Are Endocrinologists Insane?

I’ve just got a copy of the letter that my Endo sent to my GP saying that he should prescribe T3 and for that I’m very grateful, however there are a few things in this letter that make me go WHAT???? For a start I’ve never understood why they ask are you married, I mean what difference can that have on a none working thyroid and why point it out to my GP he knows. So if I was divorced, widowed or separated my treatment would be different? Whenever they ask I always want to say, why you offering? anyway during the consultation she must have asked about “activity” well I’m a runner, not a competitive runner just a hobby runner, I love getting out in the fresh air seeing the seasons change, meeting all the dogs out with their owners and as I have biscuits the dogs are soooo happy to see me and to be honest it brightens my day while also keeping me fit, so I explain that I run approx seven miles five times a week, so she says to me, “so how long does it take you to do a mile,” Well I’ve actually never worked it out why would I, indeed the only reason that I know how far I run is that there’s a sign that say 3 miles to so and so, and I know that I run there and back and add on another mile from my house. So I said “I don’t know but I’m not fast,” so in this letter she’s put Mr I runs seven miles five times a week but refused to tell me how fast,” I was like What!! No I didn’t I said I didn’t know, apart from anything else give me a break I’m nearly 60 the fact that I can run at all given that I’ve got asthma, Pernicious Anemia, Hashimoto's and bunions is a nothing short of a miracle, but then again why the hell would how fast I run have any effect at all on any treatment offered and why take offence at my not knowing how long it takes me to run a mile? As I say are they bonkers or is it me? Anybody else get asked bizarre questions by Endo's?

93 Replies

  • My last recent letter I had included stuff I didn't say, things that had been discussed with a diff endo the year before ,had another diff endos name on the bottom yet was signed by someone else I hadn't seen! Bizarre to say the least.

    However it did mention the gp should try me on t3 so there's hope in the madness.

  • I know I shouldn't laugh but really it's only thing you can do!!

  • I find,"Why do you want to know" works every time.

  • Thanks for that it's my new plan!

  • Exactly miglet54........ I say that all the time to cold callers on the phone now ........let's giggle on....when I showed my Endo my "thyroid disorders " booklet he commented that the hypo thyroid chapter was not very big. I then said that there was a large chapter for pregnant mums.......Why did I say that ?........ I haven't got a clue.

    He then said" Are you thinking of getting pregnant then ?" At that time I was 74 yrs and could only think to say " I think I've done my bit"!!!!!!!!!!!! ............was that a thyroid moment or senility ?

    PS.....I'm on T3 so beware 😊

  • 'I think I've done my bit' = genius.

  • Good tip. I'll use it next time a medic of any sort asks me a stupid question ;)

  • I find it's not just endos - all kinds of medics ask silly questions and make bizarre comments in your records. But consider that most of them are drawn from the more privileged sections of society, and they don't really meet the Great Unwashed until the later stages of their training. I think the shock and bewilderment they experience at that point stays with the poor loves, and they become steadily more unhinged as their careers progress. ;)

  • That really is bizarre. The only reason I can think of for asking your marital status might be that if you are divorced, separated or widowed then you might be depressed! So they could offer anti-depressants!

  • Awful isn't it? :D

  • Missed out unhappily married, that's always worth an antidepressant.

  • They need to blame the patient for when they don't have any answers.

  • That's nothing 2/3 I've seen say I'm claiming to have adrenal fatigue (4 sky highs show this) I have no hypo symptoms (over 50 I can think of) and it's physiological- i.e. All in my mind!!

  • I see doctors in a very different light these days. I truly believe if you do your research and educate yourself, you can do anything. I saw a doctor 9 months ago and went with loads of information and my own assumptions with what my problems could be. When I received a copy of the report he had sent to my GP, he wrote about my husband and I, and basically said because we were both nurses we thought we knew better and that we had been reading up online about various possible causes of my problems. He categorically dismissed that I may be suffering from chronic thyroiditis in the report. Fast forward 9 months, the same doctor immediately told me that I could be suffering from thyroiditis when he heard I was having a full thyroidectomy. Did he forget what he had written in his report? Ummh! Talking of covering arses! What annoys me the most is, unfortunately these reports stay on your electronic records forever and sometimes when other healthcare professionals read those reports, they can make assumptions about patients prior to meeting them.

    I get your frustrations!


  • Thank you Greenfairy10. I'm recovering well and feeling so much better than before the thyroidectomy.

  • As someone else said, it's not just endos. I've been asked all sorts of weird questions in my time, and found all sorts of inaccuracies - and down-right lies - in my notes, etc.

    But one that really did get my goat was when I was pregnant, in the 60's. First appointment with anti-natal, they asked 'how long have you been married?' I asked why they asked that. The doctor got confused and said well, um, it's good to know if you've been trying for a baby for a long time, with no success, or if it just happened out of the blue. I said, well, why not just ask that, then? It's not at all the same thing as how long you've been married. But, he didn't have an answer for that. The question seemed rather judgemental, to me! And, given that I was only 23, I would hardly have been trying for very long, would I!

  • My first encounter with an endo was my last. I paid privately in the hope to speed up the process and, I thought, might just get a better service (not!). She spent the whole of the first consultation stifling a yawn - it was hard not to think I must have been the most boring person she had ever encountered. She did however, ask my GP to put me on a T3/T4 combo which made me feel even worse. When I told her this she said "I don't usually have this problem with people of your age" - well pardon me, shall I come back when I am younger?

    I think she was just a glorified GP with an interest in endocrinology. Does anyone actually know what qualifications you need to parade yourself as an endocrinologist?

  • One Endo who I saw years ago had no qualifications at all and was just "filling in," as the department didn't have anyone qualified! The one I saw after that said to me, "Endo's don't really like dealing with Thyroids as they're boring we much prefer dealing with cancer that makes you feel as if you're making a difference" That made me feel a lot better nothing like being told your medical condition the one thats destroying your life is Boring.!!! How I laughed.

  • I've even annoyed an oncologist by refusing treatment, and telling him that, no, I wasn't a health care professional, just an educated human. Again, he took it very well really, although I did feel pressured into going back for treatment (I didn't).

  • Well any more with the same attitude need to jump ship to do haemorrhoidectomies. They certainly make a difference!

  • jan4363 aaaauugh, this is why I have a little inner panic every time someone says 'I think I will go private as I really need to sort this out.'

  • You are right, going private doesn't necessarily equate to better treatment. The only thing that can be said for it is that you get seen quickly. The person came recommended but unfortunately you can't 'try before you buy' but it has rather put me off endo's altogether.

  • Yes, even the endos on the TUK list aren't really mavericks out to change the world of endocrinology. Someone got lucky, the doc was put on the list.

    I know I sound like a terrible doom-monger when I warn some poor unsuspecting soul here to manage their expectations. I'm not complaining, having the list is better than not having it. I just remember how I felt and I hate to see someone unprepared for the likely outcome.

    But on the other hand you do get seen quickly, so that is something.

    (I have been put off entirely too.)

  • You're right. I fought tooth and nail to see an Endo who was on the list and was overjoyed when I got a referral as he was out of my county. Although initially he seemed so much better than my last one (who added 10mcg t3 to my t4 and told me to come back in 6 mths!), It appears he still doesn't have the knowledge I require. He wrote me a prescription for wp thyroid but put me on one grain a day for 8 wks (considering I was on 100mcg t4 and 46mcg t3 that was no way a comparison). The best thing about him is that it keeps the gp off my back for having a mega low tsh and he doesn't care what my tsh is. That's revolutionary for some endos!!!

    However. He is part of a team and I've actually only seen him once. The last person I saw immediately told me I was hyper because of my tsh. Then only agreed to raise my t4 if I halved my t3 "because you should never take more than 25mcg a day". Despite all my hypo symptoms I wrote down for him he picked and chose the ones that made me look hyper in his letter to my GP. So fed up with them now. I've accepted I'm on my own now. Only I'm not because I have all you lot here 😃❤

  • It sounds like your experience, like mine, was better than most and even we are put off! <3

  • For a good few years now I've noticed that GP's don't ask me any questions. Even the wunderkid whom I told that I refused to take PPI's failed to ask 'why not?' or 'do you have any concerns?'

    Odd isn't it?

  • That's reminds me of something I read some while back - it might have been in Dr Sarah Myhill's book - where a notation appeared in the patients notes which said "PMITD" - "Patient More Intelligent than Doctor".

  • Brilliant! That will be written more often, thanks to this forum :)

  • I love it! ;)

  • Interesting. I'm trying to work out how doctors might react to knowing that. I think quite a lot of them would hate it and would go straight into nasty mode.

  • I bet they are scared of you!

  • Oh yes, they're insane, in fact they're not the only ones.

    Many years ago, having my first breast lump investigated, I was asked

    "Who found the lump, you or your husband?"

    Now, WTF does it matter who found the lump, it was a lump, a lump is a lump and the lump needed investigating, what didn't need investigating was who found the ruddy thing!!!

  • You should have said "the postman" !!!

  • If I was asked now I probably would, but I wasn't a bolshie so and so back then :D

  • Oh bless you, why are they so obsessed w your sex life?? This drives me absolutely stark raving mad.

    The number of times I've been asked about my husband as regards my issue w energy/libido (typical thyroid/menopause stuff really, not unique to me) and I have lichen planus too, so perhaps I'm asked more frequently than usual about 'painful intercourse' or the dreaded 'dryness' - omg. Don't worry about making me feel better but by all means do ensure my husband is not going without, god forbid. Let's make sure we address the most crucial issues!

    It would be different if they were trying to keep the door open to discussing difficult subjects that you might not bring up yourself, that would be admirable, but the way they go about it is so hamfisted, the last thing I'd do is discuss my sex life w them. I'm here for my effing thyroid ffs, not to discuss whether or not my husband gets enough.

    I did once have this convo w a doctor who I believe had my best interests at heart (ie is your health creating cracks in your marriage which might further upset you) but still, why does the subject of my health need to be filtered through the subject of my husband's satisfaction?

    I wonder if you have cancer or MS if they wring their hands over whether your partner is getting enough boom chicka wow wow. Or is it just the imaginary illnesses like uat?

  • "Don't worry about making me feel better but by all means do ensure my husband is not going without, god forbid. Let's make sure we address the most crucial issues!"

    I know I shouldn't but your post has given me a good laugh PB, especially this bit :D

  • Oh laugh away! :-) :-)

    I do feel like it's all a little bit rapey, like, what can we do so you'll start having the sex you don't want? Maybe we can just shame you into doing it? Go on, just do it!

    And it's clearly not about happiness or health as regards sex, or how can we help you, it's just about achieving that one act, pure and simple, like they get extra funding for every time that act takes place.

    I must ask my fella if his gp ever asks him about it.

    On the other hand I was filling out forms for my 75yo mum, who lives abroad, and was registering w a new gp, which comes w reams of paperwork (she hates the paperwork and I know most of her details so I do it for her and everyone is happy). A whole huge section of the form was about sex - when you last did it, how many partners, was 'protection' used, ever had an std (and if so which one), all the usual questions about 'painful intercourse' etc. I said, 'I'll let you fill out this bit shall I?' I can't remember being asked for that level of detail (but it has been a while since I registered).

  • Pain and dryness are sometimes "treated" with a local anaesthetic gel. I want to castrate the bastard (I'm convinced they must have been male) who decided this was a reasonable treatment. It is clearly given as a way of making it possible for a man to have sex despite having a non-functional partner. What women want and feel is totally unimportant.

    And just to make the treatment even more of a punishment the stuff stung like crazy.

    But the doctor accepted it wasn't a good treatment when my husband complained he got it on him and he couldn't feel anything. I'm afraid I was just speechless.

  • Blimey I'm speechless.

    Hmmph and if they gave you a sleeping pill for that purpose (so you couldn't feel anything you'd object to) it's a crime.

    But I *am* pretty exhausted, so I guess it would kill two birds w one stone.

  • PB, HB & SS - I have laughed so much I am in tears, not at you of course, just with you. Very funny, and so true.

  • jan4363 best comment ever.

  • See, now I want to know who found the lump... ;0)

  • :D It was me :D

  • It is very important to be able to identify non-thyroid issues - which is a weakness of places like here. It is so very easy for us to miss important signs and symptoms.

  • They are all crazy and twist everything you say into something that matchs their preconceptions. A very nice cardio tried to persude me that gardening was "exercise". I'm afraid I told him that walking was "transport", gardening was "gentle recreation" and going to the gym was "exercise". To be fair, he took it very well and didn't comment on it in the letter.

  • I'm afraid I told him that walking was "transport",

    That made me chuckle :D

  • Dr Claude Dalle, in his book 'The Thyroid Revolution', says that all movement is exercise, it's just a question of degree.

  • Well, yes. But in the equestrian world, you make a distinction between work and exercise: running a race is work (something necessary) for a racehorse, the gallops and road work it does to keep fit is exercise (something done to make the work possible).

    So walking to get from A to B is work, weeding etc in the garden is work, housework is work and so on. You might as well say getting out of bed is exercise. I basically say that I don't do any exercise, as I'm too tired to do anything other than what I need to do for daily life.

  • OK. But it all depends on the purpose of the 'exercise', doesn't it. When doctors tell hypo patients to 'do more exercise', it's usually because they're over-weight, and doctors believe in the 'calories in vs calories out' theory. What they're actually saying is 'use up more calories'. I very much doubt they ever tell to skinny person to 'get more exercise' - not that I actually know, because I've never been skinny. lol But, looked at that way, everything you do uses up calories - even breathing. So, for a doctor to say that all movement is exercise, is actually quite logical.

  • Your theory is exactly right GG, I am 'skinny' and never once have I been told to exercise by a GP

  • :) I don't doubt it! lol

  • Ah, but I'm not technically overweight and they still ask me.

  • OK

  • Gardening started out as exercise this the time I hobbled in to prepare lunch it felt far from it 🌻🌻 💤

  • 'Are Endos Insane?' *forum blows up*

    Well I've always thought of them as mean and lacking in compassion rather than insane, but you could be right.

    'Whenever they ask I always want to say, why you offering?' LOL!

    The letter to the gp generally starts out 'I was seen today by this *age* year old *marital status* lady who complained of *obvious symptoms endo will refuse to treat*. They must teach it in consultant school.

  • The letter to the gp generally starts out 'I was seen today by this *age* year old *marital status* lady who complained of *obvious symptoms endo will refuse to treat*. They must teach it in consultant school.

    What I hate is when they write :

    "I was seen today by this delightful *age* year old *marital status* lady who complained of *obvious symptoms endo will refuse to treat*."

    I always think they are taking the piss, and my paranoia makes me think that it means something to my GP that doesn't appear in a dictionary.

  • So funny, I was struggling to remember the *adjective* that comes before the *age* and I left it out because I couldn't quite remember how they put it but you're spot on!

    I think I've also seen (on a letter from my consultant) 'pleasant' and, once (in a referral from my gp) 'troubled' - !!!

  • I've definitely seen pleasant on letters to me before. But troubled is a new one to me. Since doctors have often rolled their eyes at me when I tell them my medical history, and keep trying to persuade me to take anti-depressants, I'm rather surprised by that.

  • To be fair to her she was a great doctor and I was very troubled at the time! :-)

    I often think of her and how brilliant she was, how well she treated me, and I was young and profoundly overworked and in a very difficult situation so I really appreciated her kindness and professionalism. But it still sort of amuses me that that was my intro in the referral. I mean, what purpose does it serve? She was referring me because I was troubled, so it was a little redundant. :-)

  • I've laughed so much at this thread I can barely type!

    If I was asked whether I was married, I'd probably go with "sorry, you're just not my type!"

  • or: "Why, you proposing?"

  • "Goodness! [simper, simper] We've only just met ..."

  • Or you could just say when asked if you are married "Yes, but I will get divorced if you think it would help"

  • Jan4363,

    A member said she felt much better after her divorcectomy :-D

    *Edit: actually she said husbandectomy!

  • Ha!!.....Do you think the thyroid community is missing a trick !!!!!!!!!

  • Jan4363,

    Some of the married ones may be ;)

  • All of these comments have made my day. :-D =D>

  • My GP told me and I quote "that my Autoimmune will eventually burn itself out and by then I will be old and fat so not to worry " unquote. This is after my TPO has been at constant 1000 (5.61) for 6 months

  • My Endo, when I was first diagnosed, told me I was too thin to have "proper Hashimotos". He would not say it now :(

    The adjective before the description is a code to the GP. It can range from "very nice", "pleasant" etc, to "worried" "upset" etc. The whole medical profession understands this code, which of course cannot be challenged. I have had "challenging" before now.!

    I farm. I told one "specialist" I had shovelled less b*ll Sh*t that morning than he had said. I did not ever see him again!

  • I've shrieked so loudly at your "b*llsh*t" comment that the entire town must have heard me. Would love to have seen his face!

  • Brilliant!

  • Thank you all for such a good laugh. It was very much needed today. Xxx

  • *dries tears of laughter* I shouldn't really, but some of the comments in this thread have had me in fits! :D There comes a point where you just have to laugh, it's all so dreadful! Thank goodness for a collective sense of humour. :D

  • Some of these replies really made me laugh. I know it shouldn't but what else can you do? One thing I was thinking as I was reading everyone's replies was 'I wonder if it would be the same if the majority of people with Thyroiditis were men?' I know that there are men who do suffer from it, but it does seem to mainly be women. And therein may lie some of our answer eh?

  • i really wish I could like this 100 times if more men than woman had this condition it would be a whole new ball game ! it's oh well you'er woman and you're all hormonal anyway why would we listen to anything you say, I'm a man and I try and say look this treatment isn't working and they look at me like well it works for most people and I go, well I'm not most people, the way they treat us is nothing short of a disgrace. I don't even want to talk to Dr's anymore as they don't care and just see us a problem, were mad or unhinged it can't be the treatment, funny how they are more concerned with peoples partners being able to have sex than they are with treating their patients.

  • Yes, so often got 'bonkers' responses and odd phrases in letters even seemingly complimentary ones e.g. 'extremely well read' which I read as code from one doctor to another to warn 'thinks she knows more than we do'. Really, her comments on your running speed and 'refusal' to disclose it would suggest she's saying you're not telling the whole truth i.e. an attempt to discredit you. I would complain about her inaccurate representation of the information you gave her. I 'refuse' to let them get away with anything. It's the only way I got what I needed from them. A few calm, well written letters to the right places can make them more careful of how they deal with you.

  • ribbon NHS doctors seem to have no accountability which is why they get away with rubbish treatment and behaviour. Nothing has changed since the Harold Shipman days I'm afraid to say.

    My letter writing has got me nowhere, am positive there's coding on my records which means that I'm treated with disinterest. The NHS Ombudsman just dismisses patient complaints preferring instead to defend the NHS. The only helpful organisation is the Care Quality Commission who's hated by doctors. Any complaints about a doctor means they will be bought up at the doctor's five year revalidation.

    Still, at least letter writing rattles doctors' cages and it may, just possibly, make them think twice. We all need to complain about shoddy doctoring!

  • "at least letter writing rattles doctors' cages and it may, just possibly, make them think twice. We all need to complain about shoddy doctoring!" - Yes, yes, I agree with you 100+ %

    They do take notice when a patient sues their NHS Trust ...Money talks better than anything else...

  • Kitten1978 thanks but how does one sue? I approached one 'no win no fee' company and they turned me down.

    As well as funding my own T3 I'm also funding Lyme disease, it's not sustainable.

  • I wouldn't sue. Call me a coward if you want, but I don't have bottomless pockets. For an example of how the NHS reacts to being sued, read this article about how the NHS treats their own staff when they become whistle blowers :

    Basically the NHS just appeals and appeals and appeals until the person who is suing runs out of money. The NHS may be short of cash. But when it comes to the law it has never ending supplies of money from the taxpayer.

  • Thanks humanbean, that looks to be a marathon read so will read in stages. The Daily Mail would love it!

    I certainly wouldn't be using my own money to sue and bitterly regret not recording consults as doctors involved have all lied repeatedly. I no longer trust any NHS doctors with my health and rely on my finely tuned bullsh!t detector.

  • 1. The NHS is actually quite neglectful towards their own staff, not only patients.

    2. Quite often a complaint made by a patient or a patient's relative is taken more seriously than a complaint made by a staff.

    3. It's a professional suicide to whistleblow unless one has already moved to a different job within the trust or a different NHS Trust.

    I do think that complainers are taken far more seriously. This certainly has been my personal experience.

  • Kitten1978 one only needs to look at how Dr Rita Pal was treated to realise that there are some seriously disturbed individuals holding positions of power.

    I'm pleased that your complaint has been taken seriously.

  • of course there are! One wonders what drives people to want to have power over others...

  • Thank you for the article!

  • It's a good question and I don't know the answer. I do know that some people sued NHS Trusts and they won but they were not thyroid patients. At the very least it does keep them on their toes. I wouldn't spend my own money to litigate either.

  • Lyme disease is another disease British doctors seem to be dismissive of and their knowledge on the subject is appalling poor. Which is rather shocking as it is treated seriously in other European countries.

  • Kitten1978 yes, agree with you. I've discovered that on an outdoor forum where I do post about Lyme, the GPs and other NHS doctors are all dismissive and reckon it's all in our heads. Utterly shameful.

  • I suspect it's because ticks, which spread Lyme disease, haven't been much of a problem in the UK until recently. Docs simply don't snow s**t about Lyme but instead of getting their knowledge up to date they blame the patients. It is shameful as medics are supposed to learn for as long as they practice. It's also a systemic fault as NHS fails to provide training about it. I'm also under the impression that there is only one place in the UK where tests for Lyme are carried out...

  • Don't you think the NHS has been in denial about Lyme, knowing fine well that it can't afford to treat people. Agree with you that doctors blame patients, they seem to stop learning once they've left medical college. Testing info:

    Do you have Lyme?

  • Hi Cinnamon_girl,

    No, luckily I don't have Lyme but I know somebody who has. The lack of knowledge about this disease among the NHS docs is shocking ;((

  • Indeed. The Royal College of General Practitioners has developed an online training course covering Lyme disease in conjunction with a UK Lyme disease charity. I understand the take-up rate is in the low, single figure percentage.

    They just don't want to know and, as you say, the lack of knowledge is indeed shocking.

  • most endos are off the charts

    read 5+ years ago the average endo worked off 17 yr old info. imagine. cancer treatment inc was easy compared with endocrinology - govts/ insurers are wildly stupid for tolerating it

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