soon as I had private cover from my ex husbands work I was in the operating theatre straight away- 4 ops later my ears are healthy but I can only hear with aids. Had my hearing loss been investigated 25 years earlier the destruction of my hearing bones could have been stopped and more of my hearing saved. So those that criticise us for sometimes ignoring GPs and taking responsibility for our own health obviously haven’t yet been let down!

Hi know exactly what you mean I always ignore my GP they left me deficient in b12 for a year said it was depression, they only checked my full blood count for B12 deficiency and it doesn't always show up in an FBC. I lost my job. Sorry you had to go through all that with your ears. I will take a look at the link, I am Gluten free now and dairy will be next if there's no change.

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