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Thyroid UK
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Hi there,I have fibromyalgia and would like some advice please

I have been reading a lot of peoples posts on the fibro action forum regarding a link with this condition and thyroid levals and wandered if someone could explain to me what the possible link is?There seems to be a lot of conflicting posts,some people say there is a link and others not.Thank you :)

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....yes there is a connection in my opinion. Am assuming you have read my two posts of this morning - as I remember your name on the Fibro Forum ! So have a look back as I have given loads of pointers. Have you had a full thyroid profile done ? If not then that would be a good place to start. Many FM sufferers say they have been tested and that they have been told they are normal. Well there is no such thing as normal - within range maybe. Having just the TSH tested is not enough ( which is what most thyroid tests comprise of ) - you will need the FT4 FT3 Anti-TPO and Anti-Tg tested. The latter anti-bodies need to be tested to confirm whether or not you have the auto-immune version of thyroid illness.

How are your B12 levels ? - also Folates Iron Ferritin VitD - they all need to be high in their ranges for good health and metabolism. Docs are happy for them to be just within range - that is sad. We need to take control.

Type in Fibromyalgia into the search box - top right - and then have a look around and have a good read. Look our for shaws and her excellent links to Dr Lowe. You may wish to look at the main website of thyroiduk.co.uk and see how many signs and symptoms you have. You will find the list in the menu on the LEFT of the Homepage. There is also a page helping you to understand blood results and lots lots more.

I was diagnosed with FM 14 years ago - Hashimotos 8 years ago - and Crohns some 40 years ago......there will be a link. The Auto-immune component more likely pre-disposes you to FM. In that case then it comes down to gut health too. Lots to learn and understand - so perhaps it easier for some to stay with the FM diagnosis and take pain killers and anti-depressants. Glad you are looking around and thinking about it - there is no harm in having good tests done if only to eliminate the condition.

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hypothyroidmom.com/thyroid-... maybe take a look and there are plenty more articles on the net...happy reading....

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Thank you marz! Yes I have been taking painkillers and antidepressant for 8 years now.Iam currently looking into improving my diet and looking at supplements to take.I have been told that my levels are normal.Will the g.p do those tests or do you need to go private?Iam seeing my doc tomorrow xxx

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Great news ! Which/what levels were normal ? Best to obtain copies of all your blood tests and post them here and we will help you. It is your right to have copies. I have listed all the tests in my earlier post. By the way I did not receive your reply - you have to click onto Reply to this in the yellow box beneath my post ! No worries it happens a lot ! make a list for your GP tomorrow - be polite but firm - they are working for you remember ! You deserve to have good health - so stick with this forum and you will soon see the improvement....well done you for moving over from the Fibro site too ! If you need any help with diet there are lots of links on this forum - so type gluten free - thyroid UK into the Search box and lo and behold - or the Paleo Diet....Good Luck :-)

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Hi marz,Iam still with the fibro action site as well as this one.I had the test done a long time ago so I don't know.Iam looking into dietary stuff at the mo and am gradually moving over to gluten/wheat free.I will ask my g.p tomorrow about the blood tests,I would also like to have an allergy test but not sure if g.p will do.Iam considering paying to get it done x

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I can recommend the book 'The mood cure' by Julia Ross. It's amazing.

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Can you tell me what this book is about please?x

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Hello, I tried to update my post yesterday but it didn't work. The book is about how to use amino acids to get well. Most people are very deficient and it affects mood and the whole body. Julia Ross, the author, also write about adrenal health, thyroid health, Fibromyalgia etc. The book is full of practical tips about tests to get, food to eat, what to avoid. Kind regards, Katarina

Ps. Have you had your cortisol and DHEA levels checked?

When I was very low I had horrendous aches and muscle pain. Just a tip :-)

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Thanks for that,can you get the bool from amazon? No I don't think I have had them checked,I don't know though.I went to my g.p Yesturday and asked for thyroid tests but she only agreed to the TSH and TF4 test.Iam going to leave that g.p though as she was not helpful at all! X

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Yes I got mine from Amazon! GP's don't test adrenals (for cortisol, DHEA) normally, although they really should. I ordered my test from Pulse screening. My GP refused to take anything else than TSH and TF4 as well. I have tried quite a few gp's this last year and they have all been extremely unhelpful because I no longer accept that I'm 'just depressed' .

I'm not! Please feel free to ask me anything, I have started getting better from what I'm sure was the beginning of CFS/Fibro, hypothyroidism type 2 and exhausted adrenals. Kind regards, Katarina

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Can you tell me how to get the tests done that I need and how did you get better?xx

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I got my test from here: smartnutrition.co.uk/health...

The test simply requires 4 saliva samples collected at 4 intervals throughout the day.

I have also done numerous of tests as I didn't know what was wrong with me. For example a food intolerance test and a hair mineral test. They really helped me figure out what was wrong (I'm gluten, milk and egg intolerant - I didn't know that before).

What has made me better, my adrenals are now producing normal levels of cortisol :-), is a good diet with adrenal support and T3 in the form of Natural desiccated Thyroid. I have also followed the circadian protocol (on Stopthethyroidmadness website) to allow my adrenals to heal whilst increasing thyroid replacement hormone.

I will now start amino acids and continue building up my minerals as I'm very deficient.

x Katarina

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Hi there,can you tell me how I get a food intolerance test please?and if the lab tests come back as normal then how do you know if you have thyroid problems for it to get treated?x

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I got my food intolerance test from York tests. They are quite expensive so maybe other companies do it cheaper. Have a look around. I had all the symptoms of hypothyroidism despite test being 'normal' and that alone points towards hypothyroidism. I also had a an imbalance between calcium and potassium (calcium too high) and a few other markers in my hair mineral test that clearly told that I was hypo.

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Hypothyroidism type 2 is also called Thyroid hormone resistance. It means lab test will look normal but the cells will not get the hormones they need and hypo symptoms will occur.

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Hi Haribo & welcome

Can you post your Thyroid levels, with ranges, for folks to help.

We recommend getting irons ferritin folate B12 and Vit D tested (for starters) as these are often low too.

Of course you could get tested privately if the GP won't, here's a link.....

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

(e.g. Blue horizon Adrenal test £46, Thyroid Profile £32 with TUK discount)

I'd be interested to know what is recommended to check/eliminate for fibro sufferers?

(I refused a diagnosis of CFS/ME after my partial Thyroid op, and have greatly reduced joint/muscle pain by supplementing Vit D). J :D

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apologies, I've now seen your previous post, tried to update but getting a 'server error'....

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I will post my blood tests after I get them done.The g.p said I could only get the TSH and TF4 done as well as iron,ferritin,vitamin d and vitamin b12.Are these the right tests?x

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I just had a full blood test, but TFT (thyroid function tests) result only included TSH as the lab won't do others if TSH is in range (saving £s) - however your GP can specify FreeT4 and possibly FreeT3 and TPO (thyroid antibodies) on the form or he can phone & insist! (There's other tests if you are already on Thyroid meds like reverse T3, which you could ask for but many just have to get privately or from an Endocrinologist).

Unfortunately TSH is a test of the pituitary hormone telling your thyroid to produce thyroid hormones (T4/T3) so is flawed - Dr Toft said recently you need more than just TSH - have you got his BMA book 'Thyroid disorders' for £5 at most chemists? (e.g. for a start it's possible that the pituitary could be at fault too - not saying it is in your case mind) that's why actual FT4 & FT3 levels are needed as these indicate the actual thyroid hormone available in serum (but not necessarily getting into the cells 'tho!)

I also had irons ferritin folate B12 (GP wouldn't do Vit D although I was low before) and all the usual diabetes, kidney, liver stuff. I haven't got my head around adrenals, cortisol etc yet - that's next on my list, but GPs rarely do these.

Another consideration is gut problems like coeliac, pernicious anaemia (also B12) which would basically make us malnourished, where most nutrients from food remain unabsorbed.

Just some things to consider and worth eliminating, if the GP won't do it then it's worth looking at private tests. Hope this clarifies a bit and hope you find some answers J :D

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