Fibromyalgia

[Tillysnanna]

Hello all,

Does anyone else out there think that fibromyalgia is incorrectly treated thyroid problem? It just seems that so many of the symptoms are the same! Muscle fatigue, insomnia, muscle tenderness, brain fog, fatigue and et cetera!

[Mamapea1]

Yes I do, and many others ~ have a read around the forum ~ use the search bar or click onto the posts that your post has generated. shaws usually gives out interesting links to Dr Lowe, who is sadly deceased but was an expert on the subject ~ well worth reading everything on there! x

[Tillysnanna in reply to Mamapea1]

Thank you Mamapea. It's a relief to know I'm not alone in my thinking.

[Mary-intussuception in reply to Tillysnanna]

If you haven't yet had Thyroid Antibodies blood tests then please ask for them asap. Ask for

TPO (Thyroid Peroxidase Antibodies

Tg (Thyroglobulin ) - may not get this one but ask anyway.

ALSO ask for T4, FT4, FT3, T3

and nutrients levels tests of:

Vitamin D, Calcium, B12, Folate and Ferritin.

By the way, I was restricted from posting on Fibromyalgia Forum for suggesting to posters to ask for the Thyroid tests. Despite the fact that the posters were grateful, thanked me and did not complain.

If you have Hashimoto's Autoimmune Thyroiditis you may have had "normal" , "withn range" Thyroid function tests results previously and "no further action". With Hashimoto's bloods can fluctuate. So ask for the Antibodies.

[Tillysnanna in reply to Mary-intussuception]

Thank you so much Mary-intussuception. I find it all so confusing. Think we all need a medical degree!

[shaws Administrator]

Dr Lowe was Director of Fibromyalgia Research Foundation, DrLowe.com and Thyroid Science. He took a blood test for the initial diagnosis and thereafter it was all about how the patient felt on doses which were increased gradually.

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

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

He never prescribed Levothyroxine - only T3 for thyroid hormone resistant patients or NDT (natural Dessicated Thyroid Hormones). Some links:

The following are three chapters. You will have to copy and paste the tinyurl links:-

Chapter 2

tinyurl.com/ya5blrr2

Chapter 3

tinyurl.com/y7ejh9sh

Chapter 7

tinyurl.com/ycxpz565

[Tillysnanna in reply to shaws]

Dear Shaws,

Thank you. I will certainly look up these pages.

[Tillysnanna in reply to shaws]

Dear Shaws.

Oh my goodness! Just a brief skim of chapter 7 and the paragraph regarding fibromyalgia and the thyroid makes so much sense. Thank you.

[Tillysnanna]

Hi reallyfedup123,

I have never understood the explanations of fibromyalgia. It's always seemed a cop out by the medical profession, especially the 'it's all in your head' ones. So much easier to stick a psuedo scientific name on it and offer anti-epilepsy drugs as a treatment , which I have been more than once by different doctors.

[Tillysnanna]

So totally agree. It must be recognised how serious an illness it is otherwise why would we get free prescription as thyroid patients as diabetics do? It seems that GP's are very ill informed about the whole issue.

[Hidden]

Yes I'm absolutely sure that fibromyalgia and the other complaints that you have listed are symptoms of hypothyroidism.

When my dose of thyroxine was lowered on the insistence of doctors I developed severe fibromyalgia to the extent that at one point I couldn't climb a flight of stairs unaided and was wracked with body pain.

As soon as I reverted to my previous dose of thyroxine the stiffness and pain started to ease. Within a week I was completely symptom free of not only fibromyalgia but all of the other complaints too.

[Tillysnanna in reply to Hidden]

Dear Frederic

Thank you for your reply. I'm afraid there seem to be as many opinions as doctors and none of them agree. Our opinions don't!

[Bertwills]

Hi I’ve had fibromyalgia for over 20 years. I really thought that T3 would cure me. It hasn’t. I’ve been taking it for some time now. There are improvements but I think that, in my experience, the hypothyroidism is a symptom of fibromyalgia, M E, CFS. I don’t have any antibody problems, despite frequent testing, so no Hashi’s

I follow the Health Rising blog. This documents the research being done into these diseases, which are proofing extremely complex. There is a recent greatly increased interest in them and a boost in research funds this year. Mitochondrial biochemistry is definitely implicated. But why and how is still unknown. There also appear to be many subsets of these diseases. Nothing seems to work for everyone. Progress is being made though so fingers crossed.

[Tillysnanna in reply to Bertwills]

Dear Bertwills,

Yes, it is all very complex isn't it. I'm particularly interested in your comment about mitochondrial biochemistry. Do you have a site to recommend regarding this? I would be very grateful if you could. My dear mum who died on Christmas eve suffered for many, many years and was given so many different diagnoses. I think she had fibromyalgia but was never properly diagnosed. I think this illness has been around for a while and it's taken a long time to recognise that it is a genuine one. But there are still those who suggest that it is 'all in the head'.

[RedApple Administrator in reply to Tillysnanna]

If you want to learn more about Mitochondrial issues, then Dr Sarah Myhill is the person to tell you as she is the recognised UK expert. Her website is drmyhill.co.uk

The info on Amazon about her latest book is worth reading too amazon.co.uk/Diagnosis-Trea...

[Tillysnanna in reply to RedApple]

Dear RedApple,

Thank you for your suggestion. Sorry for the late reply, still getting used to the forum.

[Bertwills in reply to Tillysnanna]

Really sorry to hear about your Mum. Try looking at Healthrising.org. It’s American based but I it interesting to see what’s happening in medical research worldwide. You can search the archive.

Definitely not “all in the mind”!

[Tillysnanna in reply to Bertwills]

Thank you so much Bertwills. I have a lot of reading to do!

[Pascha1]

Yes Fibromyalgia is definitley a symptom of under treated Hypothyroid my GP tried to palm me off with that label,

I have recently started T3 added to my Levothyroxine and the day I took T3 within 1 hour all my fibromyalgia pains went away,

I no longer take , Codiene or even a Paracetomol.

I think I am proof Fibro is a thyroid symptom

Another symptom I had was severe heartburn which I had taken meds for 13yrs as they had tested me for Halitosis and was negative so was diagnosed with a hiatus hernia and GP had told me unless I was willing to have an operation no point having it investigated ! I couldn't even bend down to hoover and used to have to take 2 or 3 lansoprozale to be able to do the hoovering

My Asthma went away also my ears popping stopped.

My med bag is now in a small bag before the T3 I had a carrier bag full..

They try to say T3 has a placebo affect on us and although i'm not 100% my quality of life is much better ...

[Tillysnanna in reply to Pascha1]

Dear Pascha1,

I also suffer from awful heartburn and take up to 80mg omeprazole a day as well as gaviscon advance. I've had a gastroscopy and nothing was found. I've also got asthma that is treated with emphysema inhalers so the steroid in them is pretty strong, The medical profession have never been able to explain why i suddenly developed really bad asthma in my late 30s. I do honestly suspect that all my bad health is about the thyroid issue. It's getting the medical profession to pay attention.

[Pascha1 in reply to Tillysnanna]

Dear Tillysnanna

Are you on levothyroxine only ?

If you are ask your GP for a referral to an Endocrinologist as GP can not prescribe T3 it has to be an Endocrinologist,

Ask on here for a list of sympathetic Endocrinologists and do research by ringing the Endocrinologist Secretary up and asking if he prescribes T3 before telling your GP where to refer you to and will hopefully stop a wasted visit to a Diabetic Endo who doesn't seem to care about Thyroid problems and only believes in levothyroxine.

If you are suffering due to the treatment and do not feel right you need to get a referral asap as takes a while to get to see one..

Good luck do not suffer anymore.

P.S.

I was put on Fostair for my Asthma but wasn't really touching it,

My Asthma has gone since taking T3, Ok I will probably get it when People start cutting Grass but only a tiny wheeze and when it gets damp but could get away with just using blue spray before I become hypo...

[Tillysnanna in reply to Pascha1]

Dear Pascha1

Yes 100mg levothyroxine only. I was diagnosed about 5 years ago by a GP and have never seen an endocrinologist. I am going to get some private tests done and hopefully get some better idea of where i am. I just don't understand why it's all so difficult to get proper testing from the NHS. If we all got treated properly surely we'd be less of a drain on resources all round. Symbicort is the asthma medicine and it is pretty good, hardly ever need to use a blue inhaler.

Thank you for your support and advice.

[Mary-intussuception]

I think the excuse was something like - When people are just coming to terms with their diagnosis of Fibromyalgia it can be upsetting to start thinking they may have something else (or something like that).

If I remember correctly, I apologised to the poster saying I never intended to upset anyone & was just trying to be helpful. The poster didn't know what I was on about and was very thankful for my reply. No one actually made a complaint, just someone in Admin didn't like my reply it seemed!

[Saya85 in reply to Mary-intussuception]

So sad! I have to say I briefly skimmed some other forums (lupus RA etc to find some more answers and despite every autoimmune forum crying out for the need for more holistic treatment of patients it appears everyone very much wants to hold onto their ‘cause’!

The suggestion that there may be more than meets the eye seems to offend them. Often why many associations or charities won’t work together - crazy!

My cousin does not treat her thyroid condition but suffers from ‘fibromyalgia ‘

I tried to convince her she needs to treat both at the very least because one can make other worse but I think sometimes people are blinkered or want to put their head in the sand. One condition to blame is enough- without having to try and join the dots

[DippyDame]

Been there....I have no doubt!