When I had serious fibromyalgia last year my GP wanted me to take a muscle relaxant and an anti-depressant. I was not very receptive, more and more of us are being "diagnosed" with similar thyroid symptoms and having them treated individually, this is pointless and endless... get the thyroid regime, supplements and diet right and we shouldn't HAVE any symptoms..
My fibromyalgia went away when I pumped Magnesium Citrate for a week and took a drop of iodine in my water.. I know it's different for everyone but treating symptoms rather than getting the whole thyroid management right is a colossal waste of money and will not lead to a better quality of live for patients... I am deeply worried that our doctors are getting thicker.
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Redditch
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There must be something we can do... I want to start a monthly clinic group at my GP surgery for their patients with thyroid.. if we can get enough data from groups like that saying "look 60% of the thyroid patients have sinus or IBS or unexplained joint/bone pain" maybe we can start changing the thinking. We need to find any correlation between any of the symptoms and folate, ferritin or Vitamin D deficiency or Gluten or Magnesium or whatever. There is never any research to make us feel better because there is no drug money in our supplements an diet changes, it's disgraceful.
Have you heard of this book? It has been life saving for some many people. I just started, OMG, I thought I knew so much about this subject, bc I am relelenless patinet and I am also an RN and I have learned so much.. it really makes sense.. its what we are saying, its a symtom, find the cause.. this book, is just amazing and I cant wait to read more and find out what things I can do.. amazon.com/Medical-Medium-T...
‘Fibromyalgia is a symptom’ I’ve always been sceptical about it, esp as over the last 10yrs it’s been mentioned to me on numerous occasions but I have always said No! I don’t have that it’s my thyroid. But ofcourse I may have Fibromyalgia but the cause is either my thyroid or lack of vitamins or both. But what my Dr wants to do is label me because I’m a pain in the arse!
I too would love to start a support group at my local surgery but for me I feel that for whatever reason the medical profession wants to keep us uneducated and are not willing for us to be strong in numbers because then they can’t control us. What I don’t understand is that if we were all listened to and diagnosed properly it would actually save this country, from mental illness, days lost at work, heart disease, Alzheimer’s. For me personally I would be a better parent which in turn makes for better children ect ect. It’s just too far reaching be able to name everything that would improve if only we’d stop wrongly labelling.
It's really depressing, isn't it? Maybe we should get T-shirts printed. oh forget that we're never warm enough, Fleeces printed... Don't treat my symptoms, treat my thyroid condition! Patients' campaign for regular and thorough testing of what actually matters
This is my first time replying on this forum and Im not sure if you are notified, like in FB, when there is a new comment.. So I just replied to the call above you.. I copied and pasted.. Just let me know, if if anyine can let me know how the notifications wok for comments ans replies Have you heard of this book? It has been life saving for some many people. I just started, OMG, I thought I knew so much about this subject, bc I am relelenless patinet and I am also an RN and I have learned so much.. it really makes sense.. its what we are saying, its a symtom, find the cause.. this book, is just amazing and I cant wait to read more and find out what things I can do..amazon.com/Medical-Medium-T...
Thanks, no I hadn't heard of that one, my bible when I was diagnosed was Barry Durrant Peatfield's "Your thyroid and how to keep it healthy" without him I would never have considered that Levothyroxine was poisoning me and sought alternatives.
I am so very lucky that I had a supportive partner who could read everything while I was in a heap on the floor, I had 5 months basically in bed and now, apart from almost permanent sinus issues (which I had a child anyway and are really not an issue except for on flights) some gut issues and sensitivities and the odd bout of fibromyalgia when I've not been taking care of myself, I am basically good.
I can work again, which is important for my self worth, the brain fog has completely gone, and in the mornings I am super-charged and ready to conquer the world, although by 4pm I am really flagging, and I haven't quite worked out how to manage that because splitting the dose seems to make my mornings less dynamic.
I take a ton of supplements, Vitamin C, cod liver oil, Vitamin D3, Selenium, Magnesium Citrate, L-theanine, green tea, co-enzyme Q10, DHEA, and a thyroid supplement mix called Thyroxite Advanced Support. I add a bit of iodine sometimes too.
And yes, you just type reply and it will come up, unless a moderator thinks you've been naughty in which case it doesn't.
Just over a year ago a GP suggested an expensive talking therapy for FM/CFS/IBS ...after she ran out of ideas!
Stupid idea!
I was diagnosed hypothyroid about 20 years ago and given levo which never really helped so I just tried to live as normally as possible until just over a year ago, when I could barely function and I gave up believing that, "doctor knows best"!
Meanwhile I'd had numerous scopes scans and treatments to no avail.
In desperation Istarted researching and found the answers I'd been looking for....for nearly 40 years.
Hypothyroidism/ DIO2 heterozygous/ RTH (resistance to thyroid hormone)
Not this syndrome or that!
Eventual treatment after much trial and error and now aged 73...100mcg T3 in one daily dose because of RTH.
Result...considerable improvement but I wonder how much better life might have been for me and my family if a knowledgeable medic had started to join up the dots when at the age of 30 symptoms first arose.
So yes, I am cynical about the ability of medics to correctly diagnose and treat thyroid conditions.....as are most here. Many of us have had the "syndrome" tag diagnosed.
This appalling situation has been taken to both Westminster and Holyrood with only minimum impact.
The people with the power to change things have their heads stuck deeply in the sand....they might lose face if they emerged from that state of avoidance and recognised/accepted that not every thyroid patient responds to the standard standard treatment foisted on us all.
They are not "keeping us uneducated" as Paula6 suggests, there is often nothing to stop us educating ourselves - the problem is that many of them lack the necessary education/ability
Optimal nutrients alone will not cure a thyroid malfunction but will support recovery with the appropriate thyroid hormone treatment.
Poor thyroid function affects the whole body...instead of a correct diagnosis many patients are labelled with one or more syndrome be it FM, CFS, IBS and so on.
These symptoms may exist but in many instances they can be attributed to a thyroid condition.
How this closed-minded mind attitude is to be changed is a monumental challenge and needs to start in the lecture theatres of med schools.....but when!
We need to rant, we all do... think of the lost potential of all the thousands of let's face it, mostly women who have not been able and are not able to contribute their best because their condition is not managed well enough.
I am simmering, when I was at school (a very nice all girls, selective posh place) the careers officer told me that my personality suggested "Leader of a revolution" as my career fit, or "delivery driver" if that didn't work out.
Maybe it's time I lived up to my potential and devised something... I really want us to get research done, out problem is that we all KNOW this stuff but there is no evidence other than anecdotal. No research is funded because there is no pharma money to be gained over the cash cow that is levothyroxine. I tried writing to the chancellor a few years ago explaining that I pay £50,000 a year plus in income tax when I'm working and there are thousands of us that can't work that could contribute if invested a small amount in.
Must win Euromillions and set up our own research institute...
As I've stated many times on this forum, I fully agree the medical community (starting with GPs) is useless for preventing and diagnosing all illness. Our family doesn't use it - except to get a few, allowable tests done under NHS.
The solution? A radical change in healthcare provision worldwide eg as proposed by ANH (I previously outlined on this forum).
The chances of it happening? Nil whilst Big Pharma rules.
ANH has already worked it out, in my opinion. Hopefully it's blueprint will succeed.
My family's given up on conventional healthcare. But the right healthcare (natural) does exist albeit at a cost and that's what we've chosen. Our health can't wait for conventional healthcare to catch up. Asking conventional practitioners eg GPs, to adopt natural is fundamentally flawed. Hopefully natural will be funded by NHS one day but, as J say, we can't wait.
ANH International, a natural healthcare organisation which has produced a blueprint for healthcare and is trying to get it accepted by UK healthcare bodies/Govt. In essence, I interpret it as giving patients the option to get to root cause of conditions via naturally-focused support alongside conventional, drug,-based option.
I agree. I had a full blown ME diagnosis with counselling and everything, when In fact it was a major symptom of me about to go into a hypo coma (which they also sorted but not after being fobbed off). I nearly died.
I don’t have ME, I know this deep down because when my thyroid is stable, my fatigue is manageable enough to function relatively sufficiently.
Bless you for your resilience in this matter but it's like giving you a lesson on how to take aspirin to ease the headaches of your brain tumor instead of cutting it out or giving you radiotherapy.
I know - I must have cost the NHS thousands of pounds - mine was not only thyroid but low cortisol testosterone progesterone etc. etc. - no way did they want to know about about that either.
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