For anyone thinking about getting copies of your medical records a word of warning. I have just spent an hour going through mine and can say that you need to be strong. I can now see that for many years I complained of obvious thyroid symptoms but not once was this picked up on. It was implied that I was a hypochondriac and even that my mental health was in question. So be prepared.......expect the worst and you'll probably be fine lol
(Doing better now on T4/T3 combi - should not have taken this long)
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jezebel69
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Thank you for your word of warning. You poor thing reading this. I think I'd go through a broad range of negative emotions if I read the same comments on my medical records. There might very well be the same comments as your's! What a sorry state of affairs it is to be given these labels on medical records when the fault is not with the patient but actually at those who have limited resources for testing and finding the cause to the patient's symptoms. There must be thousands if not millions of people out there who have been or are still meandering along in the wilderness with their health issues because of this. When will the NHS catch up with all the resources that are out there to help patients get a better diagnosis of their health?!
One interesting exercise I went through with my own notes is, how accurate is the Summary Care Record?
I've had multiple surgeries (in real life) that were not mentioned.
Procedures that resulted in a "Normal" result were noted as being normal, but those showing problems (serious ones) were referred to with no result given.
There are various references to gynaecological info on my SCR that don't apply to me, they apply to another woman with the same name as me. We know each other, live near each other, used to work together, and are fairly close in age. Our hospital records are hopelessly entangled. We know this and discussed it a long time ago, but it seems there is nothing much we can do about it, other than be vigilant and try to prevent it happening again. As a result of this mix up (and other stupidities) bits of my body have been taken out, been put back in, taken out for a second time, and when last seen were back in my body again. God knows where they went while they were missing. Butlins perhaps?
ROFL at least you can have a laugh at yours. Mine claim me to be a smoker (which I'm not) and allergic to tetanus injections (which I'm not) and slightly overweight which makes no comparison to what I used to be :/
On mine, a corrupt NHS GP removed an entry where i had listed obvious and specific symptoms. This was so he could claim i had never mentioned them and therefore it was nothing to do with him that i needed an urgent operation. (which i was given within 3 weeks after i moved to another surgery)
I also have dozens of entries where i am labelled "anxious" instead of "overtly hypothyroid as a result of under-medication by incompetent NHS GPs".
And there is NOTHING you can do about it - suing for medical negligence is virtually impossible with the way the legal system is set up. I have always said the system is wide open to corruption and abuse by NHS GPs.
I doubt we know the full extent of it, because many people still think NHS GPs have their interests at heart.
Thankfully, the summary care record is the one i think i opted out of
I wish I had opted out of the summary care record too. It was only after I got copies of my medical notes that I realised it was so inaccurate that it was having a serious effect on my medical care.
I would say to a hospital doctor that X and Y happened in the past - and it would be something serious - and I would realise that the person I was talking to didn't believe me. It was like hitting my head against a brick wall. Nothing I ever said made any difference, I simply couldn't get people to believe me. As it turns out, the evidence that what I was saying was true did exist in my GP notes (to a certain extent). But the people who had summarised my notes into the SCR had done such a terrible job that lots of stuff got left out or "dumbed down". And I was so clueless that I didn't realise that any of this had happened.
Getting my notes was definitely a good thing to have done. I Just wish I had done it years earlier. I also, with hindsight, wish I had never agreed to having an SCR. But that horse has bolted, and shutting the stable door now will do little good.
This summarising of notes has impacted me and my daughter to. I have had a GP tell me point blank that something I have just told him about my daughter's previous care didn't happen!! I have also been discussing a dislocated hip from my younger days with a hospital doctor who had been treating me for problems with that hip and he said there was no evidence of it, which I took to mean there was no evidence of any damage to the hip. Turns out he meant he hadn't been informed I had had a dislocated hip in the past.
Of course it is not the GP's fault. I am about to arrange access to all my medical records and I will do my own summary so that at least I know what went on
I'm considering writing a statement to be held with my records. I'd like my side of the story there and not just their judgements and assumptions.
Everyone should have a read of their medical records, not least to see the mistakes that have been written. I discovered that I'd been hypo for longer than I thought, thanks to a frankly dangerous GP who knew nothing about thyroid matters.
My own experience is that the General Medical Council are disinterested in errors made by GPs and I no longer trust them with my health.
This is an excellent website for matters relating to medical records and patient confidentiality:
It's horrific to hear of the errors in so many medical records. I don't think I'm brave enough to read mine! However, I have started to be proactive. After I went for my last endocrinologist appointment, I received a letter from him which "strongly" advised me (in bold font) to stop "self-medicating". As I have never self- medicated, and I simply take the dose of Levothyroxine prescribed many years ago, which still works as well as T4 alone can, I was furious. I have enough trouble with GPs wanting me to be under-medicated and ill, without the endo suggesting I've invented the dose I take! So I wrote an equally strongly worded letter pointing out the facts, and sent it to both the endo and the GP to whom he copied his letter. I can only hope that they've put a copy of my letter on file - but if they didn't, I'll be able to supply another copy! I feel that I have a part-time job just dealing with the hassles created by doctors!!!
It's really awful and scary as well - we really have to be as well read about illness as possible in order not to be fobbed off!
I think the underlying issue in this country is that some GP's do not treat the patient as a whole and treat the bits of you that are ill without looking at the bigger picture and what other issues you have had in the past.
To be friendly with a lady on another group and she was a consultants medical secretary she used to ask hi. If he really wanted thing he said in records! She Said it was disgusting!
Do not feel alone over there..I finally got a copy of my labs done many months ago at my doctor visit last week...had to demand them after being told they were not on my chart, etc...the most vital 2 TESTS WERE NOT THERE!!! I needed the ionized calcium to check for primary hypothyroidism which persisted after surgery in 2010, & lipid density profile for unexplned high tryglyc & lipids...explntn of doctor was you dont need those anyway you are fine....this is the guy who missed the dx for years & has caused me great harm, & he ordered the tests...I assume it came back high & he deleted it bec he is responsible for interpreting it...what to do? Sane here in USA...I need this md for prescriptions....if I confront him he just will dismiss me, etc. Stuck bet the proverbial rock n hard place...have to decide what to do bec symptoms are back & worse...so sad everywhere in regards to patient rights & care
I have now looked through all my records and have been unable to find ANY complete blood tests. The thyroid tests just report 'normal' with no figures. And we all know what a cover up that is
What a waste of money as this is what I really wanted. Its only been since finding this site that I have been asking for test results and I have stupidly not kept them. Oh well - live for now and the future everyone
When I ordered my medical records the practice manager asked if I wanted all the lab results and all the letters (from consultants etc) I said yes. Unfortunately I wasn't aware of the SCR and wasn't asked but will now ask my gp at next visit.
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