Thyroid UK
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GP visit for Thyroxine prescription renewal

Recently had to go for a GP visit to have my prescriptions renewed and I take Thyroxine 150 mcg. I have to have a suppressed TSH because I'm one of those who needs to have adequate amounts for a decent T4 result which is never too high in blood test results and only in the middle of the scale with this dosage.

This new GP I saw was unfamiliar with my situation and gave me the usual drilling about a suppressed TSH level. Mine is usually .05, but this time I didn't ask her for my blood test results because I was too defensive and assertive trying to explain to her the history of what happens to me when my dosage has been reduced as it was by the GP's about 4 years ago. It took forever to get back to my normal self and I'll never go through that again.

So, at the end of this ordeal, she asked if it would be alright with me if she consulted an endocrinologist about my case. I refused this because as I explained, there is very little that can be done, regardless of what his input is because I'm not going to be experimented on again by any other experts when what I take already is what I need to feel good and healthy.

So.... here is my issue: At the end of all this I thought to myself... funny.. all of these GP's look at a blood test result, give you a hard time about what you need and can't do without and not one time do they ever do a reflex test or ask for you to hold out your arm and hand to see what type of shaking you may have, check your heart beat or even feel for an enlarged gland. Never once have I seen the GP's do what I used to be used to them doing regularly in the States where I never had this kind of trouble about getting an adequate amount of Synthroid which is what is normally prescribed over there.

What is it with the GP's here, that they no longer seem to feel that these physical tests or examinations are necessary, yet they grill you over the coals to get your prescription renewed that you have been taking without issues for years?

Any ideas or insights would be welcome.

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Well I’ll just quote from this article by Toft, the man was President of the College of Physicians in Edinburgh and also Physician to the Queen in Scotland.

“The impression is that young physicians have ceased to think, ceased to challenge received wisdom and ceased to recognise that patients come to the consultation as individuals, expecting to benefit from the opinion of an open-minded and experienced professional.

Simply because no two patients present in the same manner, guidelines, by their very nature, are the antithesis of the art of medicine. We cannot afford to underestimate the level of frustration among patients, exasperated by the ‘one solution fits all’ philosophy. It was put to me recently by a patient that, if governments wished to save money from their healthcare budgets, they should invest in flocks of African grey parrots, as these repetitive mimics could easily replace the current breed of doctor in the consulting room. She had a point.”

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

What was supposed to simply be guidelines for doctors is instead used as the end all for diagnosis and treatment today.

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But why were they never taught to physically examine a patient and only look at tsh levels as the barometer? What ever happened to reflex tests and physical examinations? I'm just glad I made sure that the woman doing my blood test earlier gave me a blood pressure test, so at least I have that on my record to show good blood pressure.. otherwise I doubt that would have been taken by the GP or part of my record as well.

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Dr Skinner and Dr Peatfield - both persecuted - for doing as they were taught as medical students. i.e. look at the patient - look for the physical signs and prescribe on a trial NDT.

Big Pharma has to get something back for paying doctors for prescribing levothyroxine (in the USA first I believe) which Dr Lowe stated was corrupt plus how many hypo people are given 'other prescriptions' for the symptom rather than another option which might suit them better. Nowadays there's no chance of an option - but you will get an anti-depressant or something else instead and maybe diagnosed as a 'mental health' problem. It might well be if we don't have sufficient T3 circulating as both brain and heart need the most.

Dr Skinner said we were all in a Parlous Situation due to the guidelines (really cannot be called 'guide lines') because we would have no need for this forum at all. Thousands and thousands suffering and some, as we know, have committed suicide or thought about it because doctor and/or endocrinologists tell them it is nothing to do with hypothyroidism and only look at numbers on a piece of paper. Don't touch patients i.e. are the too cool, slow pulse/temp etc.

Because the Pharma companes have increased the cost of liothyronine - it has been withdrawn - not our fault surely. No longer prescribed the very original, safe and helpful NDTs (used to be) but the BTA et al made False Statements to enable them to withdraw this very important thyroid replacement needed by many, many people. We also know of a suicide or feeling suicidal. I think because not sufficient T3 is circulating.

Dr Lowe wrote to the BTA and RCoP and requested over three years for a response. These were ignored so they couldn't possibly give a truthful answer. They do not listen to their patients and some of the doctors have not been a caring, sympathetic professional, concerned about relieve disabling symptoms of their patients. If they did, some lost their licences and the tried their hardest to remove Doctor Skinner's. He was far above all of those who decided that blood tests were accurate for diagnosing and prescribing and willing to prescribe other prescriptions for the remaining symptoms.

A survey should be done to see what other serious illnesses have developed amongst hypothyroid patients.

From Dr Skinner:-

I shall put up a new post re Dr S.

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Doctors are no longer taught any of the clinical signs of disease

Its all tests test test results ...they are automitans and incapable of understanding the processes in the body or that everyone is different

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But well-trained here (US) to use all the new expensive machines that 'help' diagnose patients. I'm only a nurse but even I can tell a lot just by looking at someone. Just look at puffy eyes, ankles, observe demeanor, etc. It's not that difficult. (Maybe we could start our own online skype clinic!!!)

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Sadly many hypo patients do not display many of those symptoms and training to spot them simply does not exist these days

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Very true tho even when some symptoms of disease are obvious they are often ignored or just missed. We can't see what we are not interested in finding.😥

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A physio told me that one of the best tests is to pinch the flesh on lower arm just below elbow and if it springs back to normal hypo is unlikely but if it retains a mark its hypo

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Thanks. I didn't know. Just did the test. Certainly applies to me. Reminds me of something doctors did years ago as part of a physical. This was before fancy tests and machines. They would look at the patient's fingernails. Nails tell a lot about our health. Basic knowledge back then was clubbed nails were an early indicator of possible cardiac problems and were often the reason for further testing.

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Worrying .... for sure.

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Most doctors are useless! They spend more time looking at the computer than paying attention to the patient. I had too keep repeating myself to get mine to listen that I was feeling exhausted all the time, joint aches etc. Hmm was the reply I'll do a blood test..😖

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If I hadn't fought so hard for my well being here with the GP's I would be a mess. Here is what they tried to do with me over the years:

One tried to take my Folic Acid away. I have to take 5mg a day because I have Thalassemia B Minor and the GP and the consultant hematologist she used in my case didn't know that this is standard treatment for what I have.

One tried to put me on statins after they had lowered my thyroxine to such disastrous levels. Once I fought for adequate thyroxine and started back to the dosage I needed the blood cholesterol went back to normal levels.

One GP kept telling me I was depressed and suggested antidepressants and I tried to explain it had nothing to do with depression and everything to do with inadequate Thyroxine. Of course I'm not depressed, just frightened, stressed, exhausted and furious at having to be their "experiment".

I'm still trying to get my teeth problems sorted out because during this time I was grinding and clenching my teeth in my sleep. Once on adequate dosage this went away.. but I still face the cost of re-root canals and root canal treatment for what happened to my molars during this time.

Unbelievable.. and years lost fighting to feel normal due to their tendency to screw up what isn't broken and fix it with medicine that will really mess you up if prescribed under this kind of circumstance and especially someone with Thalassemia B minor.

Oh and I forgot to mention, the female GP who wanted to take my Folic Acid away, suggested that I be given Iron injections. Where in the hell did they get the training that missed giving them the history of how many Thalassemia B patients were killed by iron injections because we don't metabolize iron in the way normal blood does and it builds up in the liver and ended up killing a lot of people until they understood this better. How did they miss this in their training?

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😱 So sorry for your distress, never heard of before and I can fully understand your anxiety. All we want is to be treated like 'human beings' not just a patient number. Doctors nowadays are more concerned about money savings rather than patients feelings and needs are met.

Thanks for your reply, I hope you get the treatment you deserve.

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My sister said some nurses got their licenses in cracker jack boxes (there used to be a little toy in each box). I guess some doctors were given similar boxes!!! Seriously, I don't believe they would allow their families to be so mismanaged for so many years.

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This is very frightening because the possibility is always there we will not be able to speak for ourselves and be sure we are not being harmed in an emergency situation. I have seriously considered having "PACEMAKER" tattooed just above my incision ( am not a tattoo person) after an ER doctor ordered an MRI for a problem (a CT scan was just as effective). Fortunately I was aware, heard the verbal order and reminded him my pacemaker was not MRI compatible. And this was in the hospital I always go to for care and ALL my medical records are in their computer available to any doctor who cares to check. Also, wallet cards, bracelets, etc are good to have but my thinking about the tattoo is in an emergency situation the first thing they will do is stick EKG leads on my chest. Anyone would have to be blind to miss the tattoo!

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It's not funny but I have to smile because the PCP I just 'dumped' never faced me during visits, just sat sideways typing in her computer as I talked. She didn't even type that well because every so often I would have to stop what I was saying so she could catch up on her computer. I could interview a patient looking them in the eye and then later back in the nursing station write my notes. I figure if someone can get through medical school they ought to be able to remember what the patient talked about and transcribe it later! duh !

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I showed clear signs of hypothyroidism from childhood, but I couldn't get a diagnosis until I was around 22 years of age, when I was put on a "standard dose" of 150 mcg of levothyroxine and not informed of any other treatment options.

Another couple of decades passed before I discovered and arranged to see Dr Peatfield, after doing a bit of online investigation into this and other conditions. I was astonished by the reflex test and the careful examination of my thyroid gland, and my skin, hair and nails, my stiff joints, my ears (was very deaf in right ear), my balance, blood pressure while sitting and after rising from my chair, the careful and detailed recording and discussion of my entire medical history... You get the picture. At the end of it all, I was charged about a third of the price other UK consultants charge for a similar length private appointment.

Dr Peatfield's generation was properly trained in clinical examination, but the ones who are still working are all now in their eighties... Things began to go very wrong for UK thyroid patients around the early to mid 1960s.

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So sad to read - but oh so true. I recently read why GP's became god like ! After/during the war when Anti-biotics were introduced - some dreadful conditions were cured and everyone stood back in amazement. Big Pharma saw this as a huge opportunity - people trusted their Docs - so lets pile in with more and more pills and potions whilst the good times last. Still we hear of elderly patients carrying bags and bags of repeat prescriptions from pharmacies and not finding wellness.

Thank goodness we have the internet and can learn from each other too.

Back in 2005 - my Greek Endo thought I had been born Hypo - diagnosed at 59 :-)

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Marz, it's so interesting you mention the role of antibiotics. I gathered from my grandparents that before the war doctors were well-respected members of the community, but they didn't have the status (or the income!) they enjoy now. Probably the advent of the NHS helped change this too. If more people can use the services of medics, especially when they don't pay for them upfront, perhaps their services come to be seen as essential in all circumstances of sickness, not just the most serious.

A little family anecdote about the advent of antibiotics... In 1942-3, my maternal grandmother was one of the first British civilians to receive penicillin. She developed appendicitis (something of a family curse) which led to peritonitis. She was admitted to a local nursing home - private, of course - made comfortable with morphine, and basically left to die. Her sister-in-law, my great aunt, raised merry hell with the duty doctor, pointing out that her own brother (my grandfather) was fighting for the country in north Africa, and how would he like to come home to find his wife dead of neglect, and his children left without a mother?! It worked... The penicillin was obtained through contacts - I still don't know the details - and my grandmother survived to live a very long and healthy life.

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Great family story. My brother had M&B I believe for his first attack of meningitis which he survived. It had just been invented at that time. He did not survive the second attack 3 days after his 9th birthday .... I was only 16 months old .... so that would have been 1948 so they would not have had to pay ...

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So very sad that you never knew your brother, and that he survived the one infection only to get it a second time.

My paternal grandfather died of meningitis at the beginning of the war, so no treatment at all then, and he was gone in three days...

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... that too is so very sad. Now we know about Hashimotos Encephalitis - which has me wondering too ....

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:-O Hadn't thought of that! Back then, I believe several different conditions with similar symptoms were just given a general label of 'brain fever'.

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This is an aspect of the struggles for British citizens after the war that I have never heard about before. This is a tragic situation on the heels of a tragic situation. I'm very sorry for all that your parents and grandparents went through to get to this point now. A lot to keep fighting for has been hard won and still needs to be.

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Really hope you have answers soon and the treatment you deserve. Apologies for hi-jacking your thread ....

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A pleasure to have you post under here. Thanks for all you have added.

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My paternal grandfather died of peritonitis. But that must have been in about 1929. So, before penicillin, I believe.

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We have never been so lucky in the human race to be alive in these days and the future. I think about young people now and imagine their lifespans will be easily 150 yrs or more. We are blessed to be alive in these times actually.

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Not sure I want to live to 150, actually. But very unlikely that I will!

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Yes, I think so. I was told the doctor who attended my grandmother pulled strings to get a supply from whichever part of the army was stationed nearby. Officially, only the military had access to it in WW2.

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When I was a child our GP regularly did physical examinations. In fact, most visits had some kind of physical examination included in them. In latter years - nothing. Until I saw Dr Peatfield and he behaved just like an old-fashioned doctor and put me so much at ease I didn't want to leave.

Whenever you see a post on the Internet about thyroid , chances are there's a picture of a doctor examining a patient's throat. Chance would be a fine thing!

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Indeed!

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I have read a few times of patients seeing endocrinologists in the UK and being told, with no embarrassment or shame from the doctors... "We don't care about symptoms, only blood tests."

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Unbelievable... don't even want to think about the arrogance of this.. But then again, a lot of GP's have probably encountered so many people with symptoms that make them shake their heads about humanity.. I'm trying to give some the benefit of being shaken in their boots meeting up with some patients who blame "radio waves and wifi" etc.. for their problems.

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I dislike doctors of all kinds so much I'd probably blame them if the world was invaded by aliens. ;)

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Don't mention the aliens to GP's ... LOL...

Imagine the pills they would give you to swallow then :) !!

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Are GP's allowed to have a sense of humour? Just wondering... ;)

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Nope just a stick up their bumholes 💉.... gives them that extra arrogance 😉

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On the odd occasion, I have made the mistake of making a joke in the presence of a doctor - and not just in the surgery, either, I have met some socially. The results were always a glassy stare, whilst they tried to work out if I was serious. I don't think I've ever heard a doctor laugh.

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You know I'm thinking about that and I've got some clients who are Dr's and they do seem to be very inclined towards seriousness and deportment. But female Dr's except for a very special few are pretty scary in a much more serious way I think as well.

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If truth be told, I do carry a kind of white god complex for really wonderful Dr's and an opposite regard for those Dr's I can't put trust or confidence in due to their lack of a kind of integrity and caring.

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I haven't had a lot of experience with female doctors. But I did have one female gynae that scared the life out of me, just looking at her! She was youngish, and attractive, but so stern. A glare from her could turn you to stone! She wanted me to join Weight Watchers (undiagnosed hypo flab!) because she went to them (god knows why because there was nothing of her) and told me this horrible story about how she'd eaten so many French beans, because they don't count, that she was very sick. I just stared at her in horror. a) I didn't want to know that. b) just looking at French beans makes me want to vomit. I couldn't get out of there fast enough!

Even worse, when I was in hospital for my hysterectomy, it turned out she was the one operating on me. She came to see me and tried to be nice. That was really, really scary! lol

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Never trust a surgeon who eats french beans before taking out your uterus. (I'm enjoying this thread but am getting sillier by the minute! LOL)

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lol I never went back to her after the op. :(

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Perhaps they are taught to show no empathy at medical school?.

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Perhaps, I don't know. But I don't particularly want them to empathise, just show a little kindness and respect. It's the total lack of respect towards me, as a human being, that really, really makes me mad.

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No. If they have one they have to leave it at the door on admission to med school.

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We are 👽 to them with the symptoms we get...🚀

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The reason I say this is because I have some clients who say this to me because I work in IT. I can only imagine what their GP's go through. sigh.

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I have only been examined once by a gp with respect to thyroid and that was around the neck. Recently I saw the endo's registrar who did a few other physical tests, but not the reflex. How on earth did GP's manage to diagnose people in the days before numerous blood tests and polypharmacy. It is a rare treat for a doc to actually sit and listen rather than see them staring at computer screen whilst you repeat for the nth time your history and symptoms cos they can't find them on the system

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You fought a good battle. Unfortunately that's what we have to do at times. Hopefully she will come to see that you know what works for you. The anxiety I think we all have is-at least I do this-is when I find a good doc I ask God to please let him/her stay awhile! Breaking in a new one is ^&*%! Being your own advocate is your best weapon. I am in the States and even here, though insurance will cover our med costs there are still docs who are married to lab results. I just left my PCP who ignored my thyroid for 2 years and my Electrophysiologist helped me transfer to a much more open-minded doc. It's a never-ending battle sometimes, isn't it. Take care. irina

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Very interesting reading your comments as GP trainee in the UK. I’ve seen a lot ok doctors whose examination skills have deteriorated but, contrary to many of your experiences, they have tended to be older if anything.

I suppose we all have pur strengths and weaknesses. Surprised about the comments on humour though, have a great laugh at my surgery, sometimes with patients but have to judge their character first!

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Hi, not sure if you saw the message here from a day ago and you got notice of it. Just sending a reply in case you haven't seen the questions below.

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@gav5684

gav5684

Thank you very much for responding to this thread. If you don't mind, and if appropriate, could I take this opportunity to ask a few questions that you may be able to provide some insight about?

In all my years with GP's in the UK, I've had a struggle with getting adequate Thyroxine, especially with new GP's unfamiliar with my case due to the suppressed TSH reading. But never once have I ever had my reflexes checked or my thyroid gland felt or asked to suspend my hand to check for shaking etc? Why is that?

Are GP's taught about the various differences thyroid patients present with hypothyroidism? Are patients who need a suppressed TSH level from Thyroxine to get anything close to a decent T4 results discussed?

As mentioned here already by a poster, are most endocrinologists these days mainly more specialised with diabetes and pancreatic disorders than in the various complexities of thyroid disorders?

As a person with Thalassemia B minor, it is good practice in the US at various times for a Dr to physically feel around my spleen and this has never been done at any appointment I've ever had with a GP here.

Why would a GP and a hematologist not know about the standard treatment of my condition with folic acid and why would a GP suggest Iron with a person who has Thalassemia b minor? In my case my red blood cells have targets, are much smaller and they live half the length of time that is normal, this was explained to me by my hematologist in the states and he showed me this as well, what the targeted red cells look like. So why would a GP here never investigate this and instead suggest iron for anemia which I always have and have learned to live with?

And thank you for taking the time to respond if you feel you would like to. I have several clients who are GP's and it was their support and interest in explaining to me what was happening, that I had the forearmed knowledge to fight back with the GP at my surgery to get my required level of thyroxine back. I feel this saved my life, because I was almost handicapped with the reduced dosage I was put on. I was lost about how to resolve this situation without their help and the information I first learned through this forum.

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Maybe while in training, the field of medicine is so vast to cover it all, these are intricacies that are picked up along the way by Drs? And maybe there just isn't enough time allowed these days for GP's to give a complete examination?

I understand if my questions would be not appropriate for you to elaborate on and I didn't want to put you on the spot, but I am always curious, as we all are here, to learn as much as we can.

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If most GPs cannot handle most thyroid issues, then the system needs to change.

There has long been a tendency for multi-GP surgeries to point to one of their number as the one who has done some extra training, or otherwise is better-versed in one area. Indeed, looking at surgery websites they often say so-and-so has a special interest in a topic.

Perhaps this needs to be formalised? That every GP surgery needs a GP who has had extra training and is available to patients with thyroid issues? If a surgery does not have such a GP, then some sort of referral should be automatic.

(Of course, we get onto the question of how they will be trained. That is major question in its own right.)

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Yes, the thought of deferring to "one authority" frightens me even more than using the good reasoning and experience of several who maybe more invested in obtaining a better result from their earlier decisions.

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Hi there

Yes many GPs have a special interest. These have often been done to provide a service in the community that would otherwise be done in a hospital clinic, e.g. fitting contraceptive coils, joint injections, minor surgery etc.

It would be nice to have a GP with special interest in thyroid disease. But you could say that for every medical condition. However, it is not really the role of a GP to be a specialist, by definition they are generalists. This is an essential aspect of healthcare. If a patient has complex needs in one specific area e.g a thyroid problem which cannot be managed, they can be referred. However for many of the problems I see on this site that may not be that helpful as there seems to be a lack of consensus amongst endocrinologists on topics such as T3 replacements, NDT etc.

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It's unlikely gav5684 will see your response because it appears directly below, rather than in 'reply to' their comment. If you tag them by typing @, followed by the username, a menu will come up. Click on gav5684's name in the list, and it will appear highlighted in blue. They will receive a notification that you've replied. :-)

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Thanks for pointing that out - I have edited the reply to properly call out. :-)

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Hi Karen, few questions there! I will try to answer although I can’t explain or be responsible for mistakes or oversights of anyone other than myself.

1st one I think is related to examination. We were taught in medical school a routine examination sequence for various systems including the thyroid. These examinations are learned to pass exams but do evolve in clinical practice. They become more selective. For example a cardiologist seeing a patient with heart failure will listen in one or two areas of the chest rather than the medical student who will listen everywhere. Examinations are done to find things that will change management.

If i was examining a patient presenting with symptoms of hypothyroidism I would examine the thyroid gland. I probably would not check reflexes routinely as finding a slow relaxing ankle reflex would not change anything.

The thing to mention is specific to general practice. You asked about what GPS are taught. GPS are not really taught in the sense of having a lecture on every condition that might present in general practice. We have medical school, foundation training then GP training. We have to learn and pass exams by reflecting on practice, reading/private study and assessment in practice by other GPS. There is a GP curriculum, you can see it on the royal college of GPs website, it is vast and it would be impossible to have a lecture on every topic.

The other difference is the current state of practice on the UK. Fully booked with 10 minute appointments back to back. 10 minutes to read the persons notes beforehand, see the patient elicit there problems/concerns, decide and agree a plan with the patient, write out any scan requests, bloods tests, prescriptions etc. Then explain everything to the patient as well as record everything in the notes. So unless the examination is going to change management you can see why it would not be done. Not saying it’s right but thats how it is at present.

Finally I’m sorry you received incorrect treatment and I would not normally treat a patient with thslassaemia b minor. But I would point out that patients do not present with a diagnosis, such as hypothyroidism or a thalassaemia, they present with symptoms some of which may fit with the diagnosis, many which do not. Also many patients suffer from multiple problems which is where the alternative model of care in the US falls down.

Not trying to dismiss your complaints just trying to give an honest answer to your questions.

I am however very proud of general practice. It is brutally challenging st times but great at the end of a week to look back on good outcomes. I’ve also yet to come across a better system elsewhere.

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Thank you very much for your answers and time you have taken. If you care to take any further time, would you explain what you mean by alternative model of care in the US and why it would fall down in comparison to the UK model?

Also, just to ask, since folic acid helps a thalassaemia b minor patient produce more red blood cells and it improves a small degree the stamina in a patient like myself, why would you not provide it or suggest it, if you looked at the blood profile of the patient and it was as affected as mine is? When we don't carry enough oxygen and in my case a blood profile always looks fairly anaemic and a lot of smaller red blood cells with targets in the center, ATP is compensated in other ways (I think this is the case but understand very little of this).

But to suggest statins to a person in my situation who is needing more of my thyroxine medication back was about the worst suggestion I could imagine and would have really handicapped me. This is my take on this and I understood I was on the right trail by the GP's (who are private doctors) who are my clients. Anyway, when I got the right amount of thyroxine again, my cholesterol level went back to normal and I feel like myself again.

I appreciate your understanding of how difficult it is for us to get the correct response to our various problems with hypothyroidism and thank you for that.

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See, even here it suggests folic acid. And these are the symptoms that we experience as well, but I try never to think about it and just carry on.. but I want my folic acid as my companion!

cdc.gov/ncbddd/thalassemia/...

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Just looked up what the targeted red blood cells are called: en.wikipedia.org/wiki/Codocyte

I don't think taking statins would be good for the way my body compensates by lipo consumption.. but again I don't understand here and am probably talking out of my hat.

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Hi Karen, no problem. I appreciate the problems people face with many health conditions in a world where we are lead to believe there is a simple answer for everything when in fact the more you learn the more you realise is yet to be discovered. The more I learn about medicine the less scientific it becomes.

In terms of the U.S. healthcare system, I do feel it is a tragedy for a country of such wealth to leave so many of its citizens without basic healthcare. It is shocking that so many people do not have acces to basic care, doctors appointments, primary prevention and even a great deal of emergency care. What's more astonishing is when you realise that the influence of private companies and market forces means that the U.S. Govt pay more per capita than the UK for a fraction of the level of care. America is troubled by over diagnosis, over treatment, a crisis of prescription opioid addiction and sadly, I worry that, with slowly increasing privatisation, the UK is at risk of following suit.

With regard to the folic acid treatment, I haven't said anything about denying treatment. If I had a patient with b thalassaemia minor who was symptomatic I would refer them to a haematologist. This would be free of charge and the expertise available would likely be greater than what is available in private practice.

I think the NHS is currently in a crisis of underfunding. However we are in a far better position than most countries, including the US, and we should invest to ensure we go on to enjoy a healthcare system that is the envy of the world.

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Hi gav5684, thanks again for answering. I'm from the states and you probably picked that up in the previous posts. It is very different here, that is for sure. I've met some wonderful doctors here and some that quite frankly scared the hell out of me and left me quite traumatized. Oh and you get all kinds in the states as well, that's for sure.

In the states I was under the care of a great haematologist, he even showed me under the microscope the target blood cells I've got and tried to explain that I needed to take folic acid the rest of my life.

The doctor that caused me trauma by saying I didn't need folic acid, never did a blood workup on me and had never heard of folic acid for thalassemia b minor patients. She consulted a haematologist about my arguing with her about it, the haematologist never had my blood work done and only called me on the phone to tell me he had never heard of folic acid for this either. I informed him of what I know from my haematologist in the states and I had to even tell him that folic acid helps red blood cell production and this was about 15 years ago... so this scared the hell out of me as well... that they wouldn't know anything about this and dismiss it, but they both decided they better keep me on it anyway and since then I've not had any problems getting this prescribed..

But the irony of this is that on the basement floor under this very surgery is the thalassemia center and clinic for this part of London. I went in and explained to the woman there what I had gone through from the surgery above and she was as shaken as I was...because she knows this is the gold standard to give anyone like myself and couldn't believe they didn't know about it.

Oh well.. but that was my different experience between the states and here. And in the states my doctor there always felt my spleen and checked for shaking and reflexes etc, when I would go in for prescription renewal.

Each state is different over there with health care to a degree. In Massachusetts, those without insurance get full treatment through the provision of the state. Other states provide in other ways as well, but like you say, it is sketchy and not as assured as it is here.

Most grateful for your time and insights. Please, if you would like to add anything at all please do. It is so welcome to have this bridge between us on one end and your insights on the other.

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ncbi.nlm.nih.gov/pubmed/122...

There was this factor that made a point to me how related cholesterol is to not only thyroid levels but also with a person with the kind of Thalassemia effects I have. Very interesting and somehow all of this is related, and not really even understood yet.

BTW, in doing some updated research on this to communicate better with you about it here, I found in an article that they estimate only about 1.4 % or 60 to 80 million people have Thalassemia in all its various forms. A very small range of people, this surprised me.

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Thanks Karen, I hope you’re well on current treatment. I come here to learn. I learn from patients every day. From my experience you will get most from doctors when you realise they are people, often patients, like you. The best ones are not the thisd who have read the most text books, but the ones who recognise the limitations of there own knowledge and share the problems with their patients. Ive treated patients with problems I know little about but we usually get there if I act as their advocate and share their problem.

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Thanks too, yes I'm feeling good and well these days..

Here is a little bit of a chuckle for you I hope. Many of us were going to Pulse Online to try to figure out what drs were going through and what they were thinking to get a better picture too.. Until they kicked us out through their more strict registration guidelines.. now we can't read any of the meaty articles and blogs anymore .. :)

Cheers!

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edit to add.. but I do remember reading on Pulse Online when we could access the articles that the hypothyroid patient who has a suppressed TSH level is about a most dreaded and tense patient session to be dealt with and the drs there were all adding in how they coped with "our kind".. but that was years ago and since then I think most have begun to have less of a rigidity to how to treat us. But I think we traumatised them too from what I read.. lol

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Ha ha, oh dear. To be honest pulse is a pretty dreary read! It tends to be populated by a lot of pessamistic GPs, sometimes I hope they are fake/joking as use anonymous accounts. I suppose you do get a picture of what goes on though.

Being a GP is tough. A person can walk through the door with anything; infected toe nail, heart attack, a cold, to disclose domestic violence or even to complain about their job! All the lectures in the world xmcannot prepare you for that variety and I’ve found patients to be vary understanding when I say, ‘I don’t know, I can read up on it and call you back on Monday.’ Some might think that’s not good enough but to me it’s real life general practice.

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The best doctor I ever had in the UK was like that. He left our surgery though and that was a shame because from what I heard, everyone kept asking for him, even years later we still wish he was there. He would say what he could to explain and then be open for working with you. He would always say he didn't know when he needed to be frank and work something out. Bless him for putting me on Tibolone is all I can say. Angel from heaven he was.

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