Help or advice welcome: I'm getting increasingly... - Thyroid UK

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Help or advice welcome

ChristinaT profile image
ChristinaT
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I'm getting increasingly frustrated and upset with the response I'm getting from doctors in my surgery, to the extent I don't want to go even when I have to. I don't have a fixed GP currently as there are only locums in the practice. It seems whenever I visit regarding a physical health issue they are telling me it's psychosomatic 😐πŸ˜₯😠, and as a result I'm being dismissed. I end up walking away with nothing achieved, I feel deflated, and stuck and don't know how to get them to take me seriously. Im spoken to as though I'm a child. i had an appointment earlier today. The GP I said the following to me.

"How do you know your symptoms aren't psychosomatic?, you havent spent years studying about it."

So now I don't know my own body or mind apparently but he does just because he said so. Am I expected to accept this? How does one get around doctors who are resistant or obstructive? (That's how I feel he was being with me)

Does anybody else ever encounter anything like this?

Any advice or help would be appreciated if anyone can relate to this? Or can advise me on how I may be able to get around this. Thanks.

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ChristinaT
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humanbean profile image
humanbean

Does anybody else ever encounter anything like this?

I've encountered this for about the last 40 years.

I have recently managed to improve the attitude I face from the doctors at my surgery. I may have been lucky though.

I paid Β£50 and asked for a copy of absolutely everything held in my medical records, in any format - on computer, on paper, or anything else.

I got a huge wodge of paper which included a surprising number of duplicates. But what was important to me was that I had been telling them things about my medical history which they made clear they simply didn't believe. I found the evidence in my medical notes (several letters written by surgeons), copied it all, wrote a covering letter (in which I was very, very, very polite), sent it all to my doctor and asked for the information to be put in my summary record.

The reason I said I may have been lucky is that some people discover their medical records are almost nonexistent. Luckily mine had the information I was looking for, but I do know they aren't complete. I'm still wondering what happened in 2002...

ChristinaT profile image
ChristinaT in reply to humanbean

I'm so glad to hear I'm not the only one but I'm not glad it's happened to your with (I hope you understand what I mean when I say that 😁)

That sounds like a really good idea, if by doing that you've managed to change their attitude towards you even if it's just slightly then it was well worth it. You've made it better for you and easier for them. I think I may consider doing the same.

Thank you so much

marigold22 profile image
marigold22 in reply to humanbean

Paid my Β£50, got the wodge of papers, many duplicated. Have found more than one GP writing against TSH of over 5 saying 'TSH too high, either undermedicated or not taking meds as prescribed' with exclamation mark. They definitely cover their backs too, many notes not telling the whole story. Horrendous and very emotional reading. x

ChristinaT profile image
ChristinaT in reply to marigold22

Thats awful. Surely you would think they have to tread carefully with what they put on a patients file in terms of their "opinion". And yes I can quite imagine they don't make notes of the entire conversations they have with their patients.

Did you make a complaint of question this regarding the content of your medical info at all?

marigold22 profile image
marigold22 in reply to ChristinaT

Going through med notes to see if I can sue...... :-(

in reply to marigold22

The NHS has the best lawyers, you don't stand a chance. Sorry.

marigold22 profile image
marigold22 in reply to

How do you know the NHS have the best lawyers? I've worked as a secretary at NHS lawyers in Birmingham. They employ young newly qualified, pay badly, cut corners, make stupid mistakes. I've worked at law firms which have a far superior attitude to detail. i did say I'm 'seeing if I can sue'. If I can't get no win, no fee I won't go ahead. Simples

in reply to marigold22

marigold - GPs and other doctors pay an annual fee (for 'training purposes' apparently) to the Regulator. In my experience said Regulator defends GPs against any complaints by patients, even if said complaints are warranted.

My complaint to a Practice Manager saw them take advice (read legal advice) that they were not to respond. Well of course they couldn't respond due to repeatedly misdiagnosing me and it was proven that they were wrong thanks to an NHS consultant confirming my diagnosis. They have been well and truly humiliated by a patient.

Additionally I have been in contact with a no win no fee organisation and they wouldn't take it on.

ChristinaT profile image
ChristinaT in reply to

May I ask as a result of this, do you find you still find yourself having issues wih GP's/specialists at all. Now that it's been proven you were misdiagnosed (obviously I don't know your history etc) but just in general I mean?

And did they not answer at all to your complaint?

Sorry I'm just asking in relation to the info you have stated above.

I often wonder myself if I do eventually get to the bottom of my health issues then it would also mean I have been misdiagnosed for years and now also being met with refusal to refer me to the relevant departments for further investigations.

in reply to ChristinaT

Christina - I've become an assertive and informed patient, am always polite and don't have a sense of entitlement. I do expect doctors to listen, if I'm happy with what they've suggested then I thank them. If I'm unhappy then I tell them what I want investigated/what I expect them to do, all in a polite but assertive manner.

I should mention that I moved out of the area so no longer deal with those particular numpties.

Would strongly recommend obtaining all of your medical records. For example I discovered that I'd actually been hypothyroid for some 18 years before I received an NHS diagnosis. As a result of this I've ended up with another permanent health condition namely osteoporosis in my spine and pelvis.

My final appointment with an NHS Endoknob saw him telling me that he wasn't concerned about my symptoms. My taxes are paying for this numpty to be rewarded with a 6 figure salary??? It's outrageous!!

Rather confused that you only have locums at your surgery and clearly doesn't offer any continuity of care. Once you've gone through your records with a fine toothcomb then you can put pen to paper with a letter to the Practice Manager. I would suggest taking a look at the Patients Association website, they're the only independent organisation that is genuinely fighting for patients. They know that patients are being failed by GPs, doctors and the regulator. I've also found the Care Quality Commission to be good.

Take it slowly when reading and get all your facts straight. These people will twist anything you've said and throw it back in your face. They will stop at nothing to defend themselves.

Good luck and do keep us updated.

ChristinaT profile image
ChristinaT in reply to

That's absolutely awful, I can't believe you've had to go through that. I'm very sorry to hear that.

Ive received some very informative and muh needed advice from yourself and everyone who has replied/commented on this post which I really appreciate so hank you so much for this, it means a lot. Yes, first thing I will do is request my medical info and will look through this carefully and take it from there. I'll also look up the Patients Association website too.

Currently there are only locums in the surgery as the full time Dr's left, the replacement ones didn't last long either, and as a result patients have moved elsewhere. I did have a good GP where I am but she left, I managed to to see another good locum doctor there too when she was available but then she left the practice aswell, and now there are different locums there constantly. (The receptionists are aware that this is an issue, they've had meetings about it etc but nothing seems to have solved the problem) I don't know why they can't seem to sustain a permanent doctor.

in reply to ChristinaT

Thanks Christina. Unbelievable that your surgery is completely dependent on locums but you do have to wonder why that is. Nobody is saying it's an easy job but perhaps locums are paid considerably more and are happy knowing that they can pick and choose where they work, if they don't like it then just move on to the next surgery.

The NHS complaints process is designed so that patients give up. I escalated my complaint to the Parliamentary and Health Service Ombudsman, provided all the info they requested then dead silence. Chasing e-mails went unanswered, I then sent e-mails to different addresses obviously including the reference number. Nothing. I then sent another e-mail stating that I wished to start the formal complaints process against them as they'd ignored my chasing e-mails and it was over 2 years since I made the complaint.

They told me I'd not answered their e-mail (not true) and in line with their retention policy had deleted everything. I've had to resubmit everything, they've now sent me an e-mail asking questions that have already been answered. It's done to wear people down so they give up in frustration. This obviously makes it look as though not many patients complain.

There's no guarantee that they will investigate anyway. Regardless I will be speaking to my MP about this, it's a scandal.

ChristinaT profile image
ChristinaT in reply to

Yes there is clearly an issue at my surgery and has been for some time regarding the amount of different locums working there then leaving etc aswell as the now then permanent GP's.

I can't beleive you have been subjected to all of this, it's outrageous! You must feel so angry with it all, I don't know how they can get away with that, something must be done for situations like yours. We can't just accept a put up and shut up attitude from them. It really makes me wonder how it's all dealt with behind the scenes. I wish you the best of luck in all of this, and I really hope it works out in your favour. Please keep us updated if you have any progress with it. Fingers crossed.

puncturedbicycle profile image
puncturedbicycle

Um, if he'd spent years studying psychosomatic symptoms presumably he'd be a psychiatrist - ? I'd prefer a gp who has spent years studying real illnesses!

You're not alone. I have doctor-related ptsd. I get really wound up when I have to go. And I suspect mine are not all that bad. After all, I've found one gp there who treats me like an adult and for now she is prescribing my meds.

I understand the value of the nhs, and there are areas (emergency medicine being one) where it is excellent, but we are failed so miserably that it's all I can do to stop myself when people bang on about how marvellous it is. It is marvellous where it is marvellous, but that is not where I find myself.

ChristinaT profile image
ChristinaT

Thank you for your reply. It's reassuring to know I'm not alone in feeling like this. I get made to feel like a freak 😐.

Yes I couldn't agree more with your thoughts on what he said. Indeed he is not a psychiatrist and I could feel myself getting angry with that comment he made.

Basically the reason for the visit was to be asked to be referred to the endo department at my local hospital. I'd seen them a few years ago. my symptoms of an undiagnosed illness have got more severe over time and they remain unresolved and undiagnosed (some investigations are being done privately for this, however financially I won't be able to continue this ongoing, it seems it's likely it's an endocrine issue due to previous health problems and the nature of symptoms) I have oesteopenia and I haven't had a bone scan for almost 3 years and I feel my bones have gone worse again, but regardless of that I am meant to have them checked periodically. The endo department said a few years back I can return to them to have this done no problem, so I asked the GP I saw today for a referral. He said he needed a reason to refer me, so I explajned my symptoms and situation and I'm due a bone scan regardless. Anyway, in one sentence he said I shouldn't have to be paying privately for investigations but then said I need to prove my symptoms aren't psychosomatic but still was reluctant to refer me (he never did). So how on earth am I expected to get the relevant tests/investigations to confirm or rule out anything if he won't refer me ?!?!? (Private testing aside, he wouldn't have referred me anyway!) He said he feels my symptoms are depression blah blah blah. I told him its not psychosomatic. That's when he went into say the aforementioned about the studying etc πŸ‘†. The whole conversation was just going round in circles and getting ridiculous.

I agree with the nhs being what it is. I am grateful we have it and yes again I concur, marvellous in some areas..... I really am not slating our nhs system (before anyone thinks I am) but this issue is something that's really becoming a problem.

Have you ever wrote in and made a complaint about this? Or had any success in any alternative approach?

bluebug profile image
bluebug in reply to ChristinaT

In your case your best course of action is to get your medical records and see if it states when you should be seen again. Then do as Humanbean stated. Otherwise you are going to have to see if you can find the local trust guidelines to be referred again and they aren't not always available via the internet.

GPs try not to refer patients to save money and in the case of locums some of them aren't allowed to do referrals at all. In the case of this particular locum he's obviously also a nasty piece of work and unfortunately unless he does something considered more serious like prescribe the wrong medication, you won't be able to get rid of him from the practice.

I was told by a GP I know socially earlier this year that they only not rehire locums if patients and/or a pharmacist raises concerns about them. In the majority of cases it's over the medication the locum has prescribed.

ChristinaT profile image
ChristinaT in reply to bluebug

Thank you for your reply. Yes I think the best thing for me to do is to obtain a copy of my medical info and do what humanbean stated.

Ah yes the money saving saving aspect. This is what is causing unnecessary suffering to patients. The whole system is messed up.

CarpaBob profile image
CarpaBob

I am having problems getting doctors to listen to me too, and i hate the way they make you feel when seeing them. I have even changed surgery but so far it hasn't helped. I have recently written a letter in to my gp with a list of symptoms an asked for it to be put on my record as after my next appointment with a hematologist I will be complaining to NHS England about my treatment (or lack of it). As hard as it is we have to keep fighting!

ChristinaT profile image
ChristinaT in reply to CarpaBob

It's frustratig isn't it. I was thinking of making a complaint also but I wouldn't know where would be the best place to write to in the first instance?

You could of course covertly record your consultations, this is something I regret not doing myself. Otherwise write a letter to the GP, copy to the Practice Manager stating that he/she has done nothing to help you regain your health. List your symptoms and what you'd like investigated. This should kick GP into action, any complaints are brought up at their revalidation so it's in the GP's interest to listen to you.

I would be inclined to question what their qualifications are to make such a sweeping statement re psychosomatic symptoms.

On the other hand, and I don't have any proof of this, complaints can potentially work against you. I'm certain there's derogatory comments on my medical records which would explain their disinterest and laziness.

As humanbean says, get hold of a copy of all of your medical records. Go through them with a fine toothcomb but be aware that GPs can lie and falsify records to cover their back and protect their job. Be aware that the regulator is still ignoring patients concerns about doctors despite being told "they were behaving as a gentlemen's club" at the Harold Shipman enquiry.

ChristinaT profile image
ChristinaT in reply to

Thank you for the advice. Prior to he appointment I spoke to one of the surgery's receptionists and I enquirer if they had managed to secure a full time GP. They said they hadn't and asked why. I was reluctant to tell them but I explained that I felt I wasn't being taken seriously because I keep being told its depression or anxiety πŸ˜’ I was extremely polite I wasn't even angry im just more upset than anything. The receptionist was really nice and suggested I take someone in with me or ask if one of the receptionists can accompany me etc.

I do want to see my medical records I just didn't know it was a simple as paying Β£50 aswell as a request. It reassures me that others have been able to do this so in knowing that I am definitely going to do it.

Ive seen a psychiatrist previously who thought I was okay. They understood I had a hormone disorder which unfortunately at the time caused me acute mental and physical symptoms because my levels of that particular hormone where through the roof! And now I feel like I'm being stigmatised my GP's because of this. I am of sound mine. The only issues I have currently is that I have terrible short term memory loss and my cognitive function is not great but these are some of my symptoms aswell as the physical ones I have , and I'm trying to get the correct tests and investigations for this.

I would happily covertly record the conversations I have, but I know I could never use this, not that I would want to mind, but still to have this for myself. I may end up being forced into doing this if things don't change.

bluebug profile image
bluebug in reply to ChristinaT

If you are allowed to have a chaperone definitely take one in with you.

I've chaperoned other people in the past and found it's better that you are not a close friend or family member as you both get taken more seriously by the doctor. Simply because of the fact that the patient has gone out of their way to bring someone who doesn't know them intimately to a medical appointment means the doctor better listen.

ChristinaT profile image
ChristinaT in reply to bluebug

Ideally I would've just brought one of he receptionists in with me, but sometimes there is only one working at a time. Other than that I would only have family members or friends to accompany me 😐 I dont know of anyone else I could bring in, but it would be the ideal for me if I could find a person

bluebug profile image
bluebug in reply to

Why should you be recording your consultations? You are suppose to trust your GP.

If you don't trust them in theory you are suppose to be able to change to another practice. Though it seems in practice you have to kick up a right stink before you are allowed to move, hope your GPs are struck off or move house even if it's just round the corner.

Also you don't need to make a complaint or have things on your notes for GPs to either be nasty (or helpful*) - GPs have meetings where they discuss patients and their illnesses.

*yes with some diseases you do all the preliminary research for them and so they check your findings.

in reply to bluebug

bluebug - I don't trust any NHS doctors. Who says we are supposed to trust GPs? If I'd recorded the consultation it would have been proof that the GPs had lied in order to cover up their mistakes.

bluebug profile image
bluebug in reply to

Without getting too political the NHS was conceived on a social contract were doctors and health professionals trusted the system, and patients in turn trusted doctors and health professionals to do the best for them when they are ill. If you search different health professional bodies code of conduct they mention that they have a duty to maintain trust between themselves and patients.

Also you should be aware that some GPs who have a poor attitude and think they can get away with it, think you are recording them even when you are not. They will therefore not simply say everything but point and miss out phrases, so even if you have a recording they can say you misinterpreted what they said. Well at least the GP I eventually kicked up a stink about did. You are far better at convincing someone to always be in your appointments with you, or even better simply not seeing such a GP.

in reply to bluebug

bluebug - GPs and doctors come from the same gene pool and you, I and Harold Shipman. I see absolutely no reason to trust them more than I would trust a bin man, for example.

I use the NHS as little as possible and basically for tests that I don't want to pay for. I tell them what they want to hear but they haven't a clue what meds I take, what private test results show and what other conditions are being treated by private doctors.

greygoose profile image
greygoose

I think the practice of telling patients they're imagining their symptoms is spreading. In the past few years, I've had a dentist telling me my toothache was 'all in your head' (well, yes, but not in the way you mean!) and a vet telling me my dog's symptoms were all in my head!!! How much worse can it get?!?!

And, by the way, when another dentist xrayed my tooth, it was rotten throughout. And another vet did a blood test, and my dog's T4 was rock bottom! To be honest, this attitude just highlights the ignorance of those that take it. A good doctor/dentist/vet would do the tests and know how to interpret them. I think I would have said to that insolent pup 'well, in your case, it was years wasted!'

ChristinaT profile image
ChristinaT in reply to greygoose

That's shocking. Why are they not all signing off the same hymn sheet. Dismissive behaviour like that meaning your tooth wasn't sorted out in the first instance and the second dentist had to do the work which should've already been done.

It seems this type of thing happens on the regular, more than what I thought.

greygoose profile image
greygoose in reply to ChristinaT

I'm sure it does!

bluebug profile image
bluebug in reply to greygoose

At least with dentists, vets, etc they aren't allowed to have a monopoly on a particular patient so you can go and use another one.

With GPs you are forced to use them.

Many patients find they can't changed GPs even if there are spaces on nearby practice books as in my area and some others the extra spaces are to cover transient populations e.g. students so they don't allow you to change unless you kick up a stink by complaining to the right people so the old GP releases you.

greygoose profile image
greygoose in reply to bluebug

Well, that's the case in the UK, yes. But, in France you are free to change your doctor as and when you please, IF you can find one that has space on his books! But, it seems, GPs are a dying breed, here.

CarpaBob profile image
CarpaBob

You can complain to your gp surgery or you can go straight to NHS England if proffered. The new laws brought in at the beginning of 2014 or 2015 cant remember which now, but everyone is entitled to move to any gp surgery they wish even if it is out of area. For example if a surgery near work, or near a school is more convenient, can even be just because it's been recommended by someone to you. The only thing the surgery can impose is a refusal to do home visits.

ChristinaT profile image
ChristinaT in reply to CarpaBob

thank you. That's what I'm going to have to think about, as to where to submit the complaint to. I never really wanted to go down this route in all honesty but I feel I have no choice. Their view of my situation is at that ive had extensive investigations in some areas (Gastro) and all was okay so therefore they assume I am well. However this couldn't be further from the truth. I have considered moving surger's, lots of patients have done this from mine, due to it being organised chaos, lack of doctors etc. It's probably my best bet, but I did intend to do this after I got to the bottom of what's making me unwell. Maybe I might have to do this sooner than anticipated. Do you know what to expect from submitting a complaint to nhs England? how it's dealt with etc? I'm guessing differently from making a complaint to the surgery?

(Sorry I don't make myself clear on here sometimes, I hope you can guage what I'm getting at)

bluebug profile image
bluebug in reply to ChristinaT

You are better of complaining to your MP then moving surgeries.

The reason for this if an issue is uncovered in how chaotic the surgery is the MP's voice will be listened to over yours.

The NHS doesn't like listening to patients who complain even if the patient is one of many pointing out a danger in the system.

In regard to your current problems if the current locum GPs aren't listening to you so aren't treating you, and you can find my talking to people GPs in a practice who can then you should change surgeries asap to get treated.

Also when receptionists offer to go in with people or ask if you want to see another doctor they know there are issues with that GP.

ChristinaT profile image
ChristinaT in reply to bluebug

Thank you for very much for all the advice you have provided me, I have received some excellent information from yourself and everyone else, I really appreciate it. Its been very helpful.

The patients and receptionists are fully aware of the situation. As mentioned in another reply on here, they've had meeting etc but can't seem to make it work regarding having a permanent Dr available. I don't know what the issue is but it remains an issue.

Yes, I'll have to consider changing surgerys sooner rather than later, it may be the only solution to getting somewhere in all of this, for now anyway, once Ive requested copies of my medical information/records

TupennyRush profile image
TupennyRush in reply to ChristinaT

Hi there

I was undiagnosed by GPS at one practice and was given a number of reasons that we're causing my symptoms (early menopause etc). Towards the end of it I saw one GP who screamed at me (she was running an hour late and was obviously not dealing with the stress) you're not ill you're causing all your own symptoms because you're so fat, fat, FAT. I tried to explain that (at this point) I was gaining 2 lbs per month despite eating less than 1500 calories and that myfitnesspal kept telling me to eat more because of the amount of exercise I was managing to do when I wasnt asleep (at this point I was sleeping 12 to 15 hours per day)

She told me that my food diary was a tissue of lies and that I was obviously eating another 1000 calories or so of junk food per day that I wasn't recording.

I sent in a letter of complaint about this appointment. Saw her again where she apologised, listened to my symptoms (double appointment) and implied that it was in my head but sent me for full bloods just to make sure.

I went to a different GP at the same practice for the results as they found that while my thyroid tests were 'completely normal' (tsh in range, ft3 and ft4 below range which I found out later as I wasn't asking for copies of my results at this stage) my liver results were over range for all enzymes and my kidneys were also not doing well plus my cholesterol was over range too. During the consultation my alcohol consumption was queried a couple of times but I didn't think much of it

Went for a liver scan privately. Spent a month trying to get result from the quack (chap who did scan said I was OK but wanted to then see where else we went). Had an appointment with the second GP who 'hadnt received results of scan' but asked me repeatedly about my alcohol consumption. I replied that I'd been teetotal for around 2 months (since I'd got the liver scan results) but prior to that I'd been drinking 1.5 bottles of wine a week (half a bottle on Fri, sat and sun night). Every time I said that he said 'is that per day?' and I'd correct him and say no per week but I'm not drinking now

I came out, decided they'd written me off as an alcoholic, asked all my friends for recommendations for GPS and changed practices to the one recommended by a friend who has a challenging personality.

I had my first appointment with them 2 months later (it took the quacks this amount of time to send my medical records 100 yards down the road) and was diagnosed as hypo thyroid within the first 5 mins of my first appointment.

Once I began to feel a bit better (about 3 months later) and I'd got all my results since 2000 to date (2013) from my new GP I sent a letter to my previous practice informing them of my diagnosis, copying NICE info on secondary hypo and asking them not to bother writing back to me but to consider doing some training on hypo thyroidism.

The practice manager wrote me a snotty letter back informing me that they hadn't diagnosed my hypo because I don't have hypothyroidism.

I got somewhat miffed.

I complained to the Health Ombudsman. In a detailed set complaints, supported by scientific papers and NICE.

They tried to fob me off with a meeting with 3 of the GPS from the old practice plus the practice manager where I couldn't have taken anyone with me. I declined and I have subsequently regretted this as I could have took in a PowerPoint and done thyroid Janet and John but I was still recovering and I didn't feel able at this point.

The Health Ombudsman ruled that I don't have hypo so the quacks couldn't have diagnosed me despite me having a GP diagnosis plus endo. I can't comment on this one without using language that I probably shouldn't on a public forum but let's say Jeremy Hunt might have sort of figured in my reaction...

So, complaining good but I'd suggest moving GP practice after checking them out both on line and with friends. I have written a number of reviews for the quacks that we're not terribly complimentary. The majority of these have been taken down but a few remain....

I'm still angry. I'd still have problems if I met one of the quacks in the street.

Oh, and for someone who doesn't have hypo it's amazing what the placebo effect of taking hypo drugs can be, my kidneys and cholesterol are both fine. I've lost 2 stones. I have around 20 hair's on my eyebrows. I still don't have hair on my legs or arms but that's not a bad thing. The bald patches on my head have cleared up. I sleep around 8 hours a night. I don't fall asleep in the middle of the day and wake up with the laptop keys embedded in my face. My liver is giving results of a 'fatty' liver but the last enzyme is finally getting results that are moving southward...and my 7 day hormonal migraines every 14 days are down to a bit of a headache every 28 days (which is not bad for someone with a diagnosis of menopausal in 2009!)

ChristinaT profile image
ChristinaT in reply to TupennyRush

Hi there, thanks for your reply 😊. Jeez you have really been through a rough time with all of this! The way you describe how you were treated by the GP's in that practice is disgraceful. I am so glad you got your diagnosis and treatment, but I conpleteky understand why you feel the way you do.

I think a lot us here appreciate doctors can have bad days, we tolerate being spoken too in a rude manner, and we allow this as we can understand the pressure theyre under (even though this shouldn't be an excuse) and yet you receive a snotty letter back from that surgery from a complaint you submitted, quite rightly highlighting their errors!

I'm very sorry to hear what you've been going through, and that you were made to suffer for so long. I cannot believe they were implying your liver enzymes being raise was because of alcohol despite you telling them it wasn't. An absolute joke. It's almost like a form of abuse. They have no idea how damaging it is to be treated like that.

TupennyRush profile image
TupennyRush in reply to ChristinaT

Hi there

Thank you. Was hoping you'd see that the complaint route may not work and go down the changing GP one....it's the best thing I've ever done!

thyr01d profile image
thyr01d

yes Christina, I have exactly the same, dismissed as 'all in my head' and on Tuesday I went with great optimism to see an endocrinologist after 2 years of asking - and she told me to take a multivitamin. That was all! This, in spite of the fact that my TSH is suppressed and T3 too low. She wouldn't prescribe T3 because it can cause osteopenia, which I already have, yet suppressed TSH causes osteopenia. Just as you say - round and round in circles.

ChristinaT profile image
ChristinaT in reply to thyr01d

Gosh poor you, I'm sorry to hear that. They make you feel likes its a no win predicament don't they. I beleive I have oesteo issues because I still haven't been diagnosed with an illness that has made me extremely unwell. I wouldn't have even know I had it, unless I went private, and I was diagnosed fairly young with it aswell. Have they prescribed you anything for your oesteopenia? If you need the T3 then surely you must have it, otherwise suffer without it? Just doesn't seem fair at all 😞

thyr01d profile image
thyr01d in reply to ChristinaT

Thanks for your sympathy and understanding but I'm okay now that I've found this site, although it's slow I feel as if I am gradually making progress.

It is horrid though isn't it when the medics speak to you as if you are a moaning minnie!!!

ChristinaT profile image
ChristinaT

Glad to hear it πŸ˜ƒ. I hope you continue to make much progress.

Rosy_Holly profile image
Rosy_Holly

Start keeping your own medical records. Keep the papers in order and in an impressive looking file. This I believe shows you are serious about your health and getting better and probably alerts doctors, specialists that you have written proof - if this is ever needed following a dispute. Also I have found my own medical files are easier to look up, than rushing around all over the computer screens. I have had aspecialist get out of his chair and come round to look. Hospital staff have taken it to read. Amazing the treatment options that have come out of this. Medical staff are hard pressed, doing our best to help can do no harm.

ChristinaT profile image
ChristinaT in reply to Rosy_Holly

Hi there thank you for replying 😊. Wow that's brilliant, such a positive outcome from organising this yourself. I'm so glad this has proved beneficial you and them. I do understand they are all up the wall and very busy, I do try my best to make life easier for them but ultimately sorting out my medical file would be a good start. I'm going to do this as so many people have suggested to do so. I'll see how I get on from doing this. Thank you so much

humanbean profile image
humanbean

Ive seen a psychiatrist previously who thought I was okay. They understood I had a hormone disorder which unfortunately at the time caused me acute mental and physical symptoms because my levels of that particular hormone where through the roof! And now I feel like I'm being stigmatised my GP's because of this.

ChristinaT , what a coincidence! My problems with doctors started with a visit to a psychiatrist when I was 19. I'm now in my 50s. Every treatment I've needed has been met with huge resistance. I've been fobbed off time and time again. And even when they've done surgery and found that there was a problem after all, the letters sent by surgeons were put in my GP records, and the findings were ignored, and not summarised or recorded.

Nowadays I treat as much as I can myself. But unfortunately I still haven't worked out how to do DIY surgery.

ChristinaT profile image
ChristinaT in reply to humanbean

It's disgusting isn't it. once it's known we've been to a psychiatrist then that's it, GP's think its all in our heads. Ive had to try and explain many a time my mental symptoms are part of my symptomology, and I'm not depressed or anxious as a result of my circumstances. They cannot fathom this whatsoever. They don't understand hormones are responsible for many things including influencing how brain chemistry/neurotransmitters function. I think the best thing you did was to obrain your medical info and get everything clarified and summarised for them.

Patients like us become so desperate that we do try and treat and maintain as much of it ourselves. Given the lack of understanding and support provided from we feel we have no choice.

Even the psychiatrists I have visited do not make me feel the way GP's do. When I explained my situation to the psych I saw, he didn't really know what to make of the mental symptoms I'd suffered from, he just agreed to let me take small dose antipsychotics to try and ease some of the acute mental symptoms I was experiencing when I used to experience horrific hormone changes (this was prior to hormone treatment intervention). Not that the drugs prescribed did naff all for the rest of my symptoms. I'd even tried 3 different antidepressents, none of which worked and they made me feel worse if anything.

How long did it take you to get diagnosed with your issues from first being seen at 19?

humanbean profile image
humanbean in reply to ChristinaT

I had lots of issues, mainly gynaecological. I was diagnosed with endometriosis when I was 30, but I'd had problems since puberty. From that point onwards I had several operations over the next few years. But the info never seemed to really percolate down to my GP, or they ignored it. It was the IVF Clinic I attended that triggered some of the surgery, and some surgery was done privately through my work health insurance scheme.

It was the IVF Clinic that first diagnosed my "borderline" under-active thyroid in 1990 (which I was told required no treatment). I was still being told my hypothyroidism was sub-clinical 23 years later. It was 2013 before I got my first ever prescription for 25mcg levo and my GP wouldn't raise it because she didn't think it was necessary in the first place. I started treating my own hypothyroidism later that same year, and I hope I never have to rely on the NHS for thyroid treatment ever again.

ChristinaT profile image
ChristinaT

Gosh you really have had a bad time with it all, I'm so sorry to hear that. It's angers me when I hear this. Not prescribing medications when it's clearly required just prolonged your suffering. Its frightening to think where a lot of people would be if they didn't take matters into their own hands.

I'm so glad you've been able to treat this yourself, not that you should've had to mind. I wonder whether your hupothyroidism was the root cause of all your problems? And yet here is another example of you having endocrine and gynae issues (same as me).

humanbean profile image
humanbean in reply to ChristinaT

I suspect my gynae issues would have been less severe if my thyroid had been properly treated. But it's just an idea I've had with hindsight. I could never prove it.

ChristinaT profile image
ChristinaT in reply to humanbean

I couldnt agree more. I feel the same regarding my own problems

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