Any lumps or anything. I am curious to find out if it is another thing we fibros have to suffer.
Hope your day is going well.
Bye for now A x
Hi has anyone had any trouble with th... - Fibromyalgia Acti...
Hi has anyone had any trouble with their thyroid.
Written by
Annabell
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46 Replies
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Yes they discover mine during a barium swallow, along with another hernia, so I'm waiting for a scan before they will sort it out, it's always something, isint it! xx
Annabell• in reply to
Hi thank you for replying, you are right thee is always something and it sounds as though you have even more. I hope the scan goes well.
Please reply again.
Take care by for now Love A
I've had hypothyroidism for many years, before the fibro, actually. My problem is - due to HT, I've always had to work hard, physically, in order to stop weight gain, because i don't have enough thyroxine, despite the supplements. Now, fibromyalgia has made such excercise impossible, I have gained about 6 stones in the last 6 years. My former life has gone - I'm too upset about my weight, and how I look, that I've even covered the mirrors in my house, and almost never go out. I've begged my GP for larger doses of thyroxine, but, bevause I've already suffered a stroke, he'd rather I stayed a little under the dose needed for weight loss, because I could stroke out again, or have a heart attack. You don't say if you have hypo or hyper thyroidism, so all the above could be useless to you, lol Whichever it is, make sure your doctors keep a close eye not just on the condition, but how it affects your life in general. Hope you're having a "good" day. x
Hi thank your for replying and for all the info and common sense. I really appreciate what you and others who have replied said. I did n't undetstand that my doctor could increase the thyroxine to stabilise I haven't had any problems with strokes or heart so I dont see why not. You are right it does affect your life style I think mine are weight hot sweats and tiredness, are these yours? I will definitely make this known. Many thanks.
Please keep in touch and take care.
Bye for now Love A x
Yes I have Hypothyroidism, found out a few months ago and so far am still going back for tests to get thyroxine levels right,
Hi thank you for replying. From the replies it seems it is common with fibros as if we dont have enough to put up with. I know what you mean about levels the doctors take so long and in the mean time we are suffering with the symptoms.
I hope your levels are sorted.
Please keep in touch. Have a good evening.
B ye for now Love A x
hi me too with under active thyroid , i was put on tabs for this a few months ago , i know what you mean about the weight I put 7 stones on in 5 years . Before that I had been training to compete in triathlons and was very fit . I dont feel that my gp keeps a close eye on the thyroid thing because of everything else I have wrong with me . If what Ive read is correct fm and underactive thyroid do present with very similar symptoms but a blood test shows up the thyroid problem but obviously not fm . I cant think my fm symptoms were improved though when i started on the thyroxine ?
Thank you for replying. I understand what you mean about the weight my was only found because of a lump. I feel for you as you were very fit it must have been a terrible thing for you this fibro is a nightmare. I know what you mean with the gp I think fibro is so bad they dont really understand it.
Please keep in touch.
Enjoy your evening,
Take care love A x
I've had an underactive thyroid for 16 years - it was the first "condition" I was diagnosed with - always been fat and that has changed in so far as I've gone down from a size 32 to a 24 but just find it impossible to get any lighter.
Now on 225mg of levothyroxine so I'm pretty nearly maxed out on that.
Just another addition to the recipe of pain and fatigue I guess!
Julie xx
Hi thank you for replying I think you have done really well to control your weight it is one thing that really upsets me seeing how big I am getting. I try not to eat much but this is hard because my meds give me an apetite. I am hoping my doctor increases the thyroxine but the last time I went she wasn't too keen.
Anyway hope your day has gone well and you get a good nights sleep.
Please keep in touch
Bye for now Love A
I not really up on hypothyroidism but remember my neurologist asking if i been tested and for hormones too(hormones at lowest levels say poss going through change) but never been tested for thyroidism i have no idea why.
I have alsorts of issues too.
But i hope you can be sorted out xxx cazzie xx
I not really up on hypothyroidism but remember my neurologist asking if i been tested and for hormones too(hormones at lowest levels say poss going through change) but never been tested for thyroidism i have no idea why.
I have alsorts of issues too.
But i hope you can be sorted out xxx cazzie xx
I not really up on hypothyroidism but remember my neurologist asking if i been tested and for hormones too(hormones at lowest levels say poss going through change) but never been tested for thyroidism i have no idea why.
I have alsorts of issues too.
But i hope you can be sorted out xxx cazzie xx
Hi thank you for replying. The only was I was tested was when I had a lump the blood tests showed the thyroid problem. I dont think they do a blood test automatically but if you have symptoms you should ask for one. We can sometimes be too timid.
I hope you reply again
Take care
Bye for now love Ax
i was diagnosed with hypothyroidism in January this year, i have had fibro about 2 years, my doctor says they are very often linked.
Hi thank you for replying. I had a lump it was then my thyroid problem was found. I have had an op to remove it and thankfully nothing nasty was found. I have to go to hospital every 3 months and take thyroxatene (dont know how to spell it) but feel tired all the time dont know if its throat or fibro. Oh and my weight has gone up which makes me feel terrible.
That was a good moan. Thank you. From the answers I have received it seems your doctor may be right.
Love to hear from you again.
Take care.
Bye for now love Ax
hi Annabell,
I had hyperthyroidism aka overactive thyroid about 5 years ago, (swiftly followed by glandular fever and post viral fatigue) one of the most hideous and distressing things i've ever had, it attacked most of my body, joints in particular and i had 11 out of the 14 symptoms. Thankfully it was successfully treated with meds, although i have yearly blood tests. Sadly it left me with thyroid eye disease which after 4 years of suffering, (vile just vile) it had finally stabilised enough for me to have eye surgery last Nov.
My fibro was linked to my thyroid problems and the glandular fever my doc thinks as i'd always been extremely healthy until then...so thanks for that one thyroid.!!!
Take care
Jan xx
Hi thank you the information was very useful. The part about your eyes was especially helpful because for the past two years I have been going to the eye clinic and they have no idea whats up with my eyes. I have very high pressure but they say it is not glaucoma. I would appreciate more info on this if you feel like it.
Hope your day is going ok. Take care.
Bye for now Love A x
like jan i was also interested in what annabell said about eye disease. I haven't heard of it before.
I have dreadful eye pain, as well as very poor sight & blurred focus, yet they cannot find a cause. I have under active thyroid but it has previously swung the other way so they have to be very careful with the amount of levothyroxine they give me.
My weight is shooting upwards but I'm not surprised, I'm so lethargic & can't be bothered to eat, then I pig out on chocolate - then feel worse!
Oh joy x
Hi your reply just sounds like me its a mirror image. I cannot believe that doctors dont marry this up. It seems they dont look at the notes or the prescriptions. I am going to the eye clinic on tuesday and I feel like telling them but dont want to tell them their job.
What do you think
Take care.
Bye for now Love A x
Hi my optician had been keeping an eye on the pressure behind my eyes for some time because i take steroids for lung disease and they can cause you to lose your peripheral vision . my pressures are raised but not due to glaucoma he said . when i started with horrendous pain behind my eyes and blurred vision he said it was a symptom of fm as we have muscles behind our eyes that it affects . he px me eyedrops as he said fm can cause our eyes to dry out .
Hi yes I have eye drops for dry eyes, its the significance of the thyroid bit that concerns me although you would think the eye hospital would put two and two together and realise it is the fm. I dont have eye pain as such but I have very bad pain in my temple. This scares me because of stokes. What next.
Sometimes we put everything down to fibro this also worries me.
Thank you for your help and hope you have a good day.
Bye for now Love A x
Hi Annabel and Cobweb,
hope you don't mind me replying to both together but as you're both interested it seemed the best way.xx Sorry for late reply, i usually get emails when someone comments on a post but this doesn't seem to be working of late.
Thyroid eye disease... check it out on the internet, there is a lot of info there, different sites giving slightly different info but all a variation on a theme.
I was told it was directly caused by my over active thyroid, BUT...the consultant dealing with my thyroid problems at the time said some get it some don't, and some people who have NOT had thyroid problems can get it for some reason, but it's more likely to strike people who have had thyroid probs.
I was just one of the unlucky ones, did i ever know what it would end up like!!!! I used to get so distressed and upset some days, but even crying was sooo painful.
It started out in 2008 with blurred then double vision, so strange as it was one on top of the other, not side by side as i thought it would be!!!
I went to the opticians origionally as of course i didn't have a clue what was going on, and he immediately referred me to the docs for an urgent hosp appt...this was January...eventually managed to get an "urgent" appt in April with the orthoptics consultant.
By then the symptoms were far worse, dry gritty eyes, pain moving my eyes, (left one was worse), extreme light sensitivity, continual, well it seemed like it, eye infections and conjunctivitis, my writing was no more than scribble and using a keyboard..well!!!!, hit every key but the one i wanted, no surprise really. my eyes were so excruciatingly painful and i was really frightened.
He diagnosed T.E.D and sent me for various scans on my brain and eye orbits, just to make sure it was nothing more sinister..ie a tumor.
Nothing sinister was revealed so T.E.D it was, i had to go with the meds and eye drops offered and have a prism fitted on my specs..seemed to alter every 6/7 weeks when it was really bad, slowly..very slowly is began to halt a little and finally after it seemed to stabalize i was sent to Leicester hosp in Aug 2010 as that is the nearest (2 hour public transport trip each way) that dealt in the surgery i needed.
i hope the above helps you a little ladies... it is distressing when you know there is something going on but not what it is, i always think once you know you can better deal with it.
It can also cause glaucoma (or type thing i personally thought, as my pressure is ok now) due to the pressure/swelling building up behind the eye.
If you want any more info please don't hesitate to ask, if i can help i will
hugs to both and take care
Jan xxx
thanks Jan, I looked up thyroid eye disease after I saw your posting. My problem is that I have almost everything that you describe but NOT overactive thyroid or bulging eyes. My thyroid is underactive, but my eye problems have been worstening for a couple of years now. The pain is indiscribable, I am extremely light sensitive & have to wear dark glasses even indoors when no lights are on. I use eye baths & eye drops but they only help for a few minutes.
I spoke to the optician again today because my vision is so poor & I'm squinting so much, but they (politely) just shrug & tell me that theres nothing they can do. It's driving me crazy!
I've got a bloodtest on Wednesday so they might alter my levothyroxine but I suppose I'll just have to keep researching - I don't believe it can be normal for my eyes to hurt so much & continuously!!!
thanks anyway for explaining.
cobweb xx
Just a thought cobweb....bulging eyes do not necessarily occur, mine was only slightly and only i really notice it.
Light sensitive drove me nuts, i had reaction lenses, clip on sunglasses and a golf visor type thing to stop the light getting in the top of me eyes which was the worst thing, especially for months after surgery.
I often said over the 4 years, just put me in a room with a small candle and that will do me...horrible.
Is it possible you are allergic to the preservatives in eye drops, i can only use preservative free drops, which on one lot of pressure relieving drops they wouldn't prescribe as they were tooo expensive...what's the point of putting something in my eyes that is going to give me an allergic reaction!!! on top of everything else.
I really think you must persevere with the eye problems, you know something is wrong, you should get the help you need to find out what the problem is. If the optician is no help, keep on at the doc, it was mine that referred me to the hospital, a damn nuisance, but you need to get to the bottom of it, it really is no joke and made me very miserable at times...well most of the time!!
I really sympathise and empathise with you as i know exactly how you are feeling.
Want a moan ...feel free...been there x
Take care
Jan xx
Hi thank you you are very helpful Have been to the eye clinic today. The consultant told me I am at risk of glaucoma and have to have eye drops on a regular basis. Mentioned thyroid and he said "dont think you have this as your eyes are not bulging". Pressure was high again but not too bad. I also mentioned fibro and was told this could be a factor, basically I was fobbed off saying 22 was normal, I said they do alter the last one was 26 he said they can vary which I accepted. Up shot was that I have to go back in a year.
No further forward but never mind we are used to that. We put everything down to fibro the question is - is it.
Hope you have had a good day. Take care
Ps hope you can understand. A bit of fibrofog.
Bye for now love A x
Hi Annabel,
Hmmm seems they have a bulging eye fixation!! I've had the pressure drops Timaloptol or something...luckily mine seems to have cleared up now as it was associated with the eye disease. will get a good check over when i go back to the consultant in Oct.
If you're not happy go back to your doc, i know they fob you off and try to lump everything under the fibro umbrella...makes me a bit wary. They only "think" it might be to do with fibro...well say that when you've proved otherwise!!
Fibrofog...no worries..a place i visit most days to some degree or another. 
x
have a good day also
Take care
Jan xx
T hank you I cant ell you how good it feels to know we all try to help each other. I get to the stage I dont want to go to my GP because I dont think she can do anything more for me. Going to hospital in September will have to get into their ribs - if the doc has time ?
Hope you are having a good.
Bye for now Love A x
hi there...yes im another one with an underactive thyroid....thyroid desiese does seem to be linked with fibro...cant believe how much trouble the bugger can corse!!!!keep well as u can ..hugs xxxxxxxxxx
hi shopaholic, I hope you're getting more luck getting your levels down, I feel dreadful ( more than usual ) but it was me who had to insist on the test, I knew that my thyroid was too low, I could feel it. My thyroid is very unstable & swings from under to over now & again. I just wish they could get it level!
take care
lots of fibro hugs xxxx
Another thought cobweb....on a roll today lol, if your thyroid swings under/over see your doctor and mention your eye problems, also tell your hospital consultant if you're under one.
Really hope you get something sorted, i absolutely know the feeling.
On top of wretched fibro this is the last thing you need.
take care
Jan xx
14 years ago i was struggling mentally with a difficult partner and 3 of my 4 lovely kids. I was so ill a year later and a few times triedto end my life and was advised not to continue with my pregnancy at the time. I never got over this, and was put on stronger antidepressants. Year later I fell pregnant again and that was a total shock as id had no symptoms of pregnancy and normal menstrual cycle. I was at 16weeks gestation and was told to stop my pills as they would be dangerous to the baby. I thought this was like locking the gate after the horse had bolted! Anyway istopped them and gradually declined both physically and mentally. I had a lovely little boy and begged for a sterilization which I didn't get till be was one! My doctors decided after all this time to do a blood test. My thyroid was dangerously low and had a panic call from my GP to go to the surgery. When I studied underactive thyroid, I was appauled that it hadn't been picked by them years before!
Now a days I still have similar symptoms but im only on 75mg and tests show that's fine....which brought me to be diagnosed with Fibro and Spondilosis. I'm still treated for depression (which my doctor is not surprised n says he would be depressed with a health record like mine!) haha charming!
I do hope your thyroid is sorted before it makes you very ill.
Take care Annabel xx
Hi thank you for replying and I am so sorry for all your heartache. We put our trust in the medical profession but sadly sometimes they are wrong. The doctor at the thyroid clinic says my blood is ok and that she cannot raise my treatment. I am on 50 mg and cannot understand this. I have all sorts of problems, my weight although I do not eat enough missing meals all the time, I do eat chocolate but this is comfort eating, I know this will put weight on but I need something to cheer me up, I have hot flushes and my hair is falling out. I am to go back in September and dont know which way to turn. I get no answers only my blood is ok. To top it all I have panic attacks frightening my husband to death. He is scared to leave me.
I dont usually go on about my problems so thank you for confiding in me to enable me to tell them.
Hope we talk again. Have a good evening and take care.
Bye for now Love A x
i have suffered from hypothyrodism for 16 yrs and the level that i have taken has been up and down like a yo-yo over these 16 yrs! the highest amount that i have taken was 325mg a day before i was pregnant and then they reduced it too 150mg whilst i was pregnant. i have been asked to be refered to a specialist in the past as i feel sometimes that the tablets are not working but they have refused to do this! i was really quite ill a few years ago as i ran out of tablets and due to working full time and being out of the house 14hrs a day one thing led to another as i wasnt able to get a repeat prescription and before i knew it i was really ill and had to take quite a while off from work and to be honest looking back that could have been the start of it all! when i started my current job i was honest with them stating that i had an underactive thyroid and ibs etc but only a week into starting there i was hit with extreame fatuigue, problems sleeping, tingling in my arms pains all over thebody even brushing my teeth was an effort! now i know that it was fm that was causing this and i have had a fair amount of time off at this job too! i hope you get the answers that your looking for soon and the nesecary treatment as from experience i know how ill you can get with this. i used to laugh when i was told that if i didnt take my throxine that i could go blind or even go into a coma and or die but its true it can happen i just thought they were scare mongering!! im now on 200mg daily and this higher amounts works for me at least i dont have to worry about that!
take care and let us know how you get on
gentle hugs TB xx 
Many thanks for replying. You certainly went through the mill and am glad that you bare sorted out. I didn't know about the things that could happen if we stopped taking the thyroxine. Scarey stuff. Any way September I hope will sort me out.
Will certainly let you know. By the way I think you are a hero going to work. I know what its like and its no fun. Bed is the only thing we can think about but just carry on.
Hope you are having a good day. Will speak soon.
Bye for now Love A x
grrrr i cant believe i just did that i had just finished writing a reply to you and i pressed cancel instead of reply!!!! :O(
in short i think i said that im no hero but thanks for your kind words your right its no fun and bed is all i think of......im sure my friends are going to stop asking me out as recently i have been able to make any of them 
im just to tired and to be honest it hurts when i am getting readdy and i start shaking whilst im getting ready and in the end i think is it worth all this? not good!
september is not far away now so fingers crossed that you get some answers.....keep taking your thyroine cause it does help although we think it doesnt as i found out the hard way it dooes!
speak soon and take care, gentle hugs xx
Hi thank your for your reply. I know what you mean about friends they do get fed up. I have been diagnosed for about 5 years now and my friends have just drifted away, My long term friend didn';t even come to see me when I have the thyroid op if really hurt me and I told her I didn;t eant to see her anymore. This was february I have n't heard from her since. Even on my birthday. She obviously did not understand how we feel.
Well have a good day must try and do something.
Speak Soon look after yourself.
Byre for now Love Ax
A x
thats soo sad hun...is there no way that you can contact your closest friend? yes she let you down, but why did she not come and see you? was she scared? i know that she should have been there for you as you would have been scared :O( its so unfair.
what about you try writing her a letter and how you have felt since she last let you down as a friend/when you last seen each other. (this is what i would do and may do also) but we can only lead them to the water so to speak, but we can force them to drink and i feel sometimes that no matter how much we try and explain some people just dont get it, but we should always give them the chance in understanding, dont you think? if you have already done this then i dont know what else to try and suggest as a true friend would/will be there for you no matter what!
well if ever you want to rant moan speak what ever just message me aand i will always try my best and be there for you!!
take care and you take of yourself too
gentle hugs xx
Hi you really are very wise your thoughts made me feel so sad. Thank you for caring. I suppose she is as stubborn as me. When I told her I didn;t want to see her again it was the last straw. For a while she seemed to just pop in to my house when she had been somewhere else with another friend saying they had just been for coffee or the pictures I felt as if I had a disease she never asked me to go anywhere for a long time. We have been friends for 62 years been through school, work and everything together whatever was thrown at us. Then when I became ill it seemed she cared but at a distance. I think of her every day and really miss her but as I said I am too stubborn. I will send her a card on her birthday in December and I know she will get back in touch. The thing is do I want her to, will things be the same. Who knows.
Anyway thank you for all your support.
Hope your day is going well.
Take care Bye for now Love A x
hi A x
im sorry for making you feel sad this wasnt my intention
i think you hit the nail on the head there you are both very alike..stubborn even and for all you know maybe she has thought about you every day since you said this too her and she will probably miss you too.
when i was younger i had a close friend and she stayed next door to me but lived in the next street (my backgarden ran to the next street) we didnt go to the same schools but spent alot of time with each other and as we grew up we spend most weekends or at least one night together. yes we would fall out but make up realtively soon afterwards (i think we were both as stubborn as each other too) but there was always rumours spread about the town that we both stayed in and these were always untrue but were believed by others. it was this so called friend that was saying them so on after a particular night out in the morning i recieved a call from a mutual friend telling me what the latest rumours were. i was so angry with this person that i got dressed and went to her house and had it out with her there and then.
i never spoke to her again after that night untill about 11 years later (by this time she had had a family as had i. i had often got on at my parents for telling her about me and my life as if i wanted her to know i would have told her myself! i was told that she has changed but i said lepoards never change their spots!!!) it wasnt untill my 30th birthday (6yrs ago now) that i was out and so was was she i puleed her aside and said lifes too short we have missed out on so much and lets just build a bridge and get over it!!! so we did we speak but thats about it as i dont see any of my friends really as life and feeling so rubbish and tired is making it really difficult.. i wish you all the very best on what ever you decide to do it may take a while to get back what you had but will be worth it in the end..dont you think? if however it doesnt then she wasnt who you thought she was do you think maybe that it was her coping mechanism to cope with you being ill that she backed off?
on here is great cause everyone ison the same page and understands, sorry i have gone on abit
im having yet another low and sore day but not to worrry
take care, gentle hugs x x
Thank you once again for yhour wise words. You did not really make me sad it was just the truth perhaps I just did ;t want to hear. Your friend really let you down and I think when this
sworry must go had some bad news xxxxx
hope everything is ok A x
let me know you can private message me
sending you hugs and thoughts are with you no matter what the bad news is...xxx
Wow tinks that is a high dose! I didn't realise it went that high without surgery? Yeh I was told the horrible side effect too.i figured nothing could be as bad as I was befre! Like Annabel said, hot n cold, fatigue, no appitite the ravenous but for carbs! Same as FM my hair used to fall out so bad I was scared id be bald! Thankfully it was very thick and a lot of it to cope with such loss. It still comes out in handfuls now but not quite as much. I found that I had a 'foggy' mind too before I was diagnosed with thyroid but looking back im wondering if it was all the start of the same thing colectively then??? Who knows. My battle now is with the job centre and ESA! Oh such joy! I think fibro can be easier to cope with than them lol
hi flips,
i have in th epast also asked for surgery as thyroid cleaarly doesnt work and i have to take tablets for the rest of my life with or without it but i waas told no that this was something that they didnt do when you have an underactive thyroid!!!
my hair still falls out but i have been assured that this is normal......just as well i have thick hair like you otherwise id be keeping my hair that falls out n making a wig from it well maybe not especially now as i am badly going white and i just dont have the strength to get it recoloured ( i bought a hair dye months ago and still havent done it i will wait a few more weeks and go to the local college and get it done as its a fraction of the price) yeah im wondering that too but as you who knows
i have reaad that people are having a hell of a battle with the JCP (job centre plus) and ESA and in a way im kind of glad that im still able to work although i do struggle with 30 hours but i will keep plodding on with it. i am actually contracted to do 37hours with late working a weekend working but i have struggled with this from the start and recently got family friendly hours but due to the way i have been feeling lately i only managed to weeks of full time hours and have gone back to working 30 hours mon-fri with no lates and no weekends. i will hve to readdress this though and see if i can apply for those hours to be permanent now but will say what atos have to say when i am refered to them through my work!!
i hope you have plenty support to help you with your battle and yes sometimes it will seem that iits easier to deal with health issues such as fm and hypothyrodism annd such others than battling with the dwp and atos and other government dep
Good luck n hugs x
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