Has anyone who has Graves or any Thyroid problem then go on to develop Fibromyalgia ??

[Scarfred]

I am asking as my brother has Fibromyalgia and the symptoms he has are very similar to those of my hypo symptoms. Please say you can't have both!!! Or maybe my Graves hasn't turned into Hypothyroidism and it is Fibromyalgia !!!

[greygoose]

Scarfred, a lot of people, including Dr John Lowe, believe that 'fibromyalgia' is actually un/under-treated hypo. That is why the symptoms are the same as hypo (and everyone's symptoms vary both in so-called fibro and hypo, you don't have to have a set list of symptoms to qualify! lol).

I sincerely believe that 'Fibromyalgia' is not a seperate disease - for a start, it isn't a disease, it is a syndrome i.e. a collection of symptoms.

Look at the history: in the 60s, Big Pharma developed a synthetic T4 with which they intended to make a maxium of money. They brainwashed doctors into thinking it was the new revolutionary thyroid medication that would replace NDT. They launched a smear campaign on NDT.

However, synthetic T4 did not work for a lot of people, so, they invented the TSH test to prove that it did work. Doctors could then say: your TSH is in range (even if it was way to high for any normal human being because the range was arrived at in a most unscientific way) therefore there is nothing wrong with you!

But there was still a lot wrong with a lot of people on synthetic T4 (not saying everybody, it works for some). So, they invented a couple of new 'diseases' so that they could then say: it's nothing to do with your thyroid, it's Fibromyalgia!!! Or Chronic Fatigue Syndrome (that syndrome again, another bunch of symptoms)!

And nobody could prove them wrong (couldn't prove them right, either, but...) because there is no blood test for 'fibro', it is just the doctor's opinion. And there is no treatment for it, either, except a lot of gumpf that Big Pharma came up with to make themselves even more money, and which probably won't work but will probably do you even more damage so that they can come up with another drug to counteract that which will probably do you more damage...

So, in answer to your question, yes, you can have both, but what that means is that you aren't being correctly treated for your thyroid problems. So many people have found that when their thyroid was correctly treated, their 'fibro' magically disappeared! Perhaps your bother should have his thyroid tested...

Hugs, Grey

[shaws Administrator]

This is from the archive of Dr Lowe who died last year. Nowadays you get diagnosed by your TSH only and most times clinical symptoms aren't recognised. Previously people were given thyroid hormone according to clinical symptoms. Fibro, CFS and ME were named about 10 years after the TSH blood tests were introduced.

web.archive.org/web/2010122...

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

[Hidden]

Grey said it all for me! I utterly and totally agree with every word.

I have Graves scarfred, and had a thyroidectomy so developed hypothyroidism. After a year on thyroxine, the symptoms mounted up and out trotted the diagnosis of fibromyalgia. I now take NDT and have no firbomyalgia. At all.

[PinkNinja]

Similarly with me and my suspected rheumatoid arthritis and my "psychiatric condition" among other things. Even my bradycardia has gone now that I am on NDT. I thought I had tachycardia this morning, but my pulse was a very normal 64! It just felt like it was in the 100's after so long in the 30's and 40's, lol.

It's miraculous how NDT seems to be a cure for so many other illnesses as well as hypothyroidism because, according to the doctors, they couldn't have been symptoms of hypothyroidism because my TSH wasn't high! Oh the holy TSH test, hahaha!

It would be really interesting to do a survey of all people with fibromyalgia, CFS, ME etc and see how many of these devastating cases could be at least partly down to thyroid. I'm sure there are other causes as well but it would be very interesting to find out. Perhaps if it is found to be the case that people with such illnesses have high-ish TSH, perhaps they will start considering a trial of thyroid replacement for those people.

And the TSH, whilst empirically accurate, is not a reflection of thyroid status. My TSH is low even when my T4 is low. When will they learn!

I really hope your brother finds out what is causing his symptoms so he can get treatment soon. I know what a debilitating illness it can be (luckily not first hand!) so I wish him all the luck in the world.

Carolyn x

[editfmrt]

Me too. I have to be careful with my strong opinions here. I empathise with those people that understandably need a named diagnosis but it worries me how many conditions like thyroid disorders or B12 deficiency are missed because of labels like fibromyalgia.

If I'm really honest, deep down, I think too many GPs use it as an excuse to deal with their patients with chronic symptoms. Much easier than getting to the real cause.

I want to shout at the top of my voice don't accept fibromyalgia or any of their invented aliases for a collection of symptoms. There, I said it and hope I haven't offended anyone in the process.

There is always a cause and they just haven't found it either through ignorance or neglect.

[PinkNinja in reply to editfmrt]

No objections from me. I think you will find many people on here who feel the same way; that the doctors use these diagnoses because they don't know what else to do and people are left suffering from very painful and debilitating illnesses that stop them for being able to lead a normal life (my cousin's wife was in a wheel chair with fibromyalgia and needed a carer at only 30 years old ). It is quite worrying.

I also don't like the way they tell you "it's not your thyroid; your blood tests are fine" and in the following breath "you can't expect to feel great; you have hypothyroidism". Which is it? It either is my thyroid, in which case it should be better treated; or it isn't, in which case they should be investigating further!

Even if these diseases are new diseases in their own rights, a cause still needs to be found; not "it's <insert illness>. We don't know what causes it so we can't help you". Pets seem to get better treatment!

Perhaps we should all run the NHS or maybe visit the vet

[greygoose in reply to PinkNinja]

I thought that about vets before, but last time I took my dog to the vets for a bit of stiffness in the back legs, she wanted to put him down on the spot saying he had a slipped disc - and all this without even touching him!!! Didn't know slipped discs were visible to the naked eye... And through the fur... Pft!

Sorry, off subject. lol

[PinkNinja in reply to greygoose]

That's not good! I'd better not go to the vet then. They'd put me down in a heart beat!

Scarfred, I hope you find the answer so you can get well again. We may be cynical about the NHS at times but hopefully you will find the solution. Some people find excellent doctors on the NHS. Please do let us know how you get on

Carolyn x

[editfmrt in reply to greygoose]

Oh greygoose - I know the poor treatment of pets is never amusing but the way you describe it is hilarious. I wonder how many GPs would like to 'put us down' - thank goodness they don't have the option like vets. On the other hand they can just kill us off slowly and without repercussion....

[greygoose in reply to editfmrt]

I totally agree with everything you say, there, editfrmrt!!!

Grey

[zizi]

Hi

I was diagnosed with fibromyalgia in 2000 and put on long term anti depressants. Had a lot of trouble getting off them after 18 months. Had to fight for years to try and get diagnosed with hypothyroid which I knew was the problem because most of the woman in my family have suffered with it and my Mum died of thyroid complications.

Eventually I got a GP to listen and she sent me to a consultant for a full check up in 2011. I actually came full circle because his diagnosis was fibromyalgia and he prescribed long term anti depressants! I had pain everywhere in my muscles and joints and fibromyalgia was the only diagnosis the consultant could offer, although he admitted I didn't actually have many of the 22 specific points of pain to conclusively diagnose fibromyalgia, but my areas of pain were near enough. (He didn't answer when I asked why the diagnosis requires specific points of pain if near enough can be accepted!)

Fortunately, my GP at the time agreed to refer me to Dr S and he diagnosed hypothyroid. Since being on NDT all the aches and pains have virtually disappeared. Fibromyalgia is a syndrome and illnesses such as Chronic Fatigue, ME, IBS and Hypothyroid can overlap in making up the syndrome. All can contribute or be the cause of the syndrome Fibromyalgia or so it tells me in the hospital literature. Most GP's don't seem to know/accept this and diagnose the illness itself as Fibromyalgia and are often quite willing to prescribe with anti depressants or muscle relaxant drugs. Unfortunately in my case they weren't willing to prescribe the one drug I needed for hypothyroid and it has taken a real fight and a lot of money to get it, but it has worked.

[greygoose in reply to zizi]

Well, the hospital literature has got that a little bit confused. Fibromyalgia, Chronic Fatigue, ME, and IBS are all syndromes and syptoms of un/under-treated low thyroid.

Anti-depressants, muscle relaxant drugs, weight loss drugs, statins and all the rest are totally superfluous and huge money-makers for Big Pharma. What all of these symptoms need to resolve them are thyroid hormones (which aren't drugs, by the way).

Glad you got there in the end, Grey

[morebeans]

I was diagnosed with fibro years before my Hashis was confirmed. Luckily my endo reckons there's a huge overlap between fibro, hypothyroid and VitD deficiency, so when my symptoms didn't fully resolve on T4 he tried adding T3 even tho my bloods looked ok. This has made a huge difference to my pain levels, muscle power and brain fog. I still have neurological symptoms, but B12 seems to be making inroads with those.

[Kezzerb]

I found your discussion very thought provoking and this site is helping me understand more and more each day. I beginning to wonder does hypothyroidism occur after having fybromyalgia. Umm no blood test for fybromyalgia no treatment so how can a doctor know it is that. Syndromes are just a way of saying havent got a clue or they know what causes it but if we cure it big pharma wont have anything to treat and make money. Makes you wonder about all treatment for illnesses. It wouldn't surprise me if there is a plant you could grow in your own garden to help cure you. But I bet if there were Big Pharma would stop you and just synthesise it. This world is crap.

[greygoose in reply to Kezzerb]

No, hypothyroidism doesn't occur after having fybro. Fybro IS hypothyroidism.

How does a doctor know it's fibro? He doesn't. He doesn't even know what fibro is. He just says it's fybro because he has no clue what else it could be, so, it's either : fibro, CFS, or IBS, depending on the symptoms.

Because 'syndromes' are a collection of symptoms. But these days they don't know what the symptoms are really of, because they're not taught about symptoms in med school anymore.

They are just taught that there is a pill for everything and how to identify which pill to use - even if that pill does no good or, worse still, does more harm than good. Which so many of them do.

So, yes, Big Pharam would be most upset if doctors were more knowledgable about symptoms and were able to identify the illness and treat it.

Big Pharma is all about making money, not helping sick people, and it's time we stood up to them and stopped taking their b****ing pills!

And you are most definately right: this world is crap!

Hugs, Grey

[Kezzerb in reply to greygoose]

Hi greygoose

So by what you are saying when I was diagnosed with having fibromyalgia, (well at first I was told chronic fatigue many years before) that if they had checked my Thyroid then it may have indicated I had hypothyroidism. I have paid out no end of money going to see private specialist. It puts a whole new perspective on the credability of doctors.

It makes me sick they have made enough out of the NHS they should give something back.

I think they should be made to retrain every 4 months and if they don't they should be struck off.

Love and Peace Kerry

[greygoose in reply to Kezzerb]

That is my opinion, yes. I am not medically trained, and I don't have any documented proof to hand but I have heard of so many people that were 'diagnosed' (although how you can be diagnosed with I syndrom, I don't know) with fibro and then later with hypo and when treated with thyroid hormones their fibro miraculously disappeared! I don't believe in coincidences.

Dr Lowe was of the same opinion. My doctor wouldn't commit himself. He hummed and haaed then said, well, it's something hormonal anyway...

Personally, I no-longer trust doctors - any doctors. But it's not just the NHS. I live in France and the doctors are no more knowledgabe here. I think it's an international problem and, as you said, we can lay the blame at the feet of... Big Pharma!!!

Hugs, Grey

[tracyd59]

Interesting. I've started adding t3 to my t4 over the last month or so, to raise my t3 levels. I'd been having some neuropathy type symptoms for a couple of months but strangely since adding the t3 those symptoms have worsened slightly.

I had a nerve conduction test last week which showed some nerve damage to my feet, but it was only a 5 min chat with the very busy neurologist so I couldn't get much more info out of him. He's referred me for an MRI scan on 3rd April. That's worrying me slightly as now I'm thinking he wants to rule out MS. The prospect of which terrifies me. Not the ruling out aspect, just having the MRI appointment so soon in the game.

Perhaps that's just how they do it in Australia, so I should be grateful I've got an appointment lined up so soon. My neuropathy /joint pain is still mild although it has increased from the level at which it began.

So I don't understand....I'm trying to optimise my t3, yet the pain/tingling etc is increasing. I can't remember who it was, but someone who posted a reply to one of my questions a while ago said that B12 can 'wake up' nerves etc which can lead to tingling etc. Is that true?? Is all this down to the B12 and D3 that I've been taking?

I'm taking 500mcg sublingual methycobalamin, and Vitamin D3 and K2, a B Complex etc. I don't know why all this supplementation isn't helping.

I'm concerned that these new symptoms will be diagnosed as fibromyalgia at some point despite doing all I can to get my thyroid treated optimally. I'm so confused/concerned/scared about what to expect next.