About Fibromyalgia & Thyroid Issues

To all Members,

RE: Fibromyalgia & Thyroid Issues

Firstly a passage by FibroAction Founder & Chair Lindsey Middlemiss (2012)

Thyroid issues should be ruled out (or isolated) before a diagnosis of Fibro is made. Does this always happen? No, so some people are mis-diagnosed. Does that mean that Fibro is hypothyroidism? No.

Having said that, having ANY chronic condition seems to increase your risk of having Fibro. This has been especially studied with the rheumatological conditions, such as RA or Lupus, but it also discussed by experts in relation to many conditions, from hypermobility to endometriosis.

Fibro is the end result of what can be a long process in some people. The over-stimulation of the Autonomic Nervous System - that leads to poor response from that system, central sensitisation, disturbed sleep, low levels of available dopamine and from there to the many symptoms of Fibro - can result from any extreme or long-term stimulation of this system (anything that triggers your body's fight-or-flight-type mechanisms). In some people this is linked to a long period of emotional stress, such as an abusive relationship, in others it is linked to compression of the cervical spinal cord, in others it is linked to trauma and in others to a pre-existing condition (even if the Fibro diagnosis came first). If you have a chronic condition, especially one that is uncontrolled, your body is under stress even if you are not aware of it

Questions & Answers

1.Is there or might there be a connection between Hypothyroidism & Fibro ?

Firstly Fibro is NOT a symptom of Hypothyroidism also Hypothyroidism is not a symptom of Fibro

To explain further there are a few possible scenarios to this complex issue to consider;

a) As stated there can be a possible misdiagnosis of Fibromyalgia due to lack of adequate screening of Thyroid profiles here in the UK. In which case the patient would have an actual Thyroid condition rather than a ever having Fibromyalgia

b) As stated above you can have Hypothroidism as a primary condition with Fibromyalgia as a secondary condition and again the Hypothroid condition may have been missed and a diagnosis of only Fibro made. In this situation, we must be aware of our diagnosis and ask that a full thyroid profile be undertaken. If & when the Thyroid condition is medicated the symptoms of this condition will ease and the thyroid condition will be causing less stress to Fibro which may also ease symptoms.. Please note that as the symptoms are so similar it might be hard to make a distinction which condition has improved.

c)Primary Fibromyalgia (without any other illness/condition) can often be misdiagnosed and as stated above adequate Thyroid profile screening should be taken before this diagnosis is made. Unfortunately this does not always happen (as the Thyroid testing in the UK is not as thorough as it should be in our opinion), so again having a full thyroid profile taken is important to aim to rule out any misdiagnosis

d)Even if ALL the necessary steps to have a full Thyroid profile have been taken you may still be subject to a misdiagnosis with Primary Fibro on some occasions, as there are reports that a condition of Thyroid Resistance called Hasimotos can present to the medics as likely Fibro and then during the period of a few years the Thyroid profile may show that in fact you have a diagnosis of Hasimotos NOT Fibro. Of course again I would imagine it may be possible to have primary Hasimotos with secondary Fibro also.

e)Fibromyalgia & Thyroid conditions are considered to be connected in some way but Fibro is NOT just a symptom of Hypothyroidism as Fibromymyalgia is a medical condition in it's own right with Key findings as follows;

These are as follows:

* Increased levels of the pain-transmitting chemicals substance P and nerve growth factor in the spine

* An extreme response to pain in the brain: with a functional MRI scan, the parts of the brain that deal with pain are seen to light up from a significantly smaller pain stimuli in people with Fibro compared to healthy people

* Disrupted stage 4 (deep) sleep, meaning that sleep is non-restorative, even if the person with Fibro sleeps through the night Two studies have shown that artificially disrupting stage 4 sleep in a similar fashion for 3 or more nights in a row will lead to Fibro-like symptoms developing in healthy people

* Reduced availability of opioid receptors, explaining why opioid medications are less effective in people with Fibro

* A subset of people with Fibro have been shown to have positional cervical cord compression, meaning that the spinal cord in their neck is compressed when they lean their head backwards. This finding is still being studied, but this positional cervical cord compression could be a reason for the autonomic nervous system to be disrupted. People with Fibro who have this particular abnormality may benefit from a specific physical rehabilitation program to stabilise the neck, but it is still relatively early days in this area of research

.* Accelerated brain grey matter loss

* Abnormalities in the dopamine systems of the brain, including a reduced dopamine response to pain. As dopamine is thought to act as the brain's "filter", these findings could help explain the autonomic dysfunction and central sensitisation of Fibro. A few medications that boost dopamine in the brain are used as treatments for Fibro (pramipexole/Mirapexin and nefopam/Acupan) and some people do very well with these.

* Changes to the Hippocampus, a part of the brain involved in many processes, including pain perception and memory formation

* Dysregulation of the HPA (hypothalamic-pituitary-adrenal) axis, which is a complex set of interactions between the hypothalamus, the pituitary gland, and the adrenal gland. The HPA axis controls reactions to stress and regulates various body processes including digestion, the immune system, mood, and energy usage

* Dysfunction of the Autonomic Nervous System

* Altered blood flow in the brain

By Lindsey Middlemiss

Please note: I have highlighted the section in bold, as if the HPA axis is reported to be a problem and this it the control centre if you like, of neurotranmitters, chemicals, hormones etc then of course we may see a high percentage of people with Fibro & Hypothyroidism - so this is probably a connection that could be made.

Research Articles:

Pathogenic mechanisms of fibromyalgia

Studies of the entire endocrine profile of fibromyalgia patients support the hypothesis that an elevated activity of corticotropin releasing hormone (CRH) neurons determines not only many symptoms of fibromyalgia but may also cause alterations observed in the hormonal axes. Hypothalamic CRH neurons thus may play a key role not only in resetting the various endocrine loops but possibly also nociceptive and psychological mechanisms as well(Neeck 2001)

sciencedirect.com/science/a...

2.Do we support any campaigns to increase Thyroid testing in the UK?

YES. most definitely

3.Are there any other conditions connected to Hypothyroidism ?

Yes, Lupus, Rheumatoid Arthritis, Grave's disease probably many more

Research Article:

The frequency of thyroid antibodies in fibromyalgia patients and their relationship with symptoms

The frequencies of thyroid autoimmunity in FM (34.4%) and RA (29.7%) patients were significantly higher than controls (18.8%) (p<0.05).FM patients had thyroid autoimmunity similar to the frequency in RA and higher than controls. Age and postmenopausal status seemed to be associated with thyroid autoimmunity in FM patients. The presence of thyroid autoimmunity had no relationship with the depression scores of FM patients (Omer Nuri Pamuk & Necati Cakir 2006)

link.springer.com/article/1...

This research seems to suggest that the frequency of Hypothyroidism & Fibro is around the same as found in RA if not a few percent higher. However, all research can have variables and to read more about research you can do so here;

healthunlocked.com/fibroact...

4.Did having RA make a patient more likely to have Thyroid related issues?

Research appears to support this at this time as does it seems having Fibro could make it be more likely you may have Hypothyroidism

5.Should you consider asking for your Thyroid blood test results if recently diagnosis with Fibro ?

I think it should be considered & if you've only had a TSH then maybe you should think asking for a full Thyroid profile to be taken as this might be helpful

6.Can Fibro be misdiagnosed?

Yes, unfortunately this can happen on occasion due to the Doctors interpretation of the American College of Rhuematology (ACR) criteria as ME patients often can fit into both criteria as can some Fibromyalgia patients fit into theirs on occasion too, as symptoms can be synonymous the same as Fibro can be with other conditions too.

Information

Here's some information on how Fibro is diagnosed:

link to follow

To conclude:

Fibromyalgia is a chronic illness characterised by chronic widespread pain, hypersensitivity to pain (and other stimuli), chronic fatigue and sleep disturbances. Fibro is a type of chronic pain condition, but Fibro patients experience a wide range of symptoms that can wax and wane over time

Fibro can affect anyone. Although it is commonly thought that 80-90% of Fibro sufferers are women, this figure may be an overestimate and men do get it too3. And although a large proportion of Fibro sufferers are aged 35-60, anyone from children to the elderly can develop the condition

Fibro is a surprisingly common condition: it is estimated that between 2% and 4.5% of the UK population has Fibro, which translates to between 1.2 and 2.7 million people in the UK alone. However, this figure has never been accurately measured (it is based on international prevalence statistics and it may be higher.

Pre-existing conditions (even if the other diagnosis comes after the Fibro diagnosis), such as Hypermobility Syndrome, Lupus or Rheumatoid Arthritis can also lead to Fibromyalgia, when it is then often referred to as secondary Fibro.Hypermobility Syndrome in particular is now thought to be a risk factor for developing Fibro

Most researchers agree that Fibro is a central processing disorder with changes in the neuroendocrine/neurotransmitter systems (the systems that transmit messages around the body) and there is an increasing body of evidence to show that Fibro is a Central Nervous System related disorder Fibro is sometimes called a central sensitisation syndrome. Abnormal processing by the central nervous system causes the pain amplification that people with Fibro experience. The changes in the neuroendocrine/neurotransmitter systems also explain many of the other Fibro symptoms (Lindsey Middlemiss FibroAction Founder & Chair 2009)

Furthermore here's a quote from British Thyroid Foundation:

"Our medical adviser's opinion is that there is no clear evidence from clinical literature of a proven link between the thyroid disorders and fibromyalgia" (November 2013)

btf-thyroid.org/

However, as with all conditions research remains ongoing & usually collective studies are best to make any conclusions of any merit. If you would like to read about research please see the following post;

healthunlocked.com/fibroact...

Please Note: this may be shared to Facebook and/or Twitter

Many Thanks for reading

Emma :)

Community Co-ordinator

fmauk.org

Last edited by

27 Replies

oldestnewest
  • Very interesting indeed. Thanks for posting. X

  • Interesting read, thank you :)

  • My turn to say thank you. :)

  • Thank you for a very informative and interesting post, Julie xxx

  • Thank you Emma

    Very interesting

    Best wishes squeak xx🐷🐭

  • Thank you for this, very informative and I am at present on medication having been diagnosed as hypothyroid in the past week, the irony will not be lost on some, I am however assured that fibro is a stand alone diagnosis. Lou xx

  • mdaisy thatis a report! wher did you find it-ihave hypermobility and substance p an autonomic probs.

  • Thank you Emma that is very interesting and informative.

    Take care

    Ken x x

  • Hi Ken have just read the artical you sent me and it makes very interesting reading - I have an appt with the GP (a very nice one) on 25th I will show her this and see what she says - the doctor who diagnosed me with Fibro has now retired. Take care 🤗🤗🤗😘😘😘 for your wife too.

  • Good luck my friend.

  • Very interesting thanks xx

  • Thanks. I find that people with Thyroid issues don't always accept that Fibro is a condition in itself and while it is essential to rule out any thyroid issues to say that all fibromyalgia is really an undiagnosed thyroid issue is an over-simplification.

  • I think I may have fibro and when asking my doctor if it was possible he said there's no test for it then changed the subject...where do I go from here?

  • Hi sproat.

    I'd been backwards and forwards to my Dr's, pains here, there and everywhere, kept being fobbed off with take paracetamol and rest, my breakthrough came when I queried why my fingers turned white and lost feeling in cold weather, I was then referred to specialist rheumatology department where they diagnosed Raynaud's Syndrome, from this and after MRI scans and so many blood tests I finally got the fibro diagnosis, which was a bit of a relief because you do start thinking your going mad, and I was getting fed up with moaning, hope this helps, maybe ask to be referred to rheumatology specialist

    All the best

    Sharon xx

  • Thank you for this information. I have got a large goitre and when it was being tested for cancer the doctor doing the scan said that I had multiple cysts in my thyroid including one that was the size of an egg. He showed me the edge of my thyroid and said that would be the only part of my thyroid that worked.

    There was no cancer thank goodness and so I was referred to the thyroid consultant and I never got an appointment despite chasing several times. It has been three years now. My doctor said my thyroid was normal according to the blood tests.

    However the nurse at the glaucoma clinic I go to is convinced I have thyroid problems and not fibro. She keeps pushing me to insist to my doctor that I should have this investigated and I do. I get blood tests and they are normal.

    My mother in law is American and she has an under active thyroid. She said she didn't have any blood tests, but her doctor diagnosed her from her goitre and her symptoms and when she was put on medication after six months or so she felt much better.

    It would be terrible if there is something that could actually help fibro patients and this was overlooked. In fact it must be dangerous really to put all symptoms experienced by fibro sufferers down to fibro as any new symptoms could actually be something more life threatening and should be investigated.

  • Thank you very interesting post especially considering my current condition!

    I am new to this forum, it came up on a search I am doing looking into fibro and T3 hormone.

    As you say in your post fibro is defo a seperate diagnosis to hypothyroid but I strongly believe they are linked, or at least thyroid hormone uptake and fibro is.

    My reasons for this is because I was diagnosed with graves disease years ago (autoimmune (hyperactive) thyroid disease), I went into remission after treatment by medication, other than sleeping problems I was fine. I was in remission for 4 years then fibro hit, (diagnosed with fibro a year and a half ago), but I have spent 2 months pain free, yes a who two months of bliss, as my immune system caused my thyroid to over-act!! Ok it did not remove completely all my fibro symptoms, I was still more sensitive to touch than my old healthy self, but I was not experiencing the pain and fatigue, now that I am on carbimazole to block my thyroid my symptoms are returning, my pains are back after being on the carbimazole for a month, I am not underactive yet in a medical sense yet. But there is definately some sort of mechanism connecting the two, even if it is only a knock on effect of a overactive metabolism.

    My blood hormone levels where such that I was quite hyperactive, but for me I felt only more like my normal self before fibro and graves hit me (nearly a decade ago). The first time I had a hyperthyroid I was bouncing off the walls with these blood levels, so you would expect me to do the same this time unless not all of the hormone was getting into my system!

    Therefore for me I strongly believe that there is a link, and am going to be discussing that as they will be putting me on thyroid hormones as part of the 'block and replace' treatment for a hyperactive thyroid, that this time I am given a mix of levothyroxin (T4) and T3 replacement as opposed to just the levothyroxin which is standard practice.

    It may not make a difference to how I feel but there is a part of me that is thinking that perhaps my problem is not my thyroid itself, but perhaps further down the thyroid hormone journey, such as T4 to T3 conversion problems. I think for me in the current health predicament I find myself in it is worth exploring and would also make sense that as the thyroid produces both T3 and T4 (T3 in a much smaller amount, and T4 in a higher amount but converts in the cells to T3), that as my thyroid went hyper that a larger amount of T3 is produced (as well as a larger amount of T4) but if there is a problem with conversion of T4 to T3 then the higher T3 produced would then help in making me feel better.

    This is something I will be discussing in depth with at my endocrinologist appointment in April, and after a lot more research paper reading.

    Please note, too high thyroid hormones in your system is dangerous so any hormone treatment needs to be through a gp and monitored! the first time I was hyperactive I was on the verge of my organs shutting down, so defo not to be messed with on your own.

    I was just wondering if anybody else had a similar situation? or if they have experience of T4/T3 hormones? I have heard from people with fibro and a low thyroid, but has anybody had a similar experience of a hyperactive thyroid with fibro?

    I strongly hope that there is more research into such things in the near future, in the mean time I just hope that my endo and gp support me in my own personal experiment especially as I insisted on them not using the radioactive iodine treatment to stop my thyroid functioning completely!

    Thank you for reading this, I will try and keep you updated on how my fibro/graves journey goes.

    hope you are all having a pain free evening xx

  • Hi,

    I take NDT for secondary hypo, which has reduced my FM symptoms, especially fatigue & paresthesis pain. I sleep much better & I am no longer constantly chilled to the bone when other people are in T-shirts. It's not improved my joint, muscle,  & skeletal issues, which are the result of trauma & joint hypermobility, but has made a huge difference to my wellbeing.

    There's a lot written about the diagnosis of FM starting with the change of symptom related diagnosis to relying on TSH, which does not show thyroid hormone availability at cellular level.

    I'm very much in the camp that considers many FM patients to have undiagnosed hypothyroid,  or graves or hashimotos autoimmune disorders, but the Big Pharma won't make so much money from that when T3 can be made & sold much cheaper than paracetamol!

    M*

    PS My friend had Graves, & feels worse following RAI treatment instead of a partial thyroidectomy. They gave her such a high dose of radiation that her stomach & throat are constantly painful, & it killed her thyroid altogether, rather than reduce it's function as they'd promised. Nobody warned her there were side effects to this treatment, or that they could be so severe. The NHS is wonderful, but the cheapest & easiest option is not the best, or effective when further illness is created.

    Hope you find the help you need without anything making you worse!

    Mel

  • Thank you lovely to read and understand it more xx

  • My FM symptoms are greatly reduced since I started taking NDT hypothyroid medication.

  • Great  post and just what I'm after!! Informed research on a condition or conditions I am trying to find answers to.

     I have felt for some time that my Fibro came just after the developing coeliacs disease and at the time low thyroid. I was put on thyroxine for a while but my bloods after that stayed on the low end of the borderline so the thyroxine was stopped. 

    I can remember being so symptomatic for such a long time, but I was also unaware I had coeliacs  until the definitive bloods and biopsy result. My bone density had been reduced through non absorption of calcium over some years and of course the chronic fatigue was put down to non absorption of nutrients from the food I was eating leading to anemia. However I now follow a strict Gluten Free diet, so the main coeliacs issues with my tummy are gone, but the other symptoms (which are also similar) I was suffering have not. So I am still convinced that Auto Immune conditions, go hand in hand with hypothyroidism and Fibromyalgia and that there is some relationship. My consultant told me that it is common for him to see coeliacs that have developed hyperthyroidism and  also fibro, so clearly some medical experts believe they have a link within the body. 

    Since my diagnosis I have been struggling with many of the signs and symptoms of Hypothyroidism. The issue here is that some of these symptoms are very similar to Fibro, so presenting oneself to the GP for monitoring and treatment, especially when the thyroid is on the borderline of Hypo and seems to swing back and forth over that line, is nigh on impossible.

  • Interesting and very clearly written. My fibro only diagnosed a couple of months ago, but I've had Graves' disease, over activity and now under activity for 9 or so years, plus chronic back pain, that doesn't respond as well as could be expected to the opioids. With graves, there are links yo hyper mobility, dyslexia, heart arythmia and other things I can't recall without my handy thyroid reference book. My very localised friendship and colleague networks might suggest a link with dyslexia, or perhaps other elements found on the autistic spectrum. Are you aware f any research links with dyslexia. My family have it and its variants, bar and cluster. Over the years, I'm retired now, the linkages and resultant increased management techniques and increased knowledge have both fascinated and encouraged me. Where do the different types of depressive illnesses fit into this picture? I feel a really complex flow diagram coming on, and perhaps you have a headache developing just reading this. Lol Bertie 82

  • i am on the spectrum and continuum.....if interested in my story please inbox me

  • How do I do that?

  • Jonelmes1978@gmail.com

  • I have fibro, as well as ank.spondyl. and sjogrens, but just recently my Dr. has been doing blood tests regarding my thyroid and I about to have a third one as the other two have come back as 'borderline abnormal' is the fibro why he has started checking into this, he never has before, is Fibro hereditory? I know my mother had the ank.spond. and thyroid problems, in fact I can think of at least four of my Aunts who had this problem or is it just conincidence? Thankyou. Lyzzie.

  • i have been previously diagnosed with graves disease and pernicious anaemia as well as fibromyalgia and hypermobility (also adhd and asd) my TSH ranges from 0.14-0.34 so i am essentialy hyperthyroidic. medical services in Kent have absolutely no idea on how to treat my case and i am in fact in the process of re starting my b12 shots that i am meant to have been recieving for the last 6 years and the referal to nuclear medicine.

    just saying

  • Very interesting I have had under active thyroid for 21 years and recently been diasgnoised with fybro

You may also like...