Just a passing thought...?: I was just... - Fibromyalgia Acti...

Fibromyalgia Action UK

60,012 members67,193 posts

Just a passing thought...?

rosaann52 profile image
35 Replies

I was just woundering . How many of us who have Fybro..also has an under active thyroid...I've been reading some articles that link Fybro with this condition and I'm just interested too see if there may be any truth in it.....

Written by
rosaann52 profile image
rosaann52
To view profiles and participate in discussions please or .
35 Replies
rainbowdancer profile image
rainbowdancer

I do so it doesn't help with weight either !!!! ;-(

LindseyMid profile image
LindseyMid

The symptoms overlap, so hypothyroidism may be mistaken for Fibro or Fibro may mask developing symptoms of hypothyroidism.

It should be thoroughly tested for as part of diagnosis and tests should really be rerun if your symptoms are worsening or very hard to control.

ladymoth profile image
ladymoth

Hypothyroidism is not uncommon in the general population, so it's pretty likely that a lot of fibromites will have it too.

It needs its own specific treatment, and shouldn't be lumped in as part of the 'fibro package'

Moffy x

tramadolknight profile image
tramadolknight

I sugest you visit the thyroid action website, a recent poll shown that 48% of people with hypthyroid, also had " fibromyalgia" its very informative and useful

x

Tspringer1 profile image
Tspringer1

Lindsey - my thought exactly. The two conditions share many symptoms and often occur together. I wrote an article on this -

fibromyalgia-treatment.com/...

Hope that is helpful and its ok to post it. If not - let me know (or remove).

Terry

rosaann52 profile image
rosaann52 in reply toTspringer1

Thanks Terry I 've read the article and found it very interesting....my own 'gut' feeling is that these two illnesses are some how very much linked...I was diagnosed with UAT over 13 years age and my Fybro was diagnosed 9 years ago....and although I'm on 125mgs of levothyroxine ,I feel as 'unwell' as I did before I started the treatment..is it true that some people cannot absorbe the artificial thyroxine and have to use a natural thyroxine instead. If so how do you find this out !

kaymayes profile image
kaymayes in reply torosaann52

iv had fybro for years now and also had hypothyriod ism (or whatever its called lol!) i feel so bad iv been on thyroxine for years and havnt felt any better and im also wondering if its working (although going to my doctor and asking anything is pretty much a waste of time) im feeling very depressed about the whole illness thing .or am i feeeling sorry for myself ?

Well I have an underactive thyroid gland and fibro.

The thing is symptoms of both illness are remarkably similar, what a bonus!!

Going away from this subject. I don't know for sure about this, but have you noticed

That us fibro sufferers tend to miss words when we are writing our blogs.

There has got to be a link surely here.

It would be interesting to know what other fibro sufferers think about this one!!

Lucyw profile image
Lucyw in reply to

Hiya,

How interesting! I almost every time miss out Words when typing like I'm saying in my head what I want to say yet miss it out on the keyboard. I wonder if there is a link there?

Mamina profile image
Mamina in reply toLucyw

In my situation, I think it is as a result of Graves disease because my brain is working faster that my hands, so I now try to read my stuff twice or even three times but still read and miss words. I also have started to talk faster than before.

kaymayes profile image
kaymayes in reply to

:) lol! i do this all the time but i do have trouble with my grip im always dropping things.

Mamina profile image
Mamina in reply tokaymayes

I too have problems with gripping things. You should see my walking stick all taped up coz I drop it always. I break utensils, spill food on myself and so on but life goes on.

Mamina profile image
Mamina in reply to

Does anyone change topics in their conversation,? I do that a lot because I would be speaking about something and something else totally unrelated pops into my head and out of my mouth. It is sooooooo embarrassing. I now tell people to watch out for my topic changes so as not to embarrass myself. Doc says it might be fibro related but not sure.

Paula8790 profile image
Paula8790 in reply to

Hi, I have just read your post from 4 years ago about missing words when you write. And iv noticed this with myself over the last few years. I always have to go over what I have written to check for missing words. I also forget what I am talking about sometimes or forget the right word for something.

mooo1967 profile image
mooo1967

I have hypothyroidism and am struggling to get thryroxine levels sorted on 175mg at the moment - due to have yet another blood test ; (

siskin profile image
siskin

Go to my communities at green band at the top of this page and search there for Thyroid U.K.they are part of the health unlocked group.

motzie profile image
motzie

i have under active thyroid...was up at 953 and nearly peterd out as my dr said. I take 125mg levothyroxine but i am starting to feel exhausted again so its a blood test every 3 months. It took me ages to introduce the levo to begin with..i literaly had to crush the tablet & take a crumb to let my body get used to it, think it was approx 1 1/2 -- 2 yrs since diagnosed. There are very similar symptoms to fibro, my dr is very good and did all the necessary tests & i have been diagnosed with Fibro ME/CFS, thats along with the underactive thyroid.

I have underactive thyroid and have had for years, I thought my levels were dropping as I was getting lots of symptoms but when levels were ok my gp then started to think fibro. He believes I have had fibro a while but it was masked by my underactive thyroid, I am on 100mcg of thyroxine and have been on that dose for over ten years now.

in reply to

Meant to add I have thyroid antibodies and recently my daughter has been found to have these too her thyroid function is a little low but she has been started on thyroxine as she has the antibodies. It runs in my family and I started out with over active thyroid aged 18. Despite medication it went out of control so I ended up having surgery aged 20, Then at 29 yrs old it started to slip down and eventually went underactive,

Lucyw profile image
Lucyw

I too suffer from under active thyroid and have done for over 15 yrs. I was diagnoised with fibromyalgia about 3 years ago, but I think I've had it way before that and a rheumatologist diagnoised CFS, told me to exercise and loose weight. Not sure how your supposed to lose weight if you can hardly walk let alone exercise.

If food is the only thing that hurt you but brings a little pleasure, why not enjoy it!

LeeLarLou profile image
LeeLarLou

Another under-active & fibro-mite here too... sister-in-law has it too.... was diagnosed with thyroid probs in '99 but my GP said that the signs were there since 86! if only my past GPs had put the symptoms together... ibs, weight gain, puffy appearance, brain never seems to shut down and when i talk i jump from one subject to the other.. dry, itchy skin, constantly tired, thin brittle nails, always feeling cold (even on a lovely summer day) and then mid-way thru last year after battling chronic sciatica due to a couple of prolapsed discs touching the sciatic nerve. I went to see a doc and straight away she looked at the list of all the symptoms over the last 10 years and said I had fibro!!

gentle hugs

LLL

:)

sja0554 profile image
sja0554

I've been on thyroxine for many years now after my immune system attacked my thyroid and I developed a visible lump on one side of my throat, I was told it was De Quervain's thyroiditis. It was after this episode that the fibro really showed itself, so yes I do think they are connected. I also have proctitis which is a form of colitis. All auto immune disorders. :(

wotley profile image
wotley

You are right in thinking the symptoms overlap and that some with Fibro can/could also have hypothyroidism, but in order to be diagnosed with fibromyalgia, as with most conditions without a blood test or scan for diagnosis, you should have had everything else that your symptoms could be ruled out. If your GP and/or rheumatologist was doing their job you should have already been screened for this condition in the process of fibromyalgia diagnosis. If you don't think you have had a blood test for thyroid problems check with your GP, remember its hard for GPs as they have to remember a lot of stuff about everything instead of just a few things so things get missed and its also why you get sent to specialist consultants for things out of their remit. A big tip is learn as much as you can your self so that you can prompt your GP if you think something has been missed, or go to a GP that has an interest in chronic pain conditions or get referred to a rheumatologist.

I am a nurse who lives with fibromyalgia, endometriosis and IBS, if it weren't for looking things up myself my GP would still have me on a cocktail of drugs and I would no longer be doing the job I love. I requested to attend a pain management exercise group which gave me some of my life back, had to change specialism which I work in for something not quite as physical and I can now do more than ever, I'm even able to get up some mornings and make my partner breakfast before work and my last flare up I stopped myself within a week.

I hope this helps someone regain some of what Fibro takes from us, mine along with the endometriosis took my uterus too, it's not an easy path but there is a life out there for some of us and hopefully one day all of us.

Gentle hugs x

Tspringer1 profile image
Tspringer1 in reply towotley

Awesome post - totally agree!

Terry

Mamina profile image
Mamina in reply towotley

True that is especially coming from a person in the medical field. Symptoms do overlap because I had hyperthyroidism (Graves disease) which brings lots of problems, weight loss hair damage eyes damaged etc. but doctors did not associate it with anything until I was almost going mad. I had endless amount of energy working non stop but would suddenly feel tired. I am now waiting to attend the pain management group but this is not explained to patients by doctors. I found out through reading a book about living with chronic pain. I then insisted on being referred to the pain clinic where they believed that I was in a lot of pain and have been very helpful. I have IBS, Diverticular disease, Fibromyalgia, Osteoarthritis and osteoporosis and think I might have an ulcer. I am having a gastroscopy in two weeks time. It is important that we insist to be referred to whatever specialist or consultant it is because we are the ones suffering and in pain not anyone else. It is a basic human right to be seen to accordingly. That is my belief and will stick to it. Fight on guys. Take care all and pamper yourselves.

SuzyB profile image
SuzyB

I too have under active thyroid. I was told its not surprising as one auto-immune disease often attracts others.

Teddysmum43 profile image
Teddysmum43

I have it too have looked into the thyroid situation and the charities that are fighting for the right treatment. I've spent a fair amount of money trying to get thyroid sorted all I got was a reduced bank balance and very very stressed. It's very very complicated. Hey ho.

gypsyros profile image
gypsyros

I also have an uat , diagnosed at 40 but think I had over active thyroid 1st has I lost 6st in no time I used to say my head is going to fast for my body, lol I was diagnosed with fm in the same year by my gp but had to wait to go see a specialist to be diagnosed for fm . Lost 3 of my sisters and. 1 brother because as they put it ( all I did was talk about my illness) I also kept trying to get them to be tested for uat , now 15 years on I have a niece with over a five thyroid, 1 niece with uat and another niece about to be diagnosed. So who was right ?

Mamina profile image
Mamina in reply togypsyros

Been there as well it is a crazy situation indeed and nobody seems to understand because it is very personal.

dovetail profile image
dovetail

I also have an under active thyroid & fibro! I wish somebody would do a controlled study, so everybody with fibro symptoms could be automatically tested for an under active thyroid, as it seems they go hand in hand in a lot of cases.

rosaann52 profile image
rosaann52

Wow never thought I'd get so many responses... could there be a link......if so many of us have these conditions running along side each other why is no-body looking for a link.....I'd certainly take part in any investigation into one.....I had a fight on my hands getting each illness diagnosed..... apparently they were both in my head....yeah right....like I said to my Doc I'm not ill because I'm depressed, I'm depressed because I'm ill....

theshadow profile image
theshadow

I have an OVER active thyroid. Causes rapid heart rate, (102 at rest) shaking, anxiousness, and depression. My levels are up & down like a yo yo. Drugs should take about two months to change levels, mine went sky high in just 8 days!

At hospital Dr said if it goes up again they will take thyroid out. It did, but next Dr says that is a last resort. It should settle down on it's own in A YEAR OR TWO!!!!

At the moment I am trying to dose myself, rather than wait til feel so ill, go to GP, have blood test, & told to double dose. I now moniter myself, so If I sit & cry for no reason for a couple of days, then get the shakes back, I double up my dose until I feel better! Drs no help at all, just let me get on with it on my own! .

It's like the chicken or the egg with depression! But hormone levels affect mood, so it's like a double whammy!

Mamina profile image
Mamina in reply totheshadow

It is hard but believe me it will settle down in due course. I was like that but mine settled after nine months but left behind other problems. They called it a galloping heart. The blood pressure will settle down as well but all depends on your own body. Do not be anxious if you can as I found that anxiety made me worse. I am an anxious person anyway. I was depressed anxious crying easily always upset and extremely self conscious and sensitive. I was given an antidepressant and was very happy after that. I avoided people but in the end Hooray it came to an end.

Try to relax take walks if you can, eat well and find a book about Graves disease you might get one from library and see if there is British Thyroid Foundation branch next to you. Join them as they are extremely useful. You will meet other people and they have guest speakers who are experts in thyroid problems or go onto the British Thyroid Foundation website there is a lot of information that might benefit you. Take good care of yourself. Eat lots of greens so as to protect your eyes. Mine got damaged because I did not know about the greens I mean green leafy vegetables like spring greens, lettuce, savoy cabbage etc. oh! by the way I was on carbimazole tablets.

mollyanna profile image
mollyanna

I have but before it went under active it was over active for a short while and I developed Graves disease which causes double vision ..I also read somewhere this can be linked to Fibro.

Mamina profile image
Mamina

I agree with you, I started with an overactive thyroid (Graves Disease) which turns your life upside down as everything is on a fast lane. When it settled after nine months of treatment ( gone into remission) I started to feel the fibro effects but was told "it is in your head" by gp. My mind is still in the fast lane but the body is in the crawler lane. Ha! Ha! I am a fighter so it took years from 2004, to be finally diagnosed in 2009. No one believed me until I was referred to rheumatology in 2009. I have become partially sighted because my eyes were damaged by macular and retinal damage though leaking of vessels at the back of the eyes. Since graves disease is an autoimmune disorder (your defence system turns against itself and destroys whatever tissue it does not recognise) I believe that my muscles bones etc. all that I am suffering with was attacked by Graves disease. I find it beneficial to invest in good books written about my conditions, it has made me learn how to manage myself and know that I am definitely not mad of crazy. I do not know how many of you have attended the "Expert Patient Programme (EPP) run by the NHS. It helps as well because you learn to shift from being a patient to a person and how to manage yourself and your condition) Check with your GP or nurse. I struggle with a difficult situation but never lie down because time passes me by and "Life is too short". To all of you I say take one day at a time, slow down listen to your body but exercise everyday you will see an improvement as the muscles begin to respond to the slight and gentle movements. Take care all of you mighty warriors.

Not what you're looking for?

You may also like...

Hi all, just a quick intro !!!

Hello everybody!!...im a 49 yr old male, still in the process of getting a diagnosis, Fybro has...

Just a thought!!

Wouldn't it be good if our bodies Glowed like a fireflies bum !!in all the areas it hurt and maybe...

Just a thought...

Just a quick thought, does anyone else think long Covid is very much the same as fibromyalgia?...

Just diagnosed with Fibro

Just been diagnosed with Fybro feeling really down not to mention exhausted. Wondered if anyone...
Pam61 profile image

Fybro & dentistry

Hello, I've newly been diagnosed with fybro & have just had a back tooth taken out which didn't...
Dreamgreen profile image

Moderation team

See all
Hazel_Angelstar profile image
Hazel_AngelstarAdministrator
Lynda_FMA_UK profile image
Lynda_FMA_UKModerator
Sarah_fmauk profile image
Sarah_fmaukModerator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.