The Metabolic Treatment of Fibromyalgia by Dr Lowe - Thyroid UK

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The Metabolic Treatment of Fibromyalgia by Dr Lowe

Alanna012 profile image
59 Replies

Morning!

I was wondering if anyone on this forum has read this book? I have a fibromyalgia diagnosis that I personally think is related metabolism dysfunction as a result of decades of no treatment, then later under-treatment of thyroid illness.

I was all set to purchase, but the price is ^very^ steep, (I can buy quite a few vitamins with that cash) and so I'm wondering how it compares to the Barry Peatfield book which I already have.

I'm intrigued by the idea of T3 resistance it proposes as I'm starting to suspect this is my issue. I'd like to know more about it, I find lots of resources telling me fibromyalgia pain is brain modulated.

If you've read this book and/or other similar books, or can recommend some related reading I'd be interested in your opinion.

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Alanna012 profile image
Alanna012
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shaws profile image
shawsAdministrator

Dr Lowe gave thousands of statements and was also an Adviser to Thyroiduk.org.uk before his untimely death. He fell and it caused a brain blood but worked in his bed until his last day.

He was well-loved by those who couldn't restore their health and I will give you a link that may be helpful. He was also an Adviser to TUK. I have recovered my health through Dr Lowe's advice.

When he prescribed for a patient, it would never be levothyroxine. He would prescribed NDTs (now withdrawn in the UK as far as I know). For patients who were 'resistant to thyroid hormones' he prescribed T3 only.

On the following link there are a number of links

healthunlocked.com/thyroidu...

DippyDame profile image
DippyDame

Perhaps of interest!

rejuvagencenter.com/thyroid...

healthrising.org/blog/2019/...

thyroidpatients.ca/2019/12/...

healthunlocked.com/thyroidu...

Alanna012 profile image
Alanna012 in reply toDippyDame

Thank you, reading the first link!

DippyDame profile image
DippyDame in reply toAlanna012

I have a form of thyroid hormone resistance and need high dose T3-only to functionMy profile gives more detail.

shaws told me about Dr Lowe and that helped set me off on a journey of discovery and recovery.....from being barely able to function!

Unfortunately I've had to self diagnose and self medicate....medics not in agreement but my GPs now accept that this is what I do....and see improvement.

shaws profile image
shawsAdministrator in reply toDippyDame

I have posted twice on the R.A. forum and both items were immediatley erased as it seemed to cause irriation.

Alanna012 profile image
Alanna012 in reply toshaws

Thank you Shaws! Yes I'd read about Dr Lowe briefly, but never much in-depth. I think his ideas about Fibromyalgia are probably correct, because my experience seems to accord with the things he says about thyroid cellular resistance.

Dr Lowe seems to have been a truly brilliant doctor.

You will occasionally receive pushback if you try and post thyroid related stuff in other forums. I did it once and was made aware it wasn't appreciated, even when the subject concerned ME and Hypothyroidism.

shaws profile image
shawsAdministrator in reply toAlanna012

I was amazed because Dr Lowe studied Fibro as he was a researcher/scientist and doctor would who not make statements that were untrue. At least if I had something that wasn't improving I'd be willing to try an 'option' and if it didn't work at least you've trialled.

HowNowWhatNow profile image
HowNowWhatNow in reply toAlanna012

How bizarre - am glad this is not the thyroid page attitude

BB001 profile image
BB001 in reply toAlanna012

There's research that links low B12 to ME.

shaws profile image
shawsAdministrator in reply toAlanna012

I only gave them a link re Fibromyalgia and nothing else.

Alanna012 profile image
Alanna012 in reply toshaws

Really, wow, clearly an over reaction. What's that analogy about the horse and the water?

DippyDame profile image
DippyDame in reply toshaws

I was banned from the Fibro forum for raising the subject of hypothyroidism!

HowNowWhatNow profile image
HowNowWhatNow in reply toDippyDame

Eh?

Alanna012 profile image
Alanna012 in reply toHowNowWhatNow

You will banned if you suggest there is a link between sub optimal thyroid treatment and/or metabolic dysfunction in Fibromyalgia.

HowNowWhatNow profile image
HowNowWhatNow in reply toAlanna012

Whoah. But why?

What are their incentives for limiting the discussion / reasons in this way?

Do they have a different / set theory for why / how fibro comes about?

Alanna012 profile image
Alanna012 in reply toHowNowWhatNow

I think it's seen as dismissing fibromyalgia as a specific disease and suggesting it is a syndrome. The pain and suffering is very real so this idea gets pushback.

Another reason is the idea in conventional medicine that all pain is ultimately brain mediated. So logic dictates that the solution is therefore in the brain. A lot of research is headed in this direction.

Problem I personally have with this is that it leads to a proliferation of ideas that if you just change levels of neurotransmitters via anti-depressants or sleep therapy, or meditation the problem can be solved and that leads to other erroneous ideas like graded exercise, yoga and gym prescriptions. Oh and 'talking therapies'

MaggieSylvie profile image
MaggieSylvie in reply toAlanna012

I am sure that when my GP was investigating, prior to a fibromyalgia diagnosis, one of the tests he did was thyroid. In my past life hormones have always been my biggest issue, so why wouldn't thyroid problems cause FM?

Alanna012 profile image
Alanna012 in reply toMaggieSylvie

Well exactly. It should logically be the first place to look with a diagnosis.

shaws profile image
shawsAdministrator in reply toHowNowWhatNow

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

Alanna012 profile image
Alanna012 in reply toDippyDame

It's a lovely forum, and very, very supportive, but yeah. You can't have that discussion there.

Bear in mind, just as with thyroid disorder, no one will ever hear such ideas from anywhere among conventional healthcare practitioners. My own doctors gas light me regularly. Perhaps only if you go private will you receive advice contrary to that of the mainstream. So to a degree, it's understandable that people in other forums react negatively to ideas other than what they've confronted with by experts.

I'd say people on this forum aren't representative of the general thyroid or 'chronically ill' population because if you step into mainstream thyroid forums/discussions you get the very same pushback!

We must have certain personality traits in common. That or desperation. Something I'd like to ascertain if I were doing a psychology experiment.

HowNowWhatNow profile image
HowNowWhatNow in reply toAlanna012

There is a tendency in all of us humans to ridicule others and I think the Internet brings it out more . But ideas / theories aren’t always born fully formed.

Alanna012 profile image
Alanna012 in reply toHowNowWhatNow

Very true!

shaws profile image
shawsAdministrator in reply toAlanna012

My TSH was 100 and GP phoned to assure me that I had no problems at all!

BB001 profile image
BB001 in reply toshaws

Sounds like atrophic thyroiditis. Thyroid Patients Canada have articles on it.

Alanna012 profile image
Alanna012 in reply toBB001

Ok, will look this up, thanks!

shaws profile image
shawsAdministrator in reply toBB001

The way I was diagnosed was after GP phoned to tell me that I had nothing wrong. I cried. I then went straight to hospital with my already prepared blood test form and had blood drawn.

A couple of hours later GP phoned to ask who had given me a blood test form and I said I requested it myself (I had been in Scotland when I phoned surgery for a blood test form as I had been told by a person who knew me to get a test for thyroid hormones). I had never heard of 'thyroid' before like many on this forum. The GP had been phoned by the Blood Test people in the local hospital wondering why I had two tests on the same day but GP had absolutely no knowledge that a TSH of 100 meant the patient was hypothyroid (not just hypo but too high a TSH. No wonder some people could go into a coma.

aafp.org/afp/2000/1201/p248...

BB001 profile image
BB001 in reply toshaws

My TSH was 170 on diagnosis. I was told I'd feel better on levothyroxine and I'd lose weight! I felt a bit better, but this was starting from a very low baseline. I didn't lose weight. I continued to feel cold and tired. This changed when I switched to Thyro-Gold in 2015, then subsequently private T3-only, then prescribed T3 on NHS. I'm still battling now, this time to get a brand I can tolerate.

Alanna012 profile image
Alanna012 in reply toBB001

170 and still walking and talking! I'd be in a coma. Out of curiousity, when you were finally diagnosed how much levo were you initially given, with a TSH that high?

BB001 profile image
BB001 in reply toAlanna012

200mcg straight off. I was only size UK 12-14. No consideration given to the fact that my adrenal glands might have been affected by such long standing untreated hypothyroidism. Eventually settled on a dose of 150-175mcg in summer and 175-200mcg in winter.

Alanna012 profile image
Alanna012 in reply toBB001

Oh god, that sounds brutal. I would have expected around 100mcg maximum because TSH was so high. Wow. Your poor adrenals probably didn't know what hit them. 200mcg from nothing!

I once tried to raise my levo by a mere 50 all at once. It went very badly. Had to quickly drop down to the wretched 75mcg.

BB001 profile image
BB001 in reply toAlanna012

After a long time I found if I needed to increase levothyroxine, it was best to do it by a quarter of a 25mcg tablet every 2-3 days. Same for decreasing.

HowNowWhatNow profile image
HowNowWhatNow in reply toBB001

That is an enlightened position - the seasonal one - can you explain why you need less of it in summer?

BB001 profile image
BB001 in reply toHowNowWhatNow

I thought it was just because my body was under extras strain in winter due to the cold. Since then I've found these articles based on research.

I searched the thyroidpatients.ca site for WINTER and this came up.

thyroidpatients.ca/2019/08/...

thyroidpatients.ca/2021/04/...

HowNowWhatNow profile image
HowNowWhatNow in reply toBB001

Interesting that the Gallo survey refers to Sicily too, where winters are milder and summers much warmer, and so extremes in T3 much smaller, than in more northerly countries.

Is this the evidence we all need to move to warmer countries?

BB001 profile image
BB001 in reply toAlanna012

I meant to include the linknaturalthyroidsolutions.com...

Alanna012 profile image
Alanna012 in reply toBB001

Thanks!

shaws profile image
shawsAdministrator in reply toBB001

It certainly takes time to source a T3 that suits us and relieves all symptoms. I hope you find one soon.

Alanna012 profile image
Alanna012 in reply toshaws

Thanks Shaws it's all trial and error

Alanna012 profile image
Alanna012 in reply toshaws

I still find this shocking Shaws. It really is just almost unbelievable. 100!! I've had blackouts at 30!

Charlie-Farley profile image
Charlie-Farley in reply toAlanna012

Critical independent thinking Alanna012 😊👍. The best sort!

Alanna012 profile image
Alanna012 in reply toCharlie-Farley

The very best!👍🏿

helbell profile image
helbell

Hi Alanna, I have the book. It was the first serious insight into what might be causing my fibromyalgia. In my case, it was hypothyroidism, not picked up on blood tests because my T4 and T3 wasn't being tested; my TSH was top end of normal, ft3 and ft4 had fallen out of range. Thought I was dying, and my gp thought I was mad. Anyway, not t3 resistance for me, more sluggish pituitary response.

Alanna012 profile image
Alanna012 in reply tohelbell

Great you have the book. I think Dr Lowe recommends a specific exercise regime, which I'm interested in, but I can't see what he says about it on his website. Glad it helped you! I haven't heard of a sluggish pituitary.

Interestingly though, when I was first diagnosed with Fibromyalgia, I was given a phone number by the GP on a piece of paper of a woman with fibromyalgia. She had been to Germany for treatment. She told me the pituitary gland and hypothalamus was dysfunctional in fibromyalgia patients. She got this from her German consultant and another doing research in the UK who is now dead apparently.

I just wish the book was more affordable, as I feel people will shell out for it unless they've already got some clue about what's wrong with them. A book like this with potential to really help people with fibromyalgia ought to still be in general circulation and available to all. What a shame.

I have found one for £57ish (probably over £60 if you add delivery) second hand on Abebooks!

BB001 profile image
BB001 in reply toAlanna012

Have a look at the 3 free pdf chapters of a book by Dr Lowe he talks about a diet to reset metabolism and walking 20mins a day. I don't have fibromyalgia, just sub optimally treated hypothyroidism, but it worked for me.

naturalthyroidsolutions.com...

Alanna012 profile image
Alanna012 in reply toBB001

Thanks! I saw that whilst researching earlier today. The first time I've heard something vaguely realistic in regards to the amount and type of exercise you can do with Fibro. He says those taking ndt and t3 improve better and faster with this exercise regime as well as meds. Interesting as I hadn't understood that before.

I tried incorporating it around 2pm and now I'm in bed but I managed it!

So it helped you? That's very encouraging to hear. Were you on levo/ndt/t3 as well as doing the exercise?

I need the book for more details regarding specific toming exercise which he alludes to but doesn't include in the free chapters.

BB001 profile image
BB001 in reply toAlanna012

I was on Thyro-Gold. I started following Dr Lowe's advice on how to dose it and how to recover my health. My GP couldn't believe the miraculous change in me.

helbell profile image
helbell in reply toAlanna012

You might find some excerpts online. I haven't read mine for ages...I'll hunt it out. Think I paid about £30. Re sluggish pituitary....that could be normal for me. We have individual set points regards our thyroid stimulating and live thyroid hormones. The TSH test is sensitive in as much as its ability to accurately measure TSH but I believe the range is based on a large population reference of euthyroid subjects and therefore not necessarily a good fit for folks with thyroid disease, or slower pituitary responses which could skew or hide the ideal ratio of TSH to live hormones for an individual. There's plenty of professional info on here....It's been a while since I researched...but another reason why it's so important to know T3 and t4 alongside TSH, at the very least. My gp surgery is up to snuff regards testing all three at the same time but still only recognise the tsh reading.....not actually where my free t's are. So they still dont know about normal or optimal levels. I expect you know that undiagnosed or under treated hypothyroidism is often diagnosed as fibromyalgia alone, or even chronic fatigue and GPs seem reluctant to investigate the underlying cause. I think I had something like 30 symptoms including the pain markers. Originally dxd with fms by a chiropractor and my gp leapt on it to shut me up. I had to push for further tests. Now I pay for my own.

Alanna012 profile image
Alanna012 in reply tohelbell

We have individual set points regards our thyroid stimulating and live thyroid hormones.

Yes, I've started to realise this. It's not so simple a case of if you get your TSH down to x then you'll necessarily feel normal and what you're saying about pituitary response adds another dimension as well. There's so much more to treating thyroid illness. What little I know is from this site and the brilliant contributions of everyone and I know I'm just scratching the surface still.

Yes Fibro, M.E, CF often un(der)treated Hypo. GPs seem to be completely seduced by the TSH test. It is both fascinating and extremely disconcerting to visit a GP who ordered a thyroid panel be done with first presentation and reporting of your symptoms, because they know what symptoms are associated with the illness, then effectively label those exact same symptoms as something else entirely just a few months later, when your test comes back with TSH in the range.

Originally dxd with fms by a chiropractor and my gp leapt on it to shut me up

Same for me with rheumatology. When I challenged it and insisted on another consult I was told not to come back again. It got to the point where I just went with it for a few years, even after initially joining this site.

I might see how much the individual chapters are but overall if it's such a good resource as others have recommended then it seems good to have it in the library. I'll just have to wait till next month to purchase!

The money all this is costing! I think I could have brought a house by now.

helbell profile image
helbell in reply toAlanna012

Oh, love. Me too.

redherring profile image
redherring

Hi Alanna, I was having fibromyalgia symptoms & v poorly on Levo only until I discovered John Lowe in my research. His wife Tammy still sells his Thyrogold supplement which is what I use as my NDT dose in combo with T3. Self treated as docs are pretty useless / resistant to research/ thinking.

Alanna012 profile image
Alanna012 in reply toredherring

I've not tried Thyrogold, I heard it was out of supply. This was about a year ago mind. Is it available again?. I could be confused.

redherring profile image
redherring

Yes back in stock but limited to 2 bottles per person

Alanna012 profile image
Alanna012 in reply toredherring

Ok good to know

redherring profile image
redherring

I also take T3, following Paul Robinson's protocol.

Alanna012 profile image
Alanna012 in reply toredherring

Is that the method where you take T3 at specific times of the day to manage low cortisol?

BB001 profile image
BB001 in reply toAlanna012

Yes. It seems to be working for me so far.

ainslie profile image
ainslie

It’s an amazing book, about 1500 pages and big pages around A4, packed with info, it’s expensive but personally I think it’s reasonable value because of the concentration and detail of info, I read a lot of these type of books and I was more than impressed. Gina Honeyman used to work with him and she has a cheaper book on Fibro , it’s good and shorter but she defers to Lowes book. Peat fields book is good but much shorter and more general, less about Fibro.

Alanna012 profile image
Alanna012 in reply toainslie

That's a really useful breakdown and comparison ainslie. I think I'll make the sacrifice and buy it. Thanks!

gutcb profile image
gutcb

I went to GP approx 25 yrs ago with aches & pains. He diagnosed me with fibromyalgia & put me on antidepressants. My pain persisted for years so I researched my symptoms and made a connection with the thyroid gland. Dr tested thyroid & said I was on low side of normal. I talked him into prescribing 60 mg of Armour Thyroid. My pains subsided a lot, I started doing yoga along with Armour- pains were then pretty much gone. Recently I (myself) changed thyroid meds & oh boy, the fibro pain returned. I am now trying Thyro-gold & I have ordered the book Dr. Lowe wrote. I am hopeful Thyro-gold will work, as I now don't eat pork so I quit taking Armour. My heart goes out to anyone that suffers with fibro pain.

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