Under active thyroid blood test - Fibromyalgia Acti...

Fibromyalgia Action UK

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Under active thyroid blood test


Hi all wondering if anyone can help me my 15 year old daughter has fibromyalgia I asked to have a thyroid blood test for her it came back 3.85 which I was told was normal but I still think she has under active thyroid is there any other test I can ask the doctors to do on nhs as I asked privite and it's 250/300 just for consultation I don't have that kind of money as I'm on be idiots as I'm not well my self any advice should be apprised

13 Replies

Hi Hollie,

I have pasted you a link to one of our other community forums Thyroid UK.


They may be able to assist you better, as your question is related to the thyroid!

Take care, soft hugs,

Elizabeth :) xx

Hi there please don't get me wrong as I may well be but as far as I'm aware the thyroid test that can be done, are due to other conditions where a doctor would spot and then ask for the tests, these are funded on the nhs. But fibro doesn't always show these symptoms and even though the same thyroid effects are present in fibro the nhs as yet doesn't fund for those particular reasons so the doctors hands are tied. Hope this makes sense. Some time ago there was a video of two ladies that are trying to get this recognised in parliament so that it can be wish I knew the link but alas it was some time ago . x

Hi Hollie121,

I have pasted you an excerpt from the Daily Telegraph on this issue. As the others have said it would be better to ask on the thyroid forum as they would know more about this than we do. I want to genuinely wish your daughter all the best of luck.

*TSH is made in the pituitary gland, which controls thyroid hormone levels. A “normal” range of TSH is roughly between 0.4 and four milliunits per litre (mU/L). Lower than this can indicate an overactive thyroid, while more than four could be a sign of underactivity. 22 Sep 2014

*Excerpt Daily Telegraph.

All my hopes and dreams for you


Lima6MCT in reply to TheAuthor

There is a difference between what UK call normal and what US call normal. Endocrinologists in the US have decided that the normal range should be 0.3-3.0 so there are quite a few of us who are pretty sure they are over/under would be classed as such if we lived in America


TheAuthor in reply to Lima6MCT

Hi Lima6MCT

Yes, I entirely agree and I use the 'about health' website myself. Unfortunately, when you visit a doctor in the UK they have to go by BMA and NICE standards on these issues, and therefore what they say is normal goes. I can imagine that it is the same with their measurements in the US? It really is not an easy thing to get to the bottom of as it leads to a deal of confusion for patients?

Take care


Europe and US have lowered their TSH down to to 2.5

Here in UK we are years behind, unfortunately, so many Thyroid patients in Uk get 'missed' or over looked' and sadly left very unwell, with many symptoms presenting.

My sister who has downs syndrome has an under-active thyroid. She has been very lucky with her diagnosis and treatments as I am aware that many suffers do not get diagnosed due to inequalities in what constitutes a thyroid issue? Despite this, she has been unwell for many years as they are having trouble stabilising the problem.

Take care my friend


Hi TheAuthor,

Sorry to hear your Sister has an Under Active Thyroid

(also known as Hypothyroidism or Low thyroid)

I too have an under active thyroid, Doctor told me it is a medical condition for life.

You said your Sister has been unwell and has trouble stabilizing, I read daily that many thyroid patients have this same problem. Doctors can't seem to give us the correct medication. I had to beg several times for my Thyroid medication (of Levothyroxine) to be upped as I felt terrible.

Wondering if your Sister is having a FT4 to FT3 conversion problem (gut issues)

Many cannot convert their (inactive) FT4 only Thyroid medication into the (active) form FT3, (active) FT3 is what almost every cell in your body needs. So if you have a conversion problem your body is not having the full uptake of medication prescribed, so you might still be feeling unwell.

* Ask for FT3 blood to be done, this tells all.

Also it is best not to take your thyroid medication 24hours before a blood test as it gives a false result, you probably won't be prescribed the correct medication dose, best to take take the medication after the blood tests.

Also do a fasting thyroid blood test as early in the morning as you can for best results.

Your Sister is one of the lucky ones, many thyroid patients are overlooked or missed, but being lucky does not always mean you get the correct thyroid medication your own body needs.

*Thyroid Patients should not be on depression pills as these will make them worse.)

* Also hopefully not on Statins ?

Along with optimizing your Thyroid Medication to make you feel as near to normal again, Thyroid patients (especially) need to check their iron, ferritin (stored iron,) folate, vitamin D and vitamin B12 blood levels too, as being low or low in range in these can cause symptoms.

I later found I was deficient in Vitamin D, and low in range (the grey areas) in both ferritin and vitamin B12. I now supplement.

*Note - vitamin B12 Deficiency or grey area vitamin B12 can cause similar to thyroid problems, many have both under active Thyroid and a B12 Deficiency.

Do hope your (under active) Sister can get some help in getting herself well again Ken, it can be done, but it is a bit of a journey to get there, (sending my love to her X)


Thank you so much for this it is genuinely appreciated. As she suffers with Downs Syndrome, she is unable to openly tell us how she is feeling on a day to day basis, but her GP has been wonderful and performs regular testing on her. She can go from a happy and laughing lady to somebody who just lays down and sleeps. It is quite heart breaking. Once again, thank you :)

Hi, a very simple test is to take her temperature a few times during the day - if it is lower than normal then the thyroid is not working optimal. Please google Dr. Wilson temperature syndrome (something like that) . My temperature was below normal and I took tablets from him which should bring up the temperature, but after 15 months I quit because of the expense and the tablet have to be taken exactly 12.00 hours apart. I have had fibro for 32 years and maybe nothing will help anymore. Judging from the testimonials a lot of fibro people felt a lot better after their temperature is back to normal.

Hi Hollie - please take a look on the Thyroid UK website. You can have the blood tests done privately - and it doesn't cost anywhere near as much as the amount you cite for a private consultation. People on the Thyroid UK forum will be able to advise you and direct you to the right place if you ask there. :-)

I hope I'm OK to post a link to the Thyroid UK site here for Hollie?


Hollie - look at the "testing" link on the menu to the left of that page. You'll find details of various places where you can get tested there.

Hidden in reply to CarolineC57

Thats ok Caroline you can do that.

It's already been given further up the thread too :)

Thanks being a caring fellow fibromite :)

Xx Sian :)

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