Can there be a link between underactive thyroid... - Thyroid UK

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Can there be a link between underactive thyroid and fibromyalgia?

Rickygee profile image
29 Replies
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Rickygee profile image
Rickygee
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29 Replies
anbuma profile image
anbuma

I think so.tehre are a lot of people her ewho have fibroand thyroid problems.i have symtpoms of thyroidism btu my doctor wont recognize them??cos he says bloods are normal.likehe says I don't have lupus cos bloods don't say so yet I have symptoms -butterfly rashand nasal sores .

Marz profile image
Marz in reply to anbuma

...could be thyroid - it is shaped like a butterfly ! I too had similar - not anymore !

anbuma profile image
anbuma in reply to Marz

meant butterfly rash across face and nose is symtpomof lupus not thyroid being butterfly shaped gland.

shaws profile image
shawsAdministrator

Fibromyalgia, Chronic Fatigue and ME were only named as 'new diseases' about ten years after the TSH was introduced. Previously people were diagnosed due to clinical symptoms only.

web.archive.org/web/2010112...

web.archive.org/web/2010081...

Rickygee profile image
Rickygee in reply to shaws

Thank you, will have a look.

Marz profile image
Marz

FM is auto-immune and is linked with AID of the Thyroid - Hashimotos. Shaws has the best links to the required information. I was diagnosed with FM - 99% gone now on adequate treatment of Hashimotos - thankfully.

Rickygee profile image
Rickygee in reply to Marz

What is hashimotos?

Marz profile image
Marz in reply to Rickygee

...think the main Thyroid UK website explains a lot ! Take a look at my earlier post - Hope for Hashimotos...

sandysnow profile image
sandysnow

Go look at "the holy miracle of the TSH test on youtube. Hysterically funny, but also very true. They just renamed the problem!!!!

Rickygee profile image
Rickygee in reply to sandysnow

Will do, thanks!

Rickygee profile image
Rickygee in reply to Rickygee

Excellent. I am going to ask my GP to view both these videos! S well done, and very informative.

PD01 profile image
PD01

I have been diagnosed with FM for 10 years, and have only just discovered that it has been recognised for decades that FM may well be subclinical hypothyroid - ie main tests can look fairly normal, maybe slightly over/under, but symptoms persist and are similar to hypothyroid.

Check out John Lowe (sadly recently deceased) who wrote "The Metabolic Treatment of FM" (apparently a large volume, and is now £1,331.28 on Amazon, cheapest of 2 copies available!) and co-wrote Your Guide to Metabolic Health (£87 plus for used on Amazon) - I picked mine up for less recently, as he seemed to have such a wealth of experience. He ran a Fibromyalgia Research Centre in Houston, now seems to be defunct, but his wife runs a web site, naturalthyroidsolutions.com, and told me she is hoping to get his websites back up running when probate is sorted, and I think hopes to reprint one of his books. They supply Thyrogold. Chs of his books are available free on her site.

Then there was Broda Barnes who was one of the early pioneers to recognise thyroid problems, and Barry Peatfield UK ("Your Thyroid", ch 13 on FM/CFS - acknowledges Lowe, who apparently had 85% patient recovery rate from FM by treating thyroid, and that treatment needs to be holistic), and there are probably others as well.

Dr Myhill in Wales takes the view that it is mitochondrial, and treats accordingly and seems to have some good success also - I guess it could still be thyroid though? A lot of systems affected, so it needs to be something central going wrong.

***Update 17 Sept 2013: Having just read Thyroid UK info pack, I now realise subclinical hypothyroid is actually TSH high, but fT4 is normal (and fT3??). I had thought subclinical would mean not diagnosable by reference levels, or borderline***

Rickygee profile image
Rickygee in reply to PD01

Thank you so much for your detailed reply. I have been doing some reading over the past few days, and it has all been a revelation. I know I have a sluggish thyroid but still in the normal range. Doctors won't prescribe thyroxin, so what do we do?

helvella profile image
helvellaAdministratorThyroid UK in reply to Rickygee

Maybe have a read of a recent post, print some of it out, take it to doctor?

healthunlocked.com/thyroidu...

A sluggish thyroid might be fine for a slug - it is rubbish for a human. :-) :-) :-)

I was started on levothyroxine at just over our local range (tenths of a unit). It is possible.

Rod

Rickygee profile image
Rickygee in reply to helvella

Yes, I think that's my only option. Thanks.

PD01 profile image
PD01 in reply to helvella

Great link, thanks, and like the comment, Rod/Helvella! - (same person?)

helvella profile image
helvellaAdministratorThyroid UK in reply to PD01

Yes - helvella is my posting name/identity. :-)

PD01 profile image
PD01 in reply to Rickygee

Sorry for not getting back to you before now - great link below from Helvella, will keep that for when I need it.

Thyroid UK do stock Barry Peatfield's book, he gives a lot of info on the processes going on, and various things to be done to help - working up from self-help diet, through low level treatment with glandulars (prescription not needed) to the prescription medicines under a GP or consultant. Stop The Thyroid Madness is a website and also a book on Amazon - patient based and led information.

Also, Thyroid UK have a list of sympathetic or experienced GPs - see their site, under "Getting a diagnosis".

If I turn out to need a prescription, with the accompanying requirement of monitoring, I would rather have an experienced doctor who actually has a working knowledge of an area that is rather taboo in orthodox circles, and can easily be misread - Dr Skinner was brought up before the Medical Council recently for prescribing outside of reference levels. So if possible, it would probably be best to try and find an expert not too far from you. Failing that, read the BP book, use the link below, and ask your GP.

You can get tests on Blue Horizon (discount available with coupon code from Thyroid UK) where they include a GP report, so these do not need the consent of your own GP.

PD01 profile image
PD01 in reply to Rickygee

Personal update: I have recently purchased the info pack from Thyroid UK, and found it very helpful: good basic info (covered in the books, but distilled out) and also list of websites, books, and sympathetic practitioners, as well as lab tests available. Well worth it... and they sell 2 very good books (Peatfield, Skinner) and one I intend to get, Tears behind closed doors - apparently very good also).

PD01 profile image
PD01 in reply to Rickygee

Sorry RickyGee - have just realised my understanding of subclinical hypothyroidism was wrong, having just read some of the info pack! - see above update on my first reply to you. I think I would be more in the hypo region, but "normal" TSH meaning I am not diagnosed.

Vivante profile image
Vivante

It is possible, as yet there is not enough proof. More research is needed. Look on The New York Times Fibromyalgia In-depth report. There is also NFA, The National Fibromyalgia Association. One of my class members has both Fibromyalgia and Hypothyroid. Look on intydin.com.

Rickygee profile image
Rickygee in reply to Vivante

Thanks, will look these up.

Vivante profile image
Vivante in reply to Rickygee

Intydn website does not seem to be recognised. But you will find a lot of info on other sites. I think the New York Times site provides a great deal of useful snippets.

Rickygee profile image
Rickygee

Yes you could make a healthy profit! Thanks for this info, really good. Not sure what to do about it though. do GPs listen?

Rickygee profile image
Rickygee

My tests for underactive thyroid came back as within the normal range but were low. (When I looked up my results, I would have been classed as being hypothyroid in the U.S.) so my GP would not do anything about it. Was diagnosed with fibromyalgia a year ago and have just become aware of the link bewteen the two. Am at a loss as how to proceed.

tegz profile image
tegz in reply to Rickygee

Best to post your results TSH, T4 etc.for comments.

I don't think you're under treatment yet, are you?

Rickygee profile image
Rickygee

Hello everyone who has been so kind as to reply with ideas and advice. Been to see my doctor and told him about the US doctor and his connection between 'low' thyroid and fibromyalgia. He has prescribed me with 25mcg of levothyroxine. Ihad a blood test at the same time, but he said to start it anyway. I think he looked at my results from Bart's hospital in 2010 when my range was low but within the normal limits for the UK. When I get my results I will post them here for feedback. I am a bit scared to start the levothyroxine. It's a very low dose so I guess it will be ok? This week I started taking Th207 a few days ago....

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Rickygee profile image
Rickygee

Sorry ..... Started taking TH207 this week because I heard it was good for the thyroid, so I guess I should stop that now. I am also wondering how long I would need to take the levothyroxine before I found out that it was helping the fibromyalgia? Any ideas anyone? Thanks

margarita2013 profile image
margarita2013

It's not just theoretical. I think "Fibromyalgia" and Chronic Fatigue are more to do with low thyroid and /or adrenal funciton. Seems the most eminent doctors in USA (incl the late Dr Lowe and Dr Mercola) believe that FM is just a meaningless diagnosis, and that thyroid dysfunction is the problem. Your GP might get annoyed if you say it though, as they usually do. I'm not a med doctor but a neurphysiology/psychology graduate with years of training adn teaching and my studies included understanding of the endocrine system and have developed a lot since i'm a suffere. There are several books on this topic on Amazon or contact Barry Peatfield in UK who's an expert (WAS a GP on NHS but left in disgust as banned from taking proper care of his hypo-thyr patients ). He's kind and empathetic. Hope this helps.

Maggie

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