Could this be the answer to the mystery of 'why it is so difficult to 'extract' Help from our GPs re Fibromyagia & related disease???

Hello! Again you cheerful tenacious for life souls!! Well I'm about to challenge my GP again. From the beginning, like you, been amazed at how I have had to plan strategies in order to TRY! to achieve my goal at any given time (believe me on first realizing this was necessary) I really thought I would have no problem. Now I really am putting the following mistake (if indeed it is a mistake) down to gross 'brain fog'. Naa' Just plain stupid!!! Having trained in Nursing & Midwifery &, more than used to conveying patient info. to the great & the good. To the Point now!!! Maybe many of you like me have had Thyroid function tests, If you have'nt you should have! WEEEEEEllll !!! On the 15th of this month I hope I'm about to find out (something which has only just dawned on me), THAT IS, Whether or not they test ONLY for 'Thyroid Stimulating Hormone', OR, DO THEY? Test for T3 & T4 also Free T3 & Free T4 also Revised T3. Some of you naturally won't know what this means, will take to long for me to type it all down, I'm sure you guys will look it up. Ultimately though (& I PROMISE YOU, YOU ARE NOT GETTING OR HAVE NOT HAD THE PROPER TEST!) i DO HAVE A STRONG FEELING THAT THIS AWFUL 'DISEASE' & RELATED ILLNESSES COULD WELL BE DOWN TO 'UNDER OR EVEN OVER ACTIVE THRYROID, MAYBE EVEN 'HASHIMOTO'S' DISEASE. Soooo! Ha Ha! I'm so excited (So Rare). I just had to share this with you guys, maybe you can get to it straight away. Whatever, my very good wishes, and bless you all.

Gateshead Girl.

19 Replies

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  • Good on you girl , make a fuss, cause a riot!! from one nurse to another-Nurse Gladys Emanuel(open all hours)

  • Ah!! Bless you Too!! HaHa! Yeah! We know how to do it! Or I thought I did, miss that! WE'll get there. Thanks again.

  • I am in total agreement with you. For years I told my doctor I thought I had an under active thyroid. My mother has had it for years. I had all the symptoms but blood test came back in the normal range.

    Since we can now see our medical records on line I took a look, I was only just in the "normal" range but what's normal for ME? I asked for a T4 test that came back literally just in the normal range.. I am currently on 25mgs levo thyroxine and waiting for my results of my follow up blood test.

    I really do think it has made a slight improvement to my system and look forward to getting my new results. Fingers crossed more can be done to help.

    Good luck and don't be fobbed off x

  • Thank you so much Glochessum for your reply ,& encouragement, Much appreciated!! Bless ya'. & No I won't be fobbed off, I'll go for it, politely but firmly. I do have a plan B ,&, secretly OOOOH! Myyy! do I want to do IT! MYSELF, AND JUST SHOW THEM! because like u all I will not give up. Would'nt it be GREAT if i got a private blood test & if positive, got the treatment, then WOW! Walked into the surgery Exclaiming, I'M WELL!!!! NA! NA!NA !NA! OH! I CAN STILL DREAM. SO MUCH GOOD LUCK TO YOU!!

  • Hi..😊..ive just read ur post about getting ur medical records online..can u please tell me how i can get them..id love to see what they contain...thank u..Terri..😊..x

  • I have fibro and an underactive thyroid, Hashimotos disease, and take 125mg of thyroxine daily but this was present before I was diagnosed with fibro so while I do believe there is possibly a connection I am not sure that the thyroid treatment would deal with all the fibro symptoms. Hopefully you will get a definitive answer and if treatment is given that it improves your symptoms; to be honest I do not suffer as badly as others with fibro but there is no way of knowing whether this is to do with the thyroid treatment or not.

    Good luck and gentle hugs, Steph

  • Thank you, this is good to know, every bit of info helps. I do hope you achieve your ultimate goal. All the very best.

  • Hello all

    I thought you may be interested to read the Pinned Post that we have on this matter. It was written by our previous Administrator Emma. I hope that you find it of interest.

    Lu x

    Administrator

    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

  • Thank you so much for taking the trouble to give this info. Very interesting & informative.

  • Thanks, very interesting 👍😊

  • I have hypothyroid, fibro and lots of other nonsense going on, I have however been assured that fibro is a diagnosis on its own. I am one of the fortunate people as I have brilliant medical care, many are not so well treated. xxx

  • hello!! Lou1062, There's hope for us all yet Eh!! I'm so pleased for you & long may it continue. Hope you don't mind, I meant to add this query 'above'. Has anyone had a full 'Hormone Profile' done at anytime. The Female kind???? Thanks Lou!

    Gateshead Girl.

  • I had a full hysterectomy at 44yrs of age and was on hurt for a yr. My migraines got worse so I was taken off of them and have had nothing since. I also suffer from PCOS, as do my two young daughters.

    Are you asking about hormones because you think it might be related to fibro?

    Best wishes 🌸

  • Funnily enough I was planning to speak with my GP about this very subject at my next appointment in a couple of weeks time.

    I have a family history of both hypo & hyper thyroid and have been saying for years that I'm sure mine is under active but last time she said result was just within the bounds of normal.

    I will make note of the tests you mention and enquire further with GP.

  • c-49_m , I am from the US and have had the test and diagnosed with under active thyroid.I take synthroid 125mcgs. daily.From what I understand will probably take (maybe not the same strength) the rest of my life. Thanks for bringing this to everyone's attention.Have a good day.Peck🐤

  • Hi

    I have Hashis and been on medication for 15 years

    Re blood test GPs only do TSH even when I request other test and I know it is down on the form to be done .Labs refuse to do them unless they are concerned about TSH results. Thyroid illness is treated no better then Fibro .We are told THS is in range and we are well when most Thyroid patients feel better overmedicated and under range for TSH .

    Its a ongoing battle most Thyroid patients myself included pay privately to get full thyroid panel blood test as GP are a no go with this.

    Best Wishes

    Rose

  • Is this the test I had to have done at 9.30am, as this is when its present enough to read?

    Sorry but really don't know if I've had it done or not.

    Thanks for the info.

    Take care 😊

  • I have been questioning this with past and present GPs for years. I have believed for some time that I have thyroid issues as I have so many symptoms shown on the Thyroiduk site and my symptoms are increasing and my TSH has been rising every year (currently 5.83) but doctors always tell me it is "normal"! and would need to reach 10 before treatment for hypothyroidism. I have asked repeatedly for further tests including FT4 and FT3 only to be told the lab won't accept this. I don't have the finances for a private test. Now when I go to gp for anything I get told every time its the fibromyalgia or that I need to go and lose weight. I do believe both conditions are linked. J.x

  • Hi c-49_m

    I do believe that there are some Fibro sufferers who have been misdiagnosed, as they have thyroid issues? However, without the proper blood tests it is difficult to say. However, not all Fibro diagnosis's are misdiagnosed thyroid sufferers as Fibro is a very real condition in its own right. I want to sincerely wish you all the best of luck with your doctors appointment and please take care of yourself.

    All my hopes and dreams for you

    Ken

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