Endo schmendo

Just a quickie: my Rehabilitative Medicine specialist told me that he was at a 'do' of doctors and he asked an endo friend of his, "if you had a patient whose TSH levels were 'normal' when the patient was on both 100mcg and 150mcg of T4 but the patient felt better when on the higher dose, would you prescribe the higher dose?" Guess what the endo replied?

My consultant is completely aware of the apparent psychopathology of this group of doctors and there is nothing either he or anyone else can - or is willing- to do about it.

What the *%"+@!?

61 Replies

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  • Schenks,

    They are far more interested in the blood test results than the patients' lives/livelihoods.

    They just do not understand how important thyroid hormones are for us to function as healthy individuals and would rather the patient remained unwell or very unwell or hospitalized as it will be 'our own fault'. Do they have hearts of stone?

    Many thousands do fine on levothyroxine and they certainly wont be on this forum, but there is a vast number of 'us' who do not and we deserve an 'alternative' offered so that we can live and enjoy life and not be a drain on the country by either getting far more prescribed medications for our 'symptoms', unable to work, unable to do anything and some are even incapable of walking but it will all be put down to 'psychosomatic' or any other 'handle' they wish. How many lives have been destroyed? Far too many as it also involves the whole family/friends.

    At least your Specialist has a 'soul' in that he obviously wants to do his best for his patients but will be prevented from doing so as he will be treated as many other doctors have been i.e. Peatfield, Skinner, Chandy all loved by their patients for their empathy and willingness to make them well but persecuted by the 'authorities' for so doing.

  • Hear bl***y hear! couldn't have put it better.

  • My wife was in hospital for 24 hours, under observation (i.e. 1 ecg) for atrial fibrillation, discharged last night after no treatment, The Consultant on the morning rounds happened to be an arrogant lady endo! I asked if the AF was related to Hashi, she looked non-plussed, but said that is was probably caused by my wife taking the Westhroid NDT! She then proclaimed that Levo was the one and only treatment for Hashi's hypo. We have an endo appt. there soon. As you can guess we are really optimistic- not.

    Sigh.

  • How ignorant these Endos appear to be when they cannot take it as a fact that some of us do not feel better on levo (I felt far worse and my TSH was 100) and may have far more symptoms than previously.

    You know that the Authority for the guideline can argue that levo is best and it may be for many but not for quite a substantial number of people who do best on NDT or T3. I don't know if you've seen the following which, despite three yearly reminders, was never responded to by the BTA or RCoP.

    thyroidscience.com/Criticis...

    I do hope your wife feels much better and it is scary when you get severe palpitations or AF. I've lost account of the ECGs I've had and heart monitors. My heart is fine - so what caused the above - my viewpoint is it was levo.

  • I forgot to say, when I suggested that perhaps my wife would do better on T3, she said, Oh no T3 is very dangerous, and I would not prescribe it! A Consulatnt Endo!

  • I agree with all the others. Don't go under any circumstances. Do a bit more research and see of you can find a better, or rather, less crap one. You could ask a question through a post on here for endos in your area and also look at the TUK website to see if there are any on their list.

  • I did ask on a previous post with no success.

  • Whereabouts in the country are you, Chrys?

  • North wilts.

  • Thanks, we're in North Wilts.

  • Hi, Chrys. I've pm'd you and I'm sure others will too. All the best.

  • After nearly 8 years of illness, 30 doctors, 5 endo's, i am broken down. I am deathly afraid of doctors now, they think i am a lair, i guess. They don't know why i have these symptoms, yet, i find all of them, on websites for hashi's and all my symptoms started when i showed symptoms of hashi's. They are very willing to give me antidepressants, statins, pain meds and send me to cardiologist, gi doctors and a psych. evaluation tho.

  • I'm so sorry to hear that. Are you self-treating now?

  • yes, i self treat my thyroid, no blood draws anymore and it really takes the pressure off.

    I am working with a functinal medicine doctor, to restore my immune system and get rid of this hashi's once and for all.

  • Excellent. Where do you see your doctor?

  • I am in the US and she charges based on income, which is really rare. I pray she can help my son and me. We have felt terrible a long time now, missed many years of living.

  • That is amazing, a real gift for a US doctor to use a sliding scale fee structure. The only thing I would say is that you've been so ill for a long time, try to be patient, trust the process and keep looking up. You will get there.

    x

  • Thank you for your encouragement.

  • In that case cancel the appointment and find another hospital...., dont waste time and rEsources.

    G x

  • They get embarrassed when they are shown up to be not the gods they want to project! Then they get nasty.

  • Hi Schenks

    They don't like being shown up because of their ignorance.

    Really, get nasty, interesting! Talk about practice what you preach, if it's NHS, hospitals, doctors etc there are signs up everywhere where it clearly states aggression and foul language will not be tolerated and I'm sure it says incidents will be reported to the Police, perhaps next time you go take a picture on your phone and show it to the Pratt(s).

  • IMHO. It's not about foul language & aggression. It's just frustration - from all sides.

    Fortunately I have read quite enough information to realise that, much as I love the NHS as a concept of free health care for all (& the biggest employer in the UK... ) the ignorance is merely that they do not walk in our shoes... well, 5% do.. statistically, but unheard.

    GPs have their hands tied... it's all about evidence-based medicine (& they think we expect to walk out the door with medicine? - nope)

    those blood tests & treatment - our stories are just stories (at the moment). see GP Suicide rate....

    Another 'professional' lot are teachers - hands tied too.

    I see their frustration - their clients are parents not the kids.

    Both 'professional careers' are dwindling over the last few years - despite lucrative incentives - would YOU want to be a doctor or a teacher? Nope! Too scary - too many variables... litigation?

    Good luck. J :D

  • Hi Spareribs

    I know that it's not all about Aggression and Foul Language if you had read Shenks comments she said they get nasty meaning the Doctor or Endocrinologist I just replied. They really are not in a position to get nasty. I've been in sales over thirty years have you heard the expression the customer is always right. If they can't be personable to their patients and LISTEN to their patients instead of following like sheep and going off a range which is totally ridiculous as that is like saying we are all the same and we can all take the same medication and it works, well it CAN'T and we are NOT all the same. If the so called professionals can't do this then perhaps they are in the wrong profession. They take a vow to provide medical attention and help their patients and quite a high percentage of Doctors are NOT doing this especially if their patients are thyroid sufferers.

    Are you aware that Training Doctors in Medical School do not cover thyroid issues, WHY, as there are millions suffering because of lack of knowledge or interest (if they were interested they would do something about it) I've been suffering for the past ten years, have been really ill the last two years, only by joining Thyroid UK Forum have I learned that my bloods are definitely NOT normal although I am in this so called RANGE, my B12 is dangerously low which can cause irreversible neurological problems over a period of time, as I haven't had full bloods tested ever, in the ten years I have had thyroid problems, who knows if I have neuro problems.Why has my doctor agreed to my full bloods being done now only because I insisted and went in the surgery armed with information from this site. Why should we have to argue and fight for something so important as our health.

    If Doctors didn't dish out crap that's not needed on prescription there would be more money in the pot to prescribe other drugs to the suffers that Levothyroxine doesn't suit again it's too easy to stick to the RANGE and use the excuse that Levothyroxine is the only drug to prescribe all I have to say to that is B***S*** it's all a question of money or lack of it.

    Would I be a Doctor or Teacher, well as previously stated I have been in sales for 30 years the very first thing I learned in Sales was the most important piece of kit you will carry is your ears as most definitely the best piece of advice was to LISTEN.

    In this day and age with the way things have changed with new Health and Safety Regulations changing all the time it doesn't make life easy whatever job you are in.

    Me I'm a rebel and if I took a vow to help people then that is what I would do, sometimes rules are meant to be broken and where health and lives are concerned then YES they should be broken we are in the 21st Century not the 18th.

    If you (in general) haven't got the balls, inclination, passion to do what's right then look for something else to do cos you (in general) are in the wrong profession.

    😡

  • Just realised what you meant. I didn't mean the doctors get aggressive or that they use foul language, but that they use their power to try to make us comply with their regime and if we don't they chuck us off their lists. It happens with monotonous regularity, as attested to by users on this site - and on this string!

  • Omg, Dont go. Find someone else.

    I've done the arrogant endo rounds and kept ill and actually almost killed by one.

    Other than Tsh watch for 7 years they didn't help.

    I'd never go back.

    Look after myself and doing a better job.

    Pulse bp temp and how you feel. Good vits minerals, good nutrition. Rest / walking And that's it.

    Good luck.

  • Disgusting, some if these so called professionals think they are gods. It's not their health that they are ^*¥$*^~ about with, they want kicking out of the medical profession, arrogant AO!

  • Yes, I hope your wife improves... it is quite scary when the heart is involved. They are sooo uninformed, arrogant and well disgusting! I developed a pretty bad arrhythmia which went on and on to the point of me being jerked out of my sleep with a heart rate of 39 bpm on a regular basis, scary I tell you [and I only had the BP machine because 'they' kept telling me I had high BP and needed meds - which of course I did not!]. After several ECG's showing nothing, except a nurse who told me that I 'had no pulse' [I said, "She's dead, of course"... swallowed a fly], my GP finally 'caught it'. I paid privately to be told that everything I said was as it was... he questioned a thyroid issue but how was I to know at that point, knowing nothing of this? So, big chance gone in mid 2007. Tried and tried to be taken seriously, in 2008, 2009 - endos say nothing wrong due to range measurements. Dr S and Dr P also both diagnosed hypothyroidism... as I've said, "An optically challenged man on that proverbial galloping horse could not have failed to do so"... just by looking at me [the before, during... kind of after pics say it all, like those taken by conscientious doctors over 100 years ago]. Things massively improved for me but I still have a dreadful temperature problem... now 'they' say I've never had a thyroid problem and I'm making myself ill taking 'rubbish' [i.e. NDT then T3 and adrenal support... I keep trying to cut back but I go down when I do]. So much information exists on hypothyroidism... they don't want to know... it seems to thrive on sham and scam via arrogance and ignorance. Very sad indeed, for all... including them!

  • Just a quick reply on blood tests..I was diagnosed with an overactive thyroid some years ago.my blood results confirmed this..did my doc do anything..NO..he waited six wks the hen took more blood..while I sufferd..then to my utter surprise my bloods came bk as what he called normal levels...but I was still symptomatic..felt unwell for ver a year..just got on with it..then I became very unwell but recognise the he symptoms..overactive thyroid again..made my doc do bloods ad to insist..came bk overactive..did he do anything..again NO..waited six wks..blood came back normal..that was the that..still having symptoms..just been discharged from hospital..seven days of hell.!!,, was diagnosed with H..pylori..and colitis..funny tho most of my thyroid symptoms subsided when consultant put me on steroids..weird..off them now and symptoms are bk with avengence..dont belive in blood tests!!!!..:'(

  • Hi Birkie

    I'm sorry you've been given the run-around too.

    If you can get a copy/print-out of your last blood tests with the ranges or if that was quite a while ago ask your GP for a Full Thyroid Function Test as mostly they think/believe that TSH and T4 are the definitive diagnosis. They rarely if ever do a Free T3 as they say it's 'not necessary'. If they wont do a FT3 you can get a private one from a recommended lab. The most important thing is that T3 is the active hormone and T4 inactive. If there's insufficient T4 or we cannot convert properly we will not have enough T3 for us to function properly.

    If it's been a while make an appointment for a new blood test for your thyroid hormones and make the earliest appointment possible and fast (you can drink water). If/when you take levo allow about 24 hours between the last dose of levo and the blood test. This helps your TSH to be higher but you will see from the following link how you can still be hypo with low TSH etc. So the test should be a Full Thyroid Function Test, Vitamin B12, Vit D, iron, ferritin and folate. Get a print-out with ranges and post on a new question.

    thyroiduk.org.uk/tuk/testin...

  • Thanks for the reply shaw

    Doc never put me on any meds for hyperthyroidism..coz after six wks the bloods came back normal..what is normal.I asked for a print out of a full blood count but cant see a thiyroid blood test on the printout..after being on steroids for eight wks I felt alot better on them ad lodsa energy n my pain level was about a 4..fgot to say I was also diagnosed ME/fibro..have been in bad body pain/fatique for over ten years..so when I get overactive symptoms doc wont listen to me.. but steroids made me feel better..but after being off them for over a week..im now bk to walking like an old woman in her 80s..have server sweating/irritable..body pain/fast heartbeat that scares me!!..and to top all that I have H..pylori..and colitis..im waiting for a colonoscopy..my consultant wants to see me in clinic tomorrow..im gona mention the thiyroid and my god awfull symptons..im sure its an autoimmune thingy..will ask about that to..as the last but one endo said she thotr I might have thiyroisitis..but ad no treatment of doc.

    Thanks shaw its good to talk to people goin threw the same things as me..im not mad after all..think thats the docs...lol

  • If you can afford a private blood test it may be worth it. Thyroiduk have a list of recommended labs and they give a small discount if Thyroiduk's code is entered. You put Thyroiduk.org as your practicioner and they destroy the copy they receive.

    thyroiduk.org.uk/tuk/testin...

    Doctors/Endos, I think, maybe the last people to diagnose a dysfunction of the thyroid gland. This is a link and Dr Lowe who wrote the article was Director of Fibromyalgia Research Foundation. as well as Director of Dr Lowe.com dealing with thyroid problems. and Thyroidscience.

    Thankfully we can still source is wealth of info:-

    thyroiduk.org.uk/tuk/relate...

  • If you asked for the results of a full blood count then that sounds like exactly what they gave you. Thyroid Function Testing (TFT) is not included in a Full Blood Count (FBC) test, so you wouldn't have seen it on the printout you were given.

    Next time you ask, don't be so specific. Just ask for the results of any blood tests you have had over the last few weeks or months or however long you want, but don't mention any specific names of tests.

  • Hi thanks for the reply ..I did ask for thyroid blood results..when I asked for a fyll blood count she insisted the results were all on the sheet..I took the results home and tryed to make sense of them thats when I noticed their was no thyroid results..I rang the surgery back to be told for some reason the printout failed to print the thyroid results..im still waiting..but goin bk some time this week to put a rocky up their backside..im requesting more printouts of bloods since being diagnosed with H pylori/ colitis..iv had loads of blood taken off me but docs and consultants just said your blood works fine...I did a 24 hour urine test

    On the 2 jan been trying to get results since 17 th dec..no results bk yet..been to see my coconsultant today for colonoscopy.he said my urin showed a kidney infection..no wonder I felt rotten over xmas..why the hell was I not told..he even said I wont treat you for that as it was sometime ago..WTH...I dont trust the n h s anymore...crap!!!!,!

  • Not being treated for a kidney infection is appalling. Ask your GP for another urine sample to be tested. You don't have to see him/her. You could either write a letter with your request, or ask for a telephone appointment. You'd still have to go to the surgery for the necessary paperwork and bits for the urine sample though.

  • Again thanks for the reply..im gona do just that..request another 24hour urin test..and write to either the consultant or docs as to why when my urine test showed an infection I was not informed..not good practice for

    So called exexperts in care...againthanks for replying..imhaving a really bad time..its

    Been ongoing for 18months now..I have

    Finally got a doc to send me to a consultant ..so crossing everything..:-D

  • I have been waiting over a year to see an Endo who refused to treat me unless I came off NDT and went back on T4. Luckily I didn't do it as I would have had to wait 14 months to see him again! He had no clue about T4 conversion and the link with gut issues or the genes test to see if I was converting T4. I won't be going back!

  • Reading things on this forum will make you far more knowledgeable and we, the patients, have actual experience of the illness - not just a theory as do most of the Endos.

    We can get well if our doctors/endos are incapable of doing their job.

    The members here have so many different experiences and we can all learn from each other.

    I think we're surprised that so few doctors nowadays have exceptional gifts of diagnosing and treating so that the patients do recover or vastly improve.

  • i have suffered seriously for 3 years (was ongoing for 7 years) i will never understand the lack of treatment of thyroid patients till the day i die. What is the point in keeping people so ill?? its seems (and certainly with me) that they will happily hand out any number of drugs except the ONE you need? some of the stuff iv been prescribed even states in pip not to be given to hypothyroid patients!! i.e prozac, statins, diahydracodine, co codamol, mebeverine, lopermide, valium etc.

    The rubbish endo i saw said she would be more concerned a 'normal' person (tsh 4.9) taking any thyroid medication than the side effects of all the combined drugs put together...it beggars belief xx

  • Big Pharma 'Pushers'... yes, it beggars belief!

  • I think it was Mary Shomon who described endos as "the accountants of the medical profession". If they love bloody numbers so much, why don't they just become accountants? Oh, of course - not quite so prestigious, is it? :-D

  • Definitely not so prestigious, particularly when asked to give a 'speech' of which the main topic was 'Dissatisfaction with levothyroxine but TSH 'in range' and pronounced that those who were dissatisfied were actually suffering from a Somatization Disorder - you really couldn't make it up, could you? It would be hilarious if not so deadly serious.

  • I had a tsh one year of 97

    Looking like a gargoyle/ puffer fish. Was told by the endo I just had anxiety. My husband almost jumped on his head to give him my face.

  • my guess for the reply of the ' specialist endo ' would be ...... remove the t3/t4/ndt [ or whatever ] and continue with various doses of levo only ........ because he/she is going along with the flow of the established guidelines ONLY and not doing the vocation they signed up to when they entered medicine [ that the patients health is paramount no matter what the constraints are --- hypocratic oath --] , and finance , politics , or any other pressure IS IRRELEVANT ...... oh for some doctors/specialists etc. with the ethics that they were born with before the corruptible society stained them .....alan xxxx

  • I have a very uneasy thought - this complete consensus of militantl dismissal of anything and everything a patient tells them amongst the endo cabal is a kind of Nazism. As in, we are lesser beings who are a drain on the good and godly resources of medicine and its fraternity and must be suppressed at all cost - to us.

    Heaven forbid - I'm not making a direct comparison here between some of these doctors and the German Army of WWII, and there can be no comparison to gas chambers and the unspeakable horrors of then.

    But there seems to be a similarly viciously dismissive and repressive spirit that appears to be oddly present in each of these cases where a sick person fighting to get better is treated so disrespectfully, dismissively and, in reality, with such blatant disregard to the Hippocratic oath these people have supposedly taken.

    It's as though these endocrinologists have agreed on a common enemy and how to repress them, the common enemy being a patient who says s/he is ill and who challenges the academic foundations upon which these doctors' fragile ego are shored-up.

    What the hell is happening? This is repeated wherever we look - especially in positions where the powerful seek to maintain their power, such as in Government, in the media, big business, big pharma... It's the Old Boy's network viciously supporting the status quo for their benefit at the expense of the weakest. Or am I being too fanciful here?

  • Brilliant post Schenks and you're spot on with your observations.

  • Thank you. :D

  • Yes, that has struck me too.

    I'm not overly political, I suppose my instincts might be slightly right-of-centre by modern standards. When I hear people complaining about big business/government/cronyism etc, I usually switch off, assuming them to be paranoid/class warriors etc.

    But the more I read up on issues which affect us, I'm slowly realising that IT'S TRUE!

    I like to think if I worked in a field of medicine which was not fully understood, I would keep an open mind, would be slightly wary of claims made for expensive drugs, keep an ear to the ground for what patients groups find to be of benefit, etc.

    I cannot fathom the closed minds of doctors&endos, which they unforgivably compound by persecuting colleagues and patients who dare to dissent.

    They are, indeed, fascists ..... a word I haven't used since I was a teenager, when my puerile mind used to think "The Young Ones" was the funniest thing ever.

  • In a world that operated on logic, doctors who kept their patients in a state of disability would pay a financial penalty after a year or so. Unfortunately we do not live in that world.

    An endo (almost any endo) is my LAST choice for a thyroid doctor.

  • Most on this forum would agree with you.

  • D'you think if they privatise the NHS, and we have to pay for everything, we'll all become "consumers" who can demand a better bang for our buck? And our rubbish endos will end up begging on the streets? Just kidding.

  • I think when (not if) they privatise the NHS we are going to be many times worse off than the Americans whose health service our current government seems to admire so much (because it makes lots of lovely profits for the people who can afford to invest in it).

    I very much doubt that all the restrictions that the NHS currently works under will be removed when the health service is privatised. There will still be the insistence on using guidelines that aren't fit for purpose. The pharmaceutical companies who currently supply our meds will fight tooth and nail to maintain their monopoly. Did you know that the MHRA, which approves meds for use in the UK, is funded by pharmaceutical companies themselves, not by central taxation?

    The doctors in the medical profession will still be the same ones we have now. They will still want to treat one symptom at a time because it is all they know. If there are doctors who practice holistic medicine in the UK they are few and far between, and I've never met one.

  • Schenks I love every word of your impassioned rant !

    Teuchter I'm NOT kidding when I amplify your feelings and add that in my opinion

    There is a cabal of misogynist endos who want to keep us ill

    They are unfortunately considered to be at the top of the endo tree

    There should be more mechanisms in place to complain about perceived poor advice, given that NHS is NOT in any way free and we bally well pay through the nose for it

    and

    Perhaps if they had a month in our moccasins they might extent a little compassion rather than showing us ranges and graphs and freaking pie charts. A pox on most of them and bouquets to those who stick their heads above the parapet - stay down, before the GMC notice you !

  • "A pox on most of them......", what a brilliant line!

  • Fellow ranters all; have you all read Dr Macolm Kendrick's description of how thyroid patients are treated? For the few who have not yet found it, I paste the address here.

    drmalcolmkendrick.org/2015/...

    What we need is an organising body. For the sake of those not members of TUK (I am but can't fathom my way through all the info) is there an organising body in E

    ngland as there seems to be in the more conscious northern part of the UK, Scotland? (Teuchter, I'm on to you!)

    The problem seems to be that we don't have sufficient numbers to sign petitions to get any ball rolling! Like here, for example:-

    secure.avaaz.org/en/petitio...

  • Schenks - patients need to stop displaying deference to the medical profession. Respect needs to be earned rather than an automatic right to it cos of your job.

    I firmly believe that we have been let down by those GPs who are well aware of how the system works and are knowingly failing their patients. It is inexcusable. They should be putting pressure on the Endos to do their bl**dy job, who in turn should be putting pressure on the BTA/RCP. It's really not rocket science and you don't need a flippin' medical degree to see that patients are being left to suffer with a poor quality of life.

    The Scottish petition rumbles on with Lorraine repeatedly banging her head against a brick wall of apathy from people who're seemingly terrified of upsetting the medical establishment.

    We really need a spokesperson who's in the public eye but they seem to be somewhat thin on the ground.

    I'll stop now otherwise I'll rant for England!!

  • Hmmm. Everything you say is right. what kind of spokesman would that be, I wonder? what kind of qualifications, how to stand up to the wall of - well, killing indifference?

  • Schenks - for what it's worth I will continue to make complaints about the GPs and Endo who've treated me with 'killing indifference'. Like that phrase of yours, it's succinct and hard-hitting so may well borrow it if that's OK?

    I strongly believe that tax payers need to be aware that they're paying - in the form of multiple prescriptions, disability benefits, housing benefit, JSA, tax credits etc as so many have been deprived of a functioning life. Additionally the public also need to know that the numbers of sufferers is increasing and may well become an epidemic as it is in the USA.

    Perhaps affected celebs need to be approached, there is a list of sufferers kept by Rod I think. One thing's for sure and that's nobody from the NHS will stand up for us patients.

  • Indeed, borrow away, and you're damned right in what you say.

  • Anyone out there with a recommendation for an endo in North Wilts or thereabouts, can you advise Chrys, please?

  • I said to my doctor once , I get the impression doctors don't think hypothyroidism is much of a problem. He replied your right we don't.

    Arrogant man

  • one of many...sadly

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