Medical notes ~ incomplete and shocking!

I have at last, managed to get hold of my medical notes, but they are not all there and contain so many inaccurate and derogatory comments I am beside myself with grief! I always thought she wasn't very knowledgable, but was friendly and seemed to be listening so we stayed as my lovely old dr left my old practice in 1993. So for all these years she has been writing awful things on my notes, implying there's nothing at all wrong with me, and that I'm "just fat through lack of exercise" and "can't imagine she eats decent food" etc. I'm 5'4 and 10 1/2 stone ~ all on my stomach ~ limbs are like sticks and this is the heaviest I have ever been! It's like every time I've been in there she has been nice to my face and then written the opposite down. Between 2000 and 2005/6 I had unbelievable stress from all sides and confided in her, omg I wish I hadn't ~the things she has jotted in the margins! I have been trying to get my notes for years indeed in 2013 she says ONCE AGAIN she is asking for her notes to 'see where it all went wrong' for her. It's no wonder I never get anywhere if specialists are looking at this rubbish. It's a wonder the guys in white coats haven't come to take me away! My blood tests over the years have been appalling! Full of ! (abnormal) marks all over them! Never had a decent set of results in all this time! TSH 52.2! When results in the past have fluctuated, she has made reference to non compliance! When it became obvious that I was insisting on my notes this time ( despite her cancelling it with the practice manager on the grounds that I 'couldn't afford it' ~ I had my ESA money stopped in July ~ more stress!) she started saying " you know, sometimes we write little things in the margins" to which I replied oh that's ok I just want to see them. I had no idea! She is very resentful because I keep refusing flu jabs, antidepressants and statins, and has much to say about that too! When I asked her a while ago (after finding this forum) if she would monitor me if I managed to acquire some T3 she was fine about it ~ but she has written awful stuff about 'forums' and how I THINK I've got something wrong with me!!?? I went a few weeks ago to explain about the sleep apnoea and she has made me an appointment at the respiritory clinic but she has written : she has now decided that she has sleep apnoea! Been on forums! Discussed that symptoms not typical of apnoea but will refer to sleep specialist. I don't see the point in going now if the Dr is going to read all this stuff in my notes ~ he'll think I'm crazy! I want to see the rest of my notes. There is nothing on there about ME which left me hospitalised/housebound for 3 years, or any of my pregnancies which I asked for ~ just one line that says history Myalgic Encephalomylitis. I rang surgery and they said they wouldn't have those records because they're on paper. The practice manager is away for 2 weeks but does anyone know if I will be able to trace them? Surely they can't be just 'gone'? I feel bereft ~ I have had no income for 17 weeks and now this! If I didn't have family I would have starved! I feel sorry for all those who haven't got anyone to help them ~ this whole system is a disgrace ~ I've worked hard all my life and if it wasn't for idiot GPs I still would be. Sorry guys, just realised this is a massively long rant! x

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  • It sounds like you've got plenty to rant about! What an evil cow! I'm so sorry to read all this but, in some ways, it doesn't surprise me. They think they are so superior. Sending you warm hugs and sympathy. xxx

  • Thank you Grey, I don't know why I'm surprised either, as I always knew she wasn't knowledgable and have thought for a long time that they are all foot soldiers for pharmaceutical companies, but she always seemed sympathetic and I figured one day she would send me in the right direction specialist wise. Obviously, she thinks I am a malingerer and a hypochondriac, trawling forums so I can continue in poverty on benefits and watching the house I worked so hard to buy falling into disrepair. Are these people for real?! I didn't mention TUK by name, just corrected her when she suggested it was US site, and said it was NHS choices. It is the first and only time I have ever been on a forum, or the internet for that matter, and thank various gods for it! Years ago, before I gave up, I used to 'research' via books and force my late, long suffering father to take me to lectures by ME/FM doctors ~ this is heaven for me. All I know is when I found it, I cried for two days, and could barely read the links because of it, especially when I read Dr Lowe "she will have pain on her underside when sitting / lying, even on a well padded surface" ~ that's why I'm Mamapea because the kids say I'm like the princess and the pea ~ I can feel something under my pile of dunlopillows, pen,etc and it is painful and hard to me. I can't begin to thank people on here for their kind thoughts and advice ~ and more importantly, believing me. I need to see the missing medical notes so I am wondering if there is some way of retrieving them if they persist in saying " they are on paper so we wouldn't have them". They seem to be implying that they are not available to me since they were pre computerised ~ I don't believe it. If I ever get my benefits reinstated I will be seeing a functional Dr to get to the bottom of this, which was my immediate intention when I first found this forum, but haven't had a penny in the last 18 weeks, and had to use the money I had set aside from my daughter for doc and meds for household bills ~ I only have lower rate disability allowance of £22 per week. As for changing GP, I think I may stay for a while, in the hope that I obtain an improvement via this forum, and I can then push the evidence in her face (one of them) prior to dramatic exit, which I do not have the strength for at present. I am quite serious when I say that without the hope you guys have provided I really don't think I could carry on at this point. Never underestimate the importance of what you do on this forum ~ thank you so much for being there. Mamapea xxx

  • Well, I don't know if it's any comfort, but that GP must be feeling terribly embarrassed, now, knowing that you have read her nasty comments. I bet she never imagined that would happen when she wrote them! She thought she was untouchable, and could do what she liked. Now, all her pigeons are coming home to roost! Serves her right!

  • Grey, they were my thoughts exactly ~ I thought about her mentioning 'sometimes we write things in the margins'. No wonder it's taken me so long and such persistence to get the measly few that I have. Now I think back, she always managed to change the subject or take me down a path of conversation that she thought would distract me ~ it worked ~ she's very good ~ no wonder she got on so well with my charming ex husband ~ two peas in a pod! For years, she has been writing "still asking for copies of her notes, still thinks there's something wrong with her" I gave DWP permission to contact my GP re my illness ~ god only knows what she told them! She did provide me with a sick note which just had fibromyalgia written on it ~ she didn't fill in any bits that required comments on disability ~ that would probably have been helpful. She wrote: presented for sick note, still wants copies of notes to show people. Still on forum. I thought I would never be able to go back grey, but two can play at that game ~ I'm going to carry on as if nothing has happened, politely request the rest of my notes ~ which incidently never mentioned showing anybody ~ I requested them initially 4/5 years ago ~ I only found this forum at the end of April! ~ and I will be friendly but tell her nothing! tbh she's useless and I don't want her to monitor me! I'm very grateful for this forum, it has given me the courage to go it alone. Many thanks Mamapea x

  • I totally agree with your strategy! Play her at her own game - and keep her on edge and dangling! - until you get what you want. Then, go in for the kill!

  • Hi I'm sorry you found out that way your GP is 2 faced and you are not having a massive rant. If someone you are suppose to trust with intimate details of your life is found to be a judgemental [insert your own swear word] and not treating you professionally then it isn't surprising you are upset and furious.

    At least with the rude GP I had he was rude to my face. I could also see some of the rubbish he wrote down.

    The only thing I can suggest is:

    1. Change practices. You need to get away from the toxicity of that practice as unfortunately you will never trust a GP in that practice again. They do discuss patients with each other. When GPs write a letter to specialists some GPs put in these types of comments. As a result specialists often don't read your notes until you are in front of them.

    2. Take care of your own health. So always get your test results and if you don't know what to say to the GP say nothing. However refuse to let them alter medication if you haven't done some research first. One thing I repeat on here is as you have a chronic condition never say you are depressed unless you are sure it isn't due to the condition. There is nothing wrong on coming on here before your GP appointment and post a thread first to get ideas on what to say or ask for.

    3. When you find things on the internet instead of saying it is from X forum state very clearly instead the advice came from a specific charitable organisation. So in the case of this thyroid patients forum just state you got the information from "Thyroid UK who are a patient support charity recommended by NHS Choices". Many (but not all ) doctors are scared when patients know more about their condition(s) then they do. Those doctors hate it when you go online to condition support groups, ask other orthodox trained medical, health or sports professionals, or if you have family members who had the same problem imply it is could be genetic. Remember most GPs know SFA about the detail of anything and SFA about nutrition and sports science.

    In regards to your sleep apnoea appointment please go. I lodged with a lady who had it. Her GP was extremely rude to her and the specialist she saw pointed out that it was common for patients to turn up who hadn't been believed by their doctors.

  • Thank you blue bug for your kindness and advice ~ it is so appreciated, I agree I would much rather people were rude to my face and say what's on their mind, instead of being false, then at least you know where you stand. Either she's very good at acting or I have lost my ability to sniff out b******t due to being ill for so long. I definitely intend to take my health into my own hands, especially with this revealation! See my reply to GG re: changing practice. As regarding depression, it was kind of a big thing (long story) so she knew a lot of it, although none of it my doing, hence always sympathetic. I just told her forum was NHS choices, and she acted pleased and interested when I said I had hit the jackpot with my symptoms ALL being on here. She said she would monitor me, and then mocked me for for "listening to people on forums and T3 making no difference" on my notes. I don't understand people like this, she seems like the nicest person ~ you live and learn. I seem to be living longer than I am learning lol! I have paid £50 or at least my daughter has, to read how low all my levels were on everything and haven't got the info I wanted as they say they haven't got it! I am particularly interested in my pregnancy notes as I notice my TSH was 15.4 during pregnancy, although no other results are mentioned ~ I dread to think... I keep looking at my youngest daughter walking around the house and thinking its a miracle! As they all are anyway, of course. Makes me wonder though about all the lost twins, and the triplet lost from the twins that I have, (no IVF ever) and the one before the twins that died in utero at 20 weeks, and all the other bloody problems that you imagine your GP is in on the ball about! I am completely finished with NHS GPs ~ the end of the line. I consider myself lucky to have my children and life, no thanks to them in my opinion. If I become desperately ill, I will call a paramedic ~ they're absolutely brilliant here! I really appreciate your support at this stressful time ~ I can't thank you enough ~ I am so down today. Isn't it crazy how we get more help from people we've never even met than our family Dr of 20+ years?!! Thanks so much for it Mamapea xxx

  • Btw please don't give up on all GPs . Mine is lovely . .according to TSH I should be hyper and have shakey sweaty hands but I don't I'm fine and doc girls by what I say and ep what he can see in front of him. I don't always see him but have been very happy with others in the practice. Just a shame the early one (he left rather quickly but could be because he misdiagnosed anither women who had cancer and told someone who thought she was having twins that she defo wasn't . .she had twins!)

    So ?I hope you do find yourself another practice with GPs who dare endocrine savvy.

  • Sending you big hugs! I'm sorry that this nasty person is your doctor , my advice would be change surgery and doctor immediately but speak with the practise manager before you go to lodge your upset about this awful doctor and also maybe stop her in her tracks from doing it to somebody else , you must move as you have no trust there now ..good luck x

  • Lola1956 thank you for your reply ~ I feel I am getting over the shock of it after all the kind messages, but it seems such a shame GPs are not more honest with you ~ what a nightmare ~ I'm just going to stick with the forum and not bother GP unless really necessary ~ I was never going to get adequate treatment anyway ~ so nothing lost really. Frustrating not having money to get started, but hopefully that will change soon. I live in hope.

    Appreciate the hugs! Thank you. Mamapea xx

  • I got exactly the same for my £40. Not one single blood test was included which was the purpose of my request. I have also had very poor treatment all my life and have little respect for GPs

  • Yes here here!! Poor you being treated like that, its no wonder they dont want people to see their records as there is nothing of interest on there apart from down right rude remarks about patients. it's disgusting, we turn to a doctor when we feel ill and hoping they will help us get better, i think you should go to that appointment thats been made and hold youre head high and dont let the gp win, i remember the days when if you saw a doctor they didnt need to look in a text book or internet for advice as they knew what they were doing, sadly docs know jack these days. Youre doctor is very unproffessional and has more faces than a church clock and that has 4!!⏰⏰⏰⏰.good luck.

  • In the old days GPs weren't any better. They could and would still be rude to you if you had signs and symptoms of diseases they didn't understand at all or the implications off. The politer ones would just brush you off.

    One of our family doctors, who I only had for a couple of years because I moved, was fond of saying to patients unless you are dying don't come and see me.

    On occasion they would would still go and consult their textbooks, discuss with colleagues over the phone and ring up the specialists in the local hospital as they do now. They would then randomly ring you up after they had basically told you to go away as it wasn't serious.

    It is actually better today they consult with the internet as the advice is more up to date than their textbooks. What is worse today is many practices refusing to let you be chaperoned at appointments without them being warned in the pretence all appointments would take longer.

  • Oh I agree - I'm 69 next week and my poor treatment history goes back to when I was 19!

  • Jezebel ~ that's terrible ~ your whole life gone by ~ although I'm feeling a similar thing regarding myself now! I find it a bit suspicious that your notes happened to be incomplete too. There is no fighting these people ~ best to live and learn and sort yourself out without them. It's a great pity they have been allowed to waste so many of our years. I am comforted by the fact that knowledge I have gained on this forum means my daughters will not have to suffer the same sad fate. Thank you for your reply and take care of yourself. Mamapea xx

  • Oh, i remember my lovely old practice of just 5 doctors and they were very good doctors and they knew their stuff but i am goin back 25 years. I surpose thinking about it, it varies in different areas and we wull always get good and bad everywhere!!😊

  • bluebug thanks for extra info ~ I have chosen the quiet, peaceful path ~ as outlined in other replies. I appreciate your help and advice very much thank you Mamapea x

  • rmichelle ~ yes, maybe I will go to appointment as I've nothing to lose at this point anyway. I had a good doctor years ago ~ or at least he seemed so ~ he was certainly much more knowledgable anyway. I suppose what's done is done and I have to move forward ~ so hard when you feel so ill and so many obstacles. Your reply cheered me up anyway so thank you for that. Take care Mamapea x

  • Definately move practise! What a terrible GP. And how incompetant that she has ignored a TSH of 55!!! She is not fit to do her job if you ask me if she ignores blood test results like that never mind her inflammatory recording of your visits. I would move practise then put a complaint in if it was me. You need proper treatment! Go to you sleep apnoea apppontment. Explain about your high TSH blood tests and lack of treatment. It could be that with proper thyroid treatment your sleep apnoea may abate or even go away. Absolutely terrible!! GPs are not meant to make personal derogative notes like that. Sending you the biggest hug.....

    Years ago I was referred through to a specialist due to what turned out to be heamoeroids. The specialist says they need to treat your hypothyroidism then this wouldnt happen. I asked him to tell them that as I was constantly borderlineon the blood tests at the time. So sometime specialists can be helpful! 😊😊

  • Wavylines ~ sorry I thought I had replied ~ must've dreamt it! lol! Having been reading so many kind replies today I have decided to go to hospital appointment, although not holding out much hope ~ I also think that apnoea may be corrected by adequate treatment ~ T3 I feel, from reading posts and study links from here. I am not obese, the kids say I don't snore, but all the symptoms are there. I seem to fit the exact Dr Lowe description of someone who needs large doses of T3 and I'm looking forward to having private tests done ~ if the DWP ever decide to reinstate my pittance! Grrrr! I have been constipated as long as I can remember ~ despite good diet, and also suffered with haemorrhoids in the past ~ they seem to have given up the ghost thank god. The only real relief comes from magnesium citrate for me and some golden linseed, lots of veg, etc, but it's the mag. that does the trick ~ I think that will improve with correct treatment too (fingers crossed) I just really want rid of the pain ~ that's the bugbear ~ I can cope with the rest.

    Thank you for the hug ~ take care Mamapea xx

  • MamaPea1,

    How much did you pay for your records? I don't believe your records are sent to specialists. Usually there is just a letter of referral from the GP.

  • Hi clutter, thanks for your response, I paid £50 for the notes, but the areas of interest are incomplete re pregnancy, Myalgic Encephalomylitis, etc., I have been told by surgery they wouldn't have them, as they would be paper notes at that time. I can't believe medical notes disappeared into thin air with the advent of the computer! Where would I be able to find these 'missing' notes? There is a one liner in History: Myalgic Encephalomylitis. and that's all, no pregnancy notes, which I had particularly asked for, just a load of appalling test results and derogatory comments. I am so upset and feel cheated somewhat, but I have started to view it as a blessing in disguise ~ bit like my divorce lol ~ as I will no longer be fooled by this person, and when finances allow, can move forward with the help of this bloody marvellous forum and a functional doc if possible and I am keeping hold of the idea that I will get back my previous good health. Trying to stay positive as stress causes shaking and the tremors clear the I pad! Lol! Thank you for helping me. Mamapea xxx

  • MamaPea1,

    Write to the practice manager and inform him/her that your records are incomplete and you require the missing paper records. If they are in storage they should be retrievable. The £50 you paid should cover supplying electronic summary records and paper records.

    If you don't get a satisfactory response contact the Information Commissioner ico.org.uk/for_the_public/t...

    ps you should also inform the practice manager of erroneous records and correct them.

  • Clutter ~ thank you for your reply and link ~ I will write to them, I did ring but secretary and a GP unknown to me said I would have to speak to the practice manager who is on holiday for a fortnight. I want to be ready and armed for her return. I asked for paper copies which they have provided, but I want ALL of them as I wonder what was written at the other surgery also. My version is this ~ I have always been on the hypo side, pre Hashis, and suffered with high oestrogen and prolactin, (due to Ortho Novin 150 given to me for 5 years as a teenager to 'regulate' heavy periods ~ horrendously high levels of oestrogen ~ god only knows what my mother was thinking) anyway,in the aftermath of that, all was well except migraine, heavy periods, constant mastitis, and then the miscarriages ~ long stories.... Then whilst on my 3rd successful pregnancy with twins, was triplets but lost one at 3 months ~ all non identical, so other 2 were fine thank various gods ~ I caught glandular fever from my daughter who was 12, and although she suffered terribly, I was ok ~ I had feared the worst as she was never ill, but I was fine in comparison. Then, several months passed and when I stopped breast feeding the twins, on advice from doc re tiredness, I became so ill, collapsed and hospitalised. This collapse coincided perfectly with me being exposed to polio syrup that I accidentally consumed whilst kissing a screaming twin who had had jabs ~ first and last I may add ~ and had drooled it into my mouth. A few days later, in hospital, partially paralysed and desperately ill, the hospital Drs had decided after much head scratching that I had bowel cancer (my body had shut down and nothing would go in or out). So many inconclusive tests and weeks later, I went home and remained ill and partially paralysed for 3 years. I had to be carried down and upstairs. Despite my insistence that it was the polio vax combined with the still circulating EBV, they all claimed it was impossible and no one knows how ME occurs. After the 3 years, in May 1996, I began to feel better, but remained tired with aches and pains, but could manage to return to work, however, nearing the menopause and having an enormous amount of stress, I crash again and told I have fibromyalgia, Sjogrens, Rayneuds, a bit of everything that may cause pain, and then: 'oh you're still a bit hypothyroid'! I want to know HOW hypothyroid I was because in retrospect, their idea of a 'bit', I fear, is going to be a lot different to mine! All the crap pharma I have consumed that has impacted on my health even more over the years ~ and when you say you feel worse on them, they write horrible things about non compliance and malingering. I want the notes, clutter, and I am glad to be out of it all. I'm sorry for all this lengthy ranting on a Sunday ~ I zoned out there for a while. Thank you for your help, I am overwhelmed by everyone's responses. Mamapea xxx

  • Mamapea1,

    I was provided with my records going back to when I joined the practice. There were one or two records from my previous practice included but not the majority of them. I presume they were archived somewhere but I didn't chase them because I wasn't interested in them.

  • Clutter ~ there were none from my previous surgery only random one liners with no info attached. I think I will chase up to see how far I get ~ I would like to see them although I can imagine.....

    Thank you for taking the time Mamapea x

  • Mamapea1,

    I'm not sure how far back your current practice has to go but as your previous practice should have forwarded your medical records on I would have thought that your current practice should retrieve them from storage if required. You might want to check this point with the ICO while your practice manager is away.

  • Thank you ~ my thoughts exactly ~ I will do just that x

  • Excellent advice Clutter all paper notes are held at a central storage facility and the £50 fee covers retrieval and full copies of all held records. I have had to do this myself. I was also incredulous to find that the receptionists made snarky remarks in the admin section as well as the GP making subjective comments. Unprofessional and a disgrace.

  • DJR1,

    Thank you, I thought that would be the case but wasn't 100% certain.

    I obtained records going back 30 years from my practice and there was one error I picked up on. Not one snarky comment from any GP or receptionist. I hoped all practices had stopped that unprofessional behaviour years ago.

  • I also paid £50 for my medical records. I specified the date just before I was diagnosed with hypo - 1981. They did include hand written notes along with the computer ones, which only started about 6 (?) years ago. Mine too included rude comments, high TSH that was ignored, non compliance etc. It took me months to get over the shock of reading through it all. But now with this fabulous forum I'm better and have moved forward. The main thing for you to do (& I haven't read your profile) is to get your thyroid function optimal.

  • Thank you marigold ~ I am overwhelmed by kind responses ~ I think my surgery went online quite a while ago but I think there is more to this than meets the eye (although I could be paranoid). Anyway, it's encouraging to know you received your hand written copies but I'm sorry to know that you too have been slandered by your GP, I think this is awful ~ who do these people think they are? I have lost all respect for any of them now. You are right about this forum and I'm glad you're on the mend ~ I hope to follow in your footsteps soon. Many thanks for the hope ~ take care. Mamapea xxx

  • Thank you. I have remembered now since replying to you, that I have a period of around 2 years of medical notes missing. I discovered that many years before paying for my medical notes. I wrote around to all the GP surgeries I had been with and they all replied Can't find them. During those 2 missing years, I gave birth to a premature baby boy who died. I realised that they knew they had been negligent. No doubt shredded all proof so the gynae particularly couldn't be sued.

  • Omg! Marigold ~ that's terrible ~ this is something I'm suspicious of also ~ I'm so sorry for you ~ it's criminal! ~ if not, VERY coincidental! There are things going on that are very, very wrong if you ask me ~ I hope I haven't caused you to be upset.

    ((Hugs)) Mamapea xx

  • That was in 1979 and I went on to have a healthy baby in 1981. Then my thyroid caused problems! But I now know that I was very hypo during both pregnancies. I haven't trusted doctors of any type for many years now. I hardly visit my GP surgery

  • I also had a healthy baby in1981! Well, actually had a hole in the heart, but it worked itself out ~ she now has 3 of her own I had hyperemesis gravidarum all the way through ~ never kept a thing down and lost 1 1/2 stone ~ she was 9lb 2oz! I have just discovered I have been very hypo with my last one ~ not sure how she made it ~ and because of all the ones I've lost, and the fact that I especially asked for those particular notes ~ I'm wondering where they are ~ I don't trust any of them I'm sad to say. mp x

  • You were very restrained giving a date range I was so annoyed that some GP practices offer Full Record Access Online I decided to get value for my £50. I asked for everything from my date of birth to the present. The fee is capped so you are free to ask for as much as you want. It proved to be very interesting as I had forgotten many issues and I could see trends indicating that I had Hypothyroidism long before it was diagnosed. I am now copying that information and creating my own medical record online using the NHS approved Evergreen Life App.

  • DJR1 ~ that's very interesting ~ I understood you could get it all for the £50 which is why I requested all of them. Did you actually receive everything? I also wanted to look for trends and clues, although I know anyway, but as you say, you forget things when you weren't looking for them at the time. I requested paper notes ~ I'm rubbish on computer ~ were yours all online? I will look into that App maybe a family member could help me with it.

    Thank for reply and info. Mamapea xx

  • I did get a lot of stuff. It was in a total muddle. Unfortunately the TFT results for most of the last ten years were just recorded as “normal” with no figures or reference ranges. So useless apart from the original test which had T4 and TSH. The test after that seemed to be just TSH. I did get letters etc from 1959 but who knows if I got everything. TBH there were 4 letters from the last 3 years that were useful the rest was largely rubbish. What a waste of someone’s time to photocopy it all but they had the choice to allow access online but they refused. What can you do?

  • DJR1

    The whole system seems to be in disarray ~ I expect if I do obtain the rest it will only cause more upset. I doubt anything will change even when an increasing number of patients gain access. They don't seem to have any shame or obligation to provide a decent service in any area! Thanks for your reply

    Mamapea x

  • (((MamaPea1))) What a horrible time you're having. Are you getting any help from CAB or your council welfare rights officer about the ESA? I don't know how people manage without sympathetic partners or families under this cruel regime...

    As for your GP records, I'm in the same position. Change practice if you can. I know one should attempt a formal complaint, but they are rarely upheld in even the most obvious cases of medical abuse or neglect, so you could consider putting a comprehensive, formally worded statement on your record instead. Detail the missed abnormal results, and correct erroneous assumptions and judgments in as dispassionate a way as you can manage. If you can think of some withering but succinct remarks to sum up, that might serve as a polite warning to future GPs not to dismiss you so readily.

  • Hillwoman ~ sorry for the delay in replying ~ so slow with i pad and shakes! Yes ~ I have got welfare rights acting for me ~ they can't understand what's going on. They have now sent a letter to DWP threatening court action. I'm sick of it all ~ I don't remember these delays in taking NI payments out of my wages in all those years! It's disgusting the way people are being treated ~ it reminds me of the thatcher years (lower case for name intentional) ~ I worked all through those, so was ok, but you heard terrible stories of benefit stoppages. There was an old woman on TV recently who had serious Alzheimer's ~ her husband brought her on ~ he was her carer ~ she hadn't got a clue of what was going on around her. She had apparently scored 5 points at her medical assessment ~ you need 15 ~ so they had appealed and the appeal awarded her 0 points!?! It's a disgrace to treat sick people in this way ~ I couldn't help wondering when looking at her if she was yet another victim of aluminium toxicity and wondered if she'd had loads of flu jabs! Anyway, I am more fortunate than others as my daughters have once again stepped in to help. I've been offered tickets for the food bank but I couldn't handle it, and felt others are more in need. Still made me feel like I'd hit rock bottom though, when they offered them. I hope I can find a way back from this with proper meds ~ the only way is up, as they say. Thank you for your advice and time.

    Mamapea x

  • Take care, Mamapea x

  • For £50 I would expect to have my entire medical history plus all test results bound and presented in a magnificent folder.

    I know it used to be common but I thought that sort of nasty writing of comments and personal opinions about patients was supposed to have gone out of fashion when patients were allowed to access their notes.

    If you have got written evidence of this sort of rubbish then I think you need to photocopy it, highlight the offending parts and send it to everyone who is involved in your practise starting with your practise manager and finishing with your MP and once I’d done that I would write to your doctor telling her that you liked and trusted her and how terribly hurt and disappointed you are in how two faced she turned out to be.

  • Fruitandnutcase ~ yes ha ha! Well it looks like that's not what we get! Those were my initial feelings, but having spent a couple of days/nights stressing out about it and inducing a rather persistent attack of tremors in myself, I have decided to meet like with like and be nice and friendly and carry on as if I never read or didn't understand them ~ I feel that she is no help to me and if I go it alone and improve I can make her aware of my progress (hopefully) and will also be in a stronger position health wise to deal with it. She never thought I would actually get possession of those notes ~ I'm obviously easily blagged ~ but not by her anymore ~ I will try and get the missing notes, but I'm not going to make a fuss ~ she has kept me ill long enough ~ if I get upset it will impact my health ~ it already has done ~ I will play the false game until I feel better then decide on a plan. It is only being on this forum that has given me the confidence to go it alone and the replies from everyone. Thank you so much. Mamapea x

  • Good for you - two can play at her game. Once you have got all the paperwork and test results you need you can see what you want to do then. In the meantime be Mrs Sweetness and light. Good luck 😉

    PS - if you felt up to it you could always make your own folder with your doctor’s nasty notes highlighted and carry them with you when you go to see any specialists - or even just doctors - in future just in case you need to refer to them.

  • Fruitandnutcase ~ yes that's the plan for now. It's not the one I had in mind before I posted on here, but I feel it's the best way forward ~ and have come to the conclusion that I don't really need her help ~ maybe the odd annual test ~ but hopefully I will have moved on by then. She did actually do some tests for me recently ~ coincidentally when I insisted on my notes ~ even managed to do a T3 and a cortisol! ~ all unheard of before ~ weird! Anyway, from reading on here, it seems they're all cut from the same cloth. The good thing is I don't care anymore and thanks to all the support and kindness from you lot today I feel ok on my own. I really think it will cause her more stress (and hopefully me less) if I play the fake game ~ not really who I am, but I enjoyed drama at school, as I recall lol! Thanks for the help and advice Mamapea x

  • PS the highlighter hovers as we speak lol! mp x

  • That’s the spirit - you can sit there with your highlighted notes knowing that she hasn’t a clue that you’re playing her system. 😉

  • I hope you have taken copies of all your notes. That treatment is disgraceful. I also asked to read my notes but had to read them at the surgery and just take notes. The notes if the doctor who ignored my symptoms (feels cold, thinks she has put in weight) were not very long but he noted I'd said I screamed at my daughter (and I knew that was not normal) but the best he could come up with us referring me to a psych!! Oh how I wish these people could feel what it us like to be hypo. I spent a fortune on homeopathy as a last resort.

    What I discovered was that I had NO NOTES from before I went to that practice so no childhood or teenage notes which could have been useful. Like I did not exist medically before the age of 22 but did not discover this until I was in my 49s in the 1990's.

    I just find it so sad and angry that we are STILL being treated so poorly and as if neurotic and hormonal is the default for women. It thought I had done with thyroid related stuff and only came to this sight out if curiosity having been referred to the AMD site initially. Why is this not more publicly known?

    Group hug needed!!

  • catseyes thank you for your reply ~ I too was told I could come in and 'look' at my notes, but as I can't sit for long in the same position, and would have to have written down years of test results I declined ~ anyway, by the time that was offered, I felt it was just another ploy to prevent me seeing the notes part, as the offer seemed to be "results". I too had appointments with psychologists, but in fairness I was very distressed at that time because of life events ~ but I can't help thinking if I hadn't been hypo I would have handled it better! They will persist in telling you that results, and therefore YOU are fine, when neither are true! It seems to me if you get a doctor who looks no further than the ridiculous NHS guidelines and take nothing else into account, you are doomed. You will suffer continued ill health and when you return to try and resolve the suffering, they will ridicule you because they don't have the knowledge or breadth of understanding to deal with it. Worse still, if you are then unlucky enough to get sent to a 'specialist' who only has experience/interest in a narrow field, he will 'diagnose' you with something in that field so that he can prescribe the meds that he is familiar with or he has a particular interest in prescribing. Then when the inappropriate meds don't work and you get worse, so stop them, you are accused of 'incompliance' and as they have nothing else left to offer, you get the blame. It is a ridiculous situation that I want nothing more to do with. If I hadn't been part of it for so long I would have been in employment still and in a position to escape it a lot earlier. My only regret is that I didn't hear about this forum earlier, but better late than never! I lived in hope using that system for too long, but I think things happen for a reason, ~ somewhat philosophical today thanks to this forum ~ and now that I know my GP has little interest in my recovery and even thinks there is nothing wrong with me I feel more empowered to move forward and treat myself. We are viewed as neurotic or hysterical if we don't fit into their 'norms' you would have imagined this would have died with Freud! I actually chose her because she was female and friendly when my previous GP left! It has hurt my feelings after such a long time, but alleviated any guilt I may have felt in going against her views ~ although why I had that god only knows! I am a glutton for punishment lol!

    Thanks for hugs! You guys are so kind! Mamapea xx

  • Mamapea1, This is so shocking! I am so sorry that all of this happened to you. Hugs! I am in the US. You all over there have to PAY for your medical records? Seriously? Over here, by law if a patient requests medical records they must be released within a certain amount of time. Medical staff cannot tell you "no". If they do, you file a complaint with state medical licensing and they will investigate the doctor. Speaking of which, can you file a complaint against her medical license, so that others will see that patients have complained about her? Can you look up her medical license number and see if she already has complaints filed?

  • ShootingStars ~ thanks for the hug! Yes it seems we have to pay for copies of notes and also an increasing number of meds that were on prescription not so long ago! Certain sections of our 'wonderful NHS' are in complete disarray ~ there is also a subset of politicians hellbent on its destruction, which doesn't help! The problems are not addressed in a sensible fashion, so they escalate and cause much misery! I am quite happy to pay for things like notes ~ paper, extra time, etc. although I thought £50 was a bit steep as I am currently unemployed ~ I would have preferred them to have been complete and not full of inaccuracies and hurtful remarks, but there you go ~ a sign of the times! We also have a rule defining a timescale of receiving copies, I think it's 40 days ~ but I was easily dissuaded from insisting and GP went to quite extreme lengths in retrospect to assure me they would be of no relevance, so that was entirely my own fault ~ too polite for my own good! I don't intend to take any action ~ too much red tape, and a nightmare for stress levels! Unless I happen to hear of a local doctor that looks promising ~ unlikely ~ I will stay where I am and only attend at the request of the surgery for annual test and med reviews, which, in truth, are mostly irrelevant anyway, and I may not need them soon, with luck and assistance from this excellent forum. We do have some great aspects to our NHS ~ paramedics are fantastic here and put up with so much ~ but some departments are going to hell in a handcart because of corruption, misinformation and politicians who couldn't care less about it.

    Take care, and ((hugs)) to you too! Mamapea xx

  • My favourite session to run as in service training back in the days when I got out of bed and went to work, was called defensive documentation. That was a term coined a long while ago to ensure that our notes, a legal requirement of practice, were up to snuff. I took notes at least 6 months old for every member of staff and had someone else review them. We had very strict standards and practices but this was a way to bring home their importance as an ill conceived note is recorded for ever, and we were directly accountable. The bottom line I used: do you want to hear this read in court and to try to defend it? Then don't write it. They were to be unambiguous, consice and contain sufficient detail to summarise the session that the patient would recognise.

    I had thought that medics were even more aware of the issues but have also found that when it comes to my care they write any old rubbish. They obviously feel no shame, personal or professional, and are not properly managed. Who would agree that this sort of rubbish in a legally required document was good practice? Once written the laws of libel apply...

  • cwill thank you for your reply. Well, no such standard of practice here apparently judging by the number of members finding themselves in a similar position! No shame, no effective accountability ~ and no conscience, just a very narrow minded and somewhat superior attitude towards patients that stretch their knowledge. I wonder if some GPs have any interest in what they do ~ I wouldn't care to work for a system in which I couldn't expand my knowledge or free thinking. The only expansion they seem to do consists of going to presentations promoting the next new drug that will fill the overflowing pockets of big pharma. Wouldn't it be great if they focused on successfully treating people so they didn't need so many drugs and could in turn contribute to society once again? It's such a ridiculous waste of money and so corrupt. I could wallpaper my house with useless prescriptions for these new drugs that GP " thought would help"!

    I'm sure they may help some, but they can't be used as a blanket fix for everyone. Functional doctors should be available on NHS and should be the first port of call. Oh no wait ~ then a lot of GPs and big pharma stuffed suits would be unemployed ~ I wouldn't wish unemployment on anyone, but think how much money would be saved!! The money could be redirected into green anti pollution projects and organic farms then they wouldn't get so ill in the first place! Utopia! I'll dream on .......

    Take care. Mamapea xx

  • It took three years before I was diagnosed despite showing just about every symptom that is typical/atypical/unusual/rare for the disease.

    It was only by chance that I saw another doctor who identified what was wrong straight away. She confided in me months later that they weren't sure I was going to recover.

    You can change doctors. I would advise that as soon as possible. You have no confidence in your present one. Write, or get someone to help you draft, a letter of complaint to the practice manager about the condescending and inaccurate notes .

    I would say that the anti depressants many help as having problems with your thyroid can produce depression. One doctor I saw, who had been in charge of a mental unit before becoming a GP, said that when he had someone arrive on his unit with severe depression the first thing he did was to test for thyroid problems.

    I hope you have copies of the notes for your reference.

    I hope that you find support soon and everything works out for you

  • Geo-Lesley thanks for your reply and kind thoughts. I too think I was hypo for a long time with all the signs. They like to keep you in the dark when it's not working out for them. She had written "patient unaware of results" next to crazy results, presumably so another GP didn't let the cat out the bag. I have no confidence in any of them now so it's the devil you know now. I feel if I make a fuss it will jeopardise my health and probably have an unproductive end result. I did try different antidepressants but it's the pain that's the problem now. A bit of gardening cheers me up no end, but can't really manage it now. I wish they all tested for thyroid when presented with depression ~ one of my daughters has it now mildly but out of character ~ of course, despite extensive family history, no test, just sertraline which didn't help so she stopped it. I will get some private tests done for her. Yes I have the paper copies but incomplete so will try and chase up missing parts. I am looking forward to moving on and getting started on something effective when finances allow ~ fingers crossed. Thank you and take care Mamapea xx

  • wow. what a bitch

    oddly enough a brit gp who had just moved to small town new zealand did same to me - perhaps she has returned (: . she was totally out of order but in that case often said the awful crap straight to me and it was horrendous. thyroid patients must be really nice because you never hear of an idiot endo being knocked off however bad the damage...

  • hi joydot ~ no it's a different one ~ they're everywhere! This one is more sneaky than yours! No I think thyroid patients are always too exhausted to put up a fight lol! Mamapea xx

  • Can't say I'm shocked really at Doctors personal nasty comments about patients. I wouldn't like to read my records. Just proves really what I thought all along, you can sense bad fibes off them when you enter their rooms. Practice staff are the same with their snooty & judgemental attitude 😙. Most Doctors aren't worth the £60.000 plus a year! (Most senior ones only work 2 day week😕)!!. If they start charging for their consults (£30/£50)they will have to buck up their ideas..or there will be empty waiting rooms😬😬. You can't get appointment anyway with the useless buggers anyways 😮

  • Nevertrustastranger9 ~ I never felt any bad vibes with this one in 20 years ~ except recently when I began to insist on my notes. I have felt them with others, just as you say, but this woman always calls me love and pretends to show genuine concern. I think that's why I'm a bit stunned. Also the really pleasant woman at reception has left and the new replacements are incredibly rude and dismissive ~ delusions of grandeur springs to mind. She has gone down to 2 days now ~ perhaps they should be paid according to their success rate and patient rating scores ~ that would be interesting! Thanks for message. Mamapea. xx

  • What a b*tch!!!

  • Good for you for sticking to your guns. She sounds horrendous , especially ignoring a tsh of 52.2. Surely she should be struck off. Iv'e had my share of arrogant gps and endocrinologists and my family siding with them. Maybe you should remind her the Hippocratic oath she took which she is clearly in breach of.

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