How many people have been diagnosed with Fibro/ME/CFS?

[Jeannie]

Just wondered how many have the above diagnosis. I sometimes despair as Dr Skinner certain its my thyroid where as big wide world along with many doctors including endocrinologists think thyroid treatable, not a disability and can't cause the above mentioned conditions or should I say symptoms.

[marmitelion]

I have been diagnosed with Fibro after being repeatedly told its not my thyroid causing my problems. Strange that I'm on 50mcg of Levo then after antiobodies > 1200 and T4 out of range. But its all Fibro apparently...

[sporty333]

Yes I was diagnosed with m.e 14 years ago but think it was adrenals and thyroid all along. A diagnoses of those are just to get you off their backs/no real treatment option.

[Christabel]

Fibromyalgia followed hypothyroidism after about six years. (Two frozen shoulders inbetween).

[betty]

Hi

Yes I have been diagnosed with FM and Fibro, I continually experiment with my meds to find the answer and am still looking.

[betty in reply to betty]

Should have said Cfs and Fybro x

[fierysue]

Hi!

I was diagnosed with fibromyalgia 13 years ago, 12 years after being diagnosed with underactive thyroid. I was wrongly medicated on levothyroxine until October this year. i have started on armour thyroid and increasing it slowly. Some of my thyroid symptoms are easing but not the pain of fibro yet. One comment on here was to be treated with T3 alone. I may resort to that if the armour alone doesn't improve it. The fibro is a horrible condition, much more debilitating than most people realise I think. It has robbed me of my job (i was a physiotherapist) quality of life and any ability to plan anything much further than the next few hours so I do empathise with you. I hope we all find a resolution to this aspect of hypothyroidism xx

[sarahstevenson]

Hi Jeannie

I was diagnosed with ME / CFS in 2010 when really struggling with levo. Am much better on T3 only but don't think the dose is right yet. NHS say I am optimally replaced now with 30mcg T3 and ALL remaining symptoms are ME/CFS.

I struggle with bizarre shoulder and other pains and the NHS physio gave some inadequate exercises to help.

My mum was diagnosed with polymyalgia rheumatica ( is that similar group to fibro?)and was hypo. Happy finding out !

[shaws Administrator]

Before the thyroid gland blood tests came into force, people were treated on clinical symptoms alone. It was only about ten years later that 'New' diseases were named

ME.CFS and fibro.

This is from Dr Skinne's website and if you wish you can sign his petition. This shows how he came to be involved in thyroid gland problems - he is a Virologist.

worldthyroidregister.com/Go...

How many doctors/endo's say we cannot possibly have a thyroid gland problem as they diagnose us with the TSH blood result alone. That's the reason for continued suffering of many.

web.archive.org/web/2010103...

some of the link in Dr Lowe's archive may not be available but you can get lots of info on the top and side of the page.

[Hidden]

I was diagnosed with fibro three two years after thyroidectomy and feeling awful on levothyroxine. I was given sleeping pills, morphine, tramadol, you name it. Stopped the levo and started NDT, have no trace of the fibro now and no need of their poisonous pills.

Dr Skinner was right.

[Cee123]

I was on 250mcg of levo and still felt unwell, my gp wanted to diagnose me with ME and CFS and told me theres nothing else to be done. I told him that im only 36yrs and i dont want those diagnosis and that im going to try other Thyroid medication on my own and with guidece from dr s. 5 months later i am on t3 only and feel nearly better!! I havent had a normal period in 10yrs plus and ive had 3 now!!! My gp is not happy though. My mum has been diagnosed with fibromayalgia, ploymayalgia, me, cfs, depression, high blood pressure, artiritis, high colesteral and carpel tunnel all within the last 6yrs. Her thyroid level show high in range tsh and low in range ft4 and yet the specialists dont think her problems are thyroid realated but are baffled why she doesnt seem to be getting any better with the full fharmacy worth of medication she has to take??!! Unfortunatly she's not as strong headed and determined as me so wont question anything. X

[ging]

Why are doctors happy to prescribe endless drugs with awful side effects which often ineract badly with each other yet cannot prescibe levo - which is not a drug???????????????

[hymermad]

Yes I was diagnosed with fibromyalgia/CFS and then a few months later found to be hypothyroid. I am convinced they are one and the same. I see Dr S and he is an expert in thyroid problems, my GP says my symptoms are nothing to do with my thyroid diagnosis!!! How wrong could she be? Silly woman!

[bunny7872]

Diagnosed with ME/CFS in 1987, 3 long term flare ups which knocked me flat for months over the years (usually stress related), Graves Disease diagnosed Dec 2011. Not that suprised as both autoimmune as is PCOS & Endometriosis which I also suffer from.

[shanmoo]

I was diagnosed with fibromyalgia 8 months ago, although problems started around 7 years ago, gradually got worse. They actually looked at my thyroid first, which was 2 years ago and found I had had an underactive thyroid, but actually was Hashimotos. The endocrinologist said that the Hashis was not causing any of my symptoms. Possibly right. I had a fall on my spine some years ago and then another one about 4 years ago which seems to have led to the fibro going full blown. My thyroid does swing between normal and under. Ive just wrote a post saying that I actually dont seem to have many thyroid symptoms. And Im terrified of going on levothyroxin. I will avoid it as long as I can. I dont take anything for fibro pain, Ive learned to tolerate it, whereas migraines I cant and apparently thyroxine causes headaches, just dont need that

[Essybabe]

I was diagnosed with ME/CFS in 1993. All thyroid labs have returned normal over the years. I have an appointment with my GP next week for a referral to Dr Skinner. I don't want to get my hopes up, but I have almost every symptom of hypothyroid. I'd love to hear more similar stories - hopefully with positive outcomes.

[Hidden]

I'm not sure if we've had a poll about this,actually I was just looking to see if there was one!

Yes I refused the diagnosis as I'd just had half my thyroid out. Co-incidence.

Have you had a look at today's Scottish petition video? Jx