For those interested in Dr Lowe's method - Thyroid UK

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For those interested in Dr Lowe's method

shaws profile image
shawsAdministrator

The following may be helpful as Dr Lowe would never prescribe levothyroxine. He would prescribe NDTs (natural dessicated thyroid hormones) the very original replacement hormones that saved hypothyroid people's lives from 1892 onwards and still does today. Even though the 'professionals?' in UK have now removed it from the NHS.

He also prescribed T3 or NDTS for those patients who were 'resistant' to thyroid hormones T3 now restricted inUK unless an Endocrinolgist prescribes.

It's o.k. if you have the werewithal to pay for a private prescription but many cannot. Those within the NHS have stopped GPs from prescribing T3's or NDTs (the latter withdrawn altogether despite its safety proven from 1892 onwards). It was the very first life-saver for those who were hypo and prevented a horrible death. No blood tests but the skill of our 'old-fashioned doctors'. They seemed to be better qualified in dysfunctional thyroid glands.

I don't know what kind of 'doctors' these are supposed to be as they seem not to think straight at all. It seems to be all about cost or it may just be they have absolutely no understanding of how thyroid hormones actually work in our bodies. Poorly educated whereas our 'old-fashioned' doctors without the benefit of the internet knew how best to restore those with dysfunctional thyroid glands to good health.

I was fortunate to consult with the last two doctors taught about clinical symptoms of hypothyrodism and how to restore health. Dr Gordon Skinner and Dr Barry Peatfield. Knowledgeable, kind and thoughful. doctors.

Dr Barry Peatfield restored a woman's health who had been housebound for years and the result was a book and she then went on to co-operate with Dr Skinner to try to change attitudes of the professionals - I don't think it did anything as the professionals would deny what was stated by both doctors.;-

"Tears Behind Closed Doors" is her biographical book and it is more than an eye-opener. It is scandalous that some have awful journeys and nowadays we no longer have 'old-fashioned doctors' trained in clinical symptoms of hypo or hyper..

Dr Skinner restored the health of another who was on the point of suicide until she posted on the forum and was successful in her aim through the Scottish Government to get people prescribed with 'options' if levo wasn't improving their health:-

dailyrecord.co.uk/news/real...

66 Replies

Lovely to read all this….agree with all of course…Can you believe this….just been to collect my thyroid prescriptions,,

I buy my own t3, my doctor knows and approves..

And he does at understand the need to work our for myself what I need..so he allows me 25 and 50 Levo and also 12.5 which is very useful to me for flexibility,,,

But my doctor is off sick, and so the other partner wrote the prescription

I received a message to say he had DECIDED TO STOP THE 12.5.. I

I SHOULD BE ON 75…

Bear in mind I’ve never seen this doctor,,He doesn’t know anything about me..

NO COMMENT …Just more anxiety knowing I’ve even got to fight for Levo…never thought I’d say that!

Panda321 profile image
Panda321 in reply to Jollypolly

The 'professionals?' in UK have now removed it from the NHS for the most part, but it seems that the doctors of a number of CCG's where I live have realised that the "recommendations" to which they are refer are subject , such as those from the BTA and NICE, are actually utter crap and have appointed/allowed an NHS endocrine SURGEON at a local NHS hospital to dispense NDT on a PRIVATE prescription It seems nobody volunteers to tell patients about this unapproved fact as you only get an appointment if you complain excessively. I have zero interest in joining their conspiracy and have refused to accept.Every doctor MUST, according to the GMC, inform relevant patients about the existence of NDT if they believe it may improve the health of the patient. In this case the doctors of the CCG MUST therefore include reference of this fact in my opinion and that fact should be entered onto the recommendation sheet that they produce. Otherwise I consider that the doctors of the CCG are breaking the rules of the GMC and should be warned appropriately.

Those "recommendations" would therefore become hypocritical prompting my CCG to refuse to continue answering my queries immediately I told them this fact. I am awaiting a sensible reply to this fact from the GMC

BrynGlas profile image
BrynGlas in reply to Panda321

My GP told me that T3 was an illegal drug and told me that he would not allow me to even mention it to him in future. NDT was an even bigger red rag to him if you can believe it.

I sourced and bought my own T3 and now I take no Levo at all, which seems to be suiting me much better.

We have some appalling GP's in the UK who can't treat anyone who isn't able to fit into the 'usual' pigeon hole of hypothyroid patients.

I am moving from North Wales to the Liverpool area in the next few weeks and I am hoping to find a freindly Endo to treat me there.

I don't enjoy having to treat myself with no input from a professional at all. I am feeling so much better on T3 alone, but it is slightly un-nerving to have to hold my own hand through it all.

shaws profile image
shawsAdministrator in reply to BrynGlas

You consulted with an ignorant medical professional. We would, of course, not wish someone to develop a dysfunctional thyroid gland but, my goodness, would they sing from another sheet if they or their wives developed a dysfunctional thyroid gland.

There's nothing more important than having a knowledgeable doctor - but many cannot prescribe what would be suitable for the patient. Some may give a private prescription so that the patient can source elsewhere in the world. Some will only prescribe levothyroxine as they are afraid of losing their livelihood.

Better a hand to hold, than to be told you will only be prescribed levo.

Contact Thyroiduk.org.uk who may have the name of a good doctor in your area.

BrynGlas profile image
BrynGlas in reply to shaws

Exactly shaws, I agree whole heartedly. I believe it is who you know, rather than what you know, that counts.

Yes, I have the ThyroidUK list and when I move to Liverpool I will try to get myself referred to a decent Endo.

Thank God I am leaving North Wales, if only because of the GP's who I have had to endure here. I moved to 3 different practices since diagnosis in the 90's and none of them could - or would - try to help me as far as hypothyroid is concerned.

I shall miss living on my mountain, but I won't miss the GP's one bit.

Panda321 profile image
Panda321 in reply to BrynGlas

T3 Liothyronine is certainly NOT, NOT, NOT an illegal "drug".It is the RECOMMENDED and ONLY product for severely hypothyroid patients and stated as that on each and every one of the otherwise ridiculous "recommendations" supplied by the BTA, NICE and others.

I recommend you report this ignorant doctor to the GMC at once so that they should give him a written warning to correct his ludicrous behaviour.

BrynGlas profile image
BrynGlas in reply to Panda321

I know that, you know that!!!!!! There seem to be a lot of GP's who don't know it, it seemsPanda32!!! LoL

shaws profile image
shawsAdministrator in reply to Jollypolly

Some doctors have fixed ideas about a dysfunctional thyroid gland and the medication they should prescribe.

I'd phone the surgery and ask him to phone you. You can then tell him that you don't want your dose changed as you were doing well upon it. You really don't want to go back to unpleasant symptoms.

Jollypolly profile image
Jollypolly in reply to shaws

All got resolved today, fortunately.It is quite an issue, though, your doctor being unavailable for whatever reason, and another doctor deciding they don’t like what your own doctor is happy to prescribe!

shaws profile image
shawsAdministrator in reply to Jollypolly

I am happy for you and you can relax and enjoy your weekend as much as you can.

Yes, if we see the same doctor each time it makes things so much easier for us and at least the doctor knows what you've been prescribed etc.

BrynGlas profile image
BrynGlas in reply to Jollypolly

Very well done.

shaws profile image
shawsAdministrator in reply to Jollypolly

They seem to play a numbers game.

The comment from the doctor shows clear ignorance of anything to do with the thyroid gland. Many GPs work on theories, whilst we - the hypo patients and those who also have hyper come across ignorance in many who are medically qualified and whom we expect to lead us to better health and preferably symptom-free.

It's just like telling someone who to make a wedding cake by giving instructions ;

"just put in a quantity of flour, some sugar and some dried fruits and eggs - mix all together to a consistency and you will have a lovely cake with three tiers" -

The only people who can confirm a certain thyroid hormone replacement works for them is the person who swallows the hormones.

When one of my GPs phoned, after I had a blood test. to say - "Mrs G, your TSH is too low, your T3 is too high and T4 is too low". "Yes, doctor, that's right as I take T3 alone as you are aware". He then stated that T3 converts to T4 - "No doctor that's incorrect". He was in his 60's so how unwell any patients with hypo who've consulted with him and who never recovered.

I was lucky to get prescribed T3 from endocrinologist a few years ago. But I am fearful all the time it will be stopped by surgery. Before seeing endo I saw the lovely Dr Peatfield who was amazing. Saw him several times..

shaws profile image
shawsAdministrator in reply to katherine107

Those of us who consulted with Dr Peatfield were very privileged indeed. To also be aware that the 'professional' we had in front of us, was more concerned with relieving our clinical symptoms and who was kind, knowledgeable and restored our health.

For so doing, Dr P was pursued as a criminal for not 'dancing to the tune' of the BTA. He knew their guidelines were not suitable for many patients to recover their health.

He then resigned his licence so that he could advise us but unable to prescribe. People still travelled from all over to consult and get his advice.

katherine107 profile image
katherine107 in reply to shaws

Yes totally agree. He was concerned about people's health. Such a lovely kind man

I saw him once too, this was shortly after I had been diagnosed in the late 90's. He was such a nice doctor, it is a crying shame that he felt that he had to give up his profession.

Dr Skinner was wonderful and sadly missed!

shaws profile image
shawsAdministrator in reply to silverfox7

He was also pursued - many times - which must have caused immense stress/strain.

The latest I heard from his staff, who spent ages collating all of their research work which they did along with Dr. S and they hoped to publish it when they could get the funds to do so.

They said it would shake up the whole of the way the medical professionals view those who've got dysfuctional thyroid glands.

To have a consultation with Dr S was a privilege he was funny and put everyone at ease.

silverfox7 profile image
silverfox7 in reply to shaws

Lovely man. I’m also looking forward to read the collation of his thoughts etc!

shaws profile image
shawsAdministrator in reply to silverfox7

His staff, being devasted at Dr S's demise and I assume through collating all of their studies relieved some of their sorrow. We all hope they are able to publish and I'm sure it would open many closed eyes (Endocrinologists and doctors). I hope they do not just ignore it. We, the patients will be able to read it too and make up our own minds how best to restore our health and remove clinical symptoms.

BrynGlas profile image
BrynGlas in reply to shaws

Me too. Is there any way that we could help finance publication. I would be willing to donate. I had never heard of Dr Skinner until I came on here. When did he pass away?

Yes shaws, Dr Lowes' work saved my life too, even after his very sad and untimely death. I discovered him via this forum (and yourself) and knew at once he held the answers that had evaded the many 'specialists' I had seen over the decades of severe ill health due to T4 only treatment. I realise now how very close to death I was. I bought his book, and never looked back. I am grateful for it every day. Thank you for posting x

shaws profile image
shawsAdministrator in reply to Mamapea1

I am very happy that you found the link of benefit. It's like a life-line has been thrown to us when we follow his method and found it was restoring our health.

Imagine having to give up one's Licence because of what you state but even better that you restored many thousands of people 's health by your own research but pursued by the 'authorities' for so doing.

He - as a young man - and his family members had some tragedies which set him on the road as to why people take their own lives and due to the suffering it caused amongst relatives.. I assume it was how he found that T3 was a very important hormone.

Mamapea1 profile image
Mamapea1 in reply to shaws

Oh yes, shaws...the knowledge literally saved my life. My body was shutting down with severe hypothyroidism and all the other serious conditions it creates over time. I was diagnosed with so many awful things, and I had a carrier bag full of NHS meds ~ ALL of which turned out to be unnecessary and did even more damage to my weakened system. It makes a mockery of the old 'do no harm' mantra 🙄 and the fact that they seem so concerned about the "dangerous" effects of T3 and NDT, yet are willing to dole out huge amounts of nefarious meds, despite telling you on numerous occasions the 'ME/CFS, fibromyalgia, etc. etc., is mainly in your head, and you need to exercise more! 😳 I couldn't even walk in the end, and the 300mcg of Levo they gave me made me so much worse...I can't take it at all.

After trying endlessly to convince medics of my need for T3 at larger than usual doses, and the pointlessness of the TSH test, I gave up and now treat and test myself with confidence. There was a lot to learn, but I've been brought back to life, thanks to information from Dr Lowe and these pages.

Yes, it's a disgrace how honest Dr's are treated who go against the pharma rhetoric...hounded and vilified for being true healers. Their valuable research is discredited and hidden, leaving patients sick and ignorant of what really ails them. Appalling, and it's still going on everywhere (not just with thyroid issues) and it's the main reason we have to learn all we can for ourselves, and pass the information on to others, or there's no hope...so thank you for sharing what you know, shaws 🙏🏼 you're one of the life savers. x

shaws profile image
shawsAdministrator in reply to Mamapea1

Thanks for the compliment but I only copy/paste the information that others have stated (Dr L etc) and many on this forum are more knowledgeable than myself when it comes to vitamins/minerals.

I also know how unwell I was when my TSH reached 100 but GP told me there was nothing wrong with me.

I still have a copy of the print-out. He was unaware I had another blood test form and immediately went to the hospital with it and had another test. The hospital did take my blood - then when a member saw that I had two blood tests within a couple of hours phoned surgery to ask why they have a second blood test form when they had already notified the surgery that I was hypo.

At least the GP had a big learning curve thanks to me enabling to diagnose myself.

😁

BrynGlas profile image
BrynGlas in reply to shaws

Crimes, a TSH of 100. You were lucky you survived shaws.

shaws profile image
shawsAdministrator in reply to BrynGlas

There's a 'brand new doctor' at the surgery and I never had a face-to-face appointment with him previously (due to lock-down) but did have a face-to-face last week. I assume he had looked back on my file and had no qualms about reinstating my T3 by NHS. I think the fact that the latest Endo I saw could understand my need for T3 - after all I have been taking it for some years although he said he couldn't prescribe buth ave now been diagnosed with 'An Autoimmune Polyglandular Condition No.3..

The more senior doctors at surgery would do nothing or prescribe anything for me and I had to fight to get a referral to an Endocrinologist.

One phoned me one day to say:-

Mrs G - your TSH is too low, your T3 too high and your T4 too low.

Me - I know doctor but as you are aware I take T3, therefore T4 will be low because I take none and T3 will be higher as that's what I take.

GP -" but T3 converts to T4! "No doctor - that's not right, it is the other way around, T4 is supposed to covert to T3.

BrynGlas profile image
BrynGlas in reply to shaws

OMG was his face red??????? Well done shaws.

Mamapea1 profile image
Mamapea1 in reply to shaws

Well, that's as may be shaws, but I happened to read the stuff you copied and pasted, which led me to investigate Dr Lowes work. Yes, there are many on here to thank for various life saving snippets of information...SeasideSusie, SlowDragon, and many others have helped enormously. And of course the many members who share their real life experiences and advice.

It took a long time and a lot of reading on here to put right all the things that had gone wrong during my decades on Levo, and it's an ongoing mission, but one that I wouldn't even be on if not for people sharing and being generous with their time. x

BrynGlas profile image
BrynGlas in reply to Mamapea1

Good grief, I thought I was on a high dose of Levo at 200mcg.

I was the same, on antidepressants at two different times for over 4 years altogether. I took over doses, cut my wrists, sat in the sugery and was told I had to finally realise that I was so overweight because I was lazy and ate too much junk, while watching TV! Calories in have to be less than calories out etc etc.

I really think that they thought they were right, they were never taught anything beyond TSH and once they have a job with a good income, most seem to me to not bother to learn about much else either.

Let's face it, the options for hypo patients have decreased by 2/3 and no one seems to be looking for anything else to treat those who can't get on with Levo alone. At least I have seen nothing yet.

Mamapea1 profile image
Mamapea1 in reply to BrynGlas

I'm so sorry to hear of your thyroid nightmare, and that you were driven to such terrible extremes. So very sad. I thought I was the unluckiest person alive to have so many illnesses! It affected every part of me...breathing, sleeping, daily migraines, neurological issues, terrible tremours, muscular damage, depression, and just constant pain everywhere! Even my clothes hurt. They just kept increasing the Levo, which I now know was the worst thing to do. I thought they were trying to help, but I had to reduce it back down to 250mcg because I literally thought I would die. Then I was accused of not being compliant.

They were supposedly checking my vitamin levels, but failed to tell me my folate had been below range the entire time, which triggered a B12 deficiency, hence the tremours. They said I didn't need a vit D test because I 'looked brown' and when eventually tested, it was 4! They then panicked and sent me to hospital for injections, which didn't work. A specialist at the hospital asked me how I managed to walk. I said I didn't manage at all!

The only person in over 25 years to talk any sense was a paramedic in the very beginning. I was at the beach on what turned out to be the hottest day of the year, and had gone for a sea swim. I didn't feel cold at all, but about an hour or so afterwards, and fully dressed, it seems I said I felt ill and suddenly passed out.

When I came round, I was wrapped in a silver blanket, and a paramedic was leaning over me, asking if I'd had my thyroid removed, as he couldn't see a scar. I said no but it had no output. He said he'd given me an injection and I had to see my GP ASAP to get my thyroid meds changed, as they weren't working for me.

I duly spoke to my GP but she said there wasn't anything else, and paramedics don't know anything about thyroid conditions (!) She claimed all my thyroid issues were different diseases. I often think how different life would've been if I'd have paid more attention to what he said, and was less trusting of my GP. You live and learn 😕

I hope you are also on the right side of your problems now. It's quite a battle when the medical 'authorities' are so ignorant of the condition.

BrynGlas profile image
BrynGlas in reply to Mamapea1

Yes, most people on the forum have suffered from lack of thyroid treatment of some sort over time and it is very sad, because it affects our whole world and everyone around us.

But this site has saved me and it sounds as though you are now on the right path too.

That is the thing isn't it? We all trust our GP and go to them with the completel trust that they will put us on the right path, even if they can't tell us exactly what is causing our problems.

It sounds as though your doctor couldn't accept that she was wrong. We will never know whether she had broken nights wondering whether she really had almost killed you. But it does sometimes make me wonder how they passed out. Your GP sounds worse than mine in the hypothyroid stakes. Are you with the same practice still?

I mean I would have hoped that she might have investigated vitamins and working out your vitamin D levels by the colour of your skin??? I have never heard that before!

But I have to say that not one of the GP's I have had since diagnosis ever investigated my vitamin levels either, or even contemplated testing them. And that has only just dawned on me too!

They do seem to resent the fact that they don't know everything and once the patient can tell the GP how hypothyroid works, oh boy, are their ego's dented.

We have both been hypo for a very long time, you longer than me and it has been a hard road for me I think, not to mention my family, it helped break up my marriage and my daughters don't speak to me now etc etc. I can only wonder how you managed to stay alive. I don't know how you are still with us, but I am glad that you are and I hope you go from strength now.

It takes a lot of time and effort to decide to get to the bottom of our thyroid problems, while having to fight for every step along the way. Just the thought of the effort required is daunting, but I am glad that I did it and I am sure you are too.

Onwards and upwards is the only way to go Mamapea1 you will get there.

The very best of best wishes to you.

Mamapea1 profile image
Mamapea1 in reply to BrynGlas

No I'm pretty sure she had no broken nights worrying about me! I really liked her as a person (I'm a poor judge of character, it seems) but when I obtained copies of my med notes, I was appalled to read what she had written about me over 20 years. I sat in shock and disbelief at the comments and all the appalling test results. I always wondered why she kept blocking my access to my notes! It was made even more awkward by our children knowing each other, having attended the same school. I haven't spoken to her since. She closed the practice straight after and went to work for a private practice nearby, claiming she 'couldn't make ends meet' with the NHS. (NB she lives in a mansion) My daughters joked it was because I no longer had the carrier bag full of meds! 😂

I had a wonderful GP for many years before I became ill, but he left just when I needed him unfortunately, and I went with her because I knew her and she seemed so 'understanding' 😕

You should have your vitamin levels tested regularly when hypo, but even when you do, they don't seem to interpret the results/ranges properly. Best to pay out for a private test if you can afford it, and post results on here.

Yes, hopefully the worst is behind us, and we can both now move on with improved health.

BrynGlas profile image
BrynGlas in reply to Mamapea1

Oh yes, my GP tried to scare me off when I asked to have access to just my blood test results back to pre diagnosis in 1997. They gave me I think it was 4 results, which they said was all that had been done.

Last year I finally got the full records - I wouldn't be surprised if they had been edited - but they really told me nothing, except 'normal, normal, normal' - no actual results to speak of.

But before I got them I was threatened with the cost that I would need to pay for the printouts and the cost of posting them, which I would also have to pay. The loss of staff, because one staff member wouldn't be able to do her usual job of course if I insisted on getting copies of everything!

I managed to be terribly patient and smiled through my gritted teeth saying that I would pay expenses of course. After they arrived I emailed to ask how much I needed to pay and was told nothing at all.

They think we are all totally stupid. But I bite back these days and they know I am complaining about them.

shaws profile image
shawsAdministrator in reply to BrynGlas

I am very sorry that your illness caused your marriage to collapse and that must have been an awful blow for you.

I am also very sorry that your daughters no longer speak to you. I hope, in the future, that may be resolved. If either develop hypo, they have someone who can help them along the 'rocky road.'

shaws profile image
shawsAdministrator in reply to Mamapea1

No wonder some people want to have some action taken due to the awful care they've had.

Like my Mother who had Pernicious Anaemia and GP told her after years of B12 injections that 'your blood is now fine and you don't need any more injections'. Both my sister and myself thought that was 'good' but that decision by GP caused her to develop stomach cancer and she died. We had to plead for more pain relief towards the end.

BrynGlas

BrynGlas profile image
BrynGlas in reply to shaws

Oh dear, but you weren't to know then shaws. I can imagine your sorrow, but the GP could well have done nothing even if you had thought it was wrong for your mother to come off the injections.

We have to fight for our rights to have site of records still these days it seems, but it isn't long ago that we had absolutely no right to see our records, unless we had a very nice GP.

shaws profile image
shawsAdministrator in reply to BrynGlas

I thought the doctor knew best - never ever queried any advice or decisions made by them.

BrynGlas profile image
BrynGlas in reply to shaws

Neither did I until 2020. We all had blind faith in our Dr knowing better. My family still do, they think I am just another fruit and nut case.

It is sad and hindsight is a very pure science unfortunately, we probably all think "What if I.............." I have said it many times believe me.

shaws profile image
shawsAdministrator in reply to BrynGlas

Doctors must know that people who have pernicious anaemia could develop stomach cancer or are likely to develop stomach cancer if they don't get B12 injections which is all that is needed to replace what is happening in the stomach.

shaws profile image
shawsAdministrator in reply to BrynGlas

How awful for you, to feel so very unwell yet no doctor could tell what was wrong with you.

GPs used to know the 'outward signs' of a dysfunctional thyroid gland. Nowadays they know nothing at all.

Some common symptoms are 'unexplained weight gain' (due to metabolism slowing down. Fatigue, feeling cold etc etc.

Before the blood tests were introduced (pots of money for Big Pharma) we were given a 'natural thyroid hormone' (Natural Dessicated Thyroid Hormones') made from animals' thyroid glands from 1892 which contains all of the hormones a healthy thyroid and they removed it from prescription about a year or two ago. It saved lives onwards from 1892 without the need for blood tests at all but the doctors knowledge of how to treat patients who had dysfunctional thyroid gland.until Big Pharma saw a way to improve their profits and introduced T4 plus blood tests. It does seem to suit some people- a synthetic thyroid hormone supposed to convert to T3-.

mk0thyroiduky0qtp9yo.kinsta....

mk0thyroiduky0qtp9yo.kinsta...

BrynGlas profile image
BrynGlas in reply to shaws

Yes I agree, I really think it has been all change because the Pharmas realised that they could control the market, no doubt called in lots of favours and speculated in order to accumilate! That is what it was, money talks only.

But what is happening to those companies who are or were trying to produce ND.

Only Armour seems to be in the market, with eye watering prices to match. I wonder if they have, or are trying to be the only company in the market??

Does anyone know what the ratio is of happy and well Levo patients and those who can't take the stuff?

But only those of us who work out that they can't take Levo can be counted in any way.

From the 90's I would have been put down onto the lists of patients who were happy with Levo. Only since late 2019 have I realised that I have struggled all those years to live anything like a life because Levo was making me so ill and I had no quality of life in all that time.

And that is totally down to ThyroidUK and all of you Admins on this Forum who taught me what was what, I dread to think whether I would be alive now if I hadn't learned from you all.

I still haven't ruled out trying NDT if I could ever be able to afford it. I am on Tiromel shaws, but I haven't decided yet whether Tiromel is the best thing for me.

shaws profile image
shawsAdministrator in reply to BrynGlas

You've had a really awful time and many GPs are so inept they do not know that when a hypo patient is given too low a dose so their metabolism doesn't rise and weight is increased.

Some GPs do not listen to their patients. Maybe they're bored with listening or their initial instinct to become a doctor is waning. GPs are also frightened of losing their jobs if they don't stick to the guidelines.

As you are aware our older doctors trained in before the 50'/60's learned all about symptoms and patients were prescribed NDTs (natural dessicated thyroid hormones) which saved lives from 1892 and still does today - despite the fact that 'those' who should know better do not and treat the result of a blood test but ignore symptoms of the hypo patient sitting in front of him. They have also decided to 'save money' by prescribing the cheapest replacement and it may not be a 'perfect replacement' for some patients but they're not offered 'options'. Some people probably lose their livelihoods due to not being able to think straight due to the wrong replacement or unable to convert T4 into T3.

Two of our 'old -school doctors were pursued as if they were criminals, i.e. Dr Gordon Skinner and Dr Barry Peatfield. The latter resigned his licence but was able to 'advise' patients but not prescribe. Read 'behind closed doors by Diana Holmes and it is an eye-opener.

Dr John Lowe stated that levo became No.1 due to 'payments made to those doctors/endocrinologists who did' -- I assume in USA initially.

BrynGlas profile image
BrynGlas in reply to shaws

I wouldn't be a bit surprised shaws, I am more than slightly inclined to think that the Pharmas are the cause of the decline in NDT.

I saw Dr Peatfield too many years ago. He was a very nice man and certainly didn't deserve what he got.

helvella profile image
helvellaAdministrator in reply to BrynGlas

The endocrinology establishment very much dismissed desiccated thyroid.

However, there were problems with potency and consistency. At the time, potency was determined by protein-bound iodine content which was far from ideal.

helvella - The end of Thyroid BP

A published letter which highlights the attitude regarding desiccated thyroid shortly before it was dropped from the British Pharmacopoeia.

dropbox.com/s/zbiyjk19wjsq4...

BrynGlas profile image
BrynGlas in reply to helvella

Thanks for the message helvella, it is very interesting. So the signees were not officially in cahoots with the Parmaceutical companies??

It doesn't make sense that one document/letter should just have stopped Natural Thyroid in it's tracks.

I just think that a lot of money was made when that letter was sent. We saw similar things with PPI after Covid, no drugs involved but an awful lot of people in the know made millions from it.

Am I a cynic do you think??? LoL

I tried HRT too, synthetic hormones don't really seem to do me a lot of good. The last one they tried me on I gained 2 stone in a couple of weeks! They just said I was not going to be trialled with any HRT again, but that it wasn't possible to gain that much, in so short a period!

So I am on the side of NDT.

Just let me ask this, excuse me if I am talking utter tosh, I am still trying to learn. There are a couple more thyroid hormones, or trace elements in NDT. I have read what they are but can't remember my name half the time, never mind the names of those elements.

I just wondered if those hormones/trace elements which are not available in Levo or T3 - I assume - are either out there somewhere, or have they never been available.

Has there ever been an attempt to synthesise those elements??

helvella profile image
helvellaAdministrator in reply to BrynGlas

That letter was the culmination of many years in which thyroxine (as was the British Approved Name of the time) was regarded as superior to desiccated thyroid (Thyroid BP).

The reputation of Thyroid BP had been patchy. After all, when desiccated thyroid products originally became available there was limited ability to assay the hormone content. Indeed, it was years before Thyroid BP was even included in the British Pharmacopoeia. And the only assay available was protein-bound iodine.

My take is that when thyroxine became available, it was thought to be manufactured to a higher level of consistency. And, when it was realised that people seemed to be able to take just thyroxine, that is the way things went.

There was never what we would now think of as a randomised controlled trial comparing Thyroid BP against thyroxine. There was never proper assessment of the excipients used. Thyroid BP was criticised for having an unphysiological ratio of T4:T3.

I do not know how costs compared but at some point thyroxine was significantly less expensive than Thyroid BP.

When it comes to the hormones or trace elements in Thyroid BP (or any modern desiccated thyroid), we still do not know enough. We see people list T4, T3, T2, T1 even T0 – and calcitonin. But I have never seen any decent evidence that any additional hormones are important. They might be. They might not be. But without proof that they exist in desiccated thyroid, and can be effectively delivered as a tablet, we simply do not know.

We do have patient reports, even some trials, which show a patient preference for desiccated thyroid. But we do not really understand why.

There are many possible reasons. For example, rate of release and absorption, where in the gut the hormones are absorbed, what effect it has on gut biome, non-hormone constituents, etc.

Unless we know what is present, we cannot hope to re-create equivalents. And things like calcitonin are quite complex proteins which might be beyond industrial synthesis.

BrynGlas profile image
BrynGlas in reply to helvella

Thank you hellvella, that is all very interesting, you brought it alive to me and I appreciate it very much. I wish I had your brain, mine suffers these days unfortunately.

I have just go to try NDT, I will never stop wondering if I don't.

My T3 is working brilliantly I am much, much better than I have been since the 90's, BUT...... I still think that something needs tweaking. I think I need to try out NDT, if it is no better, I can return to T3 only with no problem, or add a little T3 to NDT apparently if I need to.

I have been trying to get well on Levo for so long, that I am not sure whether I would recognise what feeling well looks like.

I reckon that we should all have periodic MOT'S including blood tests for hormones, vitamins, etc etc etc, but I know that human nature will not let us do that of course. Hindsight is the only pure science, as ever.

Whether the exact make up of our own natural thyroid hormones, or even the animal version come to that might never be known, I want to try the nearest that I can get to it. I only worry that NDT might make me feel wonderful, fantastic even........what happens if I can't get it again for one reason or another?? I do find that scary!!! LoL There have been so many recalls and reduced supplies that I can see that it might be a problem. I would need a strait jacket then, believe me. But if I can afford it, I want to try it before I die. If we were designed to produce those trace elements ourselves as a healthy person, I can't help but think that they were important.

Now what about Armour NDT? That intrigues me. I have seen sky high prices for Armour. Is it worth the extra money? Is it worth buying it at £200 plus per pack? Or have I looked at prices in the wrong place? And has Armour also had recall problems in it's time?

helvella profile image
helvellaAdministrator in reply to BrynGlas

Armour has had recalls. One from last century involved contamination.

But I don't have details immediately to hand.

Unavailability of desiccated thyroid is a major issue.

When I first got involved in thyroid issues, people would go on about multiple makes and acceptable prices. It has changed a lot since then. Fewer makes. Poorer availability. Much higher prices.

I do wish a company, or several companies, would launch new desiccated thyroid products simply to ensure a more resilient supply and some competition on price.

BrynGlas profile image
BrynGlas in reply to helvella

Yes, I can only think that that is the way forward. But at the moment - and I am the last person who can give out any advice - there seems to be so very few makes/brands of either natural thyroid or synthetic either. It makes me want to stop the sale of my house and put hundreds of pigs onto my 4 acres instead of moving!! Unfortunately I am too old for that now.

I don't understand it helvella. I am just a little worried that brands like Armour are cornering the market if that is the right term to use. God knows we have seen enough of that in the UK with synthetic T3 and the sky high prices.

I can only think that we need more companies bringing more choice to the market. I am really just resigned to have to buy my own thyroid meds now, but I would like more choice in the equation.

We have seen so much improvement in Type 1 now. I have a brother, nephew and grandson who are all type 1 and so I have seen the improvements come along over the years. There is no comparison now from the days when I was forever giving my 3 year old grandson finger pricks and insulin via a pen - which was in itself an improvement from a syringe. He called them 'ouchies' and I was forever trying to find another fingertip to take blood from to monitor, because newly diagnosed, he was forever up and down and the poor boy hadn't a finger tip which wasn't too sore to stick a blade into. Now he is almost 30 and 6 feet and a lamp post, so he got there and now he has implanted pumps and goodness knows what else.

But where are the improvements for hypothyroid patients? Am I right in thinking there are none?

I am afraid I am not keeping track of hyperthyroid patients, I am still battling to understand my own problems - selfish I know.

I suppose we all have had the experience of people who have no idea how important our thyroid is - and GP's seem to be the worst in that respect. But I am forever surprised by that. I was aware of my thyroid in the 70's though I had no idea that I might have a problem with it one day.

helvella profile image
helvellaAdministrator in reply to BrynGlas

There is a new formulation of liothyronine (T3) expected to become available later this year – possibly under the branding Colonis or Roma – even both! It is a hard capsule rather than a tablet.

There are vast numbers of levothyroxine products, quite a few liothyronine and some combinations. Though availability/accessibility might still be difficulties, they both require the products first to exist!

I think everyone is concerned at the possibility of AbbVie (who own Allergan, who own Forest) cornering the market. But if their competitors are unable to measure up, that is where we are headed. One Thai company and Erfa being the non-USA competitors is not sufficient.

I think that soft gel and liquid preparations have been important but still we have difficulties in accessing them.

BrynGlas profile image
BrynGlas in reply to helvella

We seem to have difficulty accessing any of them at all. I looked on a website this morning and zero T3 exact Tiromel. That was why I bought Tiromel in the first place, because each time I looked, it was all there was available. Zero Natural Thyroid either.

I agree that we need more supplies, more manufacturers and more Natural Thyroid.

I am glad that there might be something on the horizon at least. How on earth do you find these things out? But I am very glad that you do find them out!!!! You are always good to hear from helvella, thank you so much for helping us all so much.

helvella profile image
helvellaAdministrator in reply to BrynGlas

You spend ludicrous time on computers and have a bit of luck. :-)

The hard capsules will, of course, be prescription-only.

BrynGlas profile image
BrynGlas in reply to helvella

I won't be able to try those then! LoL

I wouldn't know where to look. I only managed to find Tiromel last year and NDT very much more recently!

helvella profile image
helvellaAdministrator in reply to BrynGlas

You find find a very large number of the products which are available in my document - but not where to find them available to purchase, especially without prescription.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

dropbox.com/s/shcwdwpedzr93...

BrynGlas profile image
BrynGlas in reply to helvella

Woweeeeeeee why didn't I ask you earlier?? helvella you are a lifesaver. Thank you so much.

helvella profile image
helvellaAdministrator in reply to BrynGlas

Good grief, I thought I was on a high dose of Levo at 200mcg.

Many countries have 200 microgram tablets. The USA has 300 microgram tablets.

They wouldn't be made if no-one had them prescribed!

Yes - 200 is more than many need. But it is hardly high.

There was a case report of a man who was taking over 3000 micrograms with no sign of overdosing.

You need what you need. Whether that is due to less than optimal absorption or some other reason.

BrynGlas profile image
BrynGlas in reply to helvella

I suppose so helvella.

I know one thing though, this spell checker on here doesn't like your name! It keeps changing it to helvellyn!!! So if that appears on any message to you, it wasn't me honest injun! LoL

helvella profile image
helvellaAdministrator in reply to BrynGlas

If you wanted to, you could probably tell your spelling checker that helvella is an acceptable word. :-)

But then you might be snookered if you want to discuss a walking holiday in the Lake District. :-)

How nice it is to read this story shaws, thank you for posting it.

Can you please tell me what happens to your FT4 levels when you are only on T3 medication? Will FT4 still be in the acceptable range on your blood work? What are the symptoms of not being able to tolerate T4 medication, ie. when do you ditch it?

helvella profile image
helvellaAdministrator in reply to Sus64

If your thyroid isn't working, and you are not taking any levothyroxine, FT4 will plummet.

Sus64 profile image
Sus64 in reply to helvella

And that's fine as long as you maintain FT3 levels?

helvella profile image
helvellaAdministrator in reply to Sus64

I've always found it amazing, but many who take T3 only seem to do better than ever they did on T4. (I am on T4 only.)

Sus64 profile image
Sus64 in reply to helvella

Yes, it seems baffling to me, LOL, thanks! I'm feeling lousy on everything I've tried so far, so that may be next.

shaws profile image
shawsAdministrator in reply to helvella

T3 returned my body to normal health from head to toe and I was very unwell (on diagnosis my TSH was at 100 - despite many visits to GPs/private doctors and anything else you can think of. I even had an operation to remove a 'web' in my throat but if you want to read more, click on my name which will take you to my page where I've put the details. They had no idea about hypothyroidism and I didn't but I would have thought they would be taught the very basics of a common condition.

Many people recover on NDTs - withdrawn.

Also T3 became 'scarce' as it was very difficult to be prescribed - due mainly to cost. It was also withdrawn for while but can now be restored if an Endocrinologist prescribes. Few will do so - due to cost and they always state that levo is perfect - but it is not for everyone and I am one.

Also you have to try to make sure you always get the same manufactured T3 as any small change can have a 'not so good affect' on the person.

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