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Thyroid UK
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Thyroid is the missing factor in fibromyalgia

Dr Gordon skinner was one of the few doctors who believes thyroid blood tests should not be pivotal in the diagnosis of hypothyroidism and clinical symptoms are what counts. After many years of research and trials he treated many hundreds of grateful patients who had been diagnosed by their GP s with CFS/ fibromyalgia with thyroid replacement hormone.. he was pilloried for this by other doctors and put in front of the medical governing body .hundreds of his ‘ now well’ patients stood by him . He has sadly past now but anyone interested in his work can research his findings . I was diagnosed with CFS/fibromyalgia told to read up on it and just live with it . When I eventually, after 19 years of suffering , was proved to have hashimotos and now take NDT (thyrogold) i have no pain and no dreadful fatigue which are the main symptoms .

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First of all I'm glad that thyrogold suits you and is helpful in relieving your symptoms. Dr Lowe also stated that fibro was due to thyroid hormone resistance and required T3 to resolve pain due to the patient being resistant to other thyroid hormones.

Has Doctor Skinner's staff published their findings? As far as I know his website was dissolved when he died but the staff have spent the last few years collating all of their Research they did with Dr. S.

Dr Skinner was another doctor who was loved by his patients because he was a very down-to-earth doctor and became involved when patients began to consult him due to remaining undiagnosed and what he found in common with these patients is that they had hypothyroidism. Maybe because he knew clinical symptoms which no 'modern-day' doctor seems to be aware that's causing problems for the patients.

He is sadly missed not only for his knowledge but for his in-built sensitivity to the unnecessary suffering due to the 'modern' 'TSH alone syndrome' for diagnosing. He was then pilloried by those who should know better.

He is greatly missed

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I would love to learn more about him and his works

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Shaw’s , I read somewhere that a dr/researcher from Cardiff was taking over all dr skinners findings and research , it would have to be with dr skinners teams help I would think .ive tried looking today but can’t find any news on the subject tho

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Thought I would just mention , my eyesight deteriorated from about 1995/6 first short distance then followed later to long distance had to wear bifocals/varifocals since then for years . Once I had been taking thyrogold for a while my eyesight improved ,didn’t connect it at first but now I can see to read without glasses and see long distance eg road signs number plates words on the television etc sometimes a bit blurred from a distance but I thought it was just an age thing that I would need glasses .cant see any other reason why this would happen but I’m really pleased have you heard of this before ? Jay

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Try telling that to Health Unlocked Fibromyalgia forum and like many others you will be blocked and banned .....some people simply will not listen

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I often wonder if the many meds that are being consumed by Fibro sufferers are the cause of more pain due to toxicity ... 😎

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I'd say definitely it would blow your mind what some of them take & then struggle to get off if they do, scary stuff. I've mentioned B12 to people too because I know I'm deficient & diagnosed ME it's all put down to that when serious damage is done. Some listen & some believe Drs know all sadly.

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And someone in Gov needs to look at the resulting benefit claims too ...its crazy the way Thyroid patients are so poorly diagnosed or treated

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I had sever reactions to three medications.

Some of my FM friends with white coat syndrome take a few medications to alleviate the problems caused by FM meds. It's a double whammy to the production & absorption of thyroid hormones, as well as digestion & absorption of nutrients.

Meanwhile, Big Pharma gets richer whenever those cheap tiny thyroid hormones aren't prescribed.

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Marz, you are so correct, but fibro suffers are desperate for some relief from their grinding symptoms.

I'm afflicted by the holy trinity of Hashimoto's, fibro and chronically impaired sleep.

I have a sleep condition that has been strongly connected to fibromyalgia; after 3 years of attending a sleep clinic I was finally prescribed melatonin (Circadine) to help me sleep better. This enabled me to control my symptoms on just thyroid meds and Circadine; and to function almost normally.

In January this year my GP was 'told by a group of pharmacists' who'd reviewed the surgery's prescribing practices that I could no longer have Circadine.

Since then my fibro symptoms have gone through the roof! I'm exhausted and in pain, I've had to increase my (self-prescribed) T3 meds to cope with my symptoms; my GP has now prescribed four different drugs to address my 'new' fibro symptoms - guess what? I'm still in pain, exhausted, suffering rls and muscle cramps, sleep deprived, brain fogged....and suffering the side effects from the new meds of high blood pressure, dry mouth, racing heart beat - all of which could be relived by allowing me to have a reasonable night's sleep with Circadine.

The melatonin that you can buy from America is nowhere near as effective as Circadine, believe me I've tried!

The positive news is that after 'educating' my GP about my specific sleep condition, she has agreed to consider referring me to the sleep clinic again. But as we all know, in the UK a specialist referral now has to be ratified by three or four practitioners within the practice before it can be made....so I'm still waiting.

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I hear you and I am sorry you are struggling to receive the treatment you deserve. I'm sure you would have checked your adrenals 😊

After 13 operations for gut TB and Crohns I was diagnosed with Fibro in 2000 & Hashimotos in 2005. I believe inflammation drives pain in many cases - including my own. My surgery for spinal stenosis was possibly caused by B12 deficiency due to surgery - and so the list goes on !!

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Sorry to hear your story :( I buy melatonin from the US, and have also had the experience that only one brand, the first one I tried, has ever worked for me.

It sounds so similar to what you said that it makes me wonder if we get very used to just one.

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Thanks SilverAvocado and Jaybrooke,

My brain wakes me up once I reach stage 4 sleep, bouncing me from deep sleep to wide awake. This is apparently relatively common sleep disorder in people with Fibromyalgia and means you never get refreshing night's sleep.

The Circadine I was prescribed is slow release and so is able to address my sleep problem by allowing me to nod off again throughout the night.

I have bought 3 different so-called 'time release' melatonin from USA and none are effective for me throughout the night. Amitriptyline and Nortriptyline are old-style antidepressants which, at a lower dose are really good for relaxing cramped muscles, RLS, preventing night-time teeth grinding in Fibro sufferers.

The good news is that I got an emergency GP appointment this morning and was seen by a locum who frequently helps out at the surgery during holiday periods. She understood completely when I explained how my symptoms had exploded since the Circadine was stopped. I actually was going to ask for Nortriptyline since my recently recurred teeth grinding had cause me to break two fillings but she has had my Circadine reinstated, subject to a three month review. Just hope they don't snatch it off me again in three months time!

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Maggi999, That description of insomnia sounds very familiar from what we often hear in thyroid patients. The tendency to wake up after an hour or two of sleep and at that point be very wide awake. The main explanation I've heard is that this is caused by cortisol, particularly if you feel hungry at all or eating helps.

I've always had that pattern with my insomnia, difficulty getting to sleep originally, but not terrible, I'd be asleep within two hours usually. But then a few hours later I'd be the most awake I'd been all day, body stiff as a board and the bed feeling like rocks. I'd be awake for around eight hours and would sometimes fall asleep for an hour or two after that.

Melatonin helped me enormously, and the main thing it changed was the wake up in the middle of the night. I don't think you need it to be slow release to do that, in general.

Besides melatonin, the other big thing that helped me was meditating daily. That wasn't the reason I started meditating, but it was an immediate benefit. If I miss a day now I won't sleep as well.

I had a quick look through your past posts to see what you've checked out, and there isn't much that's recent. I saw you had some cortisol stuff a couple of years ago. The pattern you've got is amazingly similar to where I was when my sleep was the worst. I also had sky high morning cortisol, several times the top of the reference range, and was high for most of the day, and my NHS cortisol test was low.

Getting my thyroid dose closer to optimal and a few lifestyle things eventually resolved mine, and my saliva cortisol is now close to ideal. I couldn't find if you've ever posted thyroid panels on the forum, but did see B12 looking very low years ago. I would advise you to collect a full set of thyroid and vitamin blood tests (TSH, freeT4, freeT3, ferritin, folate, vit B12 and D, and possibly thyroid antibodies), and post them on the forum to make sure these are all perfect. It could be that a tweak in thyroid hormones or vitamins would make a huge difference.

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Hiya I've just read what you have written with regards to sleep patterns and I use a ntural sedative before bed and a white noise alarm clock thing that mimics the sound of the sea and waves crashing ( the setting I use and pretend I'm lay on a beach ) lol. Closest I'm gonna get to a beach for a while anyway. Can choose other noises if you prefer , I also started to wear a fitbit tracker . It shows massive improvement in my deep sleep and definatly worth a try for around £20 for clock and £80 for tracker watch .

I gave up levothyroxine in January due to 7 years of suffering with side effects from the meds .

It's not been a easy task along with high dose of anti depressants I've managed to cold turkey ( I do not recommend this however ) I had no choice and can bee seen in my posts .

Sleep deprivation is not addressed on this med and it effects our moods , I hope that anyone who reads this is in a position to try what I have suggested. Feel free to contact me for advice although I am not a doctor 🤓.

Tam x

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I suffered from insomnia for years I would lie awake feeling my heart pounding palpitations inner tremors all I wanted was to sleep and be peaceful out of my daily misery. I couldn’t have sleeping tablets doctors said they were too addictive. Eventually I saw a doctor who prescribed amitritryptiline from the very first night I fell asleep easily and sleep soundly it certainly worked for me and no side affects . Maybe worth asking to try it ??

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I've never slept well, and still don't. I've tried everything there is more or less including Magnesium. "Good night Maggie" was recommended slept well first night after that no good at all. Tried 5HTP tabs and on them now, sometimes I sleep ok but never feel refreshed. I had my first bath in years last night with Epsom Salts. What a struggle to move in that hard old bath. My cat pestered me early hours for food. :(

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Hi Plumcake,

Have you been diagnosed with Fibromyalgia? I presume you have if you've been prescribed Duloxetine (from your past posts). If so, try approaching your GP for a referral to a Sleep Clinic, showing them printouts of your research below:

Fibromyalgia News Today

I recently read an interesting item by the National Fibromyalgia and Chronic Pain Association that noted:

“Sleep dysfunction is considered an integral feature of fibromyalgia syndrome. Seventy percent of patients with fibromyalgia recognize a connection with poor sleep and an increased pain, along with feeling unrefreshed, fatigued, and emotionally distressed. Several studies have linked abnormal sleep with these symptoms.

Some researchers have studied fibromyalgia and sleep, confirming the disordered sleep physiology in fibromyalgia. This abnormality has been identified as an alpha-wave intrusion sleep anomaly, which occurs during NREM stage-4 sleep. This intrusion into deep sleep causes the patient to awaken or to be aroused into a lighter level of sleep.”

Also:

fmcpaware.org/r-v/sleep-dis...

everydayhealth.com/fibromya...

When I can get a reasonable level of sleep I can control my Fibro symptoms, I just wonder how many other sufferers could be helped with a good night's sleep. Although doctors say that melatonin is not for long term use, they are happy to put us long term on a toxic cocktail of several other medications which, certainly in my case are ineffectual - I cannot tell you just how exhausted and in pain I am...or maybe you know because you are as well!

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Yes I was diagnosed with Fibro after I paid to go privately, my then GP refused to believe in Fibro.Kept saying ti was bursitis and only allowed me to gave ibuprofen, but they only went by what I told them, no tests were done, It was dam joke, and the bloke must have laughed his way to the bank. I've never slept well even as a kid.Apparently I used to sit up in my cot and laugh and rattle the sides ha ha. I'm taking my tramadol again as I cannot cope with the pain I've got at the mo, plus the CBD oil. When this flare up calms down, (hopefully soon) I will come off the trammy again.

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Plumtree, if you are diagnosed but your GP doesn't believe in fibro, then it's time to get another GP - how dare he dismiss you like that!!!.

When I was 2, my twin brother and I were in an isolation ward with whooping cough (we missed the newly discovered whooping cough vaccination by around three months apparently). Whilst my twin slept soundly in his room, I lay awake, whistling in my little room. My auntie, who was a nurse at the same hospital at the time told me that the nurses thought they had a man prowling the wards!

Tests in the sleep clinic have confirmed that I have a condition that means I will never get a proper nights sleep.

As you have always been a poor sleeper, even as a child, then you may be one of the fibro sufferers, and I'm convinced there are many, who would benefit from sleep improvement. It's not a cure but it makes fibro-life a lot easier to bear. Have a look at my today's reply to Eddie83 x

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That GP was a long time ago and that';s why I went privately as he didn't believe n fibro as many did not then and some still don't. I have had several different GPS since then. I' m sure decent sleep would help, I've had two consecutive nights with an hour then woken up. Smoke alarm went off last night about 3 am and then about half hour it went off again and again and then cats come in wanting brekky. I've tried everything going to help me sleep. Taking some 5HTP at the mo, Good night Maggie -plus spray magnesium no good.

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You'll need to get a sleep clinic referral to establish what you specific sleep problem is; do you snore? Could it be sleep apnea?

Have a read of the links I sent you in a previous post and see if you recognise that particular sleep pattern. If so, print off and show your GP to help get the referral x

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I don;t know if I snore, never been told I do, but I've been on my own for many years now so have no idea. I will read up tomorrow as Im too tired and now I got more aggro My boiler has started to make the most appalling noise Very scary, my legs went to jelly. So had to turn hot water and heating off,. Only just turned th heating on as I felt a bit chilly, when it started to sound like next door were doing building work. So not hot shower or bath, till I can get that fixed, whatever is wrong with it not that old, unlike me.

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Have you tried a water filter you may be sensitive to the toxins, I have found this has reduced most of my pains and works almost emidiate if your strict and hydrate properly, sluggish blood slows everything down .

Tam x

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Yes I've got a separate tap for filtered water. But I doubt that filters out all of the toxins, do they still put Fluoride in water now? Apparently not in my area uk-water-filters.co.uk/fluo...

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Try vitamin D3 and K2 reputable, along with B12 ,selenium and magnesium will address any pain and will also need your folate and ferritin tested . Supplementing and pain free most days.

Tam x

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I already take Vit D3 and K2 and magneisum I can only tolerater for one or two nights as it gives me very bad diarrhoea, whichever form it's in, malate, bisglyconate, citrate, (used to relieve constipation).I've tried em all. If I have any more I will be really overloading my system.

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I assume you are aware that melatonin is made from serotonin? That is why I use an assortment of amino acids and their utilization co-factors, for sleep. Tryptophan metabolism is key. Don't have to depend on $#!@* MDs and their $#!@* prescriptions.

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Yes, I do know Eddie83, that's why I tried 5HTP, made sure I was prescribed an SSRI med, optimised my vits and mineral etc but to no avail - in the research I've done in the past 3 months I found a piece of research that concluded that some people have an impairment to their pineal gland that disrupts the manufacture of melatonin. Unfortunately, due to being severely brain fogged (like, spaced out and on another planet due to being severely sleep deprived and befuddled by the god-awful replacement meds) I did not save the links to this piece of research.

On a positive note, yesterday's emergency GP appointment with a very knowledgeable locum GP has resulted in her persuading the senior GP to reinstate my Circadine melatonin (on a three month review basis), which I used last night. Today I had the strength and energy to 'Karcher' clean the conservatory roof - yesterday I barely had the energy to get the machine out of it's box!

I'm knackered now but it amazing what one reasonable nights sleep has done for me.

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Maggi999 I notice you mention make sure you had an SSRI med prescribed. For what purpose? Or do you mean you have to take antipressants but you should only use SSRI type. I'm on mirtazepine 15mgs which belongs to a class of drugs known as tetracyclic antidepressants.Do you mean that taking anything other than a SSRI is not recommended if also taking 5HTP? I'm also now on a beta blocker and a blood pressure tablet. I reckon I should speak to doc about all this, but when I;'ve asked any doc about unprescribed stuff, they refuse to comment and say speak to the seller. As if they know anything.

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Many different antidepressants are used to treat Fibro symptoms, particularly Selective Serotonin Reuptake Inhibitors as they make more serotonin available to the brain; serotonin is required for the body to make melatonin. SSRI's are good for Fibro pain for some people as serotonin is one of the chemicals used by the brain to block pain.

I only requested an SSRI because, as a fibro sufferer I am low in serotonin and I wanted to flood my system with serotonin to relieve pain because I was desperate!

There is nothing wrong with taking Mirtazepine if it helps with your pain symptoms.

5HTP is also good as a precursor for the manufacture of melatonin in the brain. Great care should be taken if you take SSRI's and 5HTP together as you may 'overdose' on serotonin, causing Serotonin Syndrome which can be life threatening.

You should not normally take SSRI's and 5HTP together.

Please be aware that Mirtazepine also enhances Serotonin levels; if you are also taking 5HTP, read up on symptoms of Serotonin Syndrome.

If you want to check up on the interactions between your different prescribed or self administered drugs it's best to ask a pharmacist. Or you could type 'Interactions between drug A and drug B' in your search browser.

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I don't find Mirtazepine helps with pain at all, nor sleep. It lifted the depression and anxiety and the inability to eat, now I eat too much.At the mo nothing seem to be relieving the pain in my legs, knees and ankles. I'm taking the Tramadol slow release again 100mgs 2x a day. Will be calling GP to see if I can get an appt before end of week to discuss the meds etc. Would you believe I've had to correct typos so many times on this paragraph. As you can see I type things back to front and join up words etc etc. Sometimes I can't understand what I've written or typed. It's getting worse too.

I am also slightly concerned about my alertness driving. But that could be the lack of sleep rather than meds.,

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I sincerely believe that you should address the sleep problem as soon as possible. Having problems with meds, boiler etc will make your sleep and anxiety worst but a few good nights sleep will do you the world of good, best wishes and good luck approaching your doctor about it x

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I wish I could sort the sleep problem out Been trying enough years to find a solution. It can cause many health problems including contributing to diabetes, and I'm borderline with that.

Yes the boiler man came today and it's gonna cost me £216 to replace the pump which is what he thought it could be, causing the boiler to overheat and it could well have blown as it sounded just like a Wallace and Gromit machine ah haaa But really it was scary, thank you for your concerns

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I think you may have a point .dr Lowe stated that the medication given to fibromyalgia sufferers made many feel worse

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i think it is common sense as the liver has to filter so many drugs in large quantities in many cases - and the health of the liver reflects our general health too ... I wonder if anyone ever checks the PIL and on-line information regarding side-effects ?

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Changing to a inexpensive water filter has changed my life along with a dressing nutrition, hope this helps and unfortunately we are what we eat . Looking after our blood and bodies needs to be addressed before turning to medications . We are all to quick to mask with a quick fix but won't help in the long run of our existance if we are to have 1 .

Tam x

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I am another banned from fibromyalgia forum trying to help sufferers.i believe patients are so relieved to get a diagnosis at last they won’t acknowledge thyroid disease as the cause because they have had thyroid blood tests which came back normal and their GP s /doctor tells them this is proof so hypothyroidism is dismissed., yet they believe a diagnosis of CFS/fibromyalgia that has no specific test . Shaw’s is correct dr John Lowe was another researcher who tried and tested thyroid hormone therapy to treat patients diagnosed with CFS/fibromyalgia with great success and thanks from his patients. He states “for over 40 years fibromyalgia researchers have said they do not know what causes it they have never made anyone well and can only offer drugs which may help to a degree but often make the patient feel worse .they are missing what is plain to see, the symptoms which are many and varied are the same for hypothyroidism “. .im sorry but I don’t under stand why doctors who surely must know the symptoms of hypothyroidism, wont prescribe thyroxine as a trial .it is a hormone not a drug and cannot harm any patient especially as they would start low dosage and gradually up it till the patient feels well and it is very cheap to prescribe so no drain on the NHS ( UK)

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Its the TSH test thats causing all the issues and the appalling training at med school

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A totally agree .dr Robert Utiger a reknowned researcher in thyroid disease developed the TSH blood test and it has been used since the sixties for diagnosing hypothyroidism and hyperthyroidism. He has stated himself “I hope doctors are still practicing medicine and not relying on the blood test , treat the patient by symptoms , basal temperature and heart rate “ take your temperature as soon as you wake before getting out of bed then every four hours for a few days ,if your temperature is a few degrees lower than 37 degrees / 98-6F this could mean you have a thyroid problem .

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That was exactly what Brida O Barnes dicumented and wrote about all hin patients long long before Utiger came on the scene

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Exactly ! And every patient with hypo symptoms and a low temperature was prescribed natural desiccated hormone which was all there was for the thyroid condition , In the most part it worked well . Why this reliance on TSH blood test??? And T4 as the cure . As I understand it T4 has to convert to T3 which is the active hormone one would think the cure would be taking T3 or a combination .

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Nope it's the meds and our environmental exposure to toxic elements.

Tam x

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Exposure to toxic elements certainly is having severe effects on people

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Yes I've had a lifetime and knowing what I know now ...well let's just say there are a lot of things need addressing as I am trying to answer repetitive questions as best that I can . I can't elaborate however mu posts cover my concerns .

Tam x

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Not sure when you were banned but I have detected the winds of change on the Fibro Forum of late. I was restricted moons ago - so left ! I posted about Magnesium and apparently Dr Mercola is a charlatan. I have re-joined and occasionally post about testing vits and minerals and obtaining copies of results that are legally theirs - basically trying to encourage folk to take some degree of responsibility. Not sure I have any impact but have managed to bring one or two over to TUK. 😊

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Your lucky then because i have tried appealing to HU admin ..the lot but no one will provide evidence of what misdeed i was banned for and will not discuss it either

I am declared guilty without a shred of evidence ....that is illegal

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That happened to me on Crohns and Colitis Forum. According to the one and only Admin I gave the imprrssion VitD & B12 was a cure and drugs not needed. No discussion. HU said there was nothing they could do ... I can still communicate with a member there and send her relevant links 😊 Your situation is beyond understanding ...

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I cannot even communicate with other members

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Also banned ...and also unable to communicate with others who have been banned!

In my view the attitude of the admin chap (and some of his colleagues) rendered him unworthy of the post. No doubt others may disagree....

However, glad to read Marz suggests things are now changing. Glad she can help again.

I was appalled that info to their members was being limited/rejected

Attitude generally negative, accepting of their diagnosis and rather "poor me".

Definitely afraid of something....

Apologies for catty reply...just sorry for those suffering without the help they need.

Proud of my fellow "Thyroid Warriors"!

In haste

DD

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:-)

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That's ridiculous to not know what you have done or even discuss it with you. Sounds like a bunch of kids running the site

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Not even kids ...more like a bunch of politicians

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Just learn when to keep it shut 🤐 .not everyone has our understanding and are happy to find there own way it seems . Shame but true and we on thyroid UK/ healthunlocked are happy that your here.

Tam x

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Hi, I do agree that Hashimotos doesn't show up on blood tests for many years and I wish my GP's had known more about the symptoms I suffered and diagnosed my Hashimotos many years before it showed up on blood tests. However, thyroxine may be a hormone, but too much can be dangerous and cause heart failure, but I suppose overactive symptoms tell people in the know if they're taking too much. Unfortunately, my dear mum thought she felt better by overdosing and passed away due to arrhythmia and had a sudden cardiac arrest. Her Specialist had warned her that she was taking too much and that it could be dangerous. I'm not blaming her, as she'd suffered for many years and her medication never really made her feel better - she ended up taking Armour, but may have needed t3. Nobody 12 years ago seemed to understand and help her so she was driven to overmedicate as it made her feel better in some ways.

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Yep I agree, I asked one GP for a thyroid drug, he refused saying it was not known if I had a problem, so refused to prescribe it.

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I suffered for years saw a new doctor she could see how ill I was talked things over and agreed , yes I think you have thyroid disease and I feel I should give you a trial of thyroid hormone but, I am not going to , if I give you a medication to treat something that all your blood tests say you do not need and something happens to you, your family could sue me and I have just bought this practice, I could lose everything I have worked for , so no I’m sorry I can’t risk it. But she said ,if you go private and pay he/she will most likely prescribe thyroid hormone replacement . I could see her point and did as she suggested. The private doctor gave me thyroxine to trial and there was such a good result and relief I was 50% better so I stayed on thyroxine . As time went on I wasn’t doing well on it but struggled on with flare after flare so after 19 years end of my tether I demanded a thyroid scan different doctor , but she actually said yes . Had the scan gland shriveled and inflamed diagnosis hashimotos. Still only allowed thyroxine said no to T3 and no to NDT. To cut a long story short I now self medicate with thyrogold Dr John Lowe . Amazing I have my life back .

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Jaybrooke You say you self medicate with Thyrogold Dr John Lowe, can you explain what you mean by Dr John Lowe after So pleased you have got your life back. must be wonderful

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Sorry let me explain, thyrogold is a thyroid supplement that is formulated by dr John Lowe it is an extract from bovine (cattle) in new Zealand..it is pure thyroid sold as a dietary aid which can be sold without a prescription . H was dedicated to researching the connection between thyroid disease and fibromyalgia, . .

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Right I understand, thanks :)

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Thyroid hormone is just that a replacement hormone - and not a drug :-)

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Yes I realise that

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It is used with carcinogenic fillers that cause side effects to some ..

Tam x

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I think we all get different or similar side effects whatever you take. It's a job to know what's causing what

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I left that group as it was too depressing, & posts re self help were pulled. My local FM group is run by someone who hadn't even heard of magnesium

for pain relief let alone vitamin D. etc, just the myriad of drugs that

are ineffective. I couldn't bring myself to attend a moan-in.

My symptoms were greatly reduced with NDT then in combination with T3, & good nutrient tweaking. Not so lucrative for the drug companies, though.

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Interesting you should say that. I was talking to my husband yesterday about the different groups and how with another online group I’m while they all seem to be nice and supportive, they tend to moan a lot more than we do - or maybe here in TUK we moan in a different way. Also in that group you don’t seem to be encouraged to mention anything that helps you and may help other members - I’ve seen people told off - think it’s considered you are ‘telling’ them to take drugs other than or as well as what has been prescribed for them etc, etc.

Anyway I said that us TUK members are a feisty bunch who are really positive - even when they are feeling lousy and do their best to help themselves to get better. I definitely like the attitude of this group 😉

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I used to get really down reading the FM posts as there was no light at the end of the members' tunnels, & seemingly no desire to see any. I appreciate it's hard to help ourselves when we're ill, but it was soul destroying. I had four months off HU altogether due to online **** elsewhere.

I've wept reading some folks posts on TUK, though I know that if the poorly thyroiders follow the wonderful & positive advice provided, then life can get better. TUK sets a high standard for health related forums, & the PA group is rather good, too. :)

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I won't even go on our local Facebook page cos there is nothing worth reading, and often negative lists of symptoms, that depress you. Cannot see any point in showing posters of reals of misery, Invisible illness they call it! Well most are invisible. You cannot see a cancer inside someone or a bad heart. Before I die I would love to get up one day and feel normal health. I can only remember one day I woke up and stepped into my slippers feeling good, since I've had this crap illness.

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Plumcake Have you been following nutrition & supplementation advice, changed your meds etc?

I don't trust any of the medics I've seen in 20 years, especially with my endocrine health.

If there's only one thing I have learned, it's to trust the good advice on here, & keep looking for what's missing.

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No I' haven't followed nutritional advice on here BadHare . In fact I rarely come on this site but decided to check it out after being sent an email. I've come off my meds for pain relief, the Tramadol slow release I was taking for years, and started on CBD oil last April 2018. I've either not had any pain since I started the CBD or it worked a treat, but now I got a flare up and in loads of pain. :( Can you place a link to the nutritional advice for me please? I've searched and found nutritional support but not sure if that's the right place for me.

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Are you able to set aside a few days or an hour or so each day to read through information on TUK & the forum? I can definitely recommend trawling through as many posts as possible regarding the cofactors we need to make our thyroid hormones (our own or medication) work better for us. I remember being amused at seeing people mention the importance of getting our ducks in a row: vitamin D3, B's especially B12 & folate, iron & ferritin, magnesium, & all the other micronutrients that our diets might be missing, or we need from supplements. If anyone else reads this, please chip in with what i've forgotten.

It's not a quick fix process, I've been adding & excluding, tweaking, & having blips for 4 years, but I've not regretted any of the process I've been through to reduce my FM symptoms which clearly weren't. It's not something our health professionals seem to know much about, my GP used the word snake oil when I said I was going to take NDT, then quackery with regard to T3. The great admins & folks on here know what to do from experience.

We're all different genetically, & some things work better for some than others, but the nutrients we need are all pretty standard. Don't be dishearted by all the information, it can be daunting at first, especially if you feel so ill, but the information will start to make sense.

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I'm not very good at reading reals of info as it just won't go in, but I will endeavor to do a little each day and hopefully that will be taken in and be useful to me thanks so much for your input

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Filtered water , bone broth ,fruit veg , get your folate and vitamin profile, plenty of fresh air and 50 star jumps a day ...promise .

Tam x

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Yes sounds ideal

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I was diagnosed with fibromyalgia in 2006 and started seeing Dr Skinner when we moved to Scotland in 2007. He was in no doubt from my first visit that my problems stemmed from undiagnosed hypothyroidism. I am now on T4+T3 (Nature Throid) and almost without pain or fatigue. I also found the fibromyalgia forum very disappointing (I could use other adjectives) and no longer post on it...

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Absolutely reallyfedup

I’m experienced that on the Fibromyalgia forum, not banned, but very aggressive and rude when I suggested thyroid issues.

Best wishes

Peanut31

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Yes but many of us who have been banned from HU fibro forum are also blocked from messaging each other and HU refuse to deal with the issue

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Not just that forum. >:(

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yes, several have their little cults and you are persecuted for a mention out of the clicky box. Sad to see some suffer as I once have,but that is their choice.

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Hmm and that person was T** A*****

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No longer there in the new set up !!

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Probably got a new name ......what i object to is false complaints and being banned and blocked from messaging similar posters...HU admin are delinquent in refusing to sort it

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Not on the Fibro board ...they are all playing the Benefits game fir all their worth

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Many of us test privately - consult here and then self medicate 😊

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Research dr John Lowe dr Gordon skinner dr David Derry .

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Dr Skinner and Dr Derry were sadly hounded out by authority

Dr Myhill and others similarily are or were on watch lists

The powers that be do not like anyone who thinks out of the box

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You may be interested to read the 10 posts similar to yours under the heading - Related Posts. Scroll down and down if you are on a phone 😊

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Thank you for posting. I feel as if I’m banging my head against a wall with Drs.

Diagnosed with fibro - massive flare at the moment so feeling awful. Huge goitre that gets bigger the worse I feel. In a good day, with minimal pain and fatigue it shrinks to barely noticeable. I’m told there’s no relation and a goitre is “ normal”. I have all the other symptoms of hypothyroidism, dry hair and skin, dry, gritty eyes and constantly dry mouth and throat.

At the moment don’t have the energy to fight but I know I have to find a dr that will look past the blood numbers.

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Hollyberry ...what are your results ...a goitre is always thyroid trouble ...often Hashimotos but it may well be CENTRAL Hypothyroid and only testing TSH will never find that

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Last time I had them tested all came back within range. I need to test again but too many bills at the moment.

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My tests are in range, but that's normal for secondary hypothyroidism, though all the endos I've seen don't acknowledge or understand this as it's not diabetes.

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In range means zip ...post your previous results ...all my lot were diagnosed CH with a TSH of 2.9 but low T4 and T3

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Me too

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How a doctor can say a goiter is normal is unbelievable !! I like you was banging my head against a wall with doctors for years, feeling so ill and not a clinician or endocrinologist would prescribe thyroid hormone replacement because the , so called , “gold standard “ blood test was always normal. You need to give thyroxine a try you’ve got nothing to lose , yes find a doctor who will think outside of the box , hah not easy! Of course everyone is different so which hormone you need may not be the same as someone else . Some need T4 alone some T4+ T3 or NDT it’s trial and error but thyroxine is a good starting point . Good luck

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Thank you. When I can afford another set of tests I’ll get that done and then have to find a private Endo or self treat. Really fed up of feeling so ill day after day. I’ve always suspected that I don’t have fibro, I don’t get the same pain as others. Lots of headaches but stiffness in legs etc. is more likely to be from the overwhelming fatigue that prevents me doing much.

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Perhaps better to save the money and self medicate on a low dose of thyroxine and see how you feel . You can get lots of advice on this site , only too willing to help fellow sufferers .

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I couldn't afford the tests as well as the meds & co-factors, so opted for the latter.

I took NDT very cautiously & slowly, then added T3. I had a few blips but seem to have achieved a good seasonal balance as I added a few extra supplements, too.

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Holly you should not have to pay for tests this is ridiculous ...what are the previous test results

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06hollyberry You'll need something like the Hubble telescope to find one!

I had a "normal" goitre too. It normally disappeared within a year on THs.

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A wonderful man, sadly missed. He was asked to look at fibrosis patients not responding to treatment. Basically he wasa virus chap but on looking at the case notes he wassent realised the symptoms were similar to thyroid issues so he interviewed all the people who were sent to him and did bloods etc but also asked if they would trial thyroid meds till he saw them again in a couple of months. Many reported back feeling great. QED! One lady wasable to through her wheel chair away. I also knew someone who knew the lady! But sadly the powers that be vilified him because he was not a thyroid expect!

He had come into this situation with fresh eyes. He had had various prizes etc through his lifetime for work he had done so why couldn't he become a thyroid expert? Many of us have had to look and learn as our GP's have been sadly lacking!

RIP Gordon Skinner

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The Supervet ( Irish chap, cant remember his name) was on TV this morning saying surgery he does to save animals is not available to humans. Apparently bone cancer in humans and animals is almost exactly the same. He wants to look at merging human and animal medical expertise but not allowed to. British government doesn’t like that. Someone else prepared to think outside the box to help humans as well as animals but not allowed to even try.

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Well. notquite the same as Dr Skinner thought that the fibropatients he had been sent could have been misdiagnosed and possibly had a thyroid problem. May be I didn't make it clear but he did find quite a few who should have been treated with thyroid meds and hadnt been.

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Yes indeed, he should be Sir Noel Fitzpatrick for his mazing work. How foolish it is not to allow this to become use for humans. Do you think it's the big pharma that puts the mockers on it all? They rule medicine world.

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It could well be.

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Don't dogs get better treatment for hypothyroidism than humans?

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They certainly do for B12d weekly shots it’s normally 4 a year on nhs pathetic

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Diagnosed with fibromyalgia in June 2001. I took a leap of desperation in August 2015 after slow deteriation and with a lot of difficulty got my GP to test my thyroid, all results in range. I told him I was going to self medicate with NDT as I was convinced I had hypothyroidism as well as Fibro and that's why I was getting worse. He understood but warned against. Some things improved quite quickly. I could swallow with ease and my throat didnlt feel blocked within a couple of weeks and mood hugely improved. Been up and down over the years.

Now TSH .39 Ft4 12 bottom of range, freet3 6.08 top of range 6.80 b12 907, folate mid range, ferritin 107, vit d 118. Pain is horrendous still, fatigue is horrendous still, brain fog is.... Well bloody foggy still.

It is so upsetting when you read the way others dismiss the illness that has changed your life beyond recognition as basically not being real. As caused by pain medication??? Really??? Self abuse huh.

You have no idea and to be honest for your sakes I'm glad you don't. This is pointless as I have tried before and those who mock do not listen.

But read this as a scream of frustration and oh I so wish you were right.

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Hi, my poor Dad has suffered from fibromyalgia on and off and I wouldn't wish it on anybody. When my mum passed away suddenly the shock seemed to trigger his fibromyalgia so on top of his grief he used to sit up all night in his lounge (he called it his torture chamber) with what he described a feeling like somebody was stabbing him all over his body. I read an article written by a lady sufferer who recommended Amytriptaline and a strong anti-inflammatory (can't remember the name). This seemed to work for my dad and touch wood he's off medication and hasn't had a bad flare up since. I now wonder about his thyroid - as usual he's had it checked and in the normal range.

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I sympathise with your Dad. Someone I rang when I suspected I had Fibro from a local support group I found in our local paper, reckoned I'd had mine since childhood. Spoke of "growing pains", I was told I had "growing pains" when I was out walking with my Dad I moaned about my legs hurting They still do 57 years on. I also have Sjogren's syndrome, COPD, oste-arthritis and am pre-diabetic. :( Many years of stressful relationships as a child and adolescent, and in my marriage of 28 years, plus a very bad one after for 6 years, reckon has caused the Fibro to manifest itself big time. I'm in a flare up now. I stopped my Tramadol slow release and went onto using CBD oil, since April 2018

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You didn’t say what you were taking or dosage or for how long?.the swallowing eased and throat not blocked sounds a possible thyroid problem. Have you had a thyroid scan?? Doctors haven’t got X-ray eyes can’t see if your gland is shrunken shrivelled ,inflamed, swollen .any of these will affect your gland doing it’s job . I don’t mean to upset or hurt any one suffering I only know I was diagnosed with CFS/fibromyalgia years ago and suffered for 19 years before I was allowed to have a thyroid scan which my GP said would find nothing untoward. My results were gland inflamed and shriveled diagnosis hashimotos. I now self medicate and feel life is worth living again best wishes

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Think that’s part of the problem Jaybrooke, I’ve seen doctors mentioned on here who really do think and act like they have X-ray eyes.

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I was told by my GP " it's all in a loop with its own feedback" looked at me like I was nuts...

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Hope you looked back at him like he was nuts! Because he sounds it 😉

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Hii have under active thyroid but have never seen blood results, fibromyalgia, IBS, diverticulitis, gastritis, diabetes, costochondritis, sciatica to name but a few!! I am a glass half full person , always being positive, I will keep smiling 😊!!! I will always accept any form of help available

Love and hugs to you all Lynne xxxx

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You are legally entitled to have copies of all your test results with ranges. You can then monitor your OWN progress and check what has been missed.

Some of your symptoms could be linked to under treatment of your thyroid. Do ask for all your results with ranges and re-post your reply here in a new post with your results and members will comment and try to help.

Have you had B12 - Folate - Ferritin & VitD tested ?? All need to be optimal for you to feel well and for your Levo to work well.

thyroiduk.org

Happy to help 😊

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Thank you, don't think I've had any of them. Thanks for your help. Lynne

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Sadly they are NOT routine tests and have to be requested. When they are low in range they can be the cause of many problems with health. GP's often say results are normal/fine/OK when they mean in range - it is where you are in the range that is so important. Hence why you need copies of your results so you can check ..

Some surgeries have on-line access to your records so worth asking. Or phone the surgery - request your results for the last few times and say you will be along to collect them in a few days. You do not have to give a reason nor can they refuse. It is important to take control of your health. Make sure the correct thyroid tests have been done ...

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Yes I agree - I was feeling really ill a few months ago and asked my gp if she would increase my thyroxine. She agreed because of my symptoms and said as I was in the low part of the range a 25mcg increase shouldn't majesty he hyper. I've felt so much better since that increase and now have to make sure I'm in the high part of the range. As you say, GPS think as long as you're in the normal range somewhere they're fine.

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Thank you so much xxxx

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Thank you so much xxxx

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Sorry, that was meant for Marz xxxx

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He was a wonderful, brave kind gentleman who has changed my life. Without him I would not be with my friends and family today. I would love to read his research. Miss him, but I was one of the lucky ones who had the privilege of knowing him.

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Exactly the same in my case. Feel much better once one GP put me on levothyroxine even though another Dr said they wouldn't have put me on it as my Tsh was only marginally raised but my TPO result was positive. I felt so awful I could hardly put one foot in front of the other! Now i'm much much better!

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I have been asking for thyroid tests to be done for my diagnosed condition of Fibromyalgia.

Each time they are done the test results come back normal withing range.

But having read about the book by Dr Barry Petefield Called The great Thyroid scandal and how to survive it" I am still at a loss to know if this is my problem.

The NHS range of tests is not adequate. I did ask one GP to give me a thyroid medication, they refused as they said they did not know what they were treating. Do they anyway?

If after a lifetime of suffering to find out it could be thyroid I will be out of my mind with anger.

Just found this on the net

Office Address (not clinic):

The Peatfield Clinic

16 Southview Road

Warlingham

Surrey

CR6 9JE

Tel: 01883 623125

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Sadly Dr Peatfield is unwell and may not be currently working. I saw him at his clinic. He teaches you how to monitor and observe your health which I found helpful. A lovely man ...

An updated version of the book you read is - The Thyroid and How to Keep it Healthy.

Which thyroid tests did they do ? You are legally entitled to have copies of your test results - so do ask for them and when you have them start a new post and members will help/support. We need to monitor our own progress and check what has been missed ...

Also test B12 - Folate - Ferritin & VitD - these are not routine and need to be requested. Reading posts on this Forum will illustrate how little Docs know about the thyroid - or how their hands are tied.

The FT3 test is the most important test and very rarely done in the NHS. Have you had your anti-bodies tested ?

Private testing available - sent to your home. Click onto ABOUT TESTING in the link below ...

thyroiduk.org

Remember normal is an opinion and NOT a result 😊

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That's sad to hear. Yes I've also heard of the new book. I've no idea what thyroid tests they did for me, but I had to request the tests. No anti bodies tests as far as I am aware.

I'm losing my hair also and eyebrows and have worn wigs for a number of years. No one else in the family had hair loss.

GPs do not like you asking for certain things to be done, as it seems we may be questioning their knowledge and worth I spose.

But I will ask for a FT3 Folate, Ferritin and VitD although I take Vit D3 regularly alongside K2 which I am told helps it work better.

I pay monthly for Benenden Hospital (Private Health) not sure if they can help, but you do always have to be referred by a GP for any condition before they will look at you.

Thank you for your comment Jaybrooke

Best wishes fo your better health

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If you ask for copies of your test results then you will see if anti-bodies were tested. Docs seem to ignore Hashimotos as it's auto-immune - and leaves them lost 😊 It's the most common thyroid condition globally. Why not have testing done through Thyroid UK - click onto - About Testing - in the link below. Medichecks have Special Offers on Thursdays and will be flagged up on the News Feed here on the Forum.

thyroiduk.org

I doubt very much if the T3 will be tested in the NHS - they seem to want to keep people ill by not doing the most important test of the ACTIVE thyroid hormone - needed in every cell of your body to keep it healthy.

Don't forget to add B12 to your list of tests needed. Do not worry about your GP's feelings - it's your body - your health. Maybe your Private Health Provider has some Testing packages - worth asking.

Hair loss can be linked to being Hypo - which in turn can cause low iron etc ... We have to read and read and then some more ! - many of us here have taken control of our own health. I rarely see a GP - have my tests done annually - adjust where necessary - and keep on reading and learning from people who are knowledgeable.

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Thank you Marz. I will try and get those suggestions fulfilled. I go for blood tests next week, but not sure if I can request the others at that time. Do not know what the GP has asked for. As usual you are kept in the dark.

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Time to join those of us who have left the dark side of medicine and found the light .. 😊

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I ask the nurse

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Hair loss is a red flag for hypothyroid. You might want to check into hypothyroidmom.com's list of 300 thyroid symptoms.

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Nessy50 You ask the nurse to do what exactly? I am going today to see the doc, 10 min appt) Had my blood tests on Monday, no idea what they are for. Did ask nurse if she knew what tests are for, liver and other stuff, can;t remember, too tired and brain not working, 2 hours sleep each night and loads of stress.

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Just saw this did you get copies of your tests & post on here, did they do vitamin assay? I get tests done yearly cos Coeliac, no need to test B12 but it was done last time, folate, ferritin, Vit D, Fbc & electrolytes they do. Loads of ongoing stress here too luckily sleep pretty well, odd nights awake. I take magnesium.

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