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Thyroid UK
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Legal help required- local surgery threatening to strike me off their list because I’ve challenged their Hypo protocols

Hi all. Feeling extremely bullied by my local GP. For the last two years my health deteriorated and I knew that Levo- only treatment was at the root. The worse I became, the higher dose I was prescribed. This summer ( after losing handfuls of hair etc!) I had enough and paid thousands for extensive tests privately. These were not accepted at my surgery in spite of showing a conversion issue, severe vitamin deficiencies, low hormonal levels- everything that would support poor thyroid function. I was being pushed into taking antidepressants which I took pains to explain I didn’t need. I complained via emails several times over many weeks, sending links/ videos/ reports to many features cited on this forum... and now- the response is that I should look for another surgery ( we live in a small village with poor transport and I don’t have a car!)

The manager has also told me that I’ve been ‘aggressive and threatening” to staff and quoted a number of things I’d written- ‘ would you treat me wish such unprofessional disdain if I was your wife, sister or mother?’ ‘ I would like to help educate you on how the thyroid works so that others don’t have to suffer what I’m going through’ and ‘ I will take this to my local MP if I have to.’

The bottom line is that I’ve never been rude to any of their staff ( even when I knew I wasn’t being listened to.) No one has ever complained about me because I have been nothing but courteous and polite. There have been zero complaints about me since I’ve been attending the surgery. So the reason for this is because I’ve challenged the head of GPs and took him out of his god-like comfort throne.

I cannot afford to be without a GP because even if some are uneducated when it comes to the thyroid, I still need bloods and prescriptions which I’m supplementing with Metavive. I also need to have the ‘aggressive and threatening” label removed from my records because this is damaging to my reputation going forward. Also the ‘refused to take antidepressants’ ( When depression and no mental health issues have ever been diagnosed!)

This is next level dictatorship and I refuse to be bullied like this! Do any of you have any suggestions?? I am innocent of any wrongdoing and all I want is for them to treat me properly and with the clinical care they are paid to! I have written to my MP but not sure what he will be able to do...

Thank you in advance for your help x

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I can hear you Piggyoink, but have no leagal suggestion, sorry.

I got a phone all from my GP today, telling me to get off my THYROID meds ASAP because my blood reading is off. dic#head! I take NDT (self medicating, as my t3 tyroxin tab was challenged, and I told him! )

I hope you get very helpful advice.

I live in Australia.

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Thank you so much for your words. They mean a lot. But I am definitely going to take this further. This cannot be the way we are treated. It’s beyond criminal. X

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good luck and clear mind. you are in your rights, you need the black mark off your papers!

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I thought tertroxin was still available if you don’t ‘qualify’, just more expensive?

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Hi Piggyoink

I’m so sorry to hear you have been treated so unfairly by your GP and the practice .

I have just had to change my GP and move surgeries because of exactly the same treatment ! I got to the stage when I realised the GP were only treating me with my TSH and one Dr had the nerve to say sorry your not well enough to go to work (I was suffering from chronic fatigue and exhaustion) but he said I can’t put thyroid on your sick note now because it’s in range my tsh was 5 !!!!! an that’s normal ! I walked out his office and said if I stop my thyroxine my tsh will shoot back up to 10 it’s only normal whilst I take the medication :(

I walked out and made arrangements to change my Dr after over 25 years ! I dreaded going because none of them understood

so I now have blood tests through medichecks which are ok and I found another practitioner to help with my Thyroid.

I notice if you are taking Metavive you can always get a telephone consultation from Dr P on Fridays who will guide you and help you to get well :)

You are not on your own in this awful situation of drs not understanding or treating you properly it’s happening to a lot of us :(

Take care and good luck I hope you managed to sort things 😀

Kazbe x

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Dear Kazbe thank you for taking the time to write and share your story. This is horrific. An absolute travesty of where the NHS is heading. I am really getting ready to fight... not just for me but for the thousands of people who are given no voice and treated like criminals just because they don’t fit into GPs narrow view of education. Absolutely awful :( I wish you better and I hope your new GP is more sympathetic. X

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Contact these people pohwer.net/

they are a charity who advocate and take action, i took my first endo to ombudsman with them. The endo dept and hospital complaint people paid lip service so i got these people on it. You give the info and they sort it, they came with me to mediation meeting etc and take no prisoners. They specialise in medical complaints, the tune of the hospital soon changed when they got involved. I got full apology for most stuff except the endo calling me obese saying i couldnt have adrenal insufficiency which of course the test was very low under range, she also said she didnt believe all people without thyroids needed medication at all.

I also have rude and shouting behaviour on my records, i dont care as i did shout at the practice manager, toe to toe, she failed to say she was rude as well. That dr stopped practicing 6 months after i got a 2nd opinion.

I went through 5 years of rubbish treatment where i nearly ended in a coma, if i knew then what i know now, opens your eyes doesnt it. x

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Wow endomad what a horrible experience but I’m so glad that you were vindicated!! Awful people!! Thank you so so much for this information... wishing you all the best xx

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This is the BMA guidance to GPs about removing patients from their list, and how they're advised to give a warning etc bma.org.uk/advice/employmen...

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Thank you so much I’ve had a look at this and I haven’t been given a warning as such, just told I may be better off looking for a new practice ( when they know there aren’t any near by!) Oh- and because ‘it’s clear the patrient- doctor trust has broken down.’ Bleugh.

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Ah yes, the old “trust has broken down” because they don’t trust the patient? Of course not, the patient doesn’t trust the medical staff to provide the right treatment because he can demonstrate they don’t, what have the practice with which to counter that? The use of words to try to smear the patient as a troublemaker and non-compliant with their learned doctor’s diagnosis never mind if it’s true. Makes me so angry.

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Non compliance are the key words here. In the last few decades of seeing doctors I’ve never ever had anyone complain about me. At this ‘new’ practice where I moved to a couple of years ago and mybheath started to go truly pear shaped I saw 6-8 GPs and locums, plus a handful of nurses when they checked my bloods. Not once did I complain, challenge anyone, not even a hint of anything other than gratitude and politeness. But as soon as I’ve complained- and send numerous emails with necessary studies and facts- I have now become some insufferable and abusive monster. Because I was no longer ‘compliant’ or a good little patient opening up my mouth to munch on antidepressants. Amazing. Truly Orwellian!

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I’m not sure if they can help, but could you try the Health Service Ombudsman?

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I will call them later today, thank you x

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An Ombudsman generally won't step in until the formal local complaints/resolution procedures have been exhausted.

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You should speak to your local health authority as they regulate the GPs.

Regarding you actual thyroid problem sounds to me like you should be referred to an endocrinologist. Most GPs won't go beyond prescribing levothyroxin. Insist on a referral

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No longer a Health Authority,in hands of CCGs made up of GPs

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Hi Treepie could you kindly explain more? X

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Each practice operates within a Clinical Commissioning Group of which there are about 195 I think (although some are merging to form bigger ones) responsible for local healthcare commissioning. Things changed in 2013 and now there are NHS Foundation Trusts and NHS Trusts delivering emergency care, ambulance services etc.

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MaisieGray has explained.Health Authorities ,local and regional were abolished when Primary Care Trusts were established now themselves replaced by CCGs in a crazy series of reorganisations costing millions in redundancies etc.

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I had to insist I was referred to en Endo after almost two years of misery! X

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Even when we had HA's Lexie26 its not true to say that they regulated GPs. GPs are independent business owners delivering services to the NHS within a contract; so their performance was quality assured within the terns of that contact etc, but it's the GMC that regulates Drs.

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Ask your MP to help you.

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I’ve written to ask for a meeting so let’s see where that goes... thanks for your suggestion x

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I'd try your MP. Some are really helpful, ( had brilliant, very fast assistance from one many years ago) others ( like mine now!) useless.

Also, as suggested, the NHS Ombudsman.

And be well prepared to state your case. Print out copies of everything you've ever sent to the GP. Print out or copy all medical notes where you think you've been mistreated. Print every guideline that shows your GP has acted wrongly.

( I once won a case brought ( wrongly) by an ex employee as I had pages and pages of evidence that I was right. Saved me £1000s )

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Agree, the one thing you need is evidence, as much as you can dig up, dates and times and any witnesses although that’s may not be likely in this case. I’d do a ‘time line’ of everything that has happened.

Would also contact your MP. Hopefully you can get things sorted out although I imagine you definitely won’t want to have to deal with that doctor in future.

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The worst part is that outside of this one arrogant GP ( who I’ve never seen until the complaints meeting!) I’ve never had a cross word with anyone at the practice. I’ve never had any issues with anyone even when I knew they were missing something. Hence why I paid for the private tests. So when I challenged the GP and practice manager they made a blanket move to acuse me of being aggressive and threatening to ALL of their GPs when I’d never questioned anyone else. And when there have never been any complaints made about me after having seen around half a dozen GPs and nursing staff in the last two years without any issues whatsoever. It’s farcical. X

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That's a well known "fogging" strategy--- you've done nothing wrong but question them, they don't like that so throw a blanket of fog over the matter by accusing you of being rude, aggressive. They're hoping that will shut you up. They have to give you notice that they're de-listing you, so they're hoping the threat of this will stop you in your tracks.

When you present all of our evidence keep calm, with a very faint smile on your lips. If anyone interrupts you while you're speaking, pause, slightly raise your eyebrows and continue as if they're an irritating child. (masters in business management :) Knew it'd be useful one day)

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Piggyoink....The GP seems like he has a personality deficit, I feel for you. I had incident 7 or 8 months ago with a Endo who told me that I'm unhappy without a thyroid and should seek a psychologist because he couldn't help me anymore my labs are "perfect" so I canned him got a new Endo and he had the nerve to call me out of the blue to tell me my numbers are awful I'm going to die from heart disease and my bones are going to crumble....can you picture that. I filed a complaint against him for harrasment and banned him from ever looking at my medical information I haven't heard from him since. Is your GP the only one in the practice?

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What an awful experience for you @canyouheartthat ! i'm so sorry that the question i've posed has unearthed so many horror stories. this is simply unacceptable and in many cases totally unethical! There are 8 GPs and many other locums- i have seen most of them over the past tow years and have never had a cross word with anyone. however, because i requested a meeting to complain and challenge their lack of treatment, i have now been labelled as someone who was 'abusive and threatening to staff' in spite of never once anyone had any reason to complain about me! So even if i could ask anyone else in the surgery to support me- i'm sure they would not because unfortunately they will just stick together...Totally vile. i absolutely refuse to leave this here, and hearing everyone else's awful GP & endo tales is giving me even more fuel to take this further. x

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Oh dear, I can't offer advice as such, but if you haven't already done so, I would urge you to write to the practice and refute everything that has been said about you and INSIST they put it in your medical notes.

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Thank you- I am getting everything compiled now x

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I’m having an issue with my GP, I have all they symptoms of being hypo, chronic fatigue, low ferritin, painful periods, dry skin, anxiety/depression, I’m suffering from a severe hair shedding disorder and my GP keeps telling me because my TSH is middle of the range I am fine! They have now refused to do anymore blood tests, despite me asking for a full thyroid panel check 3x and still not had one done! They are referring me to a dermatologist now, what is a dermatologist going to do???? Lol!! They said if the dermatologist can’t help me then I need to draw a line under it! Draw a line under the fact my hair keeps falling out and in a few years I’ll be bald?? For a female my hair is like a lions mane, this has devastated me, giving me mental health issues. Yet I should draw a line under it?

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I lost lots of hair and supplemented with nourkrin and it’s growing back, the doctor said I might go bald, luckily this didn’t happened. I’m pretty sure the nourkrin stopped it completely falling out.

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This started after my first pregnancy. My hair shedding disorder is called chronic telogen effluvium. My hair was fine before so something happened in pregnancy and that never went back to normal.

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I’m sorry to hear that, I understand how upsetting it is to see your hair falling out.

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I’m so sorry you are going through this... many a time I’ve been told the problems were in my head/ my age etc ( I’m 45!) I had to start taking my partner into consultations before they took things more seriously. How archaic is that?? :( I hope you get decent dermatologist that will at least order a full thyroid panel.. x

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I don’t hold much hope tbh, I’ve been made to feel like I’m some neurotic woman who is clutching a straws. They don’t take hair loss seriously. If the dermatologist won’t give me a full thyroid panel then I’ll get one done privately myself.

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Draw a line under it ?????? So this is a dr who picks and chooses which medical treatments s/he treats. Makes me so angry.

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Yes because I’m costing them too much money with the boood tests I keep requesting. Never mind the fact I’ve paid my NHS stamp all my working life! If I was obese and stuffed my face with food all day, I’d get all the help under the sun! Doctors are not God and they shouldn’t play God with people lives!

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So sorry to hear this. Going through a similar situation with my hair and I feel like I'm on the verge of a breakdown. I never thought I'd lose this much, I can see my scalp everywhere except for the back and I'm only 41. I have been on 75mcg Levo for 4 months now and all thyroid bloods have come back great, best they've ever been yet still have all the symptoms. My GP is actually very supportive, which I'm grateful for. Hormone levels are normal too. Dermatologist did a biopsy and said it was probably thyroid and stress, told me to forget about it and go to the cinema! Seriously! Don't know if I should switch thyroid meds. My issues all started after coming off the pill. Definitely messed up my hormones.

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How’s your ferritin and transferrin saturation? My ferritin is low and the lower it gets the more my hair falls out. The ferritin is not the cause but it’s not helping having it low. I’ve just ordered a natural dedicated thyroid hormone supplement to try. I wonder if the dermatologist will do a biopsy on my hair? How do they do the biopsy?

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My ferritin is within range but on the lower side of normal. However it's been lower when I was experiencing no hair loss. I'm taking iron supplements now. The biopsy is simple, takes 2minutes and not uncomfortable at all. It can feel a little tight for a couple of hours after but no big deal. They numb the area, take a tiny sample and you will require a couple of stitches. I barely felt it. Mine came back normal, although he took it from a part of my scalp that isn't experiencing the worst of the hair loss- no idea why. I was really hoping it would provide some answer, but unfortunately not.

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My ferritin is currently at 59 the rage is 15-300. Low ferritin is associated with poor thyroid function. Have you had your transferrin saturation tested?? This tells you if you are truly iron deficient by measuring how much storage there is in your cells for iron. If you have low ferritin and low transferrin saturation then you are truly iron deficient. If your saturation is on the higher side then your body cannot store anymore and taking in excess iron can result in iron toxicity which is dangerous. I read that taking T3 can increase you ferritin by up 200%! Are you taking a dedicated thyroid supplement? They contain T4 & T3

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My level was around 65 (30-245) in September but should be higher now with supplements- I seem to absorb quite well when I take them. Previous bloods were lower and my hair wasn't falling so I don't think it's the culprit? I'm exhausted trying to figure it out. I'm on Eltroxin as my T3 is above mid way in the range so I don't know if I should add more. I'm starting to wonder if it's female pattern baldness from hormonal changes as I guess thyroid symptoms and perimenopausal symptoms are similar. I bought a wig and have been reluctant to wear it but I can't put it off any longer. Hair loss is awful, isn't it? I had so much before, sob. What's your hair loss like? None of my friends have thinning hair so it's difficult to talk to anyone about it

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Have you had your hormones checked?? High oestrogen can make your hair fall out. I need to have a full thyroid panel check and a full female hormone check. My hair is awful, I can’t wear it down, I have to keep it tied back. I have to wear clip in hair extensions when I go out anywhere nice. I’ve sobbed and sobbed my heart out over it. No one will ever understand how upsetting it is until it happens to them. Sure, they can all sympathise but they still have a full head of hair!

Have you ever done the body temp and pulse rate test? If you have a low body temp and low pulse rate upon waking and 20 mins after eating then your thyroid isn’t functioning properly. My waking body temp is 35.6 and waking pulse rate is 60bpm, think it should be near 37 body temp and around 80-90bpm. I don’t know the exact numbers but I know I’m way under.

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Oh finally someone who understands. The past week I haven't slept and woken up wanting to throw up. I was crying before I went to work today too. You hit the nail on the head, no one understands if they're not losing theirs. I haven't taken mine down either in a year, it's like straw anyway. I use Toppix and Wow colour but they can only do so much.

My hormones are fine, apparently nowhere near menopause but I've read that peri can go on for years without showing in the bloods. One doctor suggested doing the body temperature test. I should probably do that. I do hope yours is your thyroid and that meds work for you. Imagine getting your hair back...I would gladly take the other symptoms, vain or not as that may seem!

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holyshedballs can you help?

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Thank you Jazzw if your friend holyshedballs can help I would be most grateful... x

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This is exactly why I never visit the GP surgery. I have my own bloods tested, now once a year and then post the results on here with the ranges. I self medicate with NDT I am without a thyroid and 72 years old and feel well. Sometime ago reality kicked in, I decided not to go down your route but sort myself out and so far it has worked well. The stress is not worth it, you are probably already feeling unwell. I was born a fighter all of my family are the same but you are up against the establishment.

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I hear you Bunnyjean however if it was just my thyroid I wouldn’t need them to be involved. I have a complex autoimmune that also needs monitoring ( eosinophilic oesophagitis) hence why having a decent GP ( not to mention removing these ‘black marks’ off my name!) is really important for my long term health. They should also not be able to get away with treating people in this way. X

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Hi I understand you are under the GP for something else, I didn't realize that, sorry.

Are you now being treated fro your eosinophilic oesophagitis? and for how long.

You could always treat your hypo problems yourself and post your private blood test results on this site for answers and then you could still self medicate.

If you cannot get anywhere with this it could be the answer. It's practically impossible to get treated correctly for Thyroid problems anyway in the world let alone under the NHS. When I lived in France it was exactly the same and that has one of the top health systems in the world. Good Luck.

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Thanks again Bunnyjean, i'm now being treated privately now by Helen Williams at the London Clinic of Nutrition, plus just found a great gastro who is managing the EO. Insurance wont cover chronic conditions so these are massive expenses...but what price health right? The bottom line is that i still need a GP more so for EO in case of emergency flare ups (im a few hundred miles away from the gastro.) I'll have to post my bloods here as I know most people in this community will be far more useful than the crappy GPs i've had to suffer. But the main point is that i'm devastated i've been lied about and labelled abusive and threatening when i have done no such thing to any of the doctors or nurses i've seen at that practice. That label CANNOT stay. x

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Yes same here. I got sick of their bullying and patronising and realised their ignorance was keeping me ill and it was their treatment of me that was affecting my mental health. I realised there was no point. I only go now if I want some other medication or some other issue sorting out and keep it factual and succinct. I get my own blood tests done privately and get my own NDT/T3.

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Exactly, unfortunately Piggyoink has other health issues too see my reply above.

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This is terrible. Not only are you trying to deal with being unwell but on top trying to fight your corner. I’ve had similar dealings with my local hospital Endocrinologist. They think they know when in fact they don’t.

Have you contacted PALS to see if they can help.

My GP refused to give me blood tests when I thought I may have a thyroid issue when I was first unwel. He kept trying to say I was depressed. I wasn’t. After 5 visit and going around in circles he finally agreed to check my bloods. My TSH was 36! Weeks of being so unwell just because he wouldn’t listen to me. That was 11 years ago. Now I’m going through hell again as they won’t listen to me once again. My TSH has been at 29 this year. For some unknown reason Levothyroxine is not working anymore for me. I’ve switched privately to NDT now after 3 months on it I’m feeling much better but not there just yet.

Have you thought of going private?

It’s money well spent if you get the right medication.

Pamela

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Thank you for taking time to advice me. I had never heard is PALS so will research now. I am being forced to go private but the thingsbin morenconverned about are the “aggressive and abusive” labelling which is wholly untrue, plus the “refusal to take antidepressants” when I have never been diagnosed with any mental health issue. These need to be struck off my records. And they need to know they cannot continue to treat patients like this x

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Hi.

Definitely google PALS and get in touch with them for help and advise.

They should be able to help you remove any untruths from your file. I’m guessing they would need evidence of any abusive behaviour before writing that on your file. You are more likely to be frustrated rather than abusive. Along with many other patients when Drs dint listen or get it wrong. I’ve never known a business where there is seemingly no come back for the customer. PALS is there to help you. Remember that the NHS is owned by the people of this country. We pay our NI and taxes which pays Drs wages. We are the paying customers. And Drs need to remember that. If there was another strand to the NHS like a competitive one that’d be better as today they are a law unto themselves. I never thought I’d say anything bad against the NHS but after this year I have a whole different view on it.

Pamela

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The only proof of ‘abuse’ they have are the comments I made on emails post out terrible meeting... in which they also fail to mention how much I empathised with the NHS because of lack of resources and went as far as to tell them I just needed a referral to a private Endo because their surgery is overwhelmed. So the whole thing is a joke yet it could affect my future massively- hence why I need to fight back to restore my reputation and truth x

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I am a great believer that the truth will always out.

Contact PALS and see what they say to help you.

Pam xx

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I would immediately find another practice

Your surgery’s perception now is set in stone unless they suddenly have a oh my god what are we doing moment that’s never going to happen

Still contact your Health Trust and make s complaint

TSH is the sticking point they don’t seem able to get past numbers

If your able get your bloods done privately do that

My current battle is mine is quite low after a heated one sided debate with my gp who

When presented with Medicheck blood test and all is in good range apart from low tsh backed down and hopefully will leave me alone ,

GP ‘s don’t like being challenged

Another path to take is to ask for app with practice manager and take someone with you

Be prepared cc a letter to your Health trust chairperson

I am 70!and had been subclinical for many years this did terrible damage to my heart this magic number of 5 is rubbish x

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Thank you Cariad123 im so glad you have been able to resolve your issues. I understand what you’ve said about them not changing their mind about me, but it more important that my records are not sullied with their lies as this will follow me forever. No other practice will take me on if they think I am abusive and aggressive to their staff... x

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The reason the practice will give in this case is ‘breakdown in doctor/patient relationship’ it’s the classic one and there is no going back from it!

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I know, it was a link to show Piggyoink that. I know of a lady on another forum who had this happen and she put in complaints to everyone possible, all said they couldn't help and she was removed from GP list and had problems from then on finding another GP as she was then labelled "a difficult patient".

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Thanks so much x

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I agree with Bunnyjean. As a retired Practice Manager I have been on the other end of cases like these and trust me, once the practice have decided they no longer want you, they will get rid of you, no matter how hard you fight. You will end up being labelled crazy and will find it difficult to form a relationship with any other GP surgery due to the information shared on your records. Having learned this I keep my head well below the parapet, get my bloods done by them, get my medications from them and supplement and support my health from the great people on here. No matter how hard we fight GP’s will only treat as per the guidelines and the guidelines say use the TSH as the marker. You can try PALS, the Omdudsman and your MP but I will guarantee you it will all be in vain as they will give you platitudes and suggest finding an alternative GP. I know because that’s how we were taught to respond to patients with complaints like you. I’m sorry to be the bearer of such news but I’m just being honest and trying to show you that if you need to stay at this surgery for your convenience, then your best bet would be to lie down quietly and sort yourself out privately and only see them when it’s abolsutely necessary.

I live in hope that more GP’s get this awful disease because only then might we see some change!

Good luck xx

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Thank you so much linkit it’s great to hear from someone on the other side! I met with the head of the GPs and the practice manager and took my partner there to ensure nothing was misconstrued. They both effectively ambushed me and refused to accept the extensive results that were done privately, or even accept that I should have been referred to an endocrinologist way before now. Anyway... thank you for taking the time to write. I should just keep my head down as you say, but the thought of them ‘getting away with it’ and lying about my behaviour or non existent mental health issues are not things I can just leave because these labels will follow me forever and no one will treat me in the right way if they have that first impression of me! X

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linkit Dreadful to read that you admit to actually living in hope that illhealth befalls not just one, but more people.

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This retired practice manager saw first hand the awful way some patients were being treated, or not treated, by some doctors. The harm such doctors are causing is so great to so many hundreds if not thousands of patients (their personal health/their ability to work/their ability to live a normal life with their families), that these doctors' blinkered/rude/arrogant behaviour will ONLY change if they experience these miserable thyroid symptoms for themselves. Only then will they realise that the current guidelines/treatments are not fit for purpose.

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dinahnow the only way they will learn is if we collectively petition for changes... this cannot continue. X

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I don't know what the legal position is, but I think a GP surgery can refuse to accept/keep anyone they don't want to treat.

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The BMA guidance I posted above, outlines GP rights and responsibilities in such a situation.

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They can and they will 😒

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Sorry to hear about your treatment. I too have refused to take anti-depressants over many years as I knew although I had the symptoms that was not the root cause, and I didn't fancy any of the side effects. Turns out it was Hashi's all along and guess what, now I'm getting treatment, I'm getting much much better. x

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Great to hear! So frustrating we have to stick to our guns and in turn are labelled ‘difficult.’ What a joke! X

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I know I completely agree with you. See hollyshedballs link from GMC about the reasons of trust why a doctor/patient relationship breaks down. That’s what they will use. It’s the standard get out clause so they don’t have to face further dialogue with the patient. It’s terrible but from the GP’s perspective they will say that their registration/career would be at risk if they treated outside the guidelines and then further on down the line something went wrong. Their insurance would be void and therefore they won’t take the risk. I can see both sides of the argument 🤨 that’s why we have to decide to go it alone!

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First, try to remain calm when dealing with the surgery, so they cant throw accusations at you and more importantly, you have a clear head to help you think through the problems you have with the surgery. I know from personal experience how frustrating doctors can be.

Then formulate a strategy so you are clear in what you want from the surgery. It doesn't have to pages and pages, just a logical approach that you can keep in your head.

Part one: familiarise yourself with the GMC guidance on "de-listing a patient".

Read the General Medical Council's guidance: "Ending your professional relationship with a patient". Link here gmc-uk.org/ethical-guidance...

In it you will find that the GMC say to a doctor:

"You should end a professional relationship with a patient only when the breakdown of trust between you and the patient means you cannot provide good clinical care to the patient.

"

It goes on to say to a doctor:

In rare circumstances, the trust between you and a patient may break down, for example, if the patient has:

>been violent, threatening or abusive to you or a colleague

>stolen from you or the premises

>persistently acted inconsiderately or unreasonably

>made a sexual advance to you.

and importantly

"You should not end a professional relationship with a patient solely because of a complaint the patient has made about you or your team, or because of the resource implications of the patient’s care or treatment".

This will give you the confidence to challenge the threat of de-listing. You should communicate with your surgery in a professional and courteous manner (I'm not making any value judgement on you or your post, just advice i would give to anybody) and advise them of the GMC guidance.

then inform the surgery of the GMC guidance Consent: patients and doctors making decisions together link here gmc-uk.org/ethical-guidance...

The GMC says to doctors:

If patients have capacity to make decisions for themselves, a basic model applies:

The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.

The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.

The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all.2

If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion.

VERY IMPORTANT - taking into account the patient’s medical history, views, experience and knowledge and The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition.

Regarding your lab tests, if your tests have been carried out by a lab that is accredited with the United Kingdom Accreditation Service for those particular tests, the doctor SHOULD accept them. they are not under any ties to NHS tests. The GMC tells doctors that they must:

provide effective treatments based on the best available evidence (paragraph 16(b) of Good Medical Practice Link herehttps://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/good-medical-practice/domain-1---knowledge-skills-and-performance

Part 2 communicate with the surgery

Advise the surgery of this GMC Guidance.

i personally would then ask for meeting/consultation to clear the air and explain that you simply want to get better, that you don't have depression and that the doctors are not complying with Good Medical Practice. You don't want to make a formal complaint about this, you simply want to work in partnership with them to get better. You SHOULD take another person with you to give you confidence, help with things you cant remember and confirm what was and wasn't said

You can use your own words and include exclude anything you want.

Keep a record of what was said and agreed during this meeting

if all goes well, there will be a coming together and you can start getting better

if it doesn't go well, the way forward is to make a formal complaint to either the CCG or the GMC, in my view.

Good luck

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Thank you so much for this and your below information . Super useful. They have done none of these things so are in clear breach of their own body’s guidelines. I should be concentrating on my health and not being stressed with this - they really ought to be ashamed of themselves... x

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The GMC also tells doctors gmc-uk.org/ethical-guidance...

Before you end a professional relationship with a patient you should:

>warn the patient that you are considering ending the relationship

>do what you can to restore the professional relationship

>explore alternatives to ending the professional relationship

>discuss the situation with an experienced colleague or your employer or contracting body

and

>you must be satisfied that your reason for wanting to end the relationship is fair and does not discriminate against the patient (see paragraph 59 of Good medical practice).

When you've made a decision to end the relationship

If you decide to end your professional relationship with a patient you must:

>make sure the patient is told of your decision to end the professional relationship, and your reasons for doing so; where practical, the patient should be told in writing

>follow relevant guidance and regulations

>record your decision to end the professional relationship – information recorded in the patient’s records must be factual and objective, and should not include anything that could unfairly prejudice the patient’s future treatment

>make sure arrangements are made promptly for the continuing care of the patient, and you must pass on the patient’s records without delay

>be prepared to justify your decision.

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I can hear you to Piggyoink. Due to myself feeling overmedicated, last Monday after 15 years of being on Levothyroxine, i stopped taking this horrible little pill, and for the last week i am feeling back to normal, more hyper than hypo, and feel great. I went to the doctor this morning again (Have been complaining about this medication for 15 years) and she said to carry on not taking it for another four weeks, and then get a blood test, then call them to see if i have dropped in any of the regular readings of TSH, T3, T4. But trying to get a doctor to understand how you are feeling is like pulling teeth from a chicken. When i get these bloods done, i am also getting other checks done at the same time to see if anything else is causing some symptoms like heart palpitations, flushes, etc. Keep strong, and i hope you get this resolved very soon, because feeling like your not being listened to gets you down. Take care

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wishing you all the best darling... x thank you for your comments

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They are bad for our health!

Funny how they would jump up and be super helpful if you said you wanted a flu jab as they are paid! or that you needed a letter as they charge or that you would love to take statins - but no help when it’s something that they are not financially incentivised for!

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It’s all about the money... :(

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Every area will have an advocacy service. They can help wrote letters , attend meeting etc. Try googling NHS advocacy and see if you can find the service for whete you love , to help support you in this. They get away with so much , and I do agree that it’s nlt Kways worry fighting them - find a way to manage your own treatment or insist on a referral to a helpful endo -.but it’s important to get your records cleared up. Good luck. X

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Thank you so much Bagpuss everyone here is so helpful because we all understand what we are facing. How can it be this way?? When did the Hippocratic oath become so redundant?? :’( x

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So sorry to hear how you have been treated, it is a disgrace. This is why it baffles me when people say the NHS is the best thing since sliced bread - but when you look closely, it seriously lacks on so many levels.

I think especially in recent years there has been a shift in how GPs work with patients. When I was diagnosed many moons ago, my GP was absolutely great, listened to my symptoms and started treatment to see if I got better (which I did). These days, all they do is hide behind lab values and cannot be bothered to see the bigger picture, listening to the patient or even consider the consequences of their treatment or non-treatment will have.

If you have another discussion with them again, perhaps write out before what you want to discuss - make a list of things you want to address, perhaps take some references with you as well, supporting your issues and explain your reasoning. I know it can get frustrating, if you feel that no one is interested or listening, but when you have written it down, its not that easy for them to distract you or to throw you off the tract. And it may also help you to focus.

With regards to treatment, if you have a conversion issue and increasing levothyroxine is not helping, should you then not get a referral to an endocrinologist? The GP probably cannot initiate T3 treatment, but at least he/she should give you the option of discussing this with an endocrinologist (and you could perhaps look at the list they have here of endos that are a bit more open to T3 treatment).

I know it is difficult to fight your case, and especially if you are not feeling well - but keep at it and don't give up. And there are many people here to support and help you - you are not on your own. Take care and good luck!

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Tina_Maria your words are help enough. Thank you. I did all of what you suggested- took lab results, my partner, discussed my treatment etc. When I sent in further studies/ videos/ links ( mostly from this forum,) to support my case that’s when I was told I should look for another practice and acussed of being aggressive and threatening. Yet after two years and even at the awful complaint meeting there had been no issues/ personal complaints about me. I was a good little patient and just took more and more of the magic pill in spite of it making me worse and worse. I paid for extensive lab tests so that I could take them in, hoping that at least they would be happy this didn’t come off their budget, but instead I was told that they were too many and couldn’t really be understood. So my ‘normal’ bloods of the previous two years was all they would look to. Never mind the crippling fatigue, hair loss, constipation, low vitamins & stomach acid, brain fog and everything else. Now I’m on metavive and feel a thousand times better and can work properly again. But hey ho, if it’s not in their ‘manual’ then it must be wrong huh? :(

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Gosh what an ordeal! :-(

It is terrible that people have to go through something like this in order to get better, makes me very angry. I am really glad that you were able to sort yourself out in the end. x

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You are totally within your rights to challenge GP. You will get good advice on this forum. My GP was clueless 15 yrs ago ... and I took myself on my own journey towards thyroid health and completely bypassed him.

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I can't add much to the advice and interesting perspectives of linkit and holyshedballs, although they are at variance with each other about what you can realistically expect from this point on.

When we become chronically ill we present a particular kind of affront to the inflated ego of the average doctor, whether GP or specialist. They can't claim much professional success and this seems to hurt their personal sense of who and what they are. Very few of them join the profession in a humanitarian spirit, with the intent to ease the burden of all patients, whatever our problems. They have failed us, and by adhering nowadays so rigidly to their guidelines (which are just that; they are not termed 'rules'), they continue to fail us.

We are also expensive to treat in the long term, and that hurts their income too.

Bear in mind that many patients are more intelligent than their doctors, will often have more intellectual curiosity, and some may also be better educated in the formal sense. This presents another kind of threat to the inflated medical ego. It is a myth that you need to be super-intelligent to gain a medical degree: the actual requirements are a good memory, diligence, and obedience. Medics become institutionalised during their long training and their thinking is mechanistic.

So you can see why a chronically ill patient who starts asking questions about the lack of improvement in their health, about the lack of medical investigation, and about the lack of access to effective treatment, is bound to stir up a hornet's nest, however politely they challenge their doctors.

In the past, I've talked on the forum at some length about my own experiences with GPs and specialists. I've had exactly the experiences you've described, over and over again. If you stand up for yourself, you will meet an increasingly hostile response and devious, unethical tactics will continue to be used against you. The best advice I can give is to make a formal complaint in the way holyshedballs advises, but do what what linkit suggests, and remove yourself from harm's way first, by taking over your own health care as far as you can afford to do so.

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Hillwoman this is yet another piece of wonderful advice and i'm on track for all of the above. however... I have a major bee in my bonnet about all the people who are too weak or voiceless to question, fight back or have the means to go private. Most of us pay taxes for the NHS yet there seems to be no come back for shoddy and frequently dangerous treatment of patients. This has to stop. and maybe here is where the revolution starts! i need to get myself back on track- away from those charlatans- and then i will come back and bite them hard on the a*se!! x

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Good luck with the a**e biting! My teeth are no longer strong enough. :-D

Nothing about this situation is fair. The NHS was set up to provide comprehensive health care to every UK citizen, but that principle has never really been upheld. The fact most thyroid patients are women means that we start off on the back foot, so when our health does not improve on the standard protocol there's an automatic assumption of mental illness being the root cause of our problems.

I've been worrying for years about all the people here who can't afford to treat themselves, and I might fall into that category myself one day. It's awful, but at least we can lend one another some moral support, and those few of us who have sufficient energy are campaigning for more effective and equitable treatment.

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Hillwoman this is just the tip of the iceberg. I am aghast at these messages and private ones I’ve reveived. The level of doctor abuse and downright unethical practises is beyond wild. X thank you for your kind words, I hope to do the same for others sometime soon xx

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At a lot of surgeries they have a manager whose a bit of a go between. Might be worthwhile finding out and making an appointment to see them. TBH I bet most of us have had trouble with a doctor at some point I know I have, they can be an upperty bunch but weild a lot of power. It also might help to check out your rights online or give citizens advice a ring, but I'd try the manager first if I were you.

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hi JanW i met with the manager and the head of the GPs, and took my partner along for moral support. They acted like a pack of hyenas on a carcass. It was absolutely dreadful- we were both in shock at their self righteous attitude. I literally gave them all the answers/lab tests/everything they needed...and nothing. FOUR TIMES i was pressurised into talking antidepressants when i've never even been diagnosed with any kind of mental health issue. So now on Metavive and supplements from london Clinic of nutrition (which they also didn't like!) and i feel like a new person. Which instead of being celebrated has been demonised because i'm taking a drug that is 'unregulated' and 'not recommended.' IE- not making a profit for big pharma! vile x

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Exactly my point you will be labelled as crazy. It’s disgraceful but sadly true 😏

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Watch me turn this around!!! Screw them! X

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Good luck I sincerely hope you do xx

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Good heavens! What a dreadful bunch they sound, can hardly believe it.

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😭😭

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I feel so badly for you piggyoink. You are spot on to be indignant and yet after reading all the replies I don’t know how you’re going to fight them successfully.

Here in the US we can fire our doctors if you will, because we hold the purse strings. Nevertheless it’s still hard to replace them, I too live in a small village and there’s just not much in the way of alternatives unless I want to drive hundreds of miles. I too have doctors that refuse to measure anything but TSH and judge my Hashimoto’s disease by that marker. I do drive over 500 miles a couple of times a year and I use a local laboratory and have to pay cash for the doctor that’s 500 miles away.

One of the things that the doctor says the one that’s in another state - he says that he believes the reason why Levothyroxine or T4 alone, does not work the reason why it does not convert to T3 (which is why you’re not feeling better - most likely) is because of the lack of digestive enzymes that most people with Hashimoto’s don’t have. It’s a part of the disease somehow. You haven’t mentioned if you have an auto immune disorder such as Hashimoto’s. But many of us even if we have not been officially diagnosed do have Hashimoto’s which causes the hypo thyroid condition.

All of that to say you might try digestive enzymes to see if it will help the levothyroxin to convert to T3. And you might also try selenium. I was one of those people that the levothyroxin did not work at all for me and this was over 25 years ago. Fortunately I was able to find a functional doctor - who put me on the T3 T4 combination right away. And I learned about the selenium and other digestive enzymes here on HealthUnlocked. Unbelievably I am down to less than a third of the medication that I used to take now that I take digestive enzymes including betaine HCI Hydrochloric Acid. Even with a T3 T4 combinations I still needed help with the digestive enzymes and the selenium. I still get regular blood tests so this is not just me going off on my own. the TSH markers are where they want them and they don’t know about the enzymes and the selenium I don’t tell them they just think I’m somehow getting healthier!

So they force us to be less then open and honest about our health because even here in the US they won’t listen and they won’t do blood test for the most part other than the TSH and the T4. Again we can find functional doctors that will listen and will prescribe us NDT and other T3 T4 combinations but they won’t really listen to the selenium and digestive enzyme helps.

We do not have legal recourse,I believe, at this time in history except for if we die and our estate begins a malpractice lawsuit. They are gods and if you don’t believe that just ask them. And pity is the more so.

The best we can do is fashion our own care and pick and choose between the help that they provide and the hurt. Education is an invaluable tool and we can get to feeling better even - live a healthy life!

Hang in there, my gentle friend. My empathetic advice is to channel your anger of our broken health systems and your passion to get well in a self preserving manner. We are all in this together. We can prevail and succeed and leave them behind. There are just a very few that have been able to heal themselves completely!

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Dear dtate2016 thank you forbtaking the time with such a thorough bit of advice. I’m on it all now through a private clinic so as soon as I’m back firing on all cylinders I am going to put this awful situation right. I’ve never ever even been in rouble with the police or so much as had a speeding ticket so for them to taint my name just because I challenged their terrible practices and trying to force feed me antidepressants when I absolutely don’t need them is just appalling. Sending you hugs from this messed up little island! X

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I cannot add much from the brilliant advice above, so sending you a hug. One little tip I find quite useful when taking on these "professionals" is to go into what I call "Thatcher mode". Keep icy calm, talk in a low voice, and look them in the eye. And keep this in mind - lol!

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Thatcher Mode quite often works for me, especially now I'm a certain age. ;-)

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Massive hug back serenfach and thank you for the laugh!! X :)

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Hello Piggyoink (love that name :) )

Have you thought of going through PALS nhs.uk/common-health-questi...

They can give you advice and more, or even tell you what you need to do next.

Best of luck with your crusade :)

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Thank you peaches48 this is just the beginning! I’ve had amazing advice from you all so I need to crack on... x

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I truly sympathize, you are at the mercy of an organization who will all band together against you. You sound like my daughter who speaks the truth with fairness and honesty but it is a truth they don’t want to hear and will not act upon because it raises questions about their competency, knowledge and behaviour . My daughter is currently fighting against her LA Social Services department who have conspired to take her livelihood away, she is guilty of absolutely nothing and we have engaged a solicitor to fight them all the way. If you can afford it you might consider doing the same. Do they have a patients forum? You could ask for the names of those who sit on it and approach one of them to state your case, you could also write to your local health trust who fund the GPs and again, lay out your grievances and say that rather than the practice trying to resolve them they have asked you to go. Failing that there is almost certainly an ombudsman. There are local councilors too, ask to see one and explain what’s happening. He can also write to them. In short mobilize anyone who may intervene to do so. We pay these people (a lot of money) and they have no right to refuse to treat you properly. Good luck!

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Thank you Espeegee im so sorry that you are having to watch your daughter go through this. My mum is also hypo but her GP and surgery (in London) have been great with her and her health is awesome just on thyroxine. I wasn’t at all worried when I was diagnosed as I though it was simply going to be ‘take a pill every day’ scenario. Until earlier this year I still didn’t understand how complex the thyroid is and how serious it not working properly can affect every organ and system in the body. I’ve given up on trying to educate the arrogant and myopic GP and surgery manager, however I am going to fight them tooth and nail for their libellous comments about me which will affect how future practices may see me. I am also disgusted that GPs seem to associate our symptoms with mental health issues and instead of treating us properly they try and feed us antidepressants like sweets. This has to STOP. My mum was blind copied in to all the emails I sent them and she was devastated for the way they were treating me, so I empathise with what you are going through. I wish you and your daughter strength and courage. It’s only when we stand our ground that changes happen. Antiquated systems and big pharma need to be brought into check once and for all. As you say- we PAY for this ‘privilege.’ All the best to you guys xox

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Thanks, we’re probably going to need it. When you take on the system you need nerves of steel and all the proof you can gather. We’ve made a start and the first lie we found is a whopper which we can prove because we have the emails. These people have absolute faith in their rightness, often misplaced lol. My daughter won her case against her last employer (yes she is often in the firing line, literally lol) but she is very principled and believes that everyone should do what’s right, it’s been a hard life for her but she gets my support because she’s hard working, honest, a great girl and deserves better treatment than she usually gets. Things have to change because what we have in place is not serving us well enough.

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I had a bad experience at my surgery. I later read in my local paper that this surgery was the worst in the area. I changed to the one which was noted as the best in the area and have had better treatment. The newspaper based its finding on the percentage of people who said they would recommend their GP surgery to others. To find our the rating of practices near you enter your postcode at nhs.uk

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This is great information, thank you so much Ballyo

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Lots of good advice above, can I add my two cents worth. You might want to try a very public appeal. I'm not sure if lawyers do pro bono (free) work in the UK (they are obliged by by law here to do a certain percent free work here in the US). You might want to put a desperate appeal in a national newspaper for a lawyer to fight for you for free. Put as much as you can in your editorial with all of the worst things you have mentioned here. You might get a TV channel to pick up on your appeal - then we can all write in about the scandal in general. It might also put a fire under the MPs who have taken up the cause for a number of individuals from this site and who might be piddling around at a snail's pace. My suggestion is to go public, make a great noise.

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Thank you LAHs I am taking one step at a time and waiting for some initial feedback as having been overwhelmed with public and private messages, this scenario is a lot more prevalent than I’d imagined. I want to do something for all of us, not just me. But first I need to get myself back in shape as I see a long fight coming up x

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I had similar problems at my surgery - with just one doctor - over taking biphosphonates for alleged osteoporosis. "Suck it and see," he said. I wrote to the Surgery Head with relevant research and asked for a new doctor. Six years later, my new doctor (a woman) says I have: "thin but strong bones. Keep up the Vitamins D3, K2, etc., and don't forget the Magnesium supplements." Depending on your income and age, you may be able to get transport provided to enrol with a more sympathetic surgery. Dr Mercola says: "According to research published in the British Medical Journal (BMJ), medical errors kill an estimated 250,000 Americans each year, making them a leading cause of death.19 While medical error is not included in rankings of cause of death or included on death certificates, death from medical care itself, and the doctors who administer it, happens far more often than many realize... " bit.ly/2AsDzMg

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I I have sympathy for you, as I have had the same problems with my doctors. If you stick up for yourself and display some knowledge about your condition they get very angry and turn against you and don't do anything to help you. I am presently looking for a new doctor that will test T3. I went to an endocrinology clinic and although they said they treated Graves disease they didn't seem to know anything about the symptoms and got mad when I presented them with an article about Graves and having a thyroidectomy. I hope you can find a good doctor and I hope I can do soon because I need new blood test tests.

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I am wishing this for you from the universe leftbehind! Now I’m feeling a lot better I’ve found a great advocacy agency (through this amazing forum!) who have taken my complaint seriously and are helping me to take it to the next level. Bullying patients when they are at their most vulnerable- simply because they may not understand a condition fully- needs to be stamped out of the NHS. Appalling. Wishing you better health xoxo

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