‘The NHS have taken a brave decision to take aw... - Thyroid UK

Thyroid UK

136,966 members160,563 posts

‘The NHS have taken a brave decision to take away T3. If you get FT4 at right level then FT3 will come right’ GP

SmPea profile image
104 Replies

This is what my GP said this morning. I told him many people do not hold this view. This statement has made me have a few doubts, who is on the right track NHS or people on this website? I try to keep an open mind but when a young doctor comes out with a statement like this it makes me wonder. Does everyone on this site firmly believe that the NHS have got it totally wrong?

Written by
SmPea profile image
SmPea
To view profiles and participate in discussions please or .
Read more about...
104 Replies
Andyb1205 profile image
Andyb1205

The question rather should be posed as, when will the gap between medical practice and the science be bridged?

onlinelibrary.wiley.com/doi...

Baobabs profile image
Baobabs in reply to Andyb1205

I would think the answer may be along the lines of when money making no longer takes precedence over maintaining and promoting good health in societies.

SmPea profile image
SmPea in reply to Andyb1205

Tried to read through the paper and understand some of it (with a slightly foggy brain due to my Hashimoto’s and medication issues!). The conclusion seems to be saying that T3 treatment is complex in maintaining a level throughout the day. Is this why NHS don’t want continue this due to the complexity?

Baobabs profile image
Baobabs in reply to SmPea

No, please read my reply again.

SmPea profile image
SmPea in reply to Baobabs

Will do!

Andyb1205 profile image
Andyb1205 in reply to SmPea

It is true that taking T3 is more complex than taking T4. Some may take T3 once a day, others do better taking it twice or thrice. It’s also true that until a better release formulation of T3 is created, many patients on T3 (alone or with T4) feel and do much better than on T4 alone.

Here’s a recent paper, a conservative one in fact written by the former president of the European Thyroid Association, that is forced to acknowledge this. Titled “Paradigm Shift in Thyroid Hormone Replacement.”

drive.google.com/file/d/13K...

Here’s also a recent one by the former President of the British Thyroid Association and Physicians of Scotland.

tpauk.com/main/wp-content/u...

The NHS’s justifications have nothing to do with the science, which it is far behind, and more to do with clinging to what was never science in the first place. It’s a scandal really, the theory supporting the TSH as the only important marker for diagnosis and treatment was neatly packaged together with the monopolization of the market by the producers of levothyroxine. Synthroid is now the most sold drug in America.

Baobabs profile image
Baobabs in reply to Andyb1205

Ignorance and lust for money driving current reasoning, so morally wrong on every level.

SmPea profile image
SmPea in reply to Andyb1205

Thank you for this information - really interesting. My sense is that NHS are ruled by big pharma. It just seems extraordinary that supposedly intelligent health professionals are prepared to go along with the drug companies when they must see patients regularly who are not well just on Levo. How do they live with themselves?

Baobabs profile image
Baobabs in reply to SmPea

They need to work?

Marz profile image
Marz in reply to SmPea

Follow the money - I have read that many of the members of NICE are on the payroll somewhere with Big Pharma. Something like 80% ...

PR4NOW profile image
PR4NOW in reply to Andyb1205

Andyb1205, your first link is not coming up, could you check it please. PR4NOW

Andyb1205 profile image
Andyb1205 in reply to PR4NOW

PR4NOW I just checked and the link is working for me. Strange, perhaps try to access it again?

PR4NOW profile image
PR4NOW in reply to Andyb1205

I tried Firefox and solved the problem. Thanks for replying. I still use IE because Edge doesn't have a right-click and save feature. Looks like I might have to switch to Firefox. PR

humanbean profile image
humanbean in reply to PR4NOW

The link is coming up for me. Perhaps you could try a different browser.

PR4NOW profile image
PR4NOW in reply to humanbean

HB, Yes, I switched to Firefox which solved the problem. Thanks for the suggestion. PR

shaws profile image
shawsAdministrator in reply to SmPea

That is completely untrue. I take T3 only I have no ups/down and am well. They are not scientists and run on rumours which about about T3 because Big Pharma would lose money if some patients are provided with alternatives rather than T4.

They are all ignorant about T3.

Angel_of_the_North profile image
Angel_of_the_North in reply to shaws

Yes, all the lost prescriptions for constipation, anti-depressants, pain killers, useless CBT/GET etc.

Baobabs profile image
Baobabs

Unequivocally yes! The NHS has got it wrong and I have nothing to do with the system as I live and work abroad. This GP statement is simply pie in the sky and incredible that an apparent medical professional could believe and utter such nonsense. Just highlights the symbiotic relationship of medical practitioners, the NHS and Big Pharma companies but more importantly, absolute ignorance. So many folk here could produce longitudinal blood tests that show despite taking T4 meds and increasing the amounts, their T3 levels don't increase. I for one could show you. This reasoning, if you could even call it that, is yet another excuse to withdraw T3 treatment from those that need and therefore benefit from it. In due course you will receive a flurry of replies. It is a positive move, however, on your behalf to offer up your doubts to this forum.

SmPea profile image
SmPea in reply to Baobabs

I have always tried to keep an open mind and want to try to understand different points of view. In the process of trying to educate myself about Hashimoto’s I have read differing points of view including this site. Holding a very fixed point of view either way with something as complicated as the metabolism I believe can narrow the options for inviduals to find their unique optimal levels that will keep them well.

Baobabs profile image
Baobabs in reply to SmPea

I also like to keep an open mind but just sometimes and particularly where my health is concerned and being aware of so many anomalies regarding the medical profession, some things in my book are non negotiable.

SmPea profile image
SmPea in reply to Baobabs

Not having any confidence in the NHS profession and reading conflicting points of view leaves me feeling isolated, confused and unsure what to do for the best in trying to get into a healthy state. I feel like I’m playing around with things I don’t really understand, makes me a bit vulnerable.

Baobabs profile image
Baobabs in reply to SmPea

I really do appreciate your honesty and confusion. This is very understandable. I have so much doubt in current medical opinion on all sorts of levels from personal experience, however we all must make decisions based on information, often that is conflicting. SmPea if you have a specific personal issue relating to your thyroid problem them post here and you will receive excellent advice. Whether you act on this is your choice and prerogative.

shaws profile image
shawsAdministrator in reply to SmPea

If people are taking levothyroxine and feel well on it, they will not be on this forum but continuing with a happy/healthy life and would have no idea there is a section of the population who cannot recover on levo or are given too low a dose to bring TSH to 1 or lower and a Free T3 and FT4 to the upper level.

Many doctors think that if the TSH is somewhere in the range -between 1 and 5 - we are fine and dont need increases. They will willing prescribe anti-depressants, pain relief, or anything else but a decent dose of levothyroxine or the addition of some T3.

One of our most experienced doctors, now deceased, stated that we, the patients, are in a parlous situation with the deference by the medical profession to the results of tests rather than the relief of patients' clinical symptoms.

ZippyAppletush profile image
ZippyAppletush in reply to shaws

Hello shaws

I’m one of those who - up to 2009 - was taking Levo and feeling well, tootling along and, I confess, unaware of the Thyroid minefield outside my happy, healthy life. My thyroid diagnosis came at 6 months old in 1962 thanks wholly to my Mum pushing for a diagnosis more than ‘she’s just got a cold’! Thankfully she crossed paths with a paediatrician who recognised my symptoms and I was then looked after superbly until 2009 when my doctor at the time retired.

Unfortunately I then crossed paths with an arrogant Diabetes specialist who saw fit to reduce my meds based on blood tests without ever seeing me!

While I’m hoping to get sorted out once more, I fully appreciate the wonderful support from this forum and only wish I’d found it sooner. I won’t be leaving any time soon, even when I do manage to get back to happy and healthy.

shaws profile image
shawsAdministrator in reply to ZippyAppletush

I am sorry you have had congenital hypothyroidism so you've never known what it is truly like to be 'normal health' and thankfully your mother got to the source of baby being unwell quickly.

Mothers' instinct is wonderful if the doctor believes us. Mine didn't with regard to daughter (not anything to do with thyroid gland) but doctor told me off in no uncertain terms for suggesting what ran in my family. He never did the proper blood tests with the results she was never diagnosed with her condition until her 20's and is wheelchair bound and on a daily cocktail of drugs. We cannot look back and say 'what if'!

Doctors who adjust our thyroid hormones willy/nilly according to the TSH alone are so wrong whilst ignoring clinical symptoms and they know none anyway. If doctors do that we should change our doctors but there seems to be so few these days trained adequately to recognise someone who has hypo as they used to do before blood tests were introduced along with levo.

ZippyAppletush profile image
ZippyAppletush in reply to shaws

Thank you for your reply, shaws, and it’s very hard to read about your daughter. I am the primary carer for my 27 y/o daughter with physical disabilities and a learning age of 5. I’ve fought doctors for her care and would ask you to believe that I appreciate some of what you go through on her behalf. I know I was so very lucky to have my Mum fight for me, and to find the doctor she did.

I know there are good and bad in all professions but where we can usually fight for ourselves, in the case of health it seems we are at the mercy of some who would prefer to say ‘yes, I got this person to within the normal range’ without even knowing the people they are treating and how ill they truly are!

shaws profile image
shawsAdministrator in reply to ZippyAppletush

I am fortunate that my daughter married a wonderful man who cares for her deeply. I am very sorry your daughter hasn't been able to lead a normal life even for a little while but at am glad she has a caring Mum and Grandma.

The quote 'normal range' is one of the worst things doctors can say to patients when we feel anything but 'normal'.

marigold22 profile image
marigold22 in reply to SmPea

I take only T3 and do not get ups & downs. I take the whole dose (40mg a day) in one go when I wake up in the morning. They are so so blinkered and unable to think outside the box. Once other issues - like gut, diet, nutrients are sorted out as well, T3 works a treat.

greygoose profile image
greygoose

I would have laughed in his face. Such ignorance! Just goes to show how little he knows about thyroid. The NHS has got it totally wrong, and so has this young man. All I can hope is that wisdom comes with age!

greygoose profile image
greygoose in reply to greygoose

I could almost want to be his patient, to prove him wrong!

Baobabs profile image
Baobabs in reply to greygoose

But we know there's no guarantee! How many middle aged plus Endo's have we experience of?

greygoose profile image
greygoose in reply to Baobabs

No guarantee of what?

Baobabs profile image
Baobabs in reply to greygoose

There is no guarantee wisdom comes with age.

greygoose profile image
greygoose in reply to Baobabs

Ah! OK! lol That's very true. Some even get more ignorant with age. But I did just say I was hoping, not that there was much chance it would happen. :)

shaws profile image
shawsAdministrator in reply to Baobabs

Regardless of age - they are following the guidelines laid down and it seems that the poorest advice we, the patient receive, is from those who have no knowledge or training whatsoever of the dysfunctions of the thyroid glands except to look at a TSH and T4 result and ignore the patient who tells them all of their pitiful symptoms which have to be relieved or, like a couple that we know of on this forum, commit suicide. No doubt the coroner will put 'while the balance of the mind was disturbed' and paid no attention to undertreatment of hypo.

Baobabs profile image
Baobabs in reply to shaws

Tragic and how many more folk do the same? We will never know.

Andyb1205 profile image
Andyb1205 in reply to Baobabs

I just saw an elderly new Endo today here in Canada who prescribed me Cytomel. Only a couple weeks ago I had seen a middle aged GP who did the same. They are out there.

shaws profile image
shawsAdministrator in reply to Andyb1205

The magic word is 'elderly' as they were trained properly to take into consideration patients symptoms and how to relieve them.

The fact is that our doctors - most now retired - were trained the same way and two of ours began to be hounded by the Associations for doing as they were taught as medical students. Dr Peatfield and Dr Skinner - Dr Skinner was a virologist who became involved due to patients being referred to him with 'mysterious diseases' and he discovered they were actually hypo and treated and prescribed what was best. For this he was then hounded by the Associations for making patients well again. He had to appear before the GMC several times and always found to be treating patients well. What other doctor, in this world, would have 10,000 testimonials from grateful patients whose 'lives he saved' - their words. Dr Peatfield gave up his licence due to the strain and at is late stage in life - when he's well - he will still advise.

Andyb1205 profile image
Andyb1205 in reply to shaws

The Endo I saw had his conservative side such as being cautious of a low TSH, but what he did probably would bar his license in the UK! Since primary hypothyroidism was ruled out, I felt he dismissed some science on Central Hypothyroidism. He simply wasn’t up to date.

Then he proceeded to explain that blood levels do not indicate the levels in the cells, then forced me to take Cytomel. You made a good point on the training the old generation of doctors received. Mind you, after dismissing that I have primary or central hypothyroidism, or that my low normal T4/T3 are relevant, without even working towards an actual diagnosis he just said we need to improve your symptoms. Here’s a script.

I’m still puzzled as to what the heck happened in that meeting. All I know is that I got a prescription that will help me feel better. Literally, you can grab a doctor from a hundred years ago who has no knowledge of the scientific advances since then on the thyroid and nine out of ten times they will do better than some doctor who thinks he knows it all after spending just one hour on the topic in medical school. 😂

shaws profile image
shawsAdministrator in reply to Andyb1205

I totally agree with you.

marigold22 profile image
marigold22 in reply to Andyb1205

Andyb1205 Thanks for giving us hope. But Canada is a much bigger country than the UK. So I guess there must be more chance of an endo doing 'his own thing'

Peanut31 profile image
Peanut31 in reply to greygoose

greygoose

You are too kind, I would of slapped him in the face with my packets of Levo.

As someone has already said, they are all trained the NHS way, to think T4 is the answer, and, if you don't feel well on it your either depressed, or making it up.

Let's hope to God that none of his family go to him for advice if they end up with Thyroid issues.

I wish T4 would work for me, as it would be so much easier but, I feel like a bag of old rusty nails.

Best Wishes

Peanut31

Rmichelle profile image
Rmichelle in reply to Peanut31

Oh I love the slapped Levo packets in his face, so funny!!😊😊😊 go Peanut!!

Baobabs profile image
Baobabs in reply to Peanut31

I simply adore the bag of nails analogy!

Peanut31 profile image
Peanut31 in reply to Baobabs

That was the only description I could think of, without swearing!!.

Best Wishes

Peanut31

Baobabs profile image
Baobabs in reply to Peanut31

I have a fab imagination and yes I can see and hear those swear words clearly!

greygoose profile image
greygoose in reply to Peanut31

I think we all wish that. But, even if levo works for you, so many people have to fight to get enough of it, because they don't understand the blood test results, and think anywhere in range is good enough. I even had a doctor tell me that a TSH of 9.5 was 'good enough'!

humanbean profile image
humanbean in reply to greygoose

OMG! :x

greygoose profile image
greygoose in reply to humanbean

Yup.

Rmichelle profile image
Rmichelle

Ouch!! I would think the people on this site have got it right not some gp who knows nothing apart from what he has been told to say, the people here are the ones who have been through it or going through it and got the t shirt, not the medical profession, it boils down to money!! 😊😊

diogenes profile image
diogenesRemembering

His belief comes from the simple idea that the thyroid is just a factory making T4 and nothing else. The body then converts T4 into the T3 (active hormone) that is needed for health. By this idea, then if you lose your thyroid and its T4, its a simple matter to give you the T4 you've lost, by tablet. You must be able by having enough T4 to regain the T3 level you once had. End of simple story. Unfortunately, the story isn't simple. The thyroid is not just a factory for making T4; it makes about on average one quarter of the T3 in your body, directly. The rest of the T3 is made by your body conversion. Both supplies together define your healthy state. Now when you lose your thyroid, you've lost both the T4 it made for conversion AND the T3 it made directly. On giving T4 as tablets, the body's conversion has to work much harder to not just copy the healthy body conversion, but in addition to replace the T3 that the thyroid once made. This means that you have to give more T4 to achieve this. But the extra T4 now suppresses your TSH which is controlling the system. In addition, some people cannot up their conversion sufficiently when they have no thyroid, to achieve the T3 they need for health. These are the people who need T3 therapy as well to get to the best T3 level for their QoL. So I'm afraid your doctor is well behind modern knowledge.

greygoose profile image
greygoose in reply to diogenes

But surely, even people who still have their thyroid can be poor converters, no?

Baobabs profile image
Baobabs in reply to greygoose

Just about to say this when I saw your post!

greygoose profile image
greygoose in reply to Baobabs

Great minds think alike! lol

Baobabs profile image
Baobabs in reply to greygoose

Fools never ......

diogenes profile image
diogenesRemembering in reply to greygoose

Such people will be less likely to need T3, because the thyroid remnant will work overtime to try to rectify matters. It won't fully succeed of course, and some T3 may be needed, but I think that this will only occur when most of the thyroid is lost.

greygoose profile image
greygoose in reply to diogenes

Thank you.

Baobabs profile image
Baobabs in reply to diogenes

I had no conversion problems, still felt very unwell on T4 only treatment even when reached top of the range, have my thyroid but still do better with T3/4 combo. No medic can tell me why.

Hillwoman profile image
Hillwoman in reply to Baobabs

Some people seem to get what I can only describe as a 'toxic' reaction to levo. My bloods looked fine for the two decades I was on it, getting iller and iller. Dr Peatfield transferred me to NDT, but I still had the T4 headache and general malaise. It was wonderful when I stopped (even before my transition to T3 monotherapy), just as the old saying goes about banging one's head against a wall... ;-)

Baobabs profile image
Baobabs in reply to Hillwoman

Much appreciate your comment. 'Toxicity' never really occurred to me? Obviously I have to give increases in T4 time for my body to respond positively but every time I increase my dose I feel rubbish, just as you describe, headache and malaise.

marigold22 profile image
marigold22 in reply to Baobabs

Baobabs I would strongly recommend that you bite the bullet and buy some T3 from abroad to see how you go with it. I haven't read your profile or any of your posts - only your replies here - but if you feel rubbish on T4 and every time you increase, it's looking distinctly like your body isn't able to process it correctly. I didn't look back after proving my body can't cope with T4 by doing the DIO2 private gene test, I then had it written in black & white, it all made sense & the jig saw started to fall into place. I then had the confidence & self esteem to challenge all doctors; told them I'm allergic to T4. They like the word allergic - there's a special box on our med records for 'allergies'. I now speak to all medics like they are 8 year old children.

Baobabs profile image
Baobabs in reply to marigold22

Thanks for your reply. I do take a combo but now my FT4 is so low I am having to up my dose of T4 meds and 3 weeks on and still feel unwell. Endo thinks I have another muscular related auto immune condition?

marigold22 profile image
marigold22 in reply to Baobabs

@Baobabs Muscular can be shortage of T3 - I had it in spades. If your body doesn't like T4 you are poisoning it even more by doing what the doctor says, ie increasong T4. FT4 blood results don't matter much if you are taking T3. Neither does the TSH result. It is how you feel. You really do need to increase your T3 med.

Hillwoman profile image
Hillwoman in reply to Baobabs

Pleased to have helped.

diogenes profile image
diogenesRemembering in reply to Baobabs

Its probable that T4 only in your case is suppressing T4-T3 conversion somewhat, so that you need T3 to get round this. Exactly why such suppression should occur is a bit difficult, but it must be something to do with how your TSH (which is an effector of conversion) is implicated.

Baobabs profile image
Baobabs in reply to diogenes

Really appreciate your reply, not sure I understand it and have never really come across this or any explanation for that matter.

marigold22 profile image
marigold22 in reply to greygoose

I've proved that I am a very poor converter thanks to my DIO2 gene results. I know there is some argument about this gene test but it clearly states on my result that my DIO2 gene from one parent is faulty.

greygoose profile image
greygoose in reply to marigold22

Oh, I doubt he's ever heard of that - they don't do it in med school!

TSH110 profile image
TSH110 in reply to diogenes

His belief comes from his inexcusable ignorance he needs to do some research on the matter before spouting rubbish like that... not to mention his arrogance

shaws profile image
shawsAdministrator

I always assumed doctors knew all about the commonest form of conditions.

That is till I remained undiagnosed despite various diagnoses plus treaments until I diagnosed myself, finally, when TSH was 100. That was also three days after being discharged by the A&E department after an overnight stay as 'probably viral with a higher cholesterol'. A higher cholesterol level should have been right at the top of their diagnosis but obviously not - and I assume they would assume that it was due to my wrong diet.

A short while before. I demanded - desperately to my GP that 'there is something seriously wrong with me and I want to pay for a whole body-scan". He obviously thought he was dealing with a neurotic patient and said 'dont worry' I'll do a full blood test and phoned a few days later to tell me 'there's nothing wrong' as your blood tests were fine.

Tell GP it would be far better if the NHS withdrew levothyroxine altogether and provided NDT and or T3 to patients. NDT being the 'perfect' replacement as it contains ALL of the hormones a healthy gland would output.

Is this doctor aware that T4 (levothyroxine) has no purpose at all except to convert to T3 - and we may not be able to effectively. If patients do, they wont be on this forum. Ask him to tell you exactly what happens when we swallow T4.

There will always be exceptions to taking medication, even aspirin for some people.

T3 goes directly into the T3 receptor cells. Does GP know how many T3 receptor cells are in one's body. There's no T4 receptor cells as far as I know and someone will correct if I am wrong.

The NHS are 'so brave' that first they withdraw NDT - the very original replacements first made in 1892 due to False Statements made about it by them and which they would not respond to the scientist who rebutted their statements. Can one argue against the 'truth'? Consider that few, if any, died of myxedema after the introduction of NDT.

google.com/search?q=picture...

T3 has been withdrawn due to cost and statements like your GP made shows how inept their training is that they do not understand the complexity of the thyroid gland and without sufficient doses we will die - just as myxedema patients did before the introduction of NDT.

Maybe all of these doctors need their thyroid gland removed just to see how their body functions without any thyroid hormones at all. If any of their families develop hypo and not recovering on levo will no doubt join forums like this one for help/advice and source other forms of thyroid hormone replacements.

SmPea profile image
SmPea in reply to shaws

Take on board everything you say. I wanted to respond with confidence and clarity to the GP that his statement is utterly wrong but held back because I can’t afford to do the whole thing privately re:tests etc.,!

shaws profile image
shawsAdministrator in reply to SmPea

We should not be expected to get private tests because we aren't improving on levothyroxine. It is a scandalous situation. The cost to the NHS will be far more with hypo patients who aren't optimally medication with the correct thyroid hormone replacements which suit them. Besides quite a number on this forum have become too ill to work and have lost their livelihoods altogether.

shaws profile image
shawsAdministrator

I think it is the 'boiling blood' of the patients at the total 'head in sand' attitude of the professionals that annoy us most - and they are being paid whilst we have to fork out for help/advice and thyroid hormones that suit us.

shaws profile image
shawsAdministrator

I also think they would have no idea what 'They don't seem to realise T3 works at cellular level' means at all.

SeasideSusie profile image
SeasideSusieRemembering

SmPea

One size does not fit all.

One day, after I am long gone, this may filter through to the brains of the medical profession.

Walk a mile in my shoes doc, then come out with the same statement.

SmPea profile image
SmPea

Don’t be sorry, it’s really important to hear your point of view. I agree it is the few decision makers that bind the hands of the NHS that are to blame for this poor treatment.

Good to know you are feeling better!!

humanbean profile image
humanbean

Brave? That's like saying torturers are brave.

shaws profile image
shawsAdministrator

Maybe his phrase should have been:

"The NHS have taken a brave decision to take away patients' lives".

It is then that the patients have to be 'brave' when a hormone which has given them back their life then have it removed.

Maybe you should copy the following and state there is an issue in the House of Lords re the withdrawl of T3.

Doctors cannot dictate what makes hypothyroid patients well but only patients can do this. Those on levo who are well wont be on this forum. Only who have the need of T3 or NDT to give them back their health/life. This another insensitive doctor who has no idea what the right thyroid hormone replacement can do to help their patients.

thyroiduk.org.uk/

SmPea profile image
SmPea in reply to shaws

Yes I will do that when I go back for my results at the end of the month. Watch this space for more enlightening comments from this GP. Still trying find a GP in the practice more informed but loosing hope after this morning!

marigold22 profile image
marigold22 in reply to SmPea

SmPea I searched for decades for a GP and an endo who knew what they were talking about. With total respect, I suggest you don't waste your time & energy searching for a doctor who will help you. I'm so sorry to have to say that to you, but I was first diagnosed in 1981, have lived in various counties in UK, they were all about the same - ignorant and arrogant. If we have a 'complicated' case of low thyroid, it seems from this amazing forum that we have to take our health into our own hands. They prove over & over & over, that they are incompetent to deal with our health. x

SmPea profile image
SmPea in reply to marigold22

Sadly I think I have to agree with you. Although I’ve read on here that some people get the right treatment from their GP so there are some out there. Post code lottery - the odds on winning the lottery are incredibly high!

marigold22 profile image
marigold22 in reply to shaws

shaws You said : Those on levo who are well wont be on this forum. This is a tad 'back to front', (bit of brain fog here as I've been achieving so much lately) but yesterday I bumped into the 5th woman on Levo who is going downhill fast. I'm saying 'back to front' as they may well now be on this forum because I gave them details, but there must be thousands of (mainly) women who are not well on T4 but don't know what to do. The 5th woman - and this is a small market town. And without searching ... I just get chatting, and it all comes out.

bantam12 profile image
bantam12 in reply to marigold22

I'm well on Levo and obviously on the forum 😊

marigold22 profile image
marigold22 in reply to bantam12

You are fortunate. How long have you felt well on T4 only?

bantam12 profile image
bantam12 in reply to marigold22

Since starting it apart from one blip when a GP insisted on reducing dose !

By the by I have no thyroid.

marigold22 profile image
marigold22 in reply to bantam12

Wow, surprised to hear you are well on T4 only and have no thyroid. Well done x

bantam12 profile image
bantam12 in reply to marigold22

Thanks, nothing I've done to achieve it, my sister is also well on Levo, 40+ years and no thyroid.

shaws profile image
shawsAdministrator in reply to marigold22

I think you must be a 'Thyroid Warrior' and are aware of those you meet and they confide they are hypo and you advise them that 'yes' there may be a way you can improve your health. :)

I think we are so conscious now of how badly patients with hypothyroidism are treated and who still remain symptomatic due to the dogmatic dictats that only 'levothyroxine' is the right replacement and we also know many doctors feel that a TSH anywhere in the range is fine instead of around 1 or lower. Rarely is FT4 and FT3 tested, despite these two being far more informative.

You are correct that many wont be on the forum as they may not have internet connection nor the knowledge on how to search for information if they do have. If we complain to GPs often they prescribe anti-depressants by assuming we are depressed rather than on an insufficient dose, especially with a low T3. Also other prescriptions for 'pain relief' 'fatigue' or any other symptom we may have..

.

Baobabs profile image
Baobabs in reply to marigold22

I know 3 colleagues/friends who take Levo, have done for years and just accept they are and will be symptomatic forever! Yes I have spoken to them and offered the usual resources to help but probably brain fog prevails and prevents exploration? No one has ever told them they should be symptom free if meds dose is correct. They all live in different countries and have never had their FT3 tested.

marigold22 profile image
marigold22

DippyDame It's the fact that endo's particularly, are being paid vast amounts per annum to heal patients. £250k p.a.? They all live a wonderful comfortable life in their mansions, whilst their incredible ignorance is wrecking patients' lives. It's their sheer arrogance that they are correct, when (thyroid) patients are becoming more ill. It absolutely makes my blood boil. I used to live in a detached 4 bedroom house, have a french farmhouse, run a successful business. Because of 35 years of incorrect treatment & medication, I am reduced to housing benefit and pension credit. Is that fair? I personally am unable to comprehend how a person can say they want to be a doctor which entails healing their patients. All the medical information is out there. I healed myself (with this amazing army of women).

DippyDame profile image
DippyDame in reply to marigold22

Doh! Went to edit my earlier response and hit delete by mistake....small touch screens....grrrrr!

Sorry to hear about your troubles...it's bad enough coping with hypo It may be little consolation, but your bravery shines through.

In varying degrees I think we have all lost out along this thyroid journey and your phrase "this amazing army of women (there are men too)" is so apposite.

Until the faceless few at the top of the heap open their ears and their minds I can see little progress. Work to that end is being done but it will take a big climb down on the part of the decision makers.

Infuriating as it is it's not the huge salaries that annoy me - that is related to the post rather than the person - it's the people who inhabit those posts and fail to live up to their immense responsibilities that irks me. It's no different to a car mechanic failing to service a car to safety standards and the driver then having an accident with serious/fatal consequences.

It needs to filter through to the medical establishment - no, gush like a flood - that thyroid education in med schools is a complete failure. That would be the turning point!

I won't bore you with tales of my journey but suffice to say it has been littered with wrong diagnoses, unnecessary scopes and scans, useless meds and treatments...all resulting in a lifetime of deteriorating health and missed opportunities. I'm hugely grateful that I have a secure home life which has supported me through the bad times, and hugely grateful to this amazing army of women who in my 70th decade have guided me to slowly improving health, after I reached the stage where I could barely function.

Hindsight is a great thing so I try not to dwell on how different my life may have been had the medical profession joined up the dots decades ago!

I have an impaired Dio2 gene and I suspect I inherited that from my maternal grandmother who spent years (1950s) bedridden and in great pain due to Fibrositis.....I think, looking at old photographs, that she too was hypo!

Keep well and be proud of your ability to overcome the odds and survive because bearing a grudge has no impact on those responsible for your fate it simply takes up too much energy that might be put to better use.

Take care

DD

shaws profile image
shawsAdministrator in reply to marigold22

Some people like to display their 'badges' of how well they've did in exams and have letters after their names but wholly lose the plot when they come up against patients like us on the forum who complain, complain and complain that levo isn't improving our health and dismiss us as 'mental health patients' because we do not conform to what they've been taught that T4 alone is perfect.

Human beings are complex and not one is identical to another so it stands to reason that alternative hormone replacements must be prescribed rather than having situations like your own personal experience - which is horrendous and there's no going back.

We used to respect doctors and I was fortunate to see Dr Skinner (deceased) whose staff have been collating all of his and their studiest hat they hope to publish soon. Those who had 'mysterious diseases' were referred by other specialists to see him. Dr Skinner found that these patients were actually hypo and prescribed.

He found that the majority were undiagnosed hypo and all had a problem with their thyroid gland. He was taught as a student about the most common symptoms and especially to 'look and learn' from the patients.

How many doctors - in the whole world - would have 10,000 testimonials sent to the 'Authorities (GMC) to state that their lives had been saved by one doctor after a very long journey and to find out - what should be the simplest in the world - a diagnosis of hypothyrodism.

TSH110 profile image
TSH110

He is a very ignorant physician - I’d find another doctor fast

Brave? Why have the fools at NHS commissioning allowed those two Kenyan Asians grotesquely inflate drug prices and kept paying them it is not brave it is a cop out

Well, modern studies show he is wrong for many people. And what is the "right" level of FT4? Is it "right" even if way over range in order to get FT3 to mid range? NHS aren't just the apocryphal 17 years out of date, but more like 34 years and penny-pinching (except with senior staff)

greygoose profile image
greygoose

They fear being reported/sued by patients who are confused and unhappy with treatment.

I think they are in more danger of being reported by their colleagues if they step out of the box, rather than by their patients.

DippyDame profile image
DippyDame in reply to greygoose

Good point!

Shelley1954 profile image
Shelley1954

My concern is that he & other NHS GP's obviously have very little/virtually no knowledge of the thyroid, scary, but where does it stop, where else are they lacking? What the hell are they taught in med school?

shaws profile image
shawsAdministrator in reply to Shelley1954

They seem to be taught that dealing with hypothyroism is so 'easy'. They only have to diagnose if they ever think of doing a blood test - to wait until the TSH reaches10. Inform patients that their symptoms are not caused by hypo so must be depressed then prescribe anti-d's instead of checking FT4 and FT3.

Baobabs profile image
Baobabs in reply to Shelley1954

Oh don't go there !!!!!

FancyPants54 profile image
FancyPants54

Yes. Of course they have. Some people can't get any benefit from T4 alone at all.

And as for him telling you it will come right if the T4 is right that's rubbish because they throttle the T4 with a lab reference range!

SmPea profile image
SmPea

Yes I intend to! Then I’ll try and seek out the locum doctor who requested all the right bloods without any prompting in January. At that point I had no idea about Hashimoto’s or this site. I was just unwell and new something was up. I am very grateful to this doctor as I could have been on all sorts of medication now treating the symptoms not the cause.

Zephyrbear profile image
Zephyrbear

Utterly!

mourneadventurer profile image
mourneadventurer

My heart tells me to the second when I need T3 and I don’t need a clock!

When the conversion of T4 to T3 is blocked by genetic polymorphisms, fatty liver, mineral or vitamin deficiency or underlying pathogens then the natural process of T4 to T3 to T2 to T1 is hampered.

Robust scientific research on each of these conversions is not yet to my knowledge forthcoming. Logic dictates that you can’t fix an under active thyroid without figuring out why it became under active in the first place.

T4 monotheraphy and expecting it to be converted by monitoring the feedback TSH loop and not the active T3 or reverse T3 end product is in my opinion negligent if not grossly negligent.

SmPea profile image
SmPea in reply to mourneadventurer

That makes a lot of sense to me. Needs to be more investment in research around this condition.

You may also like...

Lower T4,T3,FT3,FT4,TSH after taking Levo

appreciate you all in advance. I finally founs a doctor to prescribe me Levo and he luckily...

taking T3 = always lower FT4 levels?

Why have they taken away my T3?

these will now be done at GP's surgery so don't hold out much hope that all will be tested. What...

Cost of T3 and how to get the GP to prescribe on the NHS

20mcg tablets which I cut into quarters. I am wondering how much I should be paying for these...

What was your tsh ft4 and ft3 levels when u started t3 and what was your reason for starting t3?

Hello all.. just wondered what your levels were when u started t3? Iv found everytime i try to...