To all Members,
RE: Fibromyalgia & Thyroid Issues
A passage by FibroAction's 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.
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)
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
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)
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;
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.
Here's some information on how Fibro is diagnosed: nhs.uk/conditions/fibromyal...
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)
Thyroid UK statement can be found via link below;
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;
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Many Thanks for reading
Updated: 12/03/18 to include Thyroid UK statement.
Updated: 04/06/19 to include statement on how contentious posts on this subject will be dealt with.
Additional Info: We often have contentious posts about a link between fibro and thyroid OR that fibro does not exist and that it is an undiagnosed thyroid condition. FMA UK informs people that thyroid conditions can be a differential condition for fibro and should be rule out.
However, we will not accept people dismissing the pain and suffering of fibromyalgia and the condition itself. Therefore where posts are heading in this direction then the posts may be closed down and a link to this post left.
If you feel that you need your symptoms explored then talk to your GP or explore another forum but please do not attempt to dismiss the people that have been properly diagnosed as it does not help them or awareness of this condition.