Why endocrinologists get it wrong: I've been... - Thyroid UK

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Why endocrinologists get it wrong

diogenes profile image
diogenesRemembering
65 Replies

I've been thinking about the fact that most endocrinologists seem to be expert in diabetes and only secondarily if at all in matters such as thyroid. Thyroid is treated in a simplistic way from a belief that it is indeed a simple matter compared with diabetes. Why do so many of them have no clue as to how to diagnose and treat thyroid sufferers? I think it is because the approach to diabetes treatment is fundamentally different, and to try to extrapolate diabetic treatment thinking to thyroid matters is fundamentally wrong. In diabetes, no hormone is totally lacking (rare to have zero insulin unlike for T4 in hypothyroidism), but simply in inappropriate levels, giving glucose problems and all that follows. Diabetes comes in several forms, in one of which diet can be a major help. It's therefore quite OK to experiment with insulin injection, drug levels and/or diet to come to a satisfactory outcome. But this isn't true for hypothyroid patients. The situation is stark and only open to one option. Often they have either no hormone at all made in the body or very much less than can support health. So the only recourse is not to drugs none of which can flail the failing thyroid into more action, but only supply of the hormone itself. Diet cannot cure the basic matter either. Furthermore, thyroid action is absolutely fundamental to the body and is closely and strongly maintained to obtain best outcome given the circumstances. So whereas the pancreas insulin is fluctuating quite strongly in amount, moment by moment, according to sugar levels, the healthy thyroid is much more stable in the amount of hormone it puts out at each moment.

Accordingly, it is quite wrong to use "diabetes" thinking in diagnosing thyroid problems, for example by withdrawing thyroxine to see what happens, as could be done quite legitimately with drugs and diet in diabetes, with a view to optimizing appropriate treatment. I think this is the problem when endocrinologists suggest the completely incorrect courses of action they do. They cannot reset their minds from the way in which diabetes is detected and controlled to a fundamentally different (and more restricted) way in which hypothyroidism should be approached..

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65 Replies
Marz profile image
Marz

Totally hear what you are saying and as always it makes sense. However we have read so many posts by people who are of sound mind and able to discuss their condition and yet are shouted at and insulted and wrongly accused of not taking their doses correctly - surely this has nothing to do with a diabetes treatment mentality. According to many Endos and GP's, so many need anti-depressants for their symptoms which they insist is nothing to do with their thyroid.

I feel most issues with people are about FEAR - and these Endos and GP's are frightened of being found wanting in the field of Thyroid diagnoses and treatment.

So what explanation do we have for GP's that cannot understand blood test results both for the Thyroid and the all important vitamins and minerals ? We see shocking neglect on this Forum.

I am glad I live in Crete and can take care of myself - with knowledge gleaned from others who know more than me :-)

diogenes profile image
diogenesRemembering in reply to Marz

I think people are accused of not taking their doses correctly, because the outcome in effect and/or numbers is not what the endo/GP was expecting. Another part of the simplistic thinking which transfers ignorance of the subject by the practitioner to blame for the patient. In Janet & John thinking, a given action MUST give the right answer and if it doesn't then the patient must be at fault.

Hillwoman profile image
Hillwoman in reply to diogenes

One of the implications of what you're saying is that perhaps the wrong people enter medicine: people who have good memories for detail, but whose critical faculties are wanting. Given the long training and packed syllabus, it is perhaps not surprising that the effort to retain information takes precedence over the nuanced assessment of variable individual physiology. But shouldn't endocrinologists - very well remunerated consultants near the top of the medical hierarchy - be held to much higher account than the fallible generalists in primary care? We need first class brains in medicine, and we don't always get them.

SilverAvocado profile image
SilverAvocado

Is this a situation where thyroid is seen to be 'simple', because it's less of a flexible situation than diabetes?And that simpleness has been enormously exaggerated until many doctors believe that you can just hand everyone 50mcg or 100mcg of Levothyroxine, and they should be fine?

I wonder if this is also a side effect of the events that lead to the change over from dessicated thyroid to Levothyroxine as the preferred treatment. Pharmaceutical companies got the upper hand in telling the story about what hypothyroidism is, and it seems very based around what Levothyroxine is as a treatment. Hypothyroidism is that condition which is cured by Levothyroxine.

If Levo doesn't work, it's probably a digestive problem, or heart disease, or CFS. And then there's the hostility when people ask for more tests or complain of continued symptoms, the Levothyroxine should be working, because the focus is on defending that as the ideal treatment, not looking at the person and their set of symptoms.

LAHs profile image
LAHs in reply to SilverAvocado

I have thought a lot about that. I think it is because the doctors can hand out a 50mcg or 100mcg of Levo and x% of the time it does fix the problem. I would love to find out what x is. If it is 80 or greater than then it will be a long time before us patients "on the fringe" of the problem will get any answers or extra attention.

SilverAvocado profile image
SilverAvocado in reply to LAHs

Yes, I'm curious about x, too. Was it you who said the other day they were saying it's amazing how much difference a small change in dosage made, and the doctor said that its only for you and a few other weirdos? That really stuck with me, because I feel like it's a clue!

I definitely get the sense from the forum that there's a big spectrum of how sensitive/efficient people are with hormone. Some patients will do well on almost any dose of Levo. But I've now got to the point where if I miss one dose (I have three a day) I will notice the difference within hours.

But I'd dearly love to know how the spectrum pans out, what percentage are absolutely fine, then how many feel a bit rotten, then the people who need a lot of dose tuning, then slowly it gets to the really difficult people who need either T3-only or NDT, and of course people who never get well. Hopefully I won't be in that last category!!!

I find I meet loads of people who have thyroid problems. It feels like about 50/50 who say they're completely great, and those who have some horror story! Met a woman recently who had had thyroid cancer. She said she did well on her previous dose, but they'd made her reduce because it was too dangerous, and now she just feels a bit crap, but can do everything she needs to do. So the number of people who do well is obscured by a bit of sadism from doctors as well :p

LAHs profile image
LAHs in reply to SilverAvocado

Yes, I too know about 6 people with thyroid problems but they just take their Levo and have no complaints. I always want to talk about thyroids and our reactions to doses but for them it is just a pill a day and don't even think about it, they don't even think its worth a brief discussion. For me it's the state of 16 hours of my day. When I have to cut a pill they do not split evenly, when I take a "big" half I feel great when I have to take the "little" half I feel it.

SilverAvocado profile image
SilverAvocado in reply to LAHs

Yes, it makes a big difference. I me, too. I split into 3 doses a day. I've just been having a little fiddle with them and taking a larger dose in the morning, and smaller at night. It's made a huge change to the shape of my day!

Angel_of_the_North profile image
Angel_of_the_North in reply to LAHs

Well, I wonder if it does or whether the patients are too cowed or too trusting to complain and are used to feeling unwell. After all, an arrogant, angry doctor can be pretty intimidating

SilverAvocado profile image
SilverAvocado in reply to Angel_of_the_North

That's what I think based on my anecdotal experience. Whenever I meet someone who tells me they're not well, I try to tell them about T3, or interpreting their own blood tests. But most would rather just struggle along. There's a huge stigma about complaining!

LAHs profile image
LAHs in reply to SilverAvocado

Yes, I hear a lot who say, "Oh, I'm letting my doctor sort all that out!" And yet they are feeling ill. I think that is an American thing to put a lot of faith in so called experts. This time of year they are "...letting their tax accountants take care of all that" - I still do mine on paper with a pencil, the only time I conformed and went to a tax accountant I got audited! But I digress. You have to research and get to know your own hormone balances, no one person knows you like you know yourself. As soon as you feel ill, get a blood test and change whatever is out of whack, a doctor doesn't have the time to look after you to that extent.

SilverAvocado profile image
SilverAvocado in reply to LAHs

It definitely happens in the UK, too! I've even heard people say you should never look your illness up online because you'll just scare yourself! Amazing! So these people may not even kno how to spell their condition!

Fruitandnutcase profile image
Fruitandnutcase

What I find puzzling and depressing is that GPs in spite of campaigns telling them not to and patients being told not to expect their doctor to - are still prescribing antibiotics for patients with viruses which leads to antibiotic resistance which in the end could well kill us all off. I gather they do it because they are ‘bullied’ into doing it by their patients.

How come they will do that when they will not under any circumstances allow thyroid patients to ‘bully’ them into trials of thyroxine or whatever which do not endanger the general population?

I can’t figure out how it’s ok to prescribe badly for one section of their patient base but not for (in their opinion) another. I still can’t believe that they are prescribing antibiotics at the rate they seem to be.

SilverAvocado profile image
SilverAvocado in reply to Fruitandnutcase

Hehe, that is a funny example. When I was working I read a few research papers in linguistic / discourse analysis about this issue. Doctors reported being bullied into prescribing antibiotics. But when the appointments were recorded and analysed, they showed that sometimes the patient didn't even ask for antibiotics!

I think the idea patients bully for antibiotics might be one of those myths doctors believe, and therefore they feel bullied immediately, before anything has happened. It was suggested maybe the doctors were responding to body language, and their own stereotypes that certain types of patients would insist on the prescription, which gave them the experience of 'bullying'.

lady_eve profile image
lady_eve in reply to Fruitandnutcase

Exactly the question raised in my mind during the latest news report on the over-prescribing of antibiotics. Who are these doctors who yield meekly to their patients' demands, and why can't I find one to treat my thyroid condition?

shaws profile image
shawsAdministrator

Thanks diogenes and there's a lot of sense in your comment and I think if doctors want to follow a certain road they should be trained to be fully aware of clinical symptoms and, as we know, there are plenty but they rarely know one. If we complain we are looked upon as a troublemaker when all we want is an answer and medication to relieve symptoms.

Another fault lies in how Big Pharma promotes levo as 'perfect' and if someone has a good Endo they may well but we've had so many members dismissed out of hand by Endos who tell hem their symptoms are not due to hypo but prescribe an anti-d instead, or pain relief or patient is told their symptoms are nothing to do with hypo. Also to make someone wait until their TSH is 10 is absolutely ridiculous before diagnosing them as hypo when in other countries we are prescribed if TSH goes above 3.

Another thing is that many come across to their patients as arrogant and full of themselves and many poor souls are told there is nothing wrong with them and who were relying upon this doctor relieving their pain and who were very dependent upon this consultation helping them to get better.

UrsaP profile image
UrsaP

diogenes Isn't much of the problem in the training, or rather lack of it? The more knowledge coming out about the thyroid system and how it work the more it seems to be ignored? There is a disgraceful lack of basic understanding of how the thyroid system works. Not to mention more specialist understanding. From the specialists I have seen there has been little between them and the GP.

Training seems to focus heavily on diabetes, and very little on thyroid, as it is, as you say, seen as a simplistic condition with a simplistic response, i.e. the dogmatic promotion of T4 only, if TSH 10+. Any surplus 'symptoms' can all too easily be deemed to be psychosomatic. The stereotypical hormonal female presents!

It seems to me that Drs are deliberately being taught less today than perhaps in years gone by, as many younger doctors have little or no knowledge of anything other than TSH and T4. As if that is all they need to know. It could be down to them lacking interest in the subject, or being scared of such a complex issue, especially when there are so many in disagreement over it. So they turn their focus to something more manageable, i.e. diabetes.

Agree shaws big pharma have promoted levo as 'perfect' yet wasn't there an issue with T4 in 2012/13, where the MHRA withdrew it, yet it seems to be T3 that is painted as the unstable and ineffective drug? Didn't T4 lose it's grandfather status at one point, yet NDT was the medication made out to be suspect? Parallels?

I also wonder how many of these arrogant and self righteous endo's are covering their inadequacies by demeaning the knowledge of their patients and belittling them and bullying them to accept their decisions. Because they actually do not know what to do and are too arrogant to admit it and find out. One endo only Oct, last year, said he did not know what NDT was, nor Rt3? Yet theses people are making decisions about our lives. They are playing 'God'. What gives them the right? A few letters after their name?

Perhaps one day, diogenes this madness will stop and we will see some of your work, and that of others, who seem better placed to make decisions, will be guiding us in the right direction. I live in hope!

Clutter profile image
Clutter in reply to UrsaP

UrsaP,

UK doctors aren't taught about alternatives to Levothyroxine or about rT3 in med school so why should they know about them? No reason why an endo should understand the acronym NDT or what natural dessicate thyroid is either. If the patient had said Armour or Erfa the endo probably would have heard of it even if s/he didn't understand precisely what they are and do.

UrsaP profile image
UrsaP in reply to Clutter

Clutter I get where you are coming from but isn't NDT the basic history of thyroid treatment. How can any of us trust an Endo who has never heard of it? It shows a lack of interest in the subject they are suppose to be specialising in? And whereas I could possibly excuse the GP for not knowing, as you say they are not trained, I could not forgive someone who claims to be a specialist.

Hillwoman profile image
Hillwoman in reply to UrsaP

I completely agree UrsaP . A consultant endocrinologist should know the subject inside out.

Clutter profile image
Clutter in reply to UrsaP

UrsaP,

My point is that the acronym NDT may not be understood. Dessicated thyroid treatment or Armour might.

Levothyroxine has been the preferred medical treatment for hypothyroidism since the 70s so why would the curriculum include information about older therapies which have been superseded?

UrsaP profile image
UrsaP in reply to Clutter

Yes I appreciate what you are saying Clutter I just feel, in my own opinion, that, as a specialist, they should know the acronym NDT as it is widely used today. I would imagine that any specialist should know about how their chosen specialist area of treatment has developed and why. As a specialist one would hope they have an interest in the subject and how it is developing too. Especially scientists, as they know that science is only as accurate as the information they have today and they should be continuing to question what they already know. Any professional should really. I often wonder how any developments in medicine come about when it seems all to often to be in the hands of closed minds.

Justiina profile image
Justiina in reply to UrsaP

Like over here in Finland the lack of training seems to be THE thing. Doctors are told levo is the cure for hypo and that's it. Doctors do not study on their own time. Those who do eventually understand thyroid function.

Over here endos call for example T3 as doping and whatever benefit patient has ,is doping effect. They also blame patients wanting more medication to lose weight which itself proves they have no clue as anyone overmedicated have said that no one wants to stay over medicated. NO ONE. I don't know, but I believe those who have been over medicated or are hyper. They say it's awful! Yet endos think patients want that. To me it proves how little they know or understand.

On the other hand endos admit in the same sentence that for example combination treatment would help some ,but it's too much trouble for doctors do start combo.

So its doping, but could help, but it's too much trouble? What it is then? Good or bad? Can't you decide?

If endos who are supposed to be specialists are that clueless they can't even decide what they think ,what hope do we have?

If combo /NDT/T3 would help some but it's too much trouble for a doctor to monitor then I may ask what for are these doctors paid for? Isn't it their JOB to monitor treatment? Maybe endos should hand over thyroid treatment to other doctors.

LAHs profile image
LAHs in reply to Justiina

Yes, intelligent, frequent measuring of results (via blood tests) after dose changes is the key to getting to the optimal dose of thyroid meds. My first GP was not a specialist in thyroid but he was more intelligent than my Endo and he allowed me to fiddle around with my dose frequently and he was willing and interested in the change in my blood test results. He was genuinely interested in the whole phenomenon and took it as an opportunity to learn. He was thankful and enthusiastic that I drove this experimentation. My current Endo, on the other hand, is different. He is a brilliant, knowledgeable medic and I call him "not perfect" because he is terrified by my suppressed TSH! He does, however, know that I dose myself and he doesn't comment.

SilverAvocado profile image
SilverAvocado in reply to Justiina

I also find it interesting how many doctors make up their own elaborate stories about how thyroid treatment works. This doping thing is one. Some members have been told they're drug addicts! But I find depressing the times someone comes to the forum with a completely unique story we've never heard before. Often as an excuse for cutting the dosage in half, or something else ridiculous.

They'd rather make up a story than admit they don't know, or give patients what they ask for!

Justiina profile image
Justiina in reply to SilverAvocado

I would want to know how many of these endos here have tried T3 as they are so sure it's doping effect or feels like having a cup of coffee. Which again proves how little they understand. They seriously consider the short halftime of T3 equaling the effects of it. Which is far from truth. But I assume it's based on the individual reactions as some do better on splitted doses , one dose seems to wear off during the day for some. Which still does not mean the effects of T3 wouldn't last longer on cellular level.

But most nutrients and vitamins seem to be unfamiliar to endos who are supposed to be specialists. Ask them about iodine and you get no answer. How can you be a specialist of something if you do not truly understand what thyroid hormones are made of? Or how iron is involved? Or selenium or all key nutrients. They are still relevant even on thyroid meds. Sigh. I know you know this already, but I needed to rant :D

I find those unique stories sometimes very disgusting on top of depressing. Like for some chronic fatigue type of symptoms improve when they start exercising. Yay good for them. They were fatigued because of poor physical health. They didn't have CFS/ME/SEID in the first place, they were just out of shape. No wonder exercise work for them. But they go sharing their experiences on all forums without thinking it through.

helvella profile image
helvellaAdministratorThyroid UK in reply to Justiina

Justiina,

Routine testing of levothyroxine involves giving 600 microgram doses to healthy volunteers. (There must be a similar protocol for liothyronine.)

Perhaps all endocrinologists should be expected to have volunteered and undergone this before qualifying?

I strongly suspect that the proportion of endocrinologists who have personal experience of thyroid issues is absolutely tiny.

Justiina profile image
Justiina in reply to helvella

Or maybe doctors misuse T3. Of most drugs it would be easiest to boost up your performance just a bit. No fear to get caught in testing. For a healthy person w/o thyroid issue it would feel very different I assume.

Angel_of_the_North profile image
Angel_of_the_North in reply to SilverAvocado

So they don't like "doping", but are happy to issue repeat prescriptions ad nauseam (literally) for PPIs and opioid painkillers which are only supposed to be used for a short time. Does not compute!

SilverAvocado profile image
SilverAvocado in reply to Angel_of_the_North

Yes, very much so!

I suppose a curious question is why they are such sticklers for their cruel guidelines about thyroid hormones, but they don't follow the guidelines for prescribing medicines for a short time.

Justiina profile image
Justiina in reply to Angel_of_the_North

Yeah its ridiculous. But if you are dying (at least over here )you are not getting any strong drugs to relief pain, because you can get addicted! !! Who cares if you are about to die tomorrow... It is beyond ridiculous, can't even die with dignity, you must suffer until the bitter end as long as you were not addicted to drugs.

Angel_of_the_North profile image
Angel_of_the_North in reply to Justiina

However, if you are elderly and have cancer, they'll force to have morphine, which can make you die more quickly

Justiina profile image
Justiina in reply to Angel_of_the_North

Not over here :D you are kept alive no matter how ill you are. Finnish mentality seems to differ from most as we have this thing called "sisu" which cannot even be translated. But basically it refers to toughness we have so it applies to death as well. You must suffer. Only that counts. You are ungrateful piece of s*** if u dare to even ask any pain relief in a moment of unbearable pain. No that is absolutely impossible idea to give morphine to dying person as you WILL get addicted to drugs in your last moments and that cannot be tolerated. You just must die correctly.

That's how stupid we are :P

Angel_of_the_North profile image
Angel_of_the_North in reply to Justiina

Here you get morphine but very little food or only water when you ask for it, so you die as fast as possible.

UrsaP profile image
UrsaP in reply to Justiina

Justiina When I started on a small amount of t3 along with t4, it did improve my health to a degree, but not optimal by any stretch. I did lose 1 stone, without changing anything else. But whilst I had more weight to lose and still had symptoms, that was all that came off. After a few years later and not improving further instead going downhill again fast, and after seeing a psychologist, I saw Dr P and ended up on T3 only. I did not lose any weight being on t3 only. I did lose many more hypo symptoms. I did not have hyper symptoms.

I did lose 4 st in 11 months about four years ago, but with help from a club, and, I certainly felt, that it was easy because my medication was, and had been balanced for a few years, hence my adrenals were being supported and my metabolism was able to cope.

There is so much not understood about thyroid conditions, Many Endo's are diabetes trained and less so in thyroid. Some certainly seem to be no more 'expert' that the GP's who are taught to test TSH and issue T4 only. Is their blinkered and closed minded attitude them hiding from their inefficiency and fear of being caught lacking? How can such scientific minds be so closed?

Justiina profile image
Justiina in reply to UrsaP

Like your experience, it took time to heal. Most endos/doctors seem to think you should improve asap or otherwise the effect is placebo! Why that doesn't add up to other drugs ? Ad's you get full range and they convince you to believe it takes time.

And yes how come they never seem to connect poor health to wrong meds or wrong type of approach. It seems impossible to admit or to understand that maybe it's not patient that is hypochondriac crazy fat ass idiot, maybe it's inefficient medication.

UrsaP profile image
UrsaP in reply to Justiina

How very true Justiina . Hide their own ignorance by blaming the patient. I noticed on Vanderpump's site that he is denying adrenal fatigue. He obviously has never experienced it! Again, just because 'they' the so called experts, do not understand why something happens, they deny it can exist. When they should be calling for research, instead they band together to stick their heads in the sand. V'pump seems to be saying that adrenal failure can only be diagnosed by the SST. That the Saliva test in invalid! And I believe he is also saying that using supplements can lead to adrenal failure? This dismissal or poor adrenal health is only going to impact further on the ability of thyroid patients to get the treatment they need.

As my son said many months ago - population control! Save NHS money, and less strain on the pension pot! Two birds with one stone!

crimple profile image
crimple

Thanks Diogenes for your thoughts and everyone else that has posted. I still come back to my mantra if a healthy thyroid produces T4 and T3 why do they think that all we need is T4 only.

The ignorance around low vitamin levels may be excusable but their total lack of interpretation of bloods results, as we have seen on here year after year coming back below range but no effort made to treat the patient is" professional" (really strange to use that word) negligence that is unforgiveable.

I am surprised we do not see more of them with ear plugs in as they seem totally unwilling to listen and possibly learn from their patients.

SlowDragon profile image
SlowDragonAdministrator

Most medicine is still profoundly misogynistic, endocrinology seems particularly so.

Comments such as by the infamous endocrinologist from Sheffield, obviously don't help.

The vast majority of patients are female, the vast majority of consultants male. The very few female consultants often seem a lot more aware of the current inadequacy of treatment. But they rarely stay in a department, swimming against the tide.

How often do we hear on here, a female endocrinologist starts a patient on T3, only for it to be stopped by a male endocrinologist.

Or patients with clear hypothyroid blood test results sent out of GP surgery with packet of antidepressants and a pat on the head

When vitamins are dire in Hashimoto's, patients are labelled repeatedly as "anxiety disorders" or "hypochondria" or similar, by endocrinologists, not qualified in anyway to diagnose a mental illness. They often seem complete unable to read plain simple blood test results.

avivaromm.com/hypothyroidis...

humanbean profile image
humanbean in reply to SlowDragon

When vitamins are dire in Hashimoto's, patients are labelled repeatedly as "anxiety disorders" or "hypochondria" or similar, by endocrinologists, not qualified in anyway to diagnose a mental illness. They often seem complete unable to read plain simple blood test results.

I don't actually have Hashi's - or have never had a positive antibody result anyway. And yet I discovered that when I optimised my basic nutrients under my own steam a lot of my anxiety and depression disappeared, which I find ironic, given how happy doctors are to ignore low nutrients and prescribe anti-depressants.

UrsaP profile image
UrsaP in reply to SlowDragon

Yes, SlowDragon , it is hiding from their own inadequacies, lack of real knowledge and interest, and flexing their male dominance muscles! Diabetes is much easier to understand. I wonder at the % of Endo's who are thyroid focused as opposed to diabetes focused. Low I'd bet! It is a blinkered arrogance from a profession that is supposed to be forward thinking and open minded.

Can you imagine heart specialist saying, 'oh your heart is failing, but it is not bad enough to treat yet, come back when you are having heart attacks'? Have specialist learnt all there is to learn? Is that what they think?

loueldhen profile image
loueldhen

Looking at my ccg’s advice on liothyronine which puts a blanket ban on even endo prescription I have tried to trace back what qualifications the policy setters had. I think they are, like most endo departments, diabetes specialists. To me this shows the total reliance on BTA and NICE guidelines (ccg advice was set before BTA issued its Dec 2016 rider on T3) and how important it is to at least have the right people influencing these. Problem is - are there any thyroid specialists out there at all?

SilverAvocado profile image
SilverAvocado in reply to loueldhen

It's mindblowing to me that there are so few thyroid specialists around, when Levothyroxine is the most prescribed medicine in the UK!

My Endo cheerfully told me a while ago that there are no thyroid specialists in our area, merseyside. This was after talking a bit about how I haven't improved until I started trying NDT, and again asking if there were ANY investigations I could have. I was shocked that was true, but even more shocked she would admit it, and in such a bland way.

loueldhen profile image
loueldhen

My guess at the split of patient treatments is 80% only levo, 15% combined levo/lio, 5% only lio?

Katepots profile image
Katepots

I get what you are saying but this completely goes back to training at med school, or lack of and asks the question yet again, why is there not in depth training on the thyroid and endocrine system when it is such a complex matter?

To be well I have had no choice other than to study thyroid/endocrine system and self medicate. I have learnt so much surely endocrinologist should do this too?!

My GP thought T4 was active and T3 inactive and had never even heard of RT3 😳 Endo wasn’t much better, he even asked me what K2 was...

I the two weeks training on thyroid just what are they learning??

There is no excuse for a Dr or Endo to be so ignorant. It is quite unbelievable.

Angel_of_the_North profile image
Angel_of_the_North in reply to Katepots

I thought it was one afternoon on the endocrine system - certainly seems like it. I'd have learned an awful lot more in 2 weeks

SlowDragon profile image
SlowDragonAdministrator in reply to Katepots

Especially as Levothyroxine is the most prescribed medication by far

Michael Moseley on "Trust me I am a Doctor" said when he introduced the article on thyroid, that the program gets more letters and emails about thyroid issues, than ALL other topics combined

Having just watched Broken Brain, this is a problem that is going to get worse, with widespread vitamin D deficiency, environmental pollution and over processed, nutrient poor diets increasing numbers of thyroid patients at alarming rates

helvella profile image
helvellaAdministratorThyroid UK

I get a distinct impression that learning about a disorder, pretty much any disorder, there is a tendency to look at the available treatments. That is, in the case of thyroid, very simply "How much levothyroxine?". They are not trying to understand the disorder, certainly not looking at non-standard treatments.

In terms of a non-specialist like a GP, this approach might be just about the only way to handle so many disorders. Headache? Paracetamol or ibuprofen or aspirin? Hay fever? Loratadine or chlorphenamine?

Katepots profile image
Katepots in reply to helvella

My friend is a GP and she says that they are given the basics but are meant to go away and continue learning/studying, clearly this is something most don’t do. My current GP looks up everything on Wikipedia??!!

Well we can all do that. I’ve stopped going, I can diagnose myself far better. Shame we can’t get access to most meds we’d all be a lot better off. Although I tend to try the herbal approach first with most things as most meds given are just profit for pharmaceutical companies anyway ie which offer more money/incentives to the practice and not which may actually make us better more quickly.

Look at statins...

helvella profile image
helvellaAdministratorThyroid UK in reply to Katepots

Katepots,

We've been sold a pup on this. If a GP only knows the basics, but is allowed to handle real cases, there is something very, very wrong.

I can to some extent understand why access to medicines is restricted. (But how many people in countries where, for example, T4 and T3 are freely available end up worse off than we are?) From a purely personal point of view, I'd be very happy to buy my own levothyroxine and avoid all the issues of getting prescriptions written, etc. I'd probably go and stock up every six months.

Thankfully, a lot of Wikipedia medical articles are better than might have been expected. A few real doctors do actually put a lot of effort in.

Don't miss the gigantic profits made by the supplements industry - and ask how many of the supplements companies are at least partly own by the pharmaceutical giants, and use the same facilities?

Look at statins... - I'm suffering already! :-)

SlowDragon profile image
SlowDragonAdministrator in reply to helvella

If you're hypothyroid then statins not advised, certainly until you absolutely, definitely are correctly treated.

nhs.uk/conditions/statins/c...

Gcart profile image
Gcart

Very simple thoughts on my part, but is there any organ or gland in the body that is removed via operation and then medicated with a synthetic tablet or hormone successfully ???Surely the thyroid gland is just as important s the kidneys the liver to name but two.

If that is correct and no parts removed without transplantation , why would anyone think the body would be OK and operate good enough for quality of life without a thyroid or a faulty one ?

How naive is that to think health can be acceptable as a result.

Hillwoman profile image
Hillwoman in reply to Gcart

Lymph glands and the spleen are often removed in cancer treatment. The consequences for the patient can be severe, and in the case of lymphoedema, also very obvious. We thyroidies tend just to look old before our time.

This reminds me of the occasion I reported a growing mole on my arm. The alacrity with which the worst GP in the local practice responded left me stunned. But then, a dodgy mole was something he could see. (Mole was benign.)

SilverAvocado profile image
SilverAvocado in reply to Hillwoman

Yes, I think they're all responding to their Flow Diagrams. Some conditions create interest, and other conditions just get ignored and a hostile response.

I've tried to figure out what the difference is between the two categories. There's definitely a distinction between acute and chronic condition. They love an acute situation that can be addressed with surgery or some other dramatic treatment.

Chronic conditions in comparison are hated. Which I find very counter intuitive. It's the long term sick people who really need the treatment and investigation.

But also medicine has already failed someone who is long term sick. Whereas we all know a broken leg can easily get sorted out, and in 6 months that person will be as well a they were before it happened.

Hillwoman profile image
Hillwoman in reply to SilverAvocado

I think you've hit the nail on the head there, SilverAvocado .

SilverAvocado profile image
SilverAvocado in reply to Hillwoman

Thanks :)

SilverAvocado profile image
SilverAvocado in reply to Gcart

There was an interesting post a few weeks back with an extract of Japanese treatment guidelines for thyroid cancer. They were very concerned with preserving the thyroid, and surgery was the last resort.

In the UK they think nothing about removing or destroying our thyroids! It seems a very ignorant approach. And also rests on the assumption that thyroid replacement is just as good as your own natural supply. The Japanese system acknowledged that a healthy thyroid is better than tablets!

diogenes profile image
diogenesRemembering in reply to SilverAvocado

There is a good reason for trying to keep some active thyroid rather than taking it all out. A paper we've submitted shows that, as the thyroid deteriorates, this promotes the body to convert a higher proportion of T4 to T3 to counteract the overall loss of hormone production (T4 mainly) by the gland. Therefore the body tries to use the dwindling source of T4 to maintain FT3 as long as it can. This can go on for a long time until say only about 10% of the active gland is left. Any lower, and the system collapses suddenly and more therapy is now needed (T4) to counteract the collapse. The lesson therefore is to keep as much thyroid residue as one can to avoid having so much external therapy and to keep some control over the whole process by what is left of the active gland.

SilverAvocado profile image
SilverAvocado in reply to diogenes

Thanks Diogenes! I'm glad to hear the message is slowly seeping into the Western conversation.

Too late for my poor little thyroid, but hearing the full story is also emotionally useful, because it helps me work through that I've got something to mourn.

Katepots profile image
Katepots in reply to Gcart

Soooo important as keeps all those other organs working properly as all cells of our body need T3!

Gcart profile image
Gcart

My Mum has a crusty looking growth on the back of her leg, GP said it would drop off, We believed him until it took a 8 inch cut to remove ☹️Malignant !

Clarrisa profile image
Clarrisa

One thing not mentioned in the comparison of doctor's diabetic care verses thyroid care is the A1C blood test enables doctors to monitor the diabetic's treatment compliance for the past three months. Additionally, when a diabetic feels poor they can pull out their glucometer & "test don't guess" on the spot. The diabetic may have more timely hard data to support their case.

SilverAvocado profile image
SilverAvocado in reply to Clarrisa

Occasionally people on the forum fantasise about a similar system for thyroid hormone, so we can monitor the hormone supply all day and medicate as needed.

Clarrisa profile image
Clarrisa

I accompanied my companion, a diabetic to many of his appointments to his doctor's & an endocrinologist. All I can say is if know more about diabetics (given his outcome), Lord help us!

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