Thyroid UK

People here are really trying to be helpful

You're a great bunch and having decided to not look at this site so much but concentrate on positive mind/body stuff I find that I keep hitting a wall of confusion which I can't unravel. So I come back to it but my mind just cannot take in the complexities of all these chemical interactions ( brain fog and disintegrating memory) and doctors misunderstandings and lab levels being different. Dear lord how do any of you sort it out? I've sent for the thyroid uk book hoping that will help. But truthfully I do not know what to do first. I've been on 125 mcg of levo for 11 years (no thyroid- Hashimotos) but now I read it can effect one's bone density and as I've seen my mother suffer awful pain from extreme osteoporosis I don't want to go that way. I've got pains all around my chest that Drs say is either heart or reflux but that nothing shows on tests and Ive digestive problems from Pernicious aneamia. Who invented these bodies anyway.? They're always breaking down

I'm in Lancashire, does anyone know of a good specialist who can help me sort this out. Also I now see that my daughter is going that way and my sister has been fobbed off with 'your thyroid is normal' when she has bad fibromyalgia and depression.

If our thyroid controls all our chemical reactions, then it makes sense that we could get all sorts of problems when our thyroid is working under par.

Moan over

4 Replies

Hi winschild,

All of us on this forum more or less understand what you are going through. The problem appears to be that 'once upon a time' doctors knew how to diagnose and treat thyroid hormone dysfunctions and they really did. They were taught as medical students the clinical signs/symptoms of hypothyroidism and treated accordingly. Patients were prescribed NDT until well and symptoms gone. There was no fibromyalgia, cfs or ME.

Nowadays we have gone 'modern'. It would appear that medical students have not been trained in the above but only to read a computer print-out and thus diagnose only taking account of the TSH and ignoring patient symptoms. I also believe that Endocrinologists aren't really specialised in the function of the Thyroid Gland but only about the TSH and not signs/symptoms either.

Thus, we have found out to our detriment that if we complain that we may well be given a 'diagnosis' which will be anything other than a dysfunction of our thyroid gland and we have so many sorry stories on this site we could now write an encyclopedia of 'hit or miss' diagnoses with the resultant suffering.

Email on Monday and ask for a list of doctors, one of whom may be near you but a journey may be worthwhile.

If you have had recent blood tests, get a print-out with the ranges and post on a new question.


Winschild, Sometimes one needs to moan and let off steam when our bodies are playing up and the medics can't find out why. It's depressing because without a diagnosis it doesn't seem there is much promise of relief.

There are many cofactors which can cause osteoporosis like early onset menopause, vitamin D deficiency, skeletal build, family history etc. Undiagnosed and untreated thyroid problems will increase the risk but once optimally medicated it doesn't mean you will suffer osteoporosis, although your predisposition is slightly higher. Weight bearing exercise like walking and running can help ward off osteoporosis. Ask your GP to refer you for a DEXA scan to measure your bone mineral density. As you have a close relative with severe osteoporosis your GP shouldn't have a problem arranging a scan.

Re your chest pains, how are your ferritin and iron? I've read that low levels can cause pain in the central rib area. Costochondritis may also be worth considering


Hi Clutter

Yes i've had a scan and I'm normal for my age so far. Ferritin very low (17) though I'm confused about the ferritin iron difference/connection but Ive heard in a few places that deficiency can cause pain.My osteopath is thinking it might be vascular constriction of a vein/artery to the heart. Hopefully hospital tests on Saturday will tell me something. But as for weightbearing exercises; my sister has been a runner, swimmer and gym person all her life but has very low bone density.


Hi Winschild,

what a brilliant moan. What struck me is that you appear to have identified a potential genetic fault within your family and I was wondering if there's anything you, your sister, your mum and daughter are all doing to address the problem of autoimmune disorders and/or osteoarthritis?

Have you raised these issues with your GP and if so, what has been suggested by way of preventative treatments or measures as your mother has already been diagnosed. There appears to be a recent shift in treatment of long term debilitating conditions with the emphasis being moved to prevention so it might be worth doing your research and chasing it up with your doctors. Perhaps going in as a family might help.

I think our bodies are so exquisite and curiously made and it's such a shame that poor genetics, trauma, injury or illness, robs us of their full use and the medical profession are struggling to 'put us together again' because they really don't know and are scrabbling around for answers themselves. Lest we forget, we STILL don't have a cure for the common cold and certain ailments we thought quashed, are starting to come back like mumps.

Knowledge is power and too much or too little knowledge can be a hinderance and potentially a curse but you've already made the important medical links so follow it through and share your findings with us when you can.

All the best.


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