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Fibromyalgia Action UK
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Undiagnosed thyroid ??? Advice

Good morning everyone....

I am looking for some advice. My GP has tested my thyroid so many times over the last two years and they keeps telling me it's ok.

My gut instinct is telling me it's not!

I have done some research over the months most of which I can't recall right now to explain to you - memory 😬

But basically I know that the private thyroid test appear to test for more than what the GP does. For example thyroid antibodies

My GP has said many times there test is enough and would 100% show if there was any thyroid issue. Im still not convinced!

I'd be greatful for anyone's advice of experience of thyroid testing


M x

8 Replies


GPs only test for THS and its up to the labs if they do further tests not even done if GPs request them you need vitamin D tested as well .

Only way would be to get them tested privately however even then your GP is unlikely to take any notice .

As long as THS is in range they think its ok but many like myself find they function better if under range .

Suggest you look on HU thyroid site but be aware many self medicate purchasing meds abroad or on line

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Hiya Strongshell I'm definitely no expert on thyroid problems but recently my youngest daughter has been having problems with hers and apart from the usual blood tests they were doing T2 and T3 tests whatever that means, I can remember her mentioning about fat reduction and metabolism anyway something was mentioned about her thyroid levels being very low. Now I'm still not sure if that means you gain weight or loose weight but admittedly she is piling the weight on for sure. Also she herself had looked into some things and said that this condition can also lead to diabetes and a hole host of other problems. She still has more appointments to attend so I don't know what is next to come but when I find out from her I will surely pass anything along to you. Take care. X


Unfortunately, GPS will tell you thyroid levels are "within range" when they're bumping along the bottom of the range. To me this is like feeding an athlete on McDonalds and lemonade --- they won't die from starvation, but will hardly be well nourished enough to compete!

T3 and T4 are the 2 thyroid hormones and one gets converted into the other ( thyroid uk on health unlocked explains it all - I forget the mechanics of it) GPs rarely test for Free T3 ( or it could be Free T4!) and this gives a better picture of how your thyroid hormones are behaving.

I have a goitre ( swollen thyroid) NHS endocrinologist scanned it, told me in a very condescending manner that I must be pleased it's not cancerous, so they'll do nothing about it. I can't see that a normal thyroid swells like that.

I take kelp, reduces the goitre but it immediately swells if I forget to take it. Also, it swells during a fibro flare so, to me, it seems like they're linked.

Have a look at the Thyroid site as there's lots of helpful information on there, that explains it all better than I ever could. I think fibro fog has killed off my researchers brain I used to have :(


Good Morning,

I am currently undergoing tests on my thyroid, as like you I feel that something is wrong! If you can do the private test and it will set your mind at ease I would advise it, alternatively can you see another GP as they might have a different opinion xxx


Thank you for all your replies. I really appreciate it.

You have woken my memory up. Yes I believe it is T3 and antibodies that the GP does not test for.

My GP Kees telling me that THS level shows everything.

I have asked the GP if there was a problem with my T3 or anibodies would it come up on my THS level. He has said yes however I'm still not convinced!

I'm unsure why. I do generally distrust NHS sand my GP's probably because no one ever has the time to fully explain everything and I'm a person who needs details in order to accept anything!

Also the fact that there is private testing for T3 and antibodies would indicate that there is a relevance for it but I'm not sure what it is yet.



Hi - I'd definitely suggest asking this on the Thyroid UK forum here on HU. This question is often asked there.

1 like


Another home test is just take your temperature - if it is lower than 36.5 then your thyroid is not converting T3 to T4. Basically then your whole body is sluggish in every sense. I had it for years - tried meds for it but it got too expensive and I could not get my temperature to be normal. It is called Wilson's Temperature Syndrome - google it. Now all of a sudden my temperature is normal again - have been taking Iodine daily -who knows!


For the last two years I have been going for a six monthly blood test for my thyroid as it shows up in all my results that it is low but until it gets lower the GP won't give me anything for it. I have been told by both my Scleroderma specialist and my GP that it will eventually lead to hypothyroidism but until then nothing is being done except these blood tests. Frustrating isn't it?


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