Thyroid UK

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This encapsulates the basic logical problem of diagnosis and treatment

This review from Glasgow (beware Scottish patients) falls plumb into the logical trap of treating the individual patient by the statistics rather than consider them as unique. It shows just how far we have to go to drive some logic into them. Eg not treating patients with TSH 7-10: a statistic imposed on the individual as optimal diagnosis/treatment when at the same individuality is acknowledged re patients suitable for combined therapy. For an individual treatment either works or doesn't and it can only be found by trial and error, dependent on patient response, SO CLASS, SAY AFTER ME: I am treating a patient not a statistic. If the numbers say no, then leave them on one side until we have a grasp of what is happening.

Journal of Internal Medicine

Free Access

Treating hypothyroidism is not always easy: When to treat subclinical hypothyroidism, TSH goals in the elderly, and alternatives to levothyroxine monotherapy

Douglas S. Ross

First published: 11 November 2021 doi.org/10.1111/joim.13410

Abstract

The majority of patients with hypothyroidism feel better when levothyroxine treatment restores thyroid-stimulating hormone (TSH) concentrations to normal. Increasingly, a significant minority of patients remain symptomatic and are dissatisfied with their treatment. Overzealous treatment of symptomatic patients with subclinical hypothyroidism may contribute to dissatisfaction among hypothyroidism patients, as potential hypothyroid symptoms in patients with minimal hypothyroidism rarely respond to treatment. Thyroid hormone prescriptions have increased by 30% in the United States in the last decade. The diagnosis of subclinical hypothyroidism should be confirmed by repeat thyroid function tests ideally obtained at least 2 months later, as 62% of elevated TSH levels may revert to normal spontaneously. Generally, treatment is not necessary unless the TSH exceeds 7.0–10 mIU/L. In double-blinded randomized controlled trials, treatment does not improve symptoms or cognitive function if the TSH is less than 10 mIU/L. While cardiovascular events may be reduced in patients under age 65 with subclinical hypothyroidism who are treated with levothyroxine, treatment may be harmful in elderly patients with subclinical hypothyroidism. TSH goals are age dependent, with a 97.5 percentile (upper limit of normal) of 3.6 mIU/L for patients under age 40, and 7.5 mIU/L for patients over age 80. In some hypothyroid patients who are dissatisfied with treatment, especially those with a polymorphism in type 2 deiodinase, combined treatment with levothyroxine and liothyronine may be preferred.

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It certainly does encapsulate... WoW! Thank you for further confirming this craziness!

Avoid dissatisfaction with treatment by not treating them at all?

Thyroid hormone prescriptions have increased by 30% in the United States in the last decade.

Simply quoting that would not take into account things like moving from widespread 2 or 3 month prescriptions to 28-day prescribing. It might be a point if they said number of patients being prescribed thyroid hormone.

And suddenly, on their 80th birthday, all patients on levothyroxine have their doses reduced?

At least they seem to accept liothyronine as a possibility. But if the NHS routinely refuses to fund DIO2 tests, and often ignores those individuals have paid for, and not all who need liothyronine have the known SNPs in DIO2, it is little comfort.

Overzealous treatment of symptomatic patients with subclinical hypothyroidism may contribute to dissatisfaction among hypothyroidism patients, as potential hypothyroid symptoms in patients with minimal hypothyroidism rarely respond to treatment.

But why would this be? So wait until you are inevitably so sick that your quality of life has gone down the pan?

Thyroid hormone prescriptions have increased by 30% in the United States in the last decade.

This is presented as a negative thing in itself. If they did some research they'd likely find that other drugs including anti-depressant use has gone up in the intervening period of not treating sub-clinical hypothyroidism.

treatment does not improve symptoms or cognitive function if the TSH is less than 10 mIU/L.

I start feeling very low mentally at TSH 3 and over and by the time I reach 10 I wake up not wanting to carry on. I have trouble even speaking properly.

What populations have these people gathered this data from?

I suspect that the increase in thyroid hormone prescriptions probably originates in changes to health from the changes in diet when people were told they should cut out fat and reduce their intake of animal foods. Fat was replaced with sugar, people became much more likely to be fat and diabetic.

Also I read, possibly 10 - 15 years ago, that there were at least 70,000 chemicals in use in manufacturing, foods, cleaning products, clothing, transport, construction, farming, medicine etc that didn't exist in the 1950s. They might not all leach into the human body, but some of them certainly will, and they aren't guaranteed to be safe in the long-term. And what about women carrying babies? Whatever the mother is exposed to will affect the child and when the child is born it is being born into a world that humans never evolved to live in.

Excellent point humanbean, especially in regards to amount chemicals in our environment today. 100% agree about people being hoodwinked into reducing animal fats, in the 80s my mother started buying St Ivel Gold (hideous) and Flora margarine instead of butter. We woke up and had cereals instead of runny boiled eggs and french toast. Then we cut out full fat milk (because the cream aroubd the bottle was disgusting and obviously bad for you)

I wonder whether that affected me since I believe I developed hashis in late teens. Probably would have anyway but I don't think it helped, being dark skinned, to cut out good dietary sources of animal fat, with Vit A, Vit D and calcium.

When I got older I cut out salt almost entirely and developed dangerously low sodium levels.

I see the same dodgy misinformation about food being promoted today.

I hate to think about pregnant mothers!☹️. When I was expecting, I too ate in the trendy so called up-to-date nutrient deficient way promoted by food companies, and looking back ate quite poorly including a lot of rubbish fast 'craving' foods. I feel real regret over that.

I remember a doctor telling me to not take any vitamin supplements because I probably got all I needed from a standard diet 'full of plenty of grains, green leafy veg, very little fat and only lean meat...oh and avoid completely liver. He even told me to stop taking cod liver oil and I was so worried I did it!

Yes, I succumbed to the stupid information about diet for years. I used skimmed milk for about 25 years. I remember eating margarine as a child but that wasn't for health reasons - margarine was cheaper. I think I started eating butter once I had control of my own diet and had a job.

I've never managed to raise my nutrient levels by diet alone. I wouldn't believe a doctor on any subject related to diet and nutrients because they have some odd ideas about vitamin and mineral levels, for a start, and they get almost no training in the subject.

There are many members of this forum who have had ferritin levels low in range or below range and the doctor thinks it doesn't matter. Someone I remember had a ferritin level of 7 and was trying to get pregnant. Her doctor thought a level of 7 was absolutely fine and wouldn't prescribe iron supplements.

If someone was 95 years old and bed-ridden because of terminal cancer and advanced dementia then a level of 7 might make little or no difference to their quality of life. But for people who have lives to live, jobs to go to, and children to raise, then a level of 7 would make life intolerable. But doctors would probably decide the patient was depressed and needed anti-depressants. They might not even check nutrients.

The patient would probably end up also being considered to be lazy. In childhood it was the "diagnosis" I got from my parents all the damn time. I was first found to be anaemic aged 10 or 11, and again when I was 15 or 16.

Sorry, I regularly get on my hobby horse about iron and ferritin. I'll stop.

Oh you can wax lyrical to me all day, no need to stop!

After I gave birth my ferritin dropped to 5. I did get a course of ferrous sulphate. Once it went up to 15 I was refused further tablets.

I can't even get a prescription now, even if it touches the floor. Requests are refused.

You don't need a prescription to buy prescription-strength iron supplements in the UK. You can buy them without one in pharmacies with the pharmacist's permission.

Are you familiar with the BNF (British National Formulary)? It is the document that, in theory, lists all the items that doctors can prescribe (but I think there is more to it than that - doctors can prescribe things off-label too). There is a version for children (the BNFC) and one for everyone else (BNF).

bnf.nice.org.uk/

bnfc.nice.org.uk/

If you go to the page for, say, Levothyroxine and go to the medicinal forms page :

bnf.nice.org.uk/medicinal-f...

bnfc.nice.org.uk/medicinal-...

you'll see in the unit column the letters (POM) which stands for Prescription Only Medicine.

If you go to the page for ferrous fumarate (an iron supplement) and go to the medicinal forms page :

bnf.nice.org.uk/medicinal-f...

bnfc.nice.org.uk/medicinal-...

some of the pills have a (P) in the Unit column. This means that it can be sold, without prescription, under the supervision of a pharmacist. Some of the pills have no code at all which presumably means they don't even need pharmacist supervision, but they tend to get pharmacist involvement anyway with iron pills.

...

Of course, if you want to treat your own low iron levels, you can do so, but iron is dangerous in overdose so regular testing is essential. Finger-prick testing can be done with Medichecks :

medichecks.com/iron-tests/i...

and you can get a discount code from this link :

thyroiduk.org/help-and-supp...

...

I wrote a reply to another member about iron supplements available in the UK that you might find helpful :

healthunlocked.com/thyroidu...

and some words of warning about what can go wrong if people aren't careful :

healthunlocked.com/thyroidu...

...

I treated my own low levels of iron. I absorb it poorly and it took 22 months to get my ferritin to mid-range. Unfortunately for me all other iron measures stayed quite a lot lower than optimal, but I'd prefer iron-related measures to stay optimal or lower to reduce the risk of overdose.

Thank you for this advice humanbean, greatly appreciated, I have bought ferrous sulphate in the past over the counter from the pharmacy, last box cost me £6 but as I am not working due to illness it would have helped to get it on prescription. I did explain this in my request, but GP still refused.

As it is it Sulphate makes me quite ill with quite bad gastric side effects and nausea, and I never make it through a full pack anyway, and I've read recently you should only get iron from natural sources like liver, which I'm trying but not feeling great effects thus far. Used to take Spatone in past and might go back to that although even pricier.

I'm having to prioritise supplements.

If it took you 22 months then I must put my mind to it and be more consistent!

I couldn't tolerate ferrous sulfate at all. It felt like I'd swallowed a glass of strong acid after every pill.

When I want to take iron I take ferrous fumarate 210mg. The maximum dose is 1 tablet 3 times a day, and I did take that dose for nearly two years, but then I spent ages finding my maintenance dose, which ended up being 1 tablet per day on 4 or 5 days a week.

I had to take iron supplements with food because it was the only way I could tolerate them.

I took iron supplements for about 7 or 8 years, but then my ferritin shot up without warning and ended up being very close to the top of the range, and my serum iron dropped. This is classic behaviour in anaemia of chronic disease, but I don't know what happened to cause it. I stopped taking iron supplements and still test occasionally. I'll just have to see if anything changes.

One good thing about ferrous fumarate 210mg is that they are sold in packets of 84 tablets which is enough for one month in anyone taking maximum dose. Ferrous sulfate and ferrous gluconate are sold in packets of 28 tablets and I have never understood why.

Thank you for this advice x.

Just thinking, so many people - members of this forum and many others - seem to be badly affected by ferrous sulfate. It would be a good idea if everyone who cannot tolerate ferrous sulfate were to put in a Yellow Card report:

healthunlocked.com/thyroidu...

I suspect very few do. But if they did, it is possible that - eventually - the MHRA would look at the issue. On that basis, I'd encourage everyone who has problems with ferrous sulfate (or other iron supplements) to report them.

I personally dont think a terminally ill elderly patient should be treated any more differently. Being classified as terminally ill can mran you live for several years longer.....I know someone with that diagnosis who thankfully is still alive and doing pretty well seven years on. As for age that is irrelevant & discriminatory. I have a 97yrs old uncle, who still farms, drive his tractor & is bright as a button. He has more energy than me & a sharp wit.....so if he became ill & needed iron etc why not?? As the government now believes you can work till you die then there is absolutely no longer any excuse for age or illness discrimination against treatment. Life is precious no matter your age or state of health and we should all have access to treatment equally. Whether we choose to have it is of course another matter!!

Yes, you're right. I was being rather mean about elderly sick people. I do think that the NHS and the medical profession might think differently though.

My mother-in-law died in her 70s of something that should have been diagnosed a year earlier, but incompetence ruled. And nobody seemed to care. She ended up being prescribed anti-depressants because she was essentially tarred with the "depressed hypochondriac" brush because nobody could find anything wrong. She actually had ovarian cancer which was only diagnosed when it spread, and she spent most of her last few months in excruciating pain because doctors didn't believe she was in as much pain as she said.

My mother had similar issues. A blindingly obvious case of cancer which showed with all the well-known red flag symptoms but doctors just more or less ignored her. By the time she was diagnosed she was too frail to undertake any of the possible treatments.

Oh thats just dreadful humanbean. Am so so so sorry to hear it. Shame on them! When I went though cancer treatment my GPs reactions was to tell me not to bother them......they had no words of sympathy or empathy, were put out if I asked for a prescription that the oncologist recommended to save me travelling to the hospital 5 miles away & told me I shouldn't be approaching them. Clearly they believe they're not there for the sick at all. I gave up on them at that point-any faith or trust in them supporting me totally destroyed! They wouldn't even issue me a sick note - that was the hospitals job too.

Good grief! That's awful!

I would have thought that would be worthy of a strongly-worded complaint or at the very least a change of surgery.

I hope the hospital treatment you got was more compassionate and that you recovered.

Thanks Humanbean. The hospital were fantastic & I got excellant care & have been in remission now for 7yrs....which is an amazing outcome as the cancer tumor was large multi focal (meaning muti typed) & very aggressive Oncologist was horrified by GP behaviour. I was too sick to complain tbh and as the surgery had agreed to precribe me ndt on the NHS (long hard fought battle) I wasn't prepared to rock the boat. Have I forgiven them? No! It taught me that they would never care for me & since then I do all my own research of my medical issues then tell THEM what to do....& walk away.

It beggars belief they put you through that what on earth are they doing in health care?

Where GP surgeries are concerned very little! Mine still only do phone appointments & you have no choice anymore who rings you. They cant even get my repeat long term scripts correct. I only stay because a) I don't know if its a generic issue the lack of care b) they are willing to prescribe ndt on my nhs script & I fear another surgery will refuse even though a nhs endo has recommended it.

Just getting the NDT on the NHS is worth sticking with them indeed. Ours are good on phone appointments abs you can still ask to see a specific doctor as long as you are happy to take the spaces they have which can mean a longer wait. I have found the phone consultations really good and rarely have to go in and see anyone, so for me they have been a godsend. I guess it’s ok if you can verbalise the problem clearly and they actually listen. The ones I have seen or have spoken to, have all been good. I keep meaning to ask my GP if I can have NDT on the NHS given how hard it’s getting to access. I’ve been on it for nearly a decade now so they can’t claim it’s dangerous and levo was rubbish for me I was never out of the place when I was on it I was permanently ill with ine thing after another. I work a 44 hour week in a physical job and I’m no spring chicken, so they can’t argue it’s anything other than rocket juice for me. I doubt most people could hack it…and the 15 hours a week commute on top. I was always huge on stamina. According to 23&me I have a muscle type found in Olympic athletes which could explain it - my lungs must have held me back from grabbing all those gold medals 🥇 they are not up to the mark….but still serviceable 🤣🤣🤣

God that’s sad, so sorry. One of my relatives died of ovarian cancer - she got good treatment too, but it still took her at only 60 she was a brilliant academic who achieved a lot of important work in her life so has left a lasting legacy.

I totally agree with you just because someone is dying (& let’s face it we are all dying as we age) does not mean it is ok to withdraw necessary hormones therapy. Where will that sort of logic end? A dear friend of mine lived for 12 years after being told she was terminally ill so it can be a long time to take full effect. Those TSH numbers are complete Tommy rot too. I wish I could give the author, Douglas S Ross, a taste of his own medicine and see how he would like it. He’d be on his knees begging for a dose increase.

None of these medical professionals including the author, who foist this inferior treatment on us would put up with it themselves for more than a week I tell you! They'd seek out private professional help, no way would they give up an illustrious medical career in exchange for being housebound due to absolutely no energy at all.

I saw a private GP once for Hashimotos. He was on the TUK list. He readily admitted that when he worked as a GP solely in the NHS he had previously pooh poohed any patients that complained of still being ill once their lab results were 'in range'. Handed out ADs and levo only.....until he developed autoimmune thyroiditis himself and didn't get better and became so ill, he was struggling to practice.

He went digging, discovered nature thyroid, recovered and to his credit decided he could no longer in conscience continue treating patients under the misguided guidelines.

He told me if I had walked into his office 10 years ago, he'd have assumed I had a mental health problem too.

He said he sometimes thinks years later, about the many women he didn't help.

Which makes me wonder about how many other health professionals there may be who have thyroid illness, who are treating themselves outside the guidelines and are saying nothing.

That’s very interesting. His conscience obviously weighed heavy.

My mother always said butter cheese eggs etc were good gor you and all the processed replacements were the way the food I industry good rid of their waste products all devoid if goodness. She was a big fan of John Yukin who was mercilessly harassed by the “establishment” for saying it was sugar not fat that was the real culprit leading to increasing levels of poor health.Later on I adopted the high carb low fat supposedly healthy diet - I went on to develop atropic autoimmune thyroiditis - it could be genetic but something has to turn those genes on I think the plethora of chemicals were are now subjected too must play a big role. I was shocked to read these Misti plastic particles are now being found in people’s lungs and deep in the lungs - how’s that going to improve anyones health? As for this paper it makes my blood boil to read such garbage dressed up as being a serious scientific study rather than a mysogynistic heap of nonsense.

"Overzealous treatment of symptomatic patients with subclinical hypothyroidism may contribute to dissatisfaction among hypothyroidism patients, as potential hypothyroid symptoms in patients with minimal hypothyroidism rarely respond to treatment.....

But why would this be? So wait until you are inevitably so sick that your quality of life has gone down the pan?

The underlined words have been used in (thinly veiled) context of "i do not believe these symptoms are caused by hypothyroidism at all .. they are non specific symptoms from 'something else'/ dissatisfaction with normal ageing / in their head' etc etc

They do not believe everyone with slightly raised TSH (with or without TPOab )will inevitably become truly hypothyroid and suffer symptoms actually caused by low thyroid hormone.....it's saying that "attempting to treat non thyroid symptoms with Levo leads to dissatisfaction with Levo."

It isn't really surprising that doctors and researchers believe this.

During my lifetime I have seen more and more disease being dismissed as mental illness, symptoms being dismissed as psychological, assumptions being made that all sick people are really, deep down, just lazy and all they need is exercise and CBT.

Many, many diseases are being declared to be "functional" (i.e all in the head), and patients are diagnosed with "somatic symptom disorder". The only drugs doctors appear to be happy to prescribe are anti-depressants and statins.

And now, more and more research is being dedicated to showing that people with a functional disease have something wrong with their brains that CBT and exercise will fix.

I was told, back in the 90s, that my supposed IBS was "functional" and got the tired old trope "It's not the hardware, it's the software" to explain what functional actually meant. I didn't know any better at the time and just accepted this nonsense. A few years later I had surgery on all the adhesions I had sticking my bowel to places it shouldn't be stuck to, and my IBS was miraculously cured. No surgery on my brain, no CBT, and no anti-depressants were required.

I was told, back in the 90s, that my supposed IBS was "functional" Wow, I thought this was relatively new thinking. I was having some problems a couple of months ago (lasted about 3 months) and wondered if I might have had IBS along with the coeliac, although the symptoms didn't really fit.

I read some NHS guide saying that it was important for medics to explain a link between the chemical effects of anti-depressants on the brain, and how they 'think' they have a similar effect on the gut, and I thought "What a load of tosh". What you're really saying is, you don't have a clue.

One of the reasons that I thought this might be 'new' thinking was because when I was referred to Gastro for coeliac, I looked up the Consultants at my local hospital to see if any of them listed coeliac under their interests............No they didn't, but all, without exception listed IBS, which wrongly indicated to me that they were really making an effort to help people in this area.

I'm really pleased that you got yours correctly resolved in the end. 🙂

In order to get my "IBS" fixed I did have to go to a different hospital and see a completely different set of doctors.

So, you had to find a Gastro prepared to look further than IBS, which is really pretty negligent.

It took me at least 3yrs to get tested for coeliac. I wish I'd found this forum earlier, but I'd been tested in 2007, and it didn't occur to me. It should have occurred to my GP in 2018, when I sat in front of her begging for something for the nausea though.

I did get thorough testing for coeliac disease (stomach biopsies and blood tests) but the results came back negative. It was only when I started getting interested in doing things for myself and ignoring doctors as much as possible that I experimented with going gluten-free. I was convinced it would be a waste of time, but it turned out I am gluten-intolerant which won't show up in any tests that I know of. I just had to try it out to see what happens. I've never regretted it, although I resent the fact that I can't eat jam doughnuts any more.

Actually, I've just realised I went off at a tangent there, and got myself confused.

The surgery I had in the early 2000s fixed the severe pain I had in one particular place.

Going gluten free was something I did much later and it reduced pain in a different place.

I think I was the one guilty of going off on a tangent. I was very badly making a link about struggling to get a dx for something that shouldn't be so difficult.

Mmmn, jam doughnuts. For me its decent bread, and not being able to try new products. I see new things in the supermarket etc., but can never know if I would have liked them, or not.

Tests for gluten intolerance have only come into play in the last few years and then only available at two centres in the whole of the uk. I fell down that hole too.......but now formerly diagnosed as finally saw the leading professor in the field. Two neurologists didnt pick it up or even think of it......one said orthostatic tremor (which is a description of a type of tremor rather than cause) the other thought it might be Parkinsons (though I didnt have a parkinsons tremor ) based on family history & wanted to trial me on Levodopa that I declined. B12 jabs helped & still do but ultimately gluten intolerance was the underlying problem and being strictly gluten free has brought a huge improvement but has come too too late for a full recovery.

Thank goodness you found decent physicians

Yes, I was lucky - a rare event for me in terms of medical care.

Sorry to hear that Humanbean. I think the trouble is doctors have spouted nonsense for decades but the invention of the internet increasingly calls them to account as we have far more access to information and other patients with health conditions. So now we see "research " being done to justify the non sensical rubbish doctors like to feed their patients with. I remember going to a doctor as I felt exhausted all the time. Doctor did blood tests and pronounced nothing wrong & stated, "one thing is for sure you dont have cancer." I believed him. He was wrong it turned out indeed to be cancer........he never apologised.

Funny how NDT has had such a remarkable “placebo” effect on my lingering hypothyroid symptoms that Levothyroxine and antidepressantsfailed to address. I hope this vogue for everything being all in the mind goes out of fashion fast. How can anything be all in the mind - as if we are nothing more than a functioning head with a robotic body added on. I dread to think what is in the minds of people like this author - people reduced to TSH numbers all neatly filed in ascending age and TSH order - that’s thyroid disorder box ticked and licked. Small wonder were in this godawful mess.

That’s the sort of nonsensical logic they dress up as scientific fact

"treatment does not improve symptoms or cognitive function if the TSH is less than 10 mIU/L.

I start feeling very low mentally at TSH 3 and over and by the time I reach 10 I wake up not wanting to carry on. I have trouble even speaking properly.

What populations have these people gathered this data from?"

They get it from studies which looked at data from subclinical hypo patients, which asked them some (wrong) questions on a questionnaire ,then (under ?) treated them with Levo so their TSH is 'in-range' (which could mean 4.999) then asked them if they feel any better on the same brief questionnaire which still doesn't ask the relevant questions ... and when their cognitive function score on this very vague test isn't any better with their TSH at 4.999 than it was with TSH at 6.999 ,they write a study 'proving' there's no point treating subclinical hypothyroidism cos it didn't make anybody feel better.

Then 6 other groups of researchers are 'encouraged' to repeat similar (biased / poorly observed/ badly thought out) studies ,and there you go ....it's 'a fact '.

Ahhhh I see. You break it down very well. BS in medical speech then!

I wish people like me could be gathered data from. Question me dammit. No one ever does. The most I get is that anonymous GP practice satisfaction questionnaire , every other year or so.

That said.....people who come to this forum are of like mind. I have had some quite astonishing pushback from so called 'healthy doing well on levo' people on other generic health forums.

I have seen people who are miserable and undertreated, being told by other people who have thyroid illness who are ostensibly doing well, that they are fine and it's all in their head if they are already on levo and trust the doctor even when the person has a sky high TSH.

Perhaps these are the population that produce these 'happy stats'

Yes ,and to be fair , those happy stats patients probably are in the majority.. although i do have my doubts that the majority is really as big as 85% satisfied on Levo / 15% dissatisfied .

After all i'm damn sure anybody collecting stats from my NHS records would stick me in the "satisfied and adequately treated on Levo , but just happens to have developed a totally unrelated co-morbidity of ? CFS type fatigue ? head case " box.

So the chances are, i'm used as part of those 'happy stats' too ,which is NOT the case, and never has been since my thyroid went wrong and they told me the little white pill would fix me. But it's funny that i didn't have any sign of the '?cfs?head case' problem for 30 yrs before that.

Humans all need to walk a mile in the other persons shoes before expressing an opinion .. but some of us are not very good at realising that ... until we loose our own shoes .

I understand how people who feel fine on anywhere round about the average dose of Levo , who can shovel it in with coffee or not , and who occasionally forget about it for days without noticing much difference at all , will find it very hard to believe that some of us can have such difficulties on it .

Because decades ago , I used to be just as unbelieving and dismissive about most people i met who said they had ME .. so it totally served me right when i got something very similar. I do understand now ... karma.

Oh no, don't call it Karma, be kind to yourself!

About 15 odd years ago I was out walking with my ex in Greenwich Park London, we bumped into a former university friend of his. She was walking with the aid of two walking sticks and was in her early thirties at best. Her legs looked curiously fine despite the two sticks. No cast, no limping.

My ex remarked that she had suddenly dropped out of the university course. Then questioned whether she had had an accident.

'Oh no, I've been in bed for six months...and have started trying to walk again. I just got a bit of energy back, that's why I put uni on hold for a couple years

'What's wrong, did you have an accident? My then partner asked.

At which point her partner cut in defensively before she could answer (for good reason looking back) that she had M.E. She even attempted humour and said 'you know, the Yuppie flu, I get tired and stay in bed all day'

I think she was so used to getting reactions of incredulity from people she put on that jokey stance. My ex was very courteous, expressed sympathy and moved the subject along.

I was silently thinking really???! I mean reaaaalllly? Six Months in bed? Two sticks? Two! But she's walking fine.

Well when it became my turn I got my just deserts. Now I get the really??! But you're only in your 40s. My 80 year old grandmother can go to the shops and back, my sister with multiple sclerosis goes swimming every week, and you can't get out of bed? But you look fine. Excuses.

I also had to drop out of uni myself, and the partner that expressed sympathy for his friend wasn't so sympathetic when it became clear there wasn't an easy fix for me.

So I learned not to be haughty and sympathise before judging!!

I have to say it has taught me humility. I'm in a good position to receive some good fortune now, I'm sure a white witch or fairy has noticed my humble and penitent disposition and will turn up with some gifts soon!🙂

Awwwww thats harsh on yourself tattyboogle! I dont believe in Karma. We use it to blame ourselves but Ive never seen it occur on other villains on the stage.......they seem to ride off into the sunset impervious to the hurt they cause. So I chucked Karma out!! 🤣😂

We are all ignorant even those who think theyre not! Thats the truth.....all we can do is try to be open minded & try to catch outselves when we are making assumptions. Not easy, I frequently fall but I hope that Im slowly improving & falling less. 🙏Though thats an assumption too!! 😱

thanks waveylines .... don't worry ,the 'karma ' comment was rather tongue in cheek .

I've never been buddhist enough to go in for karma ... i'm a bit more Daoist ... " shit happens... go with it "

The latest research indicates there’s a big price to pay for taking Levothyroxine monotherapy given the increase in serious illness that seems to be associated with it.

I like that phrase... "Happy stats". I will use it if the opportunity arises.

It does have a catchy ring to it!😄

Oh on point! I’m saving this post. That is the most perfect analysis of their analysis 😊👍 tatty you are a star! 🌟

Spot on!

When I was left under medicated, at my worst, I couldn’t get up before 12 noon and then only because my hubby made me a cuppa and gently prompted me. I was on the sofa most of the day - managed about two hours pottering then back in bed by 9pm. Cognition? GONE! TSH at that time taken and came back as 7.89 -one day I tried to make my own cup of tea - took me 20 minutes (nearly gave up!).

They are clueless 🙄

And am afraid they wouldve said its a mental illness, not due to no or undertreatment for hypothyroidism. They gave me the label of CFS/ME.........& tried me on graded exercise therapy and homeopathy. None of it worked as I carried on declining. The psychologist pronounced that i was a positive person so thankfully didnt proclaim that was the cause or that I needed CBT. The OT said I needed hand rails and chair heighteners etc....to help me but Id have to buy my own (I didnt bother) The physio said I wasnt doing the graded exercise therapy programne correctly because Id be improving if I was, not declining. When they got nowhere they eventually closed my case and left me to sink. What a waste of money!! Then my TSH finally crept into over range and the GP proclaime with delight " You have hypothyroidism" but then didnt know how to treat it so popped me on a starter dose and left me to sink further. I went private after that...... best decision I ever made.

Parallels re the starter dose Waveylines. 😱. Do you think they all bought the same book? ‘How to avoid diagnosis long as possible and then under medicate”

I stuck with brow beating GPs at my local surgery. Once I had a reputation, they just gave me what I wanted. Not being in awe of their positions and talking to them on an absolute level has perhaps got them on the back foot. I talk to them as of they were colleagues, not superior in any way.

The only one who was stupid enough to try to put me down- telling me I didn’t know what I was talking about, 10 minutes later bleated down the phone “I’ve given you what you want why are you still having a go at me? “. I wasn’t having a go as she’s so quaintly put it, but I was showing her she knew far less than I did (and at the time I didn’t know that much more and was well aware of the fact).

I’m a bit if s bulldozer, it has been a hubris in the past. I worked on keeping that side of me suppressed as much as possible, but it is good to pull out in emergencies 😂👍. Came in handy on more than one occasion when I was advocating for my parents.

Well done Charlie! I am the same with my GPS. Once I got the treatment I needed I then set about getting the NHS to prescribe ndt. Took a while. Moved GP surgery to achieve that goal. We had a few run in the early days but I reckon there's a note on my file which probably says "Beware expert patient." It had got to the point that these days theyve started asking me what I think it is and what do I think I need. Mind you theyve had a big change in staff of late so that status quo may well have changed. ..... I keep my contact as low as possible! 😊

Me too I brushed off my GP about 5 months ago with a report (computer generated) bringing her ‘up to speed’ having got to therapeutic dose of levo by tackling whoever was available. Finished it off with ‘I’m fine focus on the folks that need you I’m hoping to be of little bother going forward’ a polite ‘now £*^> off’ 🤣

😂👍

TSH goals are age dependent, with a 97.5 percentile (upper limit of normal) of 3.6 mIU/L for patients under age 40, and 7.5 mIU/L for patients over age 80.

I wonder where they got the upper limits of normal from? Which population were they sampling?

The thread on the following link has quite different data (from sources which are given) in which TSH for older people is only very slightly higher than that of younger people :

healthunlocked.com/thyroidu...

...

If someone feels at their best when their Free T4 and Free T3 are 60% or more through the range then making them live with levels which are under 20% of the way through the range is sadistic. That person will have no hope of a good quality of life.

And I wonder what the ft3 and ft4 levels were of the 7.5 mIU/L for patients over age 80? Just because it is, doesn't mean it should be!

It is not uncommon for research into anything thyroid-related to ONLY test TSH.

The next best thing is that some research might test TSH and Free T4.

But research which tests TSH, Free T4 and Free T3 all at the same time is really quite rare, I think.

Agreed, but it shouldn't be.

And these will all be averages with individual variations which may well fall with the younger persons levels or vice versa. OMG and someone funded this nonsensical research?!! More wasted money..... I despair.

I just had to repeat this, helvella "Avoid dissatisfaction with treatment by not treating them at all?" and this RedSonja "So wait until you are inevitably so sick that your quality of life has gone down the pan?"

When endos listen to this (below) and come to the same conclusion as the Drifters...

youtu.be/kM0QFPp78Os

(None of the real videos worked - this is a tribute group.)

Ace!! 👍😂😃

I am concerned when researchers quote statements but don't investigate 'why?' Like 'TSH goals are age dependant' (and rise with age).

Does the research that found this look into what the fT3 and fT4 levels were?

Is it just that TSH becomes less responsive with age?

"Is it just that TSH becomes less responsive with age?" I don't have the answer to that, but I think everything becomes less responsive with age.

I can understand the STOP criteria for the elderly for meds that may have adverse side effects, but thyroid meds, and things like B12/Vit d etc., ??????????. I have read that one of the explanations for this is that patients may feel better than they actually are, and over-do things. I am lost for words on this. 🤦‍♀️

Woe betide the elderly feeling better......theyre meant to decline then die. Maybe we should ban birthdates????? 😂

I found out afterwards that in the later stages of my mums life when she was officially deemed at the "end of life stage" in a care home the medics removed ALL of her medications. (i didnt know this at the time) Was this necessary? It meant her "end" was a series of strokes as theyd removed the medications that prevented them. I still cant get my head round that. I think its a highly dubious practise.......so I can look forward to no thyroid meds & b12 injections, no heart meds to regulate heart rate, if that happens to me. Horrible! the end of life stage can last 6 months! Cruel.....

I agree, I think it is highly dubious too. How awful for you to find out when it was too late. That is unforgivable.

It makes me think that we should give permission for a trusted person to have access/influence on medical treatment whilst still able, in case of sudden vulnerability.

Makes no difference Nellie- I had power of attorney for both health & welfare AND finance. They still didn't tell me. In a care home the home has superiority over you with a PoA. They can still make decisions without. You have more say in a hospital than a care home. I do not know of a way round it tbh. The only difference is the care home cant ban you if u have PoA but as a relative without one they can.

Mmmn, that's just bloody awful. I know quite a few people on the heart forum have mentioned that they have found that they have DNR on file, without their knowledge.

I think that maybe you've got to be aware to raise the questions, but until you've been through it you can't possibly know that. I know my neighbour's (dementia) relatives know what medications he is on, but they have previous experience with a parent. He is in an NHS facility though (big chap...6' 6", and they couldn't cope with him in the private sector), which I think makes a huge difference..........so many staff compared to the care homes that I viewed for him.

The "why" doesn't seem to enter some people's thought process!I was brought up (a long time ago) to always imagine a voice in my ear asking, " Why?"

Why is it that pretty much every other organ in the body of an older person is less effective? Whether you talk about growth of hair and nails, salivary glands, stomach acid and digestive enzymes, strength and stamina, etc., etc.

Yet this amazing gland, the anterior pituitary, not only continues to work, but miraculously produces MORE TSH than before. And it does so, this paper claims, despite there being plenty of thyroid hormone around. At 10.0, it is being regarded as somewhere around what a healthy younger person would produce. That is, in the order of seven to ten times as much TSH as when the same person was a young adult.

Does it also produce more of the other hormones made in the anterior pituitary?

● Adrenocorticotrophic hormone (ACTH)

● Luteinising hormone (LH)

● Follicle-stimulating hormone (FSH)

● Prolactin (PRL)

● Growth hormone (GH)

● Melanocyte-stimulating hormone (MSH)

Whilst this is mere speculation by me, it seems very unlikely. But I could be wrong.

Interesting point, and I agree with you . Mine you I’m sure one of my ears has grown larger

Everyone's ears appear to grow larger as they age, but I think the effect might be more pronounced in men (or at least appear to be more pronounced in men). Some researchers think that the effect is caused by actual growth, others think it is caused by the effects of gravity (and hence sagging) over one's lifetime. Since the problem affects both men and women I can't believe it is gravity that is solely to blame - women are affected by gravity just as much as men and yet their ears don't seem to expand to such a degree as men's.

There are quite a few links on the subject.

theguardian.com/lifeandstyl...

themedicinejournal.com/arti...

pubmed.ncbi.nlm.nih.gov/186...

Its all rubbish Helvella. It comes when you single out one factor in a body that has many many interplays. So many maybes and assumptions made in this research that it should never have passed into publication. Lol....

No idea. Am ignorant but dont testerone & estrogen levels fall as you age? Would they affect the thyroid? Also b12 levels definately fall as we become less able to absorb normally. So many factors and surely they play a role on the effects on the thyroid. Is the TSH therefore arguably raised because its trying to get the thyroid to work harder because of the factors above? Do the researchers ever consider & check these factors and the interplay it has on the body. People over a certain age are put on anticoagulants do these have a part to play long termly. As we age people generally end up on more meds. Do these have other impacts on the body. So many factors & theyre not even mentioned! Weak weak research.....

Yet many hypothyroid patients who have persistent symptoms will remain dissatisfied despite liothyronine treatment, and other potential causes for their symptoms and dissatisfaction should be pursued [82].

Talk about giving up at the first hurdle!

Meantime, back on my own hobby horse!

Were they prescribed an adequate amount of T3 ?

I doubt it!

I was diagnosed with several syndromes which I always refuted, most of which turned out to be the consequence of low cellular T3.

The endo I saw insisted levo was the answer despite the fact that after 20 years it had left me a physical, and increasingly a mental, wreck.

We parted company.

Despite thick brain fog I started to self medicate with T3-only and my symptoms began to ease.

I suspect they would have questioned my mental health next, had I not walked away and taken control.

It's all very well accepting T3 as a possibility but if they don't understand what they are dealing with then they may as well offer chocolate buttons!!

The Dio2 test can indicate impaired T4 to T3 conversion ( homozygous having a greater impact than heterozygous) but a competent medic should be able to identify poor conversion by comparing FT4 with FT3.

Problem....they are reluctant to test FT3!

Until they understand the "ducks" and then get them all checked, sorted and lined up in a row...the diagnosis and medication of thyroid disease will remain a mess and feathers will fly!

For an individual treatment either works or doesn't and it can only be found by trial and error, dependent on patient response, SO CLASS, SAY AFTER ME: I am treating a patient not a statistic. If the numbers say no, then leave them on one side until we have a grasp of what is happening.

Thank you diogenes....but for comments such as yours, which gave me the confidence to ignore medics, I may no longer be here to bore everyone with my rants.

I don't need binoculars to see my 80th birthday when an upper TSH limit of 7.5 is the goal.

I see trouble ahead...mine is suppressed and staying there!!

Hands off my T3!!

It's all very well accepting T3 as a possibility but if they don't understand what they are dealing with then they may as well offer chocolate buttons!!

l laughed out loud I did dippy d .....

That's so true .

Best thing is to stay off piste DippyDame & never let some one take over with a health power of attourney. I think if I have reached that stage where competancy might become an issue am hiring a boat and jumping over board! Doesnt bare thinking about!

Funny that! Several years ago when I first thought of moving to T3 I said to my then GP, " I'm going off-piste".

After decades of useless treatments I knew I had no hope otherwise

She was lovely, and understood, but sadly she left and I was left with the nay sayers!

After some discussion they now leave me to it.

I think, secretly, they realise I know more than they do.

And, I'm not dead, as one of them predicted!!

Take care.

i didn't obediently die 'as predicted' either.

mind you, i'm not as far 'off piste' as you are , apparently i'm going to die unless i reduce my 112.5mcg levo to 100mcg.

They seem to leave me to it now.

Will keep everyone updated when i start to feel a bit dead.

I was on 200mcg T3 at the time and slowly beginning to function againThe fact that I was doing that didn't matter...but suppressed TSH and FT4 and FT3 in orbit did

Wish I'd had diogenes mantra back then, "I am treating a patient not a statistic."

I tried to explain about RTH....I think they were then looking for broomstick!

Hence my avatar!!

Your "off piste' is even more rediculous than mine....12.5mcg levo to save your life.

What's Up Doc!!

Ah yeah am very familiar with the death threat or bone destruction or heart failure stick. Funny how they've never said any of those things when your not medicated or under medicated.....yet the science is very strong if you don't treat or treat poorly......well it used to be. Maybe they've washed it all away now!On the plus it sounds like we've all learnt a bitter truth.....be your own advocate, do your own research & treat yourself if all else fails. Am far less inclined to wait for the NHS to act as am not prepared to suffer whilst they deem whether & when to see me or not and whether/when to treat & for them to figure out what is effective. Lifes too short.....am not prepared to be one of their casualty statistics! I fear theyre more likely to cause me harm, more likely to cause death by: their long delays, ignorance & mis informed pathways & treatment protocols then anything I may do to myself.

I wish I were surprised 🙄

What a bunch! I had a TSH of 5.117 but most of the clinical symptoms including a slow heart rate (eg 52 bpm after cooking and serving breakfasts and glugging coffee).

Thankfully the doc did acknowledge hypothyroidism, sadly fluffed it thereafter with leaving me on a starter dose for a child for 6 months. Sad old story on profile 😬

Once again, a group who thinks anyone who does not fit their statistical model does not have a problem.

Give me strength……. One step forward, two steps back……… grrrrrrrrrrrrr

Its been like 10 steps back yearly since they brought synthectics into play & the blood test regime. You had a much better chance of optimal treatment before that.......all accept the people on T3 only......liothronine has been a life saver for them. Forgive me you T3 takers! 🙏

I am sick of doctors who try and match patients to statistics, regardless of how the patient feels.

I feel very jaded by this report. I think I may be a 'dissatisfied' symptom sufferer. I am afraid it smacks of slavish adherance and need to up the viability of the drug companies producing the now almost monoculture of thyroxine as a bullet drug...and if it doesn't work it's because we are dissatisfied. Sorry for this I am just waiting for an endo appoinment...and for what?!

Love your posts Diogenes they always raise the tempersture on this forum. Do you think there is ever any hope of change in treatment approaches of hypothyroidism by the medical fraternity for the better? The situation just seems to get worse. Am so glad you are fighting our corner.

Hear, hear!

I believe there is, and it will come from the USA. Now, I approve of the NHS basically, but despair of its bureaucratic bumbledom and the defensive attitude that the medical fraternity(sorority) use against those like me who put on pressure for an inferior system to be improved, as a priority. I read about just such a situation regarding the fate of whistleblowers inside the NHS who try to draw attention to poor practice. Many of them were vilified, had false charges levelled against them, and critical allegations about their "competence". It led in several cases to the whistleblower losing their job if not directly then through a demotion or a dismissal of their promotion prospects. Why I say that the US will lead is because their system (with all its faults and there are many) has a basic flexibility with room to act differently if there is reason to do so (and get loads of papers out as a result which spreads the message further). Theirs is a system I personally would not want to live under. As an example, when I lived in the USA in Washington I boarded with a very pleasant widow who I later found was so poor that I actually some months gave her 2 months rent to help get through. She told me that some time before when her husband was alive had a severe stroke, and had the impertinence to keep on living (if that was a life) for several years. When he was alive they were well off, but they were steadily pauperised by an insurance system which, when time had elapsed, reneged upon them and ceased payment. It's these sort of attitudes here and elsewhere which cast medics as people from on high who dish out opinions to the lowly patient and expect gratitude whatever the outcome. Fortunately I am safe from such manoeuvres. I cannot be sacked (I work independently), I cannot muzzled by lack of funds (don't need any) so that the opinion leaders take the only route open to them - the averted glance and refusal to admit anything outside their belief systems. But that attitude simply bounces off the hard reality of truth - one cannot for ever claim black is white. That's why all on this posting system should keep a hopeful attitude for better things.

Thank you!

Thank you Diogenes. 😊 I appreciate all that you do.

Ive found the NHS struggles with diagnosis or management of many chronic conditions & personally Ive had to fight for diagnosis, then proactive treatment each time. Each time Ive had to be ahead of the game pushing the NHS to act, then pushing them to provide the best treatment. Not necessarily expensive treatment like b12 for example but theyre so bound by their rigid protocols & routes it produces a long road & a persistany fight. Ive carried that fight through but had to resort to self medicating each time to avoid further damage. Your so right none of the professionals dare act as they fear massive reprisal. The system is hugely flawed & increasingly so. NDT products on the NHS is restricted to just two now. Not based on price because one of them is Armour. Why they've selected Erfa as the second one I really don't know as it has a variable history. Its probably politics because its certainly not cost!!

They spend years training up doctors but then theyre not allowed to use their brains and act....

Am so glad you are independent and out of the reach of their grasp.....I had wondered how you'd managed to survive where others have been gagged or ruined!!!

I meant to add - your poor landlady what a dreadful fate. Ive heard this is what the insurance companies get up to. Woe betide you if become ill....especially long term conditions. Lol....

Have you seen this study? This showed that patients did better on combination therapy

endocrinologyadvisor.com/ho...

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