AT LAST!!!: I've been trying to convince my... - Thyroid UK

Thyroid UK

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AT LAST!!!

HUMBERVIEW47 profile image
8 Replies

I've been trying to convince my various doctors, over the last 18 years, that I've probably got a thyroid problem but all said I haven't/hadn't but I knew I probably have and how to set out to find out. I was beginning to feel at the end of my tether in the month and happened to get a link to Thyroid UK - yippee! At last, I found the answers I wanted and have now started my path of discovering where I go from now. I saw my Dr and I've an endocrinologist's appointment, in the pipeline!! THANK YOU Thyroid UK for these first steps. You are wonderful.

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Peanut31 profile image
Peanut31

Hi Humberview47.

That’s fantastic news, but, I don’t want to be a negative nancy, and I’m sorry there is a but.

Just be mindful that you may not progress as you hope despite seeing a Endocrinologist. It depends on how good he is. I speak from personal experience.

I learnt everything I know from this forum and another thyroid forum.

I paid private to see an Endocrinologist (was NHS too) and he was rubbish. I had a diagnosis of Hashimoto’s, but told by him no medication would help.

Too cut a long story short I was getting worse, went to GP recently and TSH 12.2 so put immediately on Levothyroxine. It’s still early days being on the medication.

Let’s hope you have a good one.

Good luck

Best wishes

Peanut31

shaws profile image
shawsAdministrator in reply to Peanut31

I think the huge problem in the UK is that the advice is for doctors to only diagnose when TSH reaches 10. They ignore disabling symptoms and know none.

Excerpt:

"The AACE has decided that 0.3-to-3.0 is the new reference range. According to this new range, if a patient’s TSH level is above the upper limit, the doctor should diagnose hypothyroidism".( i.e. American Association of Clinical Endocrinologists)

In UK we have to wait till it reaches 10 with disregard to disabling symptoms.

HUMBERVIEW47 profile image
HUMBERVIEW47 in reply to shaws

How interesting! As usual, it's let us wait and see what happens! DON'T think so. I'll be asking questions until I get what I want. Thanks.

HUMBERVIEW47 profile image
HUMBERVIEW47 in reply to Peanut31

Thanks Peanut, we'll see what happens!

janveron1 profile image
janveron1 in reply to HUMBERVIEW47

Check to see that endo is NOT a diabetic specialist. You need a Thyroid specialist endo. You can check this by finding the doctor by name on the hospital staff list.

HUMBERVIEW47 profile image
HUMBERVIEW47 in reply to janveron1

Thanks for that info.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 at same time as FT4 plus vitamins

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's

HUMBERVIEW47 profile image
HUMBERVIEW47

Really useful notes from this - thanks. Will go along and see what endo has to say too.

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