Thyroid UK
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Help for a friend who has been diagnosed with fibromyalgia

Hello All,

A friend of mine, male, aged 43 is really struggling with his diagnosis of fibro, and has got to the desperation stage. I know there are definite links to Fibro and Hypothyroidism- can anyone point me to anything i can help him with?

Many Thanks and Love to All

Sheenah

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Has he done the tests that we recommend to people here? Thyroid hormones and nutrients to start off with, and see what pops up?

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And has he asked his surgery for any blood test results including reference ranges from the last few years?

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Thanks Humanbean - This I do not know - I will try and find out.

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I was diagnosed with Fibro back in 2000 during a Private Consultation with a Rheumatologist. Nothing prescribed - thankfully. On moving to Crete in 2004 - I was diagnosed with Hashimotos in 2005 and as treatment progressed and improved and I kept learning more - the pain receded.

He may well have an in range TSH and FT4 - but it is the FT3 and Anti-bodies TPO & Tg that need to be tested. Low T3 Syndrome is often implicated in Fibro - have a google ! .... and as you know rarely tested with the NHS.

Low VitD is also involved and results need to be over 100.

He is blessed to have a friend like YOU :-) x

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Thanks Marz - that is very nice! I try and help where I can - so many people are like mushrooms - kept in the dark and fed Bull***t!!

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They are everywhere - on Masterchef - Question Time - in the crowd at Wimbledon and elsewhere in the world. it is time Docs went back to basics and LOOKED at their patients and put their screens away :-)

Good Luck ! I find a good way of introducing thyroid issues to folk is to emphasise how important it is to rule it out :-) To think of it as preventative treatment - preventing all those ghastly things Big Pharma want to give you pills for - instead of finding the real cause ....

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How do you know they are on Masterchef?? (tee hee)

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i watch UK programmes through VPN - and going by the visible signs and symptoms many are screaming HYPO at you everywhere :-) It's alarming. I was once told by a Greek Doc that having two necklace type crinkles on the neck is pointing to a thyroid issue - mostly how I can see so many Hypos there are out there :-(

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Wow!! I will keep an eye out for that one! I already look at everybody's eyebrows!!

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Never knew about eyebrows till very little while ago. I’ve been whinging about mine for ages!! 😂 may have to get them done.

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Here is a link to Dr Sarah Myhill's website on Fibromyalgia. Hope it might provide some useful information.

drmyhill.co.uk/wiki/Fibromy...

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Thanks Cassie - that is a great article and I will pass it on to him. Another problem I believe he has is dyslexia, looking at his handwriting - he says he cannot concentrate to read, so I will gather all the information and put it as simply as possible.

I have an advantage (sometimes also a disadvantage) that I run a Centre for people with learning disabilities and see many staff who support their clients every week. Hypothyroid is such a massive issue among them that I have printed off loads of the Thyroid UK's signs and symptoms pages and hand them out to everyone I can. I was saved by this forum, and I hope to help other people by pointing them towards it. It is only because of this forum and the people here that I am now very well.

Unfortunately, it is quite difficult to motivate people to help themselves. Many are so used to accepting what their GP's say without question. My friend has been told that he will just have to live with it. But you can take a horse to water, but is up to them whether they drink (even if you shove their heads under the water!!)

Thanks again to everyone!

Sheenah

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Hi sheenah, I am glad you found the link useful, she has many good articles on her website which I often dip into, although she primarily deals with CFS patients - everything is linked!!

Yes, this is a great community I must admit, the cumulative knowledge is amazing, people that pull together can achieve a lot more than the individual. You are doing a great job and I am not surprised thyroid issues loom large. I often think that when people are given certain diagnoses, doctors stop looking.

I know what you mean about how difficult it is to motivate people to help themselves. An in-law of mine, who was diagnosed with an UAT at the same time as me, flatly refuses to accept anything I suggest, in fact she became quite hostile when I said she should always get a print out of her results and not just rely on the doctor's word. Now she is on statins, high BP meds, PPI's and more recently developed back pain, swollen knees, loss of reflexes in her left foot which causes her to fall over - what can you do? She is quite convinced that all the prescription meds are insurance for a longer life!!

Keep up the good work.

Regards, Cassie

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Hi Sheena,

I was diagnosed with fibromyalgia and I can tell you that the cause of mine was a combination of vitamin and mineral deficiencies and a DI02 problem. The thyroid uk website gives details of how to get tested for DIO2. It's important that all the deficiencies are corrected before treating any hypothyroidism, I made the mistake of not correcting magnesium first. I would start by getting a red cell magnesium test, the NHS don't test this, so you will have to get it done privately, I use Medichecks. Then ask the GP to run tests, he needs to ask for FBC, U and E, ferritin, creative kinase, vitamin D, vitamin B12, folate and a bone profile. When he has the results of all these tests, post them on here for advise for helping to interpret them. You can personal message me anytime.

Good luck

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Hi Sheenah

I don't have much time at the moment so here with no comment is an article. I don't have the end, as you will see, but it may have come off this site so you might find the rest on here and I think there are 2 links included. I do hope it helps.

What about Thyroid Hormone Resistance - and I very much doubt anyone in the UK is aware of such a diagnosis. This is a small excerpt as I do know you have disabling symptoms, it would appear. Excerpt:

Dr. Lowe: If a patient has either "general" or "pituitary" resistance to thyroid hormone, this is indicated by the results of thyroid function tests. However, our studies suggest that perhaps 40% of fibromyalgia patients have "peripheral" tissue resistance to thyroid hormone—not pituitary or general resistance.

Patients who have peripheral tissue resistance to thyroid hormone have normal thyroid test results before treatment with thyroid hormone. So, we don't know that they have peripheral resistance until we've treated them with plain T3. (Of course, we treat them with T3 as part of more comprehensive metabolic rehabilitation). A three-part therapeutic outcome tells us which patients have peripheral resistance.

First, resistant patients recover from their hypothyroid-like symptoms and signs only with extraordinarily large dosages of T3 (called "supraphysiologic" dosages). Second, despite these large dosages—which might hospitalize a person who doesn't have tissue resistance—the patients have no indication of tissue overstimulation. (We use various objective tests to rule out overstimulation, such as serial EKGs and various biochemical tests. We also closely scrutinize patients and use various physical exam procedures such as the Achilles reflex test.) Third, although the patients have recovered from their symptoms and signs with high dosages that don't overstimulate them, lab tests show that they have extremely high blood levels of free T3.

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

Two excerpts from another link by Dr L:

"The fact is, however, TSH and thyroid hormone levels are highly unreliable indicants of whose body is under-regulated by thyroid hormone. The levels are so unreliable that the testing should be abandoned as the standard method for identifying such patients."

and

"Many researchers have noted that fibromyalgia symptoms are virtually identical to those of hypothyroidism.[56][57][58][59][60][61][62][63][64][65][66][67][68] Indeed, as my collaborator Jackie Yellin, has shown, the most well-documented features of fibromyalgia are exactly the same as features of hypothyroidism (see Table 1).

Studies by several research teams indicate that 90% of fibromyalgia patients have underlying thyroid diseases.[69][70] Studies by researchers in the U.S., France, Germany, and Italy show that these thyroid diseases include primary and central hypothyroidism and peripheral cellular resistance to thyroid hormone.[57][71][73][74][75][76][78] It’s important to note, however, that most patients’ fibromyalgia symptoms caused by thyroid disease are compounded by other metabolism-impeding factors. The most common factors are poor diet, nutritional deficiencies, poor physical fitness, and metabolism-impairing drugs.[25]

"

When fibromyalgia patients receive effective treatment for hypothyroidism or peripheral thyroid hormone resistance, most are fully and lastingly freed from their fibromyalgia symptoms. Several open but systematic trials and several blinded studies have shown that metabolic treatment including thyroid hormone therapy completely relieves most patients’ symptoms.[16][72][77][79][80][81][82][83] In another double-blind crossover study, researchers reported a positive therapeutic effect on fibromyalgia from transdermal T3.[14] In a randomized double-blind, placebo-controlled study, clinicians used multiple therapies.[13] In that study, as Peter Warmingham noted in an article titled "Fibromyalgia has been solved,"[12] 90% of the fibromyalgia patients used thyroid hormone and 90% improved. These are the only studies in which patients have largely or fully recovered from fibromyalgia symptoms; each involved thyroid hormone therapies other than T4-replacement, an approach documented to fail to relieve a large percentage of hypothyroid patients of their symptoms.

"http://web.archive.org/web/20101030171110/http://drlowe.com/frf/guttler/addenda.htm#Addendum 1

p.s Peter Warmingham has written about the 'Myths of TSH'.:-

thyroiduk.org.uk/tuk/thyroi...

Dr Skinner and Dr Peatfield paid no atte

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