here we go again: For those who have... - Fibromyalgia Acti...

Fibromyalgia Action UK
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here we go again

ShelWhitt
ShelWhitt

For those who have not been following my saga. Been feeling so ill recently , saw only available doc , last week, (not my usual one, as he wasn't available for a month) and she suggested full blood count and ecg. As I was having thyroid test next day she suggested having all done together. Thought at the time, that will never work, they won't accommodate that - I was wrong- very pleasantly surprised they did, but guess what, when I went for results was told - they had not taken a thyroid test, which is what I had gone for in first place. Grrrr. I know she did because I specifically asked when she had taken the bloods; but none the less was told to make another appointment. Wasn't happy. A young 'whippersnapper' (sounds the right word) had a full on argument with me saying no appointment for another two weeks. Eventually I wore her down and am going tomorrow. More stress I could do without. I am getting so desperate now, wonder if anyone knows of a private endocrinologist specialising in thyroid problems and fibromyalgia anywhere at all in the UK, as I am convinced the answers lie with my thyroid. Have been asking my GP about this for years on and off and am always told my thyroid is OK when dosage changed, but I never feel any better, in fact I feel am worse now than I have ever been, and my dosage is the lowest ever. I honestly don't think the GP's or from what I have read even some endo's know enough about thyroid problems.Thanks all for listening, yet again. You are all worth your weight in gold, and been my lifeline over the last few months. Maybe some of you also have similar problems and think there is a link If so I would love to hear your stories. Thanks again. Hugs to you all. x

15 Replies
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Hi

I was diagnosed with fibromyalgia 2.5 years ago, under active thyroid 2 years ago and diabetes 1.5 years plus many other conditions, some of which seem connected. I really hope you get some answers soon. Pm me if you want to. Love and hugs Lynne xxxx

ShelWhitt
ShelWhitt
in reply to Oldham12

Thank you Lynne. I have read a few of your posts so know you are also having a rough time, but you always have time to reach out to the rest of us on here and I for one definitely appreciate it. Thicko that I am what does Pm mean. I will may be take you up on it, when I get a bit more internet time. DH gets a bit sulky when I spend time doing things for me. He knows I am not well, but doesn't really understand and lives in his own bubble of health problems. Sending hugs. x

Hi Shelwhitt

Your story sounds so familiar. I am totally dependant on thyroxine as had undetectable levels when diagnosed.

18 months ago after a routine blood test my Dr. reduced my dose because my levels were high although I felt completely fine and well. Since my thyroxine dose was reduced my health has deteriorated to the point that I had to stop working and I have been diagnosed as having fibromyalgia.

For me I feel almost the exact same way as I did when i had no thyroxine in my body just without the body coldness and I agree with you that Drs. dont seem to have a good understanding about thyroid or fibromyalgia conditions.

I feel Doctors need to listen to and examine patients much more in these cases as in the absence of robust research, we who experience these conditions are the experts and understanding and expertise can be gained by doctors by paying close attention and seeing what works and what doesn't work for us.

My doctor last week gave me a weeks course of steroids which has helped me tremendously and I am now able to function mentally and physically again , hope it lasts now that i am off the steroids.

So Shelwhitt, I understand how you're feeling and its very real and scary, Take care of yourself and lots of love.

ShelWhitt
ShelWhitt
in reply to pony7

Thank you Pony7. Ten years ago I went privately to a rheumatologist in my search for answers, after suffering over 20 years, working full time, living on co-codomol tablets and having periodic physiotherapy, and eventually having to give up work. He, after 12 months of chats and blood tests eventually diagnosed me with polymyalgia and I was put on steroids for a year. I didn't want to go on them but accepted his judgement. They didn't help and after 12 months I was weaned off them. Told is was not poly. after all, but fibromyalgia and referred back to my gp. Then went to a chiropractor for another 12 months, without success. The rest is history as they say. I have got progressively worse since then, and yes, it is very scary. The worse thing is no one understands just how ill I am. Everyone in my circle treats me as though I am ok. I have tried to broach it a couple of times with my family, but it is made clear to me, no one is interested. ( Or wants to hear me moan, would be their version) I know if I persist it will cause a row, as they are of the opinion I am a hypochondriac and feel sorry for myself. Their view is I should just get on with it, there are other people much worse off than me. They are right, of course, which doesn't help.Good to hear from you keep in touch. x

Oldham12
Oldham12
in reply to pony7

Hi

How you are you feeling tonight? What steroid did your Dr give you as I might ask mine about it just to get some relief from all my conditions. Love and hugs Lynne xxxx

ShelWhitt
ShelWhitt
in reply to Oldham12

Not feeling good. It is now 4 am. Another bad night. A few hours of relief would help, but no chance. I think the constant fear is making me worse. I am convinced something major is going on that the docs. aren't picking up on. I know anxiety can produce physical symptoms, but am sure it is more than that. That is why I am asking about links to thyroid. I don't think GP's know enough about it. I am now just stuck with the fibro. and anxiety label. The steroid was prednisone Lynne. Horrible stuff. I can't remember the dosage but I know it took quite a while reducing the dosage in order to come off it. It didn't help me, and I am worse now, ten years on, than I have ever been. Sorry if that is no help, but sometimes different medications can help different people. Good luck in your continuing your search for relief. Sending hugs. x

Oldham12
Oldham12
in reply to ShelWhitt

Hi

Sorry, just seen your reply. No sleep yet, it's a nightmare plus I think I've got a water infection so that's me to the drs!! Love and hugs Lynne xxxx

ShelWhitt
ShelWhitt
in reply to Oldham12

Take care. x

Oldham12
Oldham12
in reply to ShelWhitt

You too. Did you manage to get some sleep, I do hope so xxxx

ShelWhitt
ShelWhitt
in reply to Oldham12

Yes. A couple of hours. But having a bad day, yet again. Feeling rotten. Been for repeat thyroid blood test. That went OK. Haematologist agreed with me she did take thyroid blood two weeks ago. She apologised although I don't think it was her fault. Now waiting, once more, for results. Just been on line to re-order prescriptions and shown OH , yet again, how to do it. Says he will write it down so will know next time. In my dreams. Been saying this for over a year. And, now, the post has arrived. Back, yet again, another letter from from DVLA. He is applying to have is licence extended (due to his dementia). I don't agree that he should, so have copped out. He doesn't agree with me and so is ploughing on with it. He filled forms in wrong. Returned. I had to sort that out. Now there is another problem. I have refused to read letter and told him to leave it, but no. He is now asking me where his driving licence is, when he sent it off with the original application. I have noted this all down in a folder, but can he be bothered to look. No. He would rather keep badgering me to sort it out, no matter how ill I am feeling. We have had yet another full blown row. If I felt reasonably OK, I would just deal with it all, but have forgotten what OK feels like. Now his ipad is broken and he is badgering on about that, and wanting to go out to buy a new one. To make matters worse, I am supposed to be going out on Thursday for lunch, and am trying to convince myself I will be able to manage it for a couple of hours, but OH isn't happy. Keeps saying, not once, repeatedly, you are supposed to be ill but you will be fine when you go out with your mates, leaving me on my own. So, all in all not a good day. But, onwards and upwards, now being asked what is for lunch? Just an insight into someone else's day so you realise you are not alone. Best wishes to you all. x

pony7
pony7
in reply to Oldham12

Hi Lynne

It was prednisalone 30mg for a week. I am still feeling good and finished course a week ago, fingers crossed this continues as I feel back to myself first time in 18 months.

There is a private hospital called Breakspear Medical Group in Hemel Hempstead. They helped me massively 👍

ShelWhitt
ShelWhitt
in reply to Blobby3

Do you mind my asking how they helped, more specifically. Was it fibromyalgia and its complications or was there a thyroid issue as well. And was it an endocrinologist you saw? I am interested but I live in South Yorkshire so it is quite a distance away. Thank you anyway.

Blobby3
Blobby3
in reply to ShelWhitt

That is a very long way indeed. For myself it was because I was wheelchair bound with a multitude of things that despite nhs testing i wasn't fitting into a box.. this was nearly 20 years ago now. I was given diagnosis of m.e. with immune dysfunction. They do deal with people who are complicated cases and who haven't found the treatment that is helping. I dont know if they have have an endocrinologist, perhaps if you rang them for advice or emailed them they may be able to help or point you in the right direction. I know it's awful being ill and you have my sympathy

ShelWhitt
ShelWhitt
in reply to Blobby3

Thank you so much for the information Blobby3. I don't know whether I will take it up, but I will look into it. There are so many of us on here suffering, not to mention all those people suffering who are not on here, you would think there would be specialists out there to help us all. As far as I can deduce there doesn't seem to be any. So sad. Sorry to hear of your problems, I understand ME is similar to fibromyalgia with my limited knowledge, and I am sure we all have wondered about immune disfunction as well. I hope you are managing to cope day to day, with your difficulties, and it does sound as though you have managed to get some positive help.

Best wishes . x

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