New Guidelines aim to improve Endometriosis dia... - Thyroid UK

Thyroid UK

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New Guidelines aim to improve Endometriosis diagnosis times. What about Thyroid guidelines?

crimple profile image
3 Replies

Really pleased to see this in paper today. Assuming the issuing of guidelines to NHS workers does actually work! Updated guidelines from NICE . Many women wait for up to a decade for a diagnosis, like my daughter. She lost a whole decade of what could have been a successful career in music. She suffered severe pain and had at least 5 operations. The last one to remove her uterus and part of her intestines.

Wouldn’t it be great if similar guidelines could be produced regarding thyroid disease diagnosis ?When will NICE realise how many lives are ruined, how many working hours are lost because the medics, including so called Endos don’t have a clue? When will treatment by TSH end?

Has TUK tried to get better diagnosis by getting better training for medics?

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crimple profile image
crimple
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Starfish123 profile image
Starfish123

I never managed to get any treatment or investigations re endometriosis, I was told I was incorrect regarding my symptoms so it wasn’t looked into. It was stage 4 and found by accident during an operation in my 50’s. So to me whilst your daughter has suffered terribly she has been believed.

My hypothyroidism whilst treated I’ve never felt well so if new guidelines would help this that would help myself and many many others.

tattybogle profile image
tattybogle

current (Nov 2019) N.I.C.E. guidelines for Thyroid Disease Assessment and Management here : nice.org.uk/guidance/NG145

crimple profile image
crimple in reply totattybogle

tattybogle thanks for the link, which I have just read.

I feel there would be a lot less misery around thyroid issues if the "committee" had gone back to basics to explain what TSH is (not a thyroid hormone)what T4 is , a storage hormone and what T3 is, the active hormone.

The aim to keep TSH within the reference range is the reason for so many ill people who seek advice on here. I know you know all this, but until the medics go back to med school there is no hope for a lot of folks who haven't found this website, do not feel able to advocate for themselves, have to deal with Diabetes specialists who parade as thyroid experts!

There is no mention of the main reason for using Liothyronine, which is because the patient is a poor converter of T4 to T3, which is precisely my problem. My TSH hasn't been above 0.005 since about 2015. I declared to the Dr at the time that I was quite content with my TSH and very happy with my T4 and T3 levels (I was taking T4 and T3) and feeling human again!

Only last week I had a young GP, perfectly pleasant dealing with a non thyroid issue, ask me why I took T4 and T3. I said I was a poor converter. I wanted to go back to basics as above but desisted. I find it wearying having to explain/ educate.

Thanks again for the link but I think it's head banging stuff!

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