Hypothyroidism - advice on levels - Fibromyalgia Acti...

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Hypothyroidism - advice on levels

Kirby profile image
9 Replies

Hi

I asked for my thyroid levels to be tested again and once again they came back normal. I asked the nurse what the actual levels are and she told me 0.74. I know that here in the UK they can come back 'normal' and still be regarded as low by the standards of other countries eg in the US they can be viewed as low.

Looking online I am assuming that this is the test I had because these were the only numbers that fit:

'If your doctor ran a test called Free T4, or Free Thyroxine, normal range is approximately 0.7 to 2.0. If your result was less than 0.7, your doctor might consider that indicative of hypothyroidism'

So if this is the case it seems that I'm at the very low end of normal. I would love to know others experiences eg what your levels are, whether you've been prescribed anything (even if in normal range), what you prescribed and whether it helped. And did you have to push for it.

Many thanks :-)

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Kirby profile image
Kirby
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9 Replies

Hi

I've had similar, in that I have had all the symptoms of a thyroid deficiency, my |GP doesn't tell me the results of the blood tests simply saying they are all normal, and although I mentioned trying throxine she just said the bloods are normal.

Now I'm trying to concentrate on my general health, particularly diet as you are what you eat they say! I'm going to wait a couple of months and then ask for a specific detailed thyroid test if I still have symptoms.

Suex

Kirby profile image
Kirby in reply to

Good luck, Sue. Yes, I had to specifically phone the nurse up to get the exact figures and also ask for the one that tests for - is it thyroxine antibodies? That one came back negative too so that means no action. I think it is best to see an endocrinologist but how to go about asking to see one without seeming as if you're undermining your own GP, I have no idea!

K x

TheAuthor profile image
TheAuthor

Hi Kirby

I have been doing a bit of reading on this subject, as I have a sister in her forties who suffers with 'Downs Syndrome' and she has a thyroid problem.

I have read the NHS Choices website information pertaining to this issue and to my disbelief they virtually match what many Fibro sufferers complain about! So I have pasted the link below in case you are interested.

nhs.uk/conditions/Thyroid-u...

Take care

Ken x

Kirby profile image
Kirby in reply to TheAuthor

Many thanks for that information, Ken. Sorry to hear about your sister's thyroid problems. I have been having a read at the site and also they recommended Thyroid UK so I may pop over there too.

Best regards

K x

Betty67 profile image
Betty67

I ended up going to a private doctor 100 miles away and £hundreds of cost. Worse thing I ever did as previous specialist had me on a special diet and this one said not to be - I was fed up with the restrictions and wanted to believe that he could cure me and so followed his instructions and gained 4 stone. Also reading his book he thought that middle age women became ill with fibro as they wanted to give up work and this was the easiest way to do it!!!!!!!!!!!!!!!! I am currently on 150 mg and happy with that. Also back on the special diet.

Kirby profile image
Kirby in reply to Betty67

What an awful experience, Jac. Can I ask 150 mg of what? I just don't know if I'm hypothyroid or not or what my levels mean or even which test I had

Betty67 profile image
Betty67 in reply to Kirby

the ordinary bog standard levothyroxine that you get on the NHS. My GP 20 years ago when they had more freedom use to go prescribe to all those who were low normal.My next GP did not want to justify this to her senior partner so insisted I went to see a private specialist who as I said was extremely expensive. I now have a new GP and get the tablets on the NHS again.

What I have learnt is the the thyroid is complex and what is normal for one person is not always normal for someone else.

How about asking to try a very low dose for a short period and seeing if it helps?

Jacqueline

Kirby profile image
Kirby in reply to Betty67

Thanks Jacqueline. That's a good idea - I could ask and say that others who had similar levels to mine found that it helped. :-)

Betty67 profile image
Betty67 in reply to Kirby

let us know how you get on.

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