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Thyroid UK

siskin profile image
16 Replies

I have been dianosed with Fibro. and RA. but suspected of having thyroid disease.

I have just looked at the tags on this site and only 4 mentioned thyroid.

Among the Health Unlocked web site is Thyroid U.K. You can find it by going to My Communities on the green band at the top of the screen.You will find a list of organisations. Scroll down to Thyroiid U.K Press on that, and you will be asked to put in your e-mail address, should take you straight through.to Thyroid U.K.

Computer will recognise the name you use here, as all interlinked.

A lot of people are undiagnosed with thyroid disease making life hard as a lot of the symptoms overlap with fibro.. It could be you have an underactive thyroid.

Just researching could make a difference to your life.Good luck.

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siskin
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16 Replies

Hi, yes, thanks for info, the consultant I saw mentioned the overlap of symptoms and is doing a thyroid test but I know that not all consultants do that and apparently even if the test results are clear there can still be a link. thanks again.

Hi again, just tried the link but it's just for thyroid cance, maybe it's changed or maybe the name includes all thyroid problems. I'll go and check.

siskin profile image
siskin in reply to

Hi secondhandrose, If you go back again and search down left hand column it is under hypothyroid and hyperthyroid or in middle column Thyroid UK. by chance you found thyroid cancer which is Thyroid WA sorry I wasn't specific enough. Hope o.k. now

hamble99b profile image
hamble99b

I have an underactive thyroid ra and fibro among my conditions. There are some thoughts that a "normal range" result for some hides an underactive thyroid - indeed mine was only slightly below but the consultant acted on my symptoms and the difference thyroxine made to my life bore that out.

sandra.

Hello. Thank you for the info. I have been tested a few times for thyroid problems and they always come back negative but it is definately worthwhile knowing.

Piggie hugs xxxxxx

Hi, many thanks for all info and help. I''ll have a look.xx

colleenofminster profile image
colleenofminster

Yup there is a problem with getting your thyroid problem diagnosed. Because there is a "normal range" that GP's work from often this condition will go undiagnosed. However the fact is that as with most things, humans DO NOT all come in the same size, flavour etc etc so what is a normal range for one could be very low/high for another. I had a battle getting onto thyroxine and eventually had to go private to a specialist who confirmed my condition. The medication made a huge difference which went to prove my diagnosis. There is a very good book which helped me hugely and Im sorry I have lent it out to someone and cannot immediately recall the authors name but the book is called "Tears behind closed doors" and very worth while reading if you are worried about this. Colleen x

susie59 profile image
susie59

i have hypothyroidism and belong to the thyroid uk website , and another one under healt unlocked is the pain one, its very helpful for chronic pain sufferers, :)

deelightful profile image
deelightful

Hi,

me too, It was changing GP's that helped me get diagnosed, I often had test as my Eldest sister has had thyroid problems, she has had them since birth. I am amazed at the number of symptoms that go hand in had with M.E and F.M.S, I like your comment colleen, as all the while my last GP's compared it with the "normal range" and all that time I was under-active for me. I notice straight away that my levels are wrong if I take the wrong dose. It has made a difference, but still waiting for a full diagnosis for F.M.S, I have a "PROBABLE" diagnosis. Now have an appointment with a Rheumatologist in Dec. I fill sorry for everyone who has these terrible debilitating illnesses, all we want is some level of control and a fair portion of our lives back. I feel like I have lost the last 10 years, just to be able to enjoy tomorrow instead of fearing what it will bring.

WE ALL MUST TRY AND THINK POSITIVE, APPARENTLY IT HELPS.

siskin profile image
siskin in reply to deelightful

I think my Dr. is a numpty, on thinking about it I am positive my Dr. IS A NUMPTY :-(

suz22 profile image
suz22

Hi I have just bought the book it's author is Diana Holmes if this helps I bought mine from amazon can't wait to get it I have thought for years this was my problem as well as other medical problems fibro being one of them but was told I was border line when test came back first time then after been told test was negative so will look forward to reading this thank you xx

siskin profile image
siskin in reply to suz22

Thanks suz22 will get book. You say above "I was border line when test came back." I was "diagnosed" 15 years ago by Dr. An educated guess. Please what test were you given as there were none available then.

I have had RTA 18 yrs. and now possibly hypothyroid so feeling pretty grim :-(

siskin profile image
siskin in reply to siskin

Not RTA meant RA fibro fog?

Gessy profile image
Gessy

Morning All. Maybe I'm different,as I know what blood tests to ask for,and I have a great GP.I can talk to him about anything,so when I told him I was getting so tired and I did'nt think it was my fibromyalgia,so he did a full blood count ( fbc) and he thought we'll check my thyroid as well.A week later the results came back,I had a under active thyroid and was put on Levothyroxine 175 micrograms,and I keep a record of all my results,its no good tell me " all is normal " because I want the numbers.I now have my thyroid tested every eight weeks.So with a underactive thyroid,oestoarthritis & Fibro my doctor has explained that my immune system is attacking my body,so I cant rely on it ! And to think I was a blood donor for years before I was told I could no longer donate my blood because of the lack of anti bodies,now that REALLY upset me...Hope your all keeping warm in this cold damp weather.xx

linksy profile image
linksy

Hi am diagnosed with fibromyalgia and have been diagnosed with an overactive thyroid this year. the drs been really helpful but cant find much info on overactive. I have joind the health unlocked groups for fibro and thyroid and will check out the link above thanks for info. x

paularose profile image
paularose

I notice that a lot of people talk about the similarity of symptoms between underactive thyroid and FM but not overactive. I was diagnosed with FM just over a year ago after suffering all my life with pain and serious fatigue (I'm now 46). I had a thyroid test and it came back ok but I have just made an appointment with a new GP to talk about the possibility of it being a thyroid related problem. My mum and a number of her family have thyroid conditions. My mum had a seriously underactive thyroid after having me and ended up having an operation. She's been up and down with it all her life but has had it mostly under control. She thinks my symptoms are very similar. For her it was simple as her levels of thyroxine were ridiculously low so it was obvious she had a major problem. I know that there is a possibility that the test can come back within the 'normal' range but that that range is quite narrow in the UK. Also I read somewhere something about testing for T3 and T4 and that it's possible that T3 can present as being normal but the T4 is not???? I may be muddling this up now as I haven't read it for a while but it was something along those lines. I guess I'm really hoping that it is thyroid related problem rather than FM because at least then I have a fighting chance of my health improving. At my age with a 4 year old daughter and needing to go back to work I need to be well!!!!!

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