More advice please!: Hi all, further to my post... - Thyroid UK

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More advice please!

Koababy20 profile image
12 Replies

Hi all, further to my post on 30th January…

I have received a report back on an ultrasound scan of my thyroid which was done 10 days ago……..although the doctor had told me I had a small thyroid, he has made no mention of it in his report. It leaves me wondering why my high Peroxidase antibodies 73 in a range of <34) do not seem to have damaged my gland in any way and WHY I have ongoing choking sensation in my neck with occasional difficulty swallowing??

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Koababy20 profile image
Koababy20
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12 Replies
SlowDragon profile image
SlowDragonAdministrator

Well high thyroid antibodies confirms autoimmune thyroid disease

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

the doctor had told me I had a small thyroid, he has made no mention of it in his report.

Pity he didn’t write it down

Ord’s disease results in shrunken and shrivelled thyroid

Both are autoimmune and generally called Hashimoto’s.

Koababy20 profile image
Koababy20 in reply toSlowDragon

SlowDragon, thanks for your kind reply, ..yes I wish he had written it down, although I am convinced my thyroid is under attack with these symptoms!

SlowDragon profile image
SlowDragonAdministrator in reply toKoababy20

Yes obviously

Ord’s results in solid, sometimes painful thyroid

happysundaygirl profile image
happysundaygirl

Perhaps you could call his secretary (the hospital reception should have this info) and ask her if she could explain or have him add it to his report?

Koababy20 profile image
Koababy20 in reply tohappysundaygirl

Thank you so much for your advice! I’ll certainly do that!

Miffie profile image
Miffie

I appreciate how disappointing it is when what we are told at time of thyroid scan is more than given in the report. I was sent by a GP who thought I had swelling over my thyroud gland area. The scan revealed swelling was due to arthritis and my thyroid was quote “smallest I have ever seen”. The report said it was shrunken as consistent with long term hypothyroidism. The GP said she was pleased it wasn’t a swollen thyroid. I have subsequently moved home and GP surgery. I must have seen at least 20 GPs since I had that scan and not one has ever looked at the scan or been in any way interested . I didn’t need them to as it made no difference to treatment. I suspect you will find the same lack of interest unless you are extremely lucky.

I wish you the best of luck getting the report to reflect your conversation. You may be fortunate and find it somehow increases the level of care you receive from your GP.

Koababy20 profile image
Koababy20 in reply toMiffie

Thank you so much for your very informative reply! I really appreciate it….yes there is an overall lack of interest /apathy in general in the medical profession in thyroid . It is THE most important gland in the body and as we all know causes major illness , not helped by under trained medics . I certainly share your frustrations! I certainly don’t believe my thyroid to be in great shape as stated in this report, since it is undoubtedly at the mercy of my autoimmune system as is your own!

TSH110 profile image
TSH110

the atrophy is found with certain thyroid antibodies as discussed by Dr Tania Smith in a blog about Atrophic Autoimmune Thyroiditis (which I have) :

Atrophy involves TSH-receptor blocking antibodies (TBAb). Confusion has arisen regarding TBAb as the essential contributing factor because the antibody can completely disappear after thyroid atrophy, and some people with the antibody do not suffer atrophy but enjoy a complete remission. Clearly, TBAb is not the sole cause, but it is so frequently found in people with thyroid atrophy that it is far more than a coincidence (Fröhlich & Wahl, 2017).

it’s quite interesting and worth a read as it explains more about thyroid atrophy and all the different antibodies and it may help explain what type of thyroid disorder you do or it don’t have.

I never had a goitre I was thin and my symptoms were more overactive than under until the very late stages - mine stopped working (there’s nothing much left of it according to ultrasound ) before I got treatment - it was all decidedly horrendous but luckily I survived . My endocrinologist knew exactly what I had - which is unusual and it’s little known about these days, medics were more informed about AAT in the past

Whole article:

thyroidpatients.ca/2018/12/...

Koababy20 profile image
Koababy20 in reply toTSH110

Thank you for your very informative reply ! That certainly was an awful experience for you…I will certainly read this article, many thanks indeed ! I hope things are better for you now

TSH110 profile image
TSH110 in reply toKoababy20

Yes much better 😊 I was lucky to make a really good recovery. I found NDT put everything right again I wasn’t very good on T4 monotherapy, though..

I hope you get answers to the unpleasant problems you are experiencing and can get it all resolved.

NDT seemed to get rid of all the ones I had - choking and coughing was one of them tho I still have the occasional bout, it’s dusty food mainly, like gf rolls with a dusting of rice flour, that can set me off. I can’t touch frieze lettuce tickles my throat something wicked and off I go with a coughing fit. Thyroid disorder can have some unexpected effects for sure.

you may find this article about thyroid disorder generally and the different types very helpful, it’s Dr Tania Smith again it’s in two parts. They can be a tough read but I try to understand what I can and revisit them and I find more makes sense :

thyroidpatients.ca/2020/04/...

Koababy20 profile image
Koababy20 in reply toTSH110

Thanks once again! Yes I’m hoping to get a little T3 added into my regime again once things settle down, it’s a pity NDT isn’t available on the NHS, it’s a disgrace!

TSH110 profile image
TSH110 in reply toKoababy20

Ironically it is available on the NHS but very few GPs will prescribe it. The northwest and south east London are the highest prescribers so if you live in either place it might be worth asking the chemist which surgery/doctors are prescribing it and see if you can see them.

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