I wonder if there will ever be an investigation into the woefully inadequate treatment of hypothyroid patients ( who again are largely female ).
Looking at the reports today (into the mesh that was used to repair women's insides, the use of sodium valproate and the Primodos pregnancy test ) and the fact that it has taken decades for the authorities to acknowledge that many women had been so badly treated, I suspect that it may not occur in my lifetime sadly.
All too often we seem to be refused treatment, told that our symptoms are all in our head and given one excuse after another when often all we want to do is feel well again.
Thank goodness for this forum, without it I dread to think where I'd be.
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knitwitty
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I agree because doctors are mainly men (although I saw one woman doctor and she was just as bad) and they see a woman who come in the door who is overweight and depressed and they immediately assume hormonal, depressed and over eating. I had "delusional" written on my records because I kept going back for 2 years with untreated hyperthyroid. I think there are a lot of untreated thyroid patients out there that doctors are fobbing off.
Yep. I had anxiety written all over my notes. It's an absolute scandal. I've also now known three women who have taken their own lives due to this maltreatment/lack of treatment/delay in treatment. It breaks my heart and it has to stop.
I agree with your thoughts that their bias because of ones appearance just blocks them from even investigating. I was/am a 5ft 8 size 10/12 woman with a thick head of hair and time and time again I know my appearance didn’t fit their perception of a woefully undermedicated thyroid patient. Most of my ‘feelings’ ie symptoms were fobbed off with discussions about how I was coping with 4 children. So Ofcourse I’d get angry. That’s my label now, the angry Irish woman who was nuts enough to have 4 children she can’t cope with. It takes every ounce of my humanity to treat the medical profession with respect and dignity. I hate them!
I know how you feel ... I have "delusional" written on my medical records when I was suffering from untreated hyperthyroid. Anyone reading that would think I had mental health problems and everytime I log in I see it still there after 10 years I feel angry and I have asked my surgery to remove it several times but they have refused!
😞 it’s just so sad. I definitely had mental health issues while hypo but surprise surprise they ALL disappeared when I was optimally treated 🥳
I haven’t seen any ‘notes’ on my medical record. It’s just test results and referral letters and replies. I wonder if there are ‘notes’ out there, I certainly had so many run ins with ‘professionals’. I’m so sorry you keep having to see the lies every time you log on 😩
I'm afraid there will be ... I actually worked for the NHS and worked in Medical Records for a time. I would request to see all your records because you are entitled to see them. I have just sent an email requesting mine when I was under an Endocrinologist about 10 years ago. I had to fill in a form and email it to them along with a copy of my passport . I might be back here again moaning about what he has said about me. I actually walked out on him when he offered me counseling because I felt so ill. He then discharged me from his clinic because I had done that. I then went to see Dr Gordon Skinner who helped me regain my health.
Oh, I forgot to add - it is worth specifying how you want your data given to you. I didn't specify and got everything on paper. I would have much preferred a USB stick or a CD.
Oh, be aware that there is no central repository of medical records. GP surgeries, theoretically, send all records from one surgery to the next when/if you change surgery. But hospitals have to be approached individually.
To get SAR, i asked at GP reception, they spent 15 minutes getting lost in their computer system looking for a link or something. I kept saying , "i can't do it that way , i don't have a smart phone or a printer , don't you have an old fashioned form in a filing cabinet maybe ?"
"I don't know , maybe" she says.
Receptionist turns round in swivel chair, opens top drawer behind her, flicks through contents for about 30 seconds....."ooh, yes this is it!"
"Just fill it in, and bring it back with 2 forms of ID"
The average endo... eek, counselling - think it's them that need help with their arrogance [aka ignorance]!
Dr Gordon Skinner - first saw him in Birmingham 10 Feb 2010 - then twice in his Glasgow [his home town] and last time I saw him there we danced a jig and sang a cheeky song about the English Don't make them like him any more! So glad he helped. xox
Yes he told a few jokes to my husband because he had quite a sense of humour and made me feel at ease straight away. Most doctors talk down to you but he had a lovely manner about him.
Yes, loved his humour - so open, confident and 'ordinary' - highly skilled people are like that. The haughty 'talk-down' types clearly have insecurity issues or they wouldn't need to wear the high-handed mantle of [false] superiority... which they certainly do. Quite pitiful really, trained as a doctor - someone presenting as ill before your eyes - so treat them shabbily because you can't deal with people, especially ill people. Oh, the irony! More to be pitied BUT when the health of people is at stake... the quality of their lives. Really not good enough.
A dear friend of Dr Skinner posted an obituary for him, if you haven't seen it do try to track it down. Maybe they have it on here? Such a fitting tribute to a great man.
Can't you change surgeries, doctor's clinics? As far as I know, you're entitled to copies of bloodwork results etc...just remove that piece of paper with the inappropriate comment, and give the paperwork to your new doctor's clinic....its maybe worth a thought.
We changed docs in North America, after being there about 10 years, but the doctor was off for a long while, and seemed a little mentally unstable, on his return. So, I asked ...said, that we wanted to change clinics. We were asked to pay $50 each (2 adults, 2 children) so $200 for them to fax the 4 files over, to our new doctor, but instead, I took copies of our bloodwork etc, and I gave them to our new doctors, saving 200 dollars. Maybe worth a try x
It is a bit different here and I live in a semi rural area and I don't want to change surgeries because I think the next GP will be the same because they have to follow NHS guidelines. I have Patients Access and can log in to read my GP records and results. However I want to see my hospital records which are kept in Medical Records at the hospital I attended for the treatment I received. The only thing good about the NHS is we do not have to pay unless we want to jump the waiting list to see a consultant quickly.
It is disgraceful that they cannot remove a statement that is untruthful. I wonder if your MP could ask why a 'wrong diagnosis' cannot be removed and the correct diagnosis entered as you have a problem with your thyroid gland not your brain.
I have given up with her because since her promotion she spends all her time in London. I will keep mentioning it every time I visit my GP surgery and perhaps they might take notice. At the moment I have applied for my hospital records from the time when I was treated by a rubbish Endocrinologist about 10 years ago. I wonder what kind of comments he will have made because I walked out of his clinic after he offered me counseling.
It's not just thyroid though. It's menopause too. The treatment of women going through bad menopause is horrific and a total gamble. We are currently seeing a raft of GP's refusing to prescribe what the menopause experts tell them to prescribe!
If you have the audacity to be having a bad menopause AND be hypo WITH a Dio2 gene defect stopping you converting T4 to T3 you really are done for. I know, because that's me!
I have to pay privately for everything. My GP will prescribe everything my menopause doctor and private endo has asked for so far, so I'm really lucky. But I'm sure there will come a time when questions will be asked.
Prior to my thyroidectomy I was thin and fit after my thyroidectomy I started gaining a crazy amount of weight at and alarming rate .... but according to my Endo, GP it was something I was doing and had nothing to do with thyroidectomy “my labs were optimal” laughable and then sent me to nutritionist who said I had a decent diet that she couldn’t see my diet being and issue and especially not this quick, weight gain from lack of exercise and poor diet don’t Usually happen overnight. ... even with this info from the nutritionist to my endo and GP and still it was something I was doing..... certainly was my body didn’t have the proper amount of thyroid hormones.
I don’t have any faith in healthcare especially when it comes to thyroid disease.
Me neither Batty1! I expect that most of us could write a book, on our treatment by doctors and Endo's....and readers would think that it we were a little nutty x
I attended a conference once where both Dr Skinner and Dr Peatfield spoke. Dr Skinner said if our GPs refused to treat us or told us it was in our heads we should burn their houses down because they were breaking the hypocratic oath.
It's a disgrace. I'm self medicating, thousands of us are. The last time the NHS had a go at treating me I'd been in bed for 5 months with the doctor telling me it was psychosomatic because my blood tests were "fine".
I went into hospital with an eye problem and the doctor wrote on my discharge note "patient is treating thyroid herbally" the complete derision with which I'm viewed is a testament to the arrogance and uselessness of the profession.
Yes I agree, along with the scandal of the Waspi women. Born in the fifties, no private pension, can't retire until we're 66 or older, no time or opportunity to prepare. Divorce settlements not taking this into account.
I would of handled it differently if I'd known what was going to befall me.
Women are so often disadvantaged and not listened to. It's a disgrace. Such sad stories from these three scandalous health problems and we know of so many more with the malfunctioning thyroid ones.
I won't get my state pension until I am 67 by then I might be dead ... just joking. I kept paying my national insurance even when I wasn't working because I was looking after my 2 children. Having said that I am lucky because of the NHS pension my husband receives every month.
I’d just like to say that being a man with hypothyroidism made no bloody difference, the attitude and treatment was careless negligent hidebound defensive condescending confrontational dismissive and a constant battle to be heard and respected. And I had this many many male and female medics. I don’t think it’s a gender issue it’s a Combination of personality issues (medics as humans exhibit all manner of inappropriate and damaging personality traits) and institutional bias which is turned against any group that challenges it, so appearing as ageism sexism racism or whatever. But It’s not about the victimised group it’s about the perpetrators - sociopathic, narcissistic, foolish, ignorant, incompetent, arrogant and plain old bullying types. All that compounded by flawed and inadequate management. We should call out the behaviours And the bad management, not lump it all into some generic prejudice. Fundamentally it’s about lack of professionalism in the sector (and elsewhere).
Hi everyone, I'm new to this site and haven't really posted anything before or introduced myself. My story seem to be the same as everyone else's on this site but you are all giving me so much more understanding about my and my son's thyroid conditions. I'd like to take this opportunity to thank you for that.
I agree with every word you say Hashihouseman and all the other contributors on this subject re the way our medical establishment behaves and the fact that men do not get any better attitude or treatment.
Autoimmune thyroid conditions run in my extended family, both men and women. Interestingly, some of them live abroad in two different countries and none have experienced anything like this so it makes me think that it is the British establishment who are to blame. The NHS forever complains of money shortages but all they seem to do is focus on costly, often ineffective and side effect loaded treatments, but most of all, they do not follow their own rule of "prevention is better than cure" never mind their own BMC's principals.
However, it is not helpful for us to just complain to each other, we should be focusing on changing their attitudes and maybe this is a good time, in the wake of Baroness Cumberlege's report. I think that most of them are just following the NICE (National Institute for Clinical Excellence (( lol)) 😫😥guidelines. Would that be a good starting point?
It doesn’t help us to make it a gender issue or an any group issue. We should focus on their actual incompetence and lack of professionalism and failings as established doctors not providing appropriate patient centred care.
😩 if it doesn’t affect you that way you’re certainly free to take issue the way you want to. For me gender bias gets in the way of most anything in life, address that and you’ll address incompetence.
Yes, absolutely. And there is a great deal of evidence to back up the gender issue, as detailed in the research by Caroline Criado Perez and Maya Dusenbery. I've been intending to post on this subject for quite a while but haven't been well enough. I will do it though.
I also object to people - in this instance a man - telling us that our perceptions of our experiences are not as we think they are. A good example of 'whataboutery'. We see the same thing happening elsewhere in society (BLM) when a specific group experiences discrimination, but others wish to deflect attention back to them.
I suspect its a combination of ignorance and fear of being sued; is there not some concept that hyper leads to heart and bone issues? So medics feel better to do nothing than do harm/get sued. Maybe if this angle could be looked at, it might be possible to stop them being scared of "over prescribing". I believe I have read that the ovetprescribing/heart/bone theory is a myth (if it is) then we might get some medication???
They ought to realise that being hypo and not having the energy to get up and move around for days at a time isn't much good for your heart either!
Hyperthyroidism can lead to problems because your whole system is revved up too much and that can put a strain on your heart and lead to bone loss, however most sensible people only want to have their hormone levels restored to "normal" not take so much medication that they would be way over the top of the range because that would make them feel unwell too.
Some of the ranges are so wide that I am beginning to think they are set that way so that they can say everyone, even very hypo people, are perfectly fine.
Totally agree that nearly all Thyroid patients are treated with scorn and patronising derision by doctors.
It also seems that where Thyroid issues are concerned, sexism and ageism are rife and blindingly obvious but of course are denied when challenged. It is a huge scandal that supposedly ‘professionals’ behave in this way and get away with it!
I’ve always felt that for any woman, from the time our periods start until we are literally dieing, everything medically wrong with us is termed as “women’s problems “! It’s a catch all diagnosis and nobody seems to think there’s anything wrong with a presumption rather than trying to actually discover what is wrong with us.
I see you're a Barrister, I'm a solicitor and have found with beaurocracy (mine was local authority planners) that the only way to make them do it"right" is to make it less hassle to do it right than wrong. For our planning dispute we got a kindly wealthy resident to bank roll a serious threat of High Court action and the ocal authority immediately collapsed at our feet. These Doctors are like planners in that they basically apply a set of rules and want an easy life.. So what I'm getting at is that maybe there is some way that a class action can be brought that will cost the NHS a shut-load of money. Actually you don't even need to get to court. We actually want proper training of primary care doctors don't we? . It's not rocket science. I think we might have Medical negligence on a systemic scale going on. A well recognised medical expert plus a friendly and big hitting/scarey QC would be ideal.???
The trouble is that there is very little medical evidence to base a medical negligence case on, no court would go against the majority. What we need first is evidence that thousands of us have been neglected and even then the medical staff will say they were working with within the boundaries that were in place.
Your right of course,.. and I'm too hypo/knackered to go on the warpath..I suppose I was thinking about those for whom tsh (the guiding light of medical folks) is not of relevance.... So for eg (as I understand it) in thyroid atrophy(aka late stage Hashimoto) where anti tpo antibodies have attacked and shut down the th. gland so that pituatory downregulation has kicked in. There are loads of these I believe. And this phonema is in medical knowledge.. (correct me if I'm wrong Admins) So you get low in-range tsh/t3/T4 which should be a flashing beacon for primary carers but they are not looking further than tsh.
So Greygoose is the best one to get the right of it when it comes to antibodies but unfortunately I can’t @ her on my phone but I’ll try to explain. The antibodies don’t attack the thyriod they are a result of.
So it’s the white blood cells that attack? TPO is leaked out and running round the body and do the body goes into action with anti- TPO to ‘ clean up’ So the presence of anti TPO is what alerts us to autoimmune diseases.
Underactive means a rise in TSH combined with a low in range FT3/4.
Perhaps what we need is publicity. As has been said here, in this tread, and before, there is nothing new or unknown about various thyroid conditions and the treatment for them, it's just a mix of ignorance and arrogance of the medical establishment, we end up being the victims though.
Absolutely, I think there was a campaign by Sarah Vine ( Michael Gove's wife ) a while back in the Daily Mail , she takes non conventional medication ( not sure if it was T3 or NDT) for her thyroid condition , but it all fizzled out very quickly.
I was thinking of contacting The Guardian following it's coverage of the latest scandal regarding women's mistreatment of the conditions I outlined in the original post, but when I scanned their contact details I wasn't sure who to contact.
The OP seems to have generated a lot of responses so maybe I'll have another look .
I agree publicity would be a good thing. The last 2 people i've talked to, about GP (lack of ) education on thyroid treatment, have both said "why isn't this a big scandal ?"
But then being realistic, there has been loads of news coverage on the prescribing of medicinal cannabis for really 'news catching ' stories of cute kid's having life threatening seizures. And the law has changed to allow prescribing ........... but i hear they still can't actually HAVE any
ie. we can prescribe it , but not in 'your' case. ~Similar to the current T3 situation
I think it will be hard to make unspectacularly non-functioning thyroid patient's seem exciting enough for the news. And the Tsh/FT4/FT3/Deiodinase conversion/ Central Hypo?/Thyroid Hormone Resistance? etc .etc. just confuses people who haven't spent months trying to understand it . They glaze over, and think "oh this is really scientific , i guess the specialist doctors must know what they're doing, and these poor people just don't want to accept what the science say's"
I'm afraid we're not 'sexy' enough...... which is also the reason given by medical students when asked why they don't want to specialise in thyroid endocrinology.
They want to learn about something with exciting new techniques or machines or drugs or ..... well anything that doesn't involve the dreadful word 'fatigue'.
I'd like to start by getting rid of that bloody word for a start , and make people have to describe the life limiting effect's in real functional terms...... like 'i am no longer safe to drive after 4pm every day' etc.
Completely agree with all you are saying, I just wish there was some hope on the horizon.
If I was being exceptionally cynical, ( hypothyroidism and cynicism seem to go hand in hand ) maybe there is an ulterior motive "survival of the fittest" perhaps us hypos will die sooner and younger hypos will not have the energy to procreate, very George Orwellian !
it doesn't work that way round in my family..... It's having the second baby that kicks it off, so we just end up hypo with babies to bring up....... although you may have a point.......my daughter has decided if she wants a kid she'll adopt one in an attempt to avoid the family thyroid curse.
I agree with you about cynicism...... i think it should be listed under signs/symptoms of late stage thyroid disease.
I actually think mine started after I had my second child, maybe some people get an autoimmune response following a pregnancy.
I remember hearing a programme many, many years ago, on the radio that said that MS can be triggered by pregnancy in susceptible people .
It's probably not too far fetched to suppose that pregnancy could trigger other autoimmune responses is it.
My youngest is now 22 years old and I was only diagnosed hypothyroid 2-3 years ago, though in hindsight I think I have been having hypo Hashi swings for years , it was never looked for or picked up by any doctors.
My mum has hypothyroidism and 5 aunts had it too, my mum has been fine on levothyroxine and does not appear to have any conversion issues, so I must have acquired the DIO2 gene defect from my dad.
My dad went many times to the GP with hypo-like symptoms and was always told everything was fine, but of course the only thing that was tested was TSH and possibly T4 so of course they may well have missed the DIO2 gene defect as they never looked at his T3 levels.
He died when he was 75 waiting for a quadruple bypass because of furred up arteries , he never had a high cholesterol in his life, I often wonder if I had known then what I do now I might just have been able to flag up his problems earlier on .
Obviously I would like to avoid the same fate as him, which is why I question every single word that comes out of the mouths of doctors, my mum thinks I'm a right bolshy witch... I'll leave it to you to decide if she's right or whether I should carry on as if the doctors know nothing!!!!
Pregnancy/birth makes hormones go though such dramatic changes, and also the immune system has to navigate having a 'foreign body' within yours, without killing it or you, so it doesn't surprise me it goes wrong if you are genetically pre-disposed to autoimmune probs, after all that messing about. Hence post partum psychosis, post partum thyroiditis etc.etc.
And it seems from your family history you are genetically predisposed to it . My family is very small so i can't be sure, but my mums only sister had Graves and a baby (not sure in which order!), and their mum was committed to an asylum for 5 yrs in 1930 very soon after the birth of her 2nd child , (who was the one who got Graves).
Sadly, now when i'm really interested, there is no one alive to ask.
i'm not sure there is any research on whether being a bolshy witch is genetic ,but i know my daughter was just as much trouble as i was when she was 14. My mum said it served me right.
She's very disciplined and responsible now though , which she did not inherit from me!
It seems safest to carry on assuming the Doctors know nothing , until they prove otherwise .
Have seen all the comments above and agree wholeheartedly with every one, I just don't know what we can do to make 'them' listen, maybe remove a few thyroid glands from the endocrinologists and see how they feel a few months down the line. ( only joking of course, but it would be interesting of course to see how they get on!!)
Does anyone know an endocrinologist who has direct personal experience of taking t4 and t3? Without it they’re the ones talking to the experts (us) and they should have the utmost respect for those of us that know what they can only theorise about third hand.
I don't know of an endocrinologist but I have my suspicions that the Dr ( locum) who finally agreed that I was hypothyroid and had probably been that way for years just might have had hypothyroidism herself, she also said that she had other patients on T3 at her main place of work. As she was only locuming at our surgery she was not authorised to prescribe it regardless of need.
My endo has written to the surgery asking my GP to prescribe T3 on 3 occasions now, they are still refusing saying they do not have any experience prescribing it and don't feel confident enough about handing it out as it's such a "powerful and potentially dangerous" medication.
Endo won't give it to me on cost grounds so I'm going back and forth trying to sort this out.
My MP was involved a few months back but that has all gone quiet because of coronavirus , the fight goes on but it's b****y exhausting!!
Wow! Usually the issue is the endo is reluctant to prescribe, having covered the GPs back the endo would expect the GP get on with it otherwise it’s entirely about cost over clinical need. Change your GP complain to the practise manger Complain to PALS and then the ombudsman. Every healthy thyroid produces t4 and t3 and so every hypothyroid patient should have access to t4 and t3 replacement. Denying this is effectively disability discrimination as well as medical negligence.
And BTW t3 is no more powerful or dangerous than many other (Completely unnatural) drugs they Prescribe. T4 can be just as powerful a force given its very slow clearance if you build up a significant overdose and taking t3 at appropriate doses is very easily monitored and requires the same responsibility for self managing dosing as any other potentially harmful medication, some of which don’t even need a prescription. It would be highly unusual for people to routinely overdose t3 because the effects are so unpleasant so quickly. Obviously individuals who have cognitive issues or otherwise can’t be deemed responsible should be prescribed t3 with the utmost caution or not at all. Making sure the prescription comes in no more than 5 microgram doses would also help!
I agree with everything you are saying, I was denied t3 on cost grounds by the endo originally, so I read everything I could and contemplated for a long time before I too the plunge to self medicate. I compiled a list of sign/ symptoms that all but disappeared when I started taking the T3 ( the endo told me to buy it myself on the internet if I was adamant that I wanted to take it, saying that it would bankrupt the CCG if he prescribed it!)
I also had the DIO2 genetic test , this was positive and showed that I had a difficulty converting T4 ( levo ) to T3 .
My blood tests on T4 alone showed high levels of Free T4 and low T3, of course I had to pay for those myself as the NHS does not routinely test T4 ( often) and T3 ( never in my experience).
Along with these results and the results of my observations the Endo agreed that I was benefitting from taking the T3 , that was when he first wrote to my GP to ask them to take over the prescribing of the T3 , he first wrote around Christmas 2019 and they are still refusing , now using the excuse they don't have the expertise to prescribe it , the surgery told me to complain to PALS , saying that if the Endo recommends it , he should prescribe it, I did this and they ignored me until my MP contacted them , the endo wrote agin to my GP ,all the keeps happening is the endo keeps writing and the GP keeps refusing.
Your story and your history is the similar to mine except I was lucky enough to have had compliant GPs. The endo did poo poo the dio2 gene test result However, despite it proving I was a partially disabled Converter! Didn’t stop them prescribing t3 though. There’s a special analysis of blood test results that can be done to see if someone is probably a poor converter but you have to be on t4 only for it to be valid. I trialled that and it assessed my T3 from t4 as clinically abnormal . I have to push my ft4 in excess of the top of the lab range to get a Near normal ft3 but I feel so unwell on that much levothyroxine I cannot sustain it. T3 is essential.
My t4 has fallen quite a bit since I've been on T3 so I have recently increased it and will re do a blood test in about 6 weeks .
I personally think it's a lame excuse of my GP saying it's too complicated to give me the T3 I have been self monitoring, very carefully I might add, since I started taking it.
I am not stupid and don't want to make myself ill, or stick thin! so I'm hardly likely to overdo it, therefore, if I can manage my condition I'm pretty sure he could , with all his knowledge and medical training!
Unfortunately we live in an area where it is extremely difficult to move to another GP practise, or I would move.
The doctors cannot and probably shouldn’t manage our condition. What they really should do is empower and support us to manage it. We shouldn’t have to fight the bastards every step of the way. If you can’t move GP You could try a gentle complaint via your local PALS and then up the ante until you get the support you need. I e given up with relying on them to monitor my condition, finger prick tests for whatever TFT I need as and when and then collect the evidence to persuade the clinicians to do what I want!
We should go on the warpath together Hashihouseman!
The powers that be are probably relying on the fact that inadequately treated hypothyroid patients don't have the energy or brain power to fight back sadly.
Ha ha yes, well, I have a massive complaint currently being reviewed by the Health services ombudsman after the hospital trust endocrinology department failed to address all these issues and more that I raised with them. This has taken 2 years to process, jumping through all their hoops. But today, as it happens, I arranged the case review with an officer from the ombudsman investigations team next Wednesday so I’ll see the whites of their eyes then. I also intend to point the ombudsman Officials to this website and the acres and acres of complaints about the management of hypothyroidism by primary and secondary health care professionals and healthcare policy makers. It’s a scandal that has been going on too long causing Countless lives to be distressed or put on hold or worse.
Wishing you the best of luck with your case, I hope you are successful, it is only through people like you that things may just change, hopefully for the better.
Yes, I did. And, in his own way, he was as hide-bound as the rest. He took Armour, and insisted it was the only way to go. And, didn't believe me when I said Armour - after reformulation - didn't suit me and I was ill and putting on a lot of weight. I stayed on it far too long because he insisted it would get better. But, it never did. I had to separate from both the doctor and the Armour, and self-treat with T3 only to get better.
It’s exactly the same. Those with diabetes know THEIR numbers. What’s high or low for one is not for another. I agree I don’t see why thyriod patients can’t have the same autonomy.
Oh, I agree we should have. I just don't know why we don't.
It might have something to do with them believing us all to be crazy and therefore incapable of coping with anything so complicated. They probably think we'll kill ourselves, and they'll be blamed.
Which goes back to the original posters topic. We can’t let a bunch of crazies loose with hardcore drugs!! 😬😩😂 we all know who the crazy gaslighting arrogant SoB’s are 🥳
Hi Knitwitty I agree with all the comments and at age 82 I can write a book about it.
For a while I have put on weight 13cm around abdomen and ++ chest which is causing me back pain. I told my GP, I was asked do you sit down a lot! it's only tissues! And yet i am hypo with hashi never had any other blood test apart from TSH, T4 and T3
I said I have problem sleeping on one count turned around 70 times. I was prescribed 14 tabs of Lorazepam remarks were to "relax her" is it surprising that many of us have Multi morbidity in old age
I was offered counseling by my Endocrinologist because I felt so ill. I could just imagine the conversation between me and the counselor ... "How are you feeling?" Me "Well I am balding, some of my nails have dropped off, I have blurred vision, my knees hurt, my skin is dry, I can't smell or taste anything and I don't have the energy to get out of bed or even shower" I didn't take him up on the offer but one GP actually made me an appointment with a counselor which I cancelled. All I needed was treating not counseling or anti-depressants.
I think health issues that affect largely women definitely receive poorer care, less research funding etc. I also think that if the issues affect a lot of 50+ women (like stress incontinence, thyroid etc), we are invisible!
Share some of your favourite quotes from medics, allow me to start:
“Your TSH is within range, theres no need for anymore treatment, you should be completely fine now...”.
“Well Hashimoto’s disease is well understood nowadays of course...” (uh but not by you though obviously- I said to myself)!
“Maybe there’s something else wrong with you, maybe your palpitations and dizziness is merely a panic attack”...
“I think we should lower your T4 actually, even though I know you say you still have symptoms”.
Well, really! What do you expect? Everyone knows that women are hysterical hypochondriacs who think that they should be healthy and bursting with energy when they are as old as 35 and no longer young women (I was told that at 34!) Go out and clap for your wonderful NHS who never, ever, do anything wrong and always act in the best interest of the patient - and don't forget your anti-depressants, dear. Right, I'll get my coat.
I must admit, I never "clapped for the NHS". I'm not aware that anyone in my street did - I certainly never saw it happen, and my husband (who can hear better than me) didn't hear it either.
I thought the whole clapping idea was a bizarre one. What medical staff needed was proper equipment to help them to stay healthy. Clapping was just an empty, pointless and patronising gesture that wouldn't keep any of them or their patients alive.
The whole clapping thing reminded me of my time using Facebook a few years ago (I deleted my account ages ago).
I used to receive adverts and posts that said things like...
"For each Like this post receives Facebook will pay one cent, 50 cents, a dollar to the surgeon who can fix this sick child". It was clearly totally pointless and dishonest and I can only assume that the scam artists who created these posts used the list of people who liked these type of posts to find out who is gullible and who might be easy to scam.
Me neither.... i wanted to clap because they deserved it, and more (more staff, more wages, more PPE)... but i couldn't bring myself to do it because i felt like i was being manipulated into some mass encouragement of 'cannon fodder'
p.s I'm proud to say I've never ventured into 'facebook land', and most of those who said i should seem to have left it now.
I refused to go out clapping despite the fact that the nurse next door who personally treated me so well in hospital just a few days before was out the clapping like mad every week and looking round to see who was outside.
I could also not bring myself to clap. I’m grateful for the work the NHS has done to care for those severely ill with COVID. But all I see and hear elsewhere is about the mismanagement of people who really need help. I’ve personally had 35 years of being looked at like alien from another planet each time I’ve turned up with symptoms of tiredness, weight gain etc, etc. I’ve had everything from “maybe you’re on the CFS spectrum” to “ah, your cholesterol is somewhat high” to “try reducing your carbs” and “how about some anti-anxiety medication?” So, no, I unfortunately cannot find it in myself to think of the NHS as heroes right now. (And don’t get me started talking about those -ourselves included - whose treatment has been put back because they’ve been unable to manage a crisis alongside running their day-to-day operations as every other organisation has had to do.)
I have never clapped and I used to work for NHS. I did notice my neighbours gave me a look when I looked out the window at them all clapping away and even letting fireworks off. It is a pity the NHS didn't treat thyroid patients as well as Covid-19 patients.
Whilst I agree that the NHS is sexist and agist, I think you're all missing a vital point where thyroid is concerned.
As you all know, thyroid symptoms - be it hypo or hyper - are non-specific. They could all be caused by so many other things. You don't have spots, that can be identified by size, shape and colour as being caused by a specific disease. You don't have pain in a specific area that can be identified as being caused by a specific organ. You can have many and varied aches and pains and rashes that could be due to a number of things. And, as you know, doctors are not trained to trouble-shoot, anymore, or use their intuition. They are trained to prescribe drugs. So, when faced by a number of symptoms, their approach is usaully to treat each symptom as a separate disease and prescribe a drug for it.
And, in that way, Big Pharma makes a pot of money! We are the milch-cows of the pharmaceutucal industry. Take statins alone. How many doctors know that high cholesterol can be caused by low T3? How many doctors know that cholesterol doesn't cause heart attacks and strokes - or even that the body actually needs cholesterol for all sorts of reasons? They treat cholesterol as the enemy, the same as they treat calories: the less the better! And, how many doctors know that statins can do so much damage?
So, BP is making a mint out of us! Several mints, in fact. And, they'd like to keep it that way. To that end, they finance medical schools - they can afford to do that with just the money they make out of hypos alone! And, he that pays the piper calls the tune. They decide what doctors learn. And what they want doctors to learn is that hypo is no big deal - probably doesn't even exist, anyway, because all patients are stupid and liars and attention seekers, be they men or women. And those that think they have a thyroid problem are obviously delusional to boot! After all, they get anxious and depressed, and that's all to do with the brain, isn't it? So, stands to reason, they're all crazy! And, we don't have to make them well because they aren't even sick. Just give them an antidepressant and a pat on the head, and send them away, for goodness sake!
Can you imagine how much money BP would lose if doctors made us well? Not more need for statins, antidepressants, blood pressure pills, diet pills, anxiety medication... They can't have that, can they! So, whilst BP is in charge, things are never going to improve. Doctors are never going to get a decent education in thyroid. They are never going to take us seriously and want to make us well, because BP is telling them we're all barmy. Of course, you could blame doctors themselves for not looking further than the end of their nose, and working things out for themselves. But, logic and personal thought aren't encouraged in med school. It's a bit like a cult. What you learn in med school is sacred and never to be questioned. It has to be right or there was no point in going there, and I wasted seven years of my life?
So, things are complicated, and not likely to change any time soon without a total revolution. And, they know that's not likely to happen because we're sick and vulnerable people, with no-one on our side. Well, practically no-one, anyway. And those that would challenge the status quo are swiftely dealt with...
But, I've gone on long enough. I'm sure you get the picture by now.
The same comments apply to nutrition and diet. These are not taught beyond the following bits of nonsense :
1) Eat less, move more.
2) The only things that matters for weight is "Calories in, calories out."
If people learned how empty of nutrients processed food usually is, and what symptoms are caused by nutrient deficiencies, they might start caring about what they eat. And that might make all sorts of companies lose money. Can't have that, can they?
I agree wholeheartedly GG. And while they're receiving financial paybacks from BP for prescribing all the useless stuff we don't/shouldn't really need, they're never going to find the incentive to keep us well, which is what they should be paid for! The system doesn't work for us, and their actions make a mockery of 'do no harm' . If we all handed in a customer satisfaction report that they could be judged on, most of them would be out of business. None that I have seen in the last six decades would get a five star rating out of me!
When I was about 69, almost all my hair fell out in one go, in the shower once day. I went to the doctor, wearing a woolly hat, and whipped it off dramatically, expecting a gasp of horrified surprise. He didn't bat an eyelid. Well, he said, what do you expect at your age?
I said, look, mate, your waiting room is full of little old ladies, some of them probably even older than me, and not a woolly hat in sight! He just shrugged. Didn't even notice my sarcasm. I wonder if he was aware he had a patient in front of him, actually. He was far more interested in his computer screen.
I do understand. In the past I had worked in 3 general practice. These days i am ashamed how some practices behave. We get more satisfaction from supermarkets when things go wrong.
Well, in supermarkets they tend to take our complaints more seriously. Doctors get away with labling us as crazy, so no-one take any notice of us. Difference between the customer is always right, and the patient is always wrong!
I spoke with my gp yesterday who is baffled with my symptoms as my blood results are all ‘satisfactory’. She then suggested chronic fatigue syndrome. That was the point I knew I only had my private endo to rely on.
They're not taught about symptoms in med school. At best they will know the basic five: fatigue, weight-gain, hair-loss, depression, feeling cold. At worse, they won't know any of those, either!
They're not taught how to use the heads when interpreting blood test results, either. They believe the ranges are set in stone, and that anything within those ranges has to be perfect. They aren't capable of independant thought (for the most part) so cannot accept that as the ranges are so wide, you couldn't possible feel the same at the bottom of the range as you do at the top. It's all or nothing for them.
Yes, that’s a fair assessment. To be fair to gp I think she genuinely doesn’t know how to help and prescribing protocol/ranges within nhs have her hands tied. It must be frustrating for some gp’s too.
Yes, but I'd be tempted to say that she doesn't have her hands tied as tight as she thinks she does. Even under the NICE guidelines (which are not the same as rules!) she is allowed to use her own judgement. She just doesn't know enough about thyroid to be capable of using that judgement.
Yes they’ve tried to pin that label on me too. That and fibromyalgia. Absolutely refuse it! Surprise surprise all my symptoms disappeared after I was optimally treated.
Amen kitwitty. We mustn’t stop fighting though. I felt completely beaten recently and I saw that news item last night, it gave me a kick up the bahookie. I know a women who had the mesh procedure after a hysterectomy and she’s been in pain ever since, many years now. It’s just not tolerable but I suspect is related to the number of MALE gynaes. What the hell would they know about being female?
What I wonder is what the hell did they know about this mesh and the other rubbish that they continued to use, whilst consistently denying there was a problem, all because some bigwig at BP told them it was all fine and dandy? It's heartbreaking how people are treated under this medical regime😥
Exactly Mamapea. So many women now left in lifelong pain and unable to live a full life because of damage Genito-urinary organs. This has been going on for decades in gynae, we’re treated like animals. I had to have a uterine polyp removed a couple of years ago and the bloody rep from the company who supplied the ‘new shiny machine’ that does removal, was in the room - A MAN. It’s get your legs in the stirrups and let’s have a rummage, from periods - childbirth - menopause. I’m sure if men had to have implements rammed up their anus or urethra on a regular basis they might have some more understanding. One little prostate check and they’re running for the hills!
The 'excellent ones' we knew have died or had their licence withdrawn. Doctors such as Dr Skinner, Dr Peatfield etc and others who were trained as they were before blood tests replaced doctors' knowledge of signs/symptoms..
1. Due to the fact that my mother's doctor told her she no longer needed B12 injections as her 'bloods were fine'. My sister and I thought that was 'good' - little did we know the hell we'd go through when mother died of stomach cancer and the distress we went through when insufficient pain relief was provided - it was eventually given but not without a fight.
My daughter, complaining since before 5 years of age and taking her here, there and everywhere. Around the age of 10 I said to the GP that my sister had Rheumatoid Arthritis and he 'shouted' at me for 'putting ideas in her head'.
She had a huge flare-up when around 18 - and hospitilised and then diagnosed. She has now had operatitons on toes/fingers/elbows/ankles/knees and is unable to walk unaided.
Despite going to the doctors many times myself, and being given several wrong diagnosis and even an operation for something I didn't have. I had to diagnose myself - one day after GP told me there was nothing wrong with all of the tests he had taken - pity he didn't notice a TSH towards 100. I then diagnosed myself the following day and another doctor phoned to ask who'd given me the blood test form and I said I requested it.
I don't think it's a women's problem, I think it's a GP education problem that happens to affect more women because thyroid probs affect more women.
But then.... i was a 'tomboy'..... who never grew up..... shopkeepers could never tell if i was a girl or a boy..... some people still can't........ I shaved my head in my 40's and had loads of fun being 'androgenous'.
So i only have experience of being treated like a 'person', and only deal with others as a 'person'......... And in matters 'thyroid' , i do think the way i've been dealt with is noticably worse than for any other medical/psychological issue.
We are a really easy group to pick on though ........Even if we get it together to complain properly , we'll be too knackered to follow it up , and i think they know that.
The woeful mistreatment of hypothyroid directly effects mostly women, but also has a devastating effecting on those women's children, partners and families. I am on disability benefits but would dearly love to be in full time employment and take part in life. Health unlocked has and still is an credible source of information and support to me as a hypothyroid patient
of 32 years ago since the birth of my first child.
Like many, I also self-medicate and as a result was able to go back to work and resume my life after 10 years of difficulties (hypothyroid). When I first told my doctor that I was taking NDT I was shocked that he actually didn't know what I was talking about. Since then he has told me to 'keep taking it' as it is working - no attempt to educate himself about it though and says that he cannot prescribe it.
I think the appalling treatment of thyroid disease will be a future scandal. Has there ever been an enquiry into this?
"When I first told my doctor that I was taking NDT I was shocked that he actually didn't know what I was talking about. Since then he has told me to 'keep taking it' as it is working - no attempt to educate himself about it though and says that he cannot prescribe it."
And therein lies the problem...I know Gp's are busy and have to deal with a myriad of different conditions but it seems that so few are willing to even try and understand the condition or educate themselves.
I would have a lot more respect if they just said "I don't know ... but I will look into it" and God forbid they could even ask the patient if they know anything about the condition they are living with, a genuine dialogue could then open up between patient and Doctor.
There was a bill going through the Scottish Parliament regarding treatment , or lack of it, for hypothyroidism and the use of T3 as part of the treatment regime but I can't remember what the outcome was now, I have a feeling that T3 has been approved for use.
The thing I find most sickening is that so many people are living half lives due to under or absence of treatment which must blight the lives of these people along with their families.
Many of us on here have taken matters into our own hands after careful consideration of the pro's and cons of treating ourselves, but we should not have to , and there must be thousands more who don't know about this forum or who have no one to turn to for help. They are being failed by an out dated system which does not recognise or acknowledge their needs.
I wonder how long it will be before this current scandal is brought out into the open ??
Completely agree about living half lives. And yes the system is outdated - I think we're still using a 1940s model with GPs as gatekeepers who can't be questioned, yet nowadays we can inform ourselves from various sources. So there is a potential mismatch between doctors who have all the power and patients who might nowadays have all the knowledge about their condition.
What is also so sad is that up until the 1970's NDT ( natural desiccated thyroid extract) was used to treat hypothyroidism and doctors increased the dose until the patient was symptom free, in those days doctors were treated like Gods but maybe with NDT fewer patients felt the need to complain because the doctor treated them with increasing levels of NDT until they felt better.
The God syndrome has persisted but not the knowledge base, I fear.
We seem have gone backwards with regard to thyroid problems, whether that is due to the undue influence of Big Pharma ( who like to keep us sick and on a whole raft of different medications to treat the symptoms we can't shake off with Levo alone) or just general ignorance on the part of the medical profession I wouldn't like to say.
What I think is even more appalling is that NDT was withdrawn -without notice - by those we'd expect to know more than us, Unfortunately, due to misinformation by those we would expect to be more knowledgeable than us, the patients, have made appalling decisions about what should be prescribed for hypothyroid patients, i.e. levothyroxine alone to be prescribed.
Withdrew NDT - prescribed since 1892 and the very original replacement and which saved lives since that year but withdrawn through misinformation by the Authorities.
Withdrew T3 (liothyronine) instantly and without warning (I think they were just waiting for some excuse - and the rising costs was the excuse. They should have investigated the reason for the increases.
Despite Dr Lowe's Rebuttal to the British Thyroid Association and requesting every year for three years (Dr L was also a scientist and expert in the use of T3) they never had the courtesy to respond.
A specialist of fatigue problems said I had probable Chronic Fatigue Syndrome and offered me Cognitive Behaviour Therapy, some 30 miles from home! I refused this....I would have had trouble driving that distance and making my mind think differently would of not effected my Hashimotos which is still NOT my official diagnosis.
I know, I was surprised, that was years ago. It didn't do me any good. She also said I have to pace myself to conserve energy. I self treat now. What bugs me is the GP's notes on me. I shouldn't let it bother me. The NHS only measure my anti-thyroid peroxidase antibodies which are low but private test shows very high Thyroglobulin antibodies, what chance do we have if NHS don't even take the measurement.
I insisted my GP put my high antibodies results from medichecks on my online records because NHS labs would not test them. He said that he would but they wouldn't make any difference to any treatment I get which was nothing because my TSH was in range.
I mentioned in another thread that a surgeon would not perform a breast cancer operation without doing a mammogram, an ultrasound, a needle biopsy , a raft of blood tests but somehow a condition such as hypothyroidism , which can often be complex and due to a variety of causes and/or deficiencies somehow can be diagnosed and treated just by looking at TSH and if you are very lucky Free T4.
That's such a good point. The thyroid rules or effects every cell in your body and it's complex interactions with so many organs yet as your eloquent points make let's just check the TSH! ...although Cancer is insidious.
Oh, don't worry I'm not trying to play down the importance of cancer, my younger sister got breast cancer 16 years ago and had a lumpectomy, in Jan/Feb this year she got it again , same breast and had to have a mastectomy.
This was going to be cancelled due to coronavirus, because she was to have reconstruction at the same time.
Her original op was due to take place on April 1st, she was told that she could wait and have the op at a later date as the cancer was so "early stage" but she opted to have the mastectomy without reconstruction, This took place on the 27th March, following her op the operating theatre closed to get read for the virus.
She was only in hospital for the day and she is almost completely back to normal minus the breast of course.
I just hope she doesn't get hypothyroidism now as we have a very strong family history of it!
I am sorry to hear about your sister! I just don’t understand the postponement of surgery during Covid!! It boils my P! 😩 putting lives at risk. My FIl has just been told by urology - no surgery because of Covid. The man has prostate cancer and probably only has 6mths left and they aren’t going to make him comfortable!! They are of the generation to just say oh well but I want to fight it!
I don't want to be too pessimistic but I suspect many more people will die or become seriously ill due to the NHS not functioning for any other conditions other than covid.
A very sad state of affairs. I hope your FiL get all the help and care he needs.
Don't worry .... i went to see them..... you didn't miss much! Pacing will help you manage , but it wont replace thyroid hormones. CBT was insulting. And Graded Exercise Therapy (GET) can be harmful and is now discredited.
I just looked at the NHS link Lora7again has given, and i'm appalled that GET is still on there.
As a young (I was 18-23 all the time I kept going back begging for help and being treated with increasing annoyance) woman and also one that has significant weight loss as a hypo symptom the two main focal points for doctors for me was a) pcos which they apparently believed was the cause of everything from constipation to crushing fatigue! And b) anorexia - the last one makes me so angry because I would eat and eat I was so hungry but I could tell they didn’t believe me. It made me so angry I wanted to cry every time they tried to push a nutritionist on me.
I also had another experience I will never forget: I had oral thrush in 2018 as I also have neutropenia with my hypothyroidism and that’s a known symptom and it was CLEAR I had it - disgusting thick white coating on tongue, everything tased funny and I couldn’t eat - even small pieces in soup would get caught in my throat so I was eating strained liquids it was awful. I went to see a doctor and was seen by an ambulance guy who believed I had it and was about to prescribe nystatin when he checked with a doctor. Said the doctor wanted to see me and I was immediately like ‘oh no’ as I had seen this doctor previously with no help given and he brought up my (not that bad) acne - NOT what I had gone for an appointment about and said he could prescribe me medication because he knows how it could hurt my self esteem!?!
He then decided I didn’t have oral thrush because it’s “rare” despite me explaining I had neutropenia to which he said “well it’s low but there’s no guarantee you have it” despite me having been refered to a haematologist. He then said I probably had Barrets esophagus despite me having NONE of the symptoms and explaining the throat symptoms were in the nasopharyngeal region not in my lower throat but he was convinced said give it 2 weeks see how it goes and sent me off as I tried to explain through tears that I physically couldn’t eat. I went home in tears ran straight back up and thankfully got a female doctor to prescribe nystatin over the phone. Within a week it had cleared up and I was fine. Makes me absolutely livid still thinking about it today and that was the tip of the iceberg... one time I cane out with 6 useless prescriptions for various things 😂
It makes you wonder what they actually learn when they are training to be doctors when you read about such experiences.
I know the human body is complex but I think it takes about 8 years to train to be a GP from when they start medical school so you think they would know a bit more.
Absolutely! It is quite frightening! My mum has been with me through all of this and it’s really shook her confidence in doctors too. She almost gets angrier about it than me! 😂
The thrush episode was the first time (and far from the last time) I really began to question how much faith I had in doctors!
Equally as bad in the U.S. here. My symptoms of fatigue were ignored for almost ten years ....until I ended up with a golf ball sized hurthle cell adenoma. Lost half my thyroid due to a partial thyroidectomy. I've been to countless endos and they were extremely unhelpful. Only when I went out of pocket to a functional medicine clinic and an obstetrics Dr did they finally acknowledge there was a problem with my T3 levels. My previous general physician ran blood tests twice a year and even though I was suffering from the worst hypo symptoms, as evident by my obvious declining T3 levels, he kept trying to diagnose me with fibromyalgia and run tests for arthritis, xrays of my neck, even sent me to a physical therapist! I'm only 40! The current treatments are so outdated. I'm currently on medical leave from work because my thyroid therapy is not sufficient. I don't wish hypothyroidism on anyone.
just came across this and wanted to add that i raised my case with former MP who is also a doctor, she put forward representations to CMA who are investigating over charging of NHS for t3 ( i think it went up by 7000 percent), whilst it didn’t change my situation short term i felt telling her ( an MP and doctor) about my situation could change hearts and minds slowly. the CMA also accepted my case as a case study (self medicating after nhs ignored my thyroid issues and spending thousands on NDT private tests etc- while raising a child alone on charity workerwages). i’ve now taken this to my new local MP and asked her to take the case up with health minister. i’m nothing if not persistent
on the issue of women being treated badly (especially when in my case i presented as overweight puffy and tired) i agree it’s not ‘sexy’ enough for some to give a crap.
i’ve emailed women’s hour on radio 4 twice asking them to feature the issue!persistence will ensue there too
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Don't make them like him any more! So glad he helped. xox
Thyroid extract - The End (as still seen by the NHS)
Hostile environment: have you been denied treatment by the NHS?
Update: T3 usage & monitoring by NHS 
