I got a copy of my medical records this week. Well some of them. The majority of them from birth to 1999 were caught in a flood at the storage facility and indiscipherable. However there were some parts that the HA in Notts did manage to recover.
Today I decided to begin reading these notes. And here is where I got a really big surprise, according to the very earliest pages saved was the first ever page of my notes. It seems I was born a healthy girl weighing 8lb 3oz! At six months my mother took me to see the gp as I was having problems weaning and was losing weight. I couldn't keep lots of food down. Tests were sent away. The results were rather shocking to me, now. It seems I did not have Coeliac but there was a Thyroid 'problem' - not specified. My mum is unaware of this and this is the first time I have been aware of it. And I thought I was first diagnosed 24 yrs ago. Just goes to show how interesting getting your records can be. This made the £50 worthwhile all on its own. I do wonder how I got through the first 40 odd years without treatment though.
There are a few more notes and there are letters from hospitals throughout my life so I expect these were copies the HA got from the various hospitals separately. It will take me some time to go through all this paperwork and I am making notes of any symptoms (especially ongoing ones) that I have been treated for and which could possibly be attributed to Thyroid. It will be a very interesting exercise.
No doubt there will be further instalments on this subject................
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Barb1949
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Interesting ! Did your Mum have a thyroid problem ? I have read that bigger babies are born to Hypo Mums - think it was in Dr Barry Durrant-Peatfields book. I had two babies at 9lbs and over in my 20's but not diagnosed until 59. Lots of clues in between - but not picked up.....
Wonder what the rest of your notes will reveal ? Will look out for the next instalment
That is interesting. My son was 10lbs 8 oz and like you I was not diagnosed until I was 56. Dr P told me that I have probably had thyroid problems for years.
Well there you are How is your son ? We have to keep an eye on those off spring They become big in the womb as they can detect the low thyroid hormone of the Mother and in turn produce their own growth hormone....quite clever and does show you how important thyroid hormones are.
My son is 22 and was diagnosed hypothyroid last year!! I had to force him to go for blood test and his TSH was way high. He is on 50mg of Levo and I think he needs more but he won't get off his bum and make appointment. I have told him that he has to manage the condition himself (as we all know). Perhaps as time goes on he will realise exactly how it affects him.
I saw Dr P last year who put me on Nutri Adrenal and Nutri Thyroid. Alas I don't feel they have made much difference so need to go back to him.
Oh dear - had a feeling that could be the case with your son. Sorry he doesn't listen to your advice. So familiar to me too !
Sorry to hear things have not improved for you - probably because you were undiagnosed for so long. The Greeks have a saying that it will take a week for every year of your life for things to heal. Which does support the fact that we recover more quickly when we are younger
Are your basics all optimal - like B12 - Ferritin - Folate - Iron - VitD. Am happy to help if you feel stuck !
My mum was only diagnosed with a thyroid problem last year, at 91. As far as we know she hasn't had any particular symptoms during her life. We did sit and talk about this not long after she was diagnosed. She tells me she feels better since she's been on thyroxine, although she didn't feel too bad before, just getting a bit tired in the day!! She is only taking 50 mcg, her starting dose, so I doubt she was very hypo.
Out of interest, I am the eldest of 4 and I was the heaviest baby, the second was born at 33 weeks, then full term 7 lbs 10 oz, then 31 weeks. My sister, No.4, was 1lb 10 oz at birth, she is now 50 and was also diagnosed hypo two years ago.
Wow your Mum sounds great. I do think her generation just put up with the subtle symptoms of being Hypo - and even the more obvious ones. We do know that you need good levels of thyroid hormones to carry babies to full term. My Mum suffered and it makes me feel sad now that I know so much more. She died undiagnosed at 80 15 years ago....at a time I did not know anything about my own thyroid condition.
Just as our ovaries stop secreting as glands - so does the thyroid become less efficient as we age. The T3 lowers. What a shame they do not test everyone in a Nursing Home - could probably give them a better quality of life and get them off masses of other medication.....
Shocking but somehow it doesn't surprise me! I've found problems in my recent notes, tests I've not had and wrong dates but that's something that could have had serious implications. Sure there must be a lack of following up information but who is at fault etc would be impossible to unravel.
HI I had a similar thing. Fought for treatment for 20 years, turned out gP knew as a consultant had told her! Disgusting in both cases.
Best wishes,
Jackie
Too bad it is virtually impossible to sue for medical negligence due to the way the legal system favours the establishment.
I have viewed my records several times and proved was what i already knew - NHS GPs are an unethical bunch who will do what is needed to cover up negligence.
An NHS gp retrospectively amended my electronic notes, taking out everything i told him about an issue he ignored - which later required urgent surgery. He then claimed i had never mentioned the symptoms to him, yeh right - why else would i see him? Despite the fact i retained contemporaneous notes (as i do from every nhs gp appt) the Ombudsman (the establishment) sided with him (the establishment).
Another time, an ignorant nhs gp - who had refused my endo's instruction to prescribe ndt, admitting she lacked the expertise in this area - entered a note on my file claiming all my medical problems were due to me taking ndt: a medication she conceded knowing nothing about.
Amazing how a personal opinion is legally allowed purely because it comes from a doctor: it had no professional basis whatsoever.
This lot have too much power - it is no wonder the system is so open to abuse.
I am so temtped to ask for my notes but also don't know how I'd cope with the inevitable anger I'd feel when I did read them.
I've decided it'd be a case of curiosity killed the cat, ignorance is bliss.lol
I am also waiting for your next installment.
I agree all they do is close ranks. It took 7 years for my Gp to admit the hospital infection I had after a hysterectomy and pelvic repair surgery caused interstitial cystitis. I felt like I was going mad, I had a prolonged urinary tract infection for over a month through negligence, then suddenly I get an incurable bladder disease? It was so obvious to me, but 7 years?
At the time I wrote to the hospital because they refused to admit me with complications. It was a Nuffield hospital because I had major panic attacks in an NHS hospital 10 years before, and I left after being prepped for surgery. So we put the cost on our mortgage for private treatment. I was supposed to have 28 days cover post op. The doctors came out to me because I was hemorrhaging, repeatedly called this Nuffield hospital and they didn't want to know. The doctor ended up shouting down the phone you are a bloody hospital aren't you. He called an ambulance and I was admitted to the Women's hospital in Birmingham. The infection I told the ward staff at the Nuffield but was ignored, was immediately found. Long story after that.
I did get my money back because they were terrified I would go to the press. I was too ill to cope with any of that, but wish I had asked for compensation.
Quite amusing over the years, when visiting a multitude of consultants, and watching them glaze over when I told them part of my history was a hospital infection.
Wow, When I first got pregnant at the age of 25 the doctor who examined me first was feeling my glands and asked if I had ever had a thyroid issue - I said no and completely forgot about it until my mum mentioned it much much later.
My first son was 10lb 2oz and my second at age 29 was 10lb 11oz. I had horrendous morning sickness with my second and was hospitalised numerous times as I couldn't even tolerate water. I have always been convinced that that was when my hypo started - (Until mum mentioned my first pregnancy)
I would love to read my medical notes from when I was a child - I don't think that I ever had a thyroid issue then, but there is plenty of other stuff that I would like to know which my mum won't discuss (nothing dodgy, just "history, so doesn't matter"). Does the £50 you pay mean you get a copy of everything?
It is very much a matter of luck what you get. I had a few odd sheets of paper from my childhood, but nothing earlier than age 10. I had some stuff - not a lot - from the surgery before the one I'm with now. The bulk of my notes are from my current surgery which I joined in the late 90s.
The more times you moved surgery the fewer notes are likely to be still in existence I think. Also, some people have lost notes due to flooding, fire etc. So it really is a matter of luck. One member told me recently that we aren't actually entitled to see notes from before 1990 but that many people doing the photocopying don't know that, so they just copy everything that is available.
I did read one shocking story, but really can't remember where. Someone paid £50 to a hospital for their notes and it was given to them on a CD which is fair enough. Unfortunately the software used to create the files on the CD was so old that they were unreadable. The person concerned scoured the internet for a way to open these files, but was out of luck. I could be embellishing a memory here, but I think the person ended up going to court to get their notes in a readable format or to get their money back. They lost their case.
humanbean, I did not see anywhere on the nhs site that you are not allowed to see your notes and apart from the ones that were flood damaged I have got all mine.
Before my notes were handed over I had to sign a form saying that I understood my doctor may have removed some if they were deemed to be bad for me physically or mentally, or involved comments on a third party. If any were removed I would never know about it.
I have read of some people who only got notes from a few adult years and nothing earlier. I think it is a bit of a lottery what people will get.
Beansmummy, Yes if you request a copy of your complete medical records, which includes all letters from hospitals, consultants etc and all test results from your practise manager it will cost you £50. If you look online on the nhs website it gives you all the details and explains why in just a few cases some things might be withheld. But this is unusual. It did take about three weeks to get my notes but it takes someones time photocopying loads of old stuff.
First baby 10 lb 5 (in 2000 ), second baby 3 weeks early but still 7 lb 12! Suffered with postnatal depression and had low energy for years. Just been diagnosed hypothyroid but after reading these posts I'm wondering if I've had it for years!
aDoctor, asking to see one's medical records doesn't mean a patient is 'doctor blaming'. Very few UK patients make medical negligence claims. It may be because one is looking for something that may have a bearing, or not, on current health issues, or those of offspring, and may have been overlooked. It may be that the records will help a patient challenge a decision to decline life or critical insurance cover or travel insurance.
My endo wrote to my GP suggesting I be tested for coeliac and referred to a gastroenterologist. The coeliac test was done but the referral didn't happen. There is an electronic record saying I saw the gastro for investigation on the day I requested my medical records. No copy of the referral note from the GP or letter from a consultant outlining the phantom appointment when I collected the records a month later. I prefer to think it was an administrative error than deliberate fraudulent action but it's sloppy. The gastro issues resolved otherwise I would have chased up the referral.
aDoctor, I am not blaming doctors per se of not doing the job. I actually think that my childhood gp was keeping an eye on my and watching out for symptoms. However, in the early days of the nhs patients were not always told all the diagnoses unless they needed to know. This was not negligence on the doctors part but just 'the way things were'. My early feeding problems were eventually discovered to be lactose intolerance. It appears to me the thyroid disease was just a diagnosis to be aware of.
It is important, in my opinion, that comprehensive records should be kept and whenever we change surgeries the new gp's should be aware of any problems that might throw up. Even if this is just a list of all and any diagnoses and their dates. In my case, my gp once gave me such a list before I moved to another part of the country so my new gp could be aware that these were real diagnoses. (I have a complicated med. history). I cannot see there is any difference in paper or electronic records apart from the possibility that electronic records can be more easily altered.
I do, also understand the problems with inadequate training. It is something that even the tutors are beginning to admit but change is a long and difficult road and new discoveries and treatments make even more change. I fear this will always be a catch up system. However, there are many doctors out there who finish med school and think they now know all there is to know. Don't keep and open mind about new things, or old things that have been proved and appear never to read another book or article. Unfortunately, on this forum, we all seem to have met these.
I know doctors work hard to gain their qualifications and work hard in their practises, but it would be wise for them to be open to other ways of seeing symptoms and patients than the last one they learned. In the med school where I work the students are constantly told, "This is a person, in front of you, not a patient or a set of symptoms. Remember this. They are the ones who can tell you, better than anyone or anything else what is wrong and how they feel." Personally I believe this is one of the most important pieces of advice they are given.
aDoctor, UK patients have been entitled to see their medical records since 1990 so any doctor with half a brain will have ceased writing the snidey little asides that caused offence in the past.
You have a peculiar attitude to the motives of patients. I'm not interested in a diagnosis being second guessed while awaiting test results, although I'm happy if my GP makes the time to explain what s/he is looking to confirm or rule out, why certain tests are ordered and how they may confirm or rule out certain conditions. I want to be able to trust my GP not catch him/her out in a 2nd guessed misdiagnosis.
Accurately summarising a consultation is important for continuity of care. Not many GPs will remember details of consultations 2-3 weeks ago and not every NHS patient sees the same GP at follow up consultations. An accurate summary will remind the GP of what was said and ordered in the previous consultation and is essential for another doctor to pick up what has and has not been done. My GP noted "TSH normal, FT4, FT3 & antibodies ordered as she appears toxic, no rx. awaiting ECG & U/S." It wasn't a diagnosis as she was waiting further test results but it was an accurate summary of the consultation. I'm assuming by 'toxic' she meant thyrotoxic and not me as a patient.
Yes wel first baby normal weight 7lb7oz second baby 9lb7oz....Dr P said that was due to my thyroid gland starting to struggle, diagnosed 16yrs later,after 4 years being told due to CFS....which went away once treated properly for hypothyroidism.
There is an ongoing problem in the NHS system still in not keeping patients fully involved. I have an ongoing problem in being copied into letters being sent out by my hospital about another very serious medical condition I have developed. Though I am please with very good treatment I am receiving there is an immense reluctance to send me copies of correspondence -shocking!! I learnt through the long saga of thyroid disease and treatment to get copies of everything. sigh. Looks like now I'll have to formalise in writing as verbal requests are getting me nowhere. I need these letter for future reference and to make sure of continuity of care.
My body my life and my experience of the NHS is woe betide you if you don't have these full details as the pressure and change in staff means things unintentional get missed or not followed up with the best will in the world. The governments own ridiculous GP times allowed for a GP to see a patient in means that a GP has no time to review your case properly never mind looking to connect symptoms up if they do not present in an obvious way or don't fit their standard protocol signpostings. Frankly this seems to lead down the route of the patient having to make suggestions or seeking private consultation to feedback to the GP which istcthencalways followed up. The alternative is GPs ignoring the 10min window of time allocated per patient consultation and the practise getting penalised for not keeping to their waiting times!!! Ridiculous!!
The trouble is though I am very supportive there is a tendency no matter how nicely you approach the medical fraternity for them to view you with suspicion once anything goes into writing from a patient but sadly I may have no choice over this if they keep ignoring my verbal, polite, friendly but direct requests.
aDoctor, I realise what you are saying is true, and the 'experts' are only as good as the knowledge they have gained since specialising. In my opinion, more the 'aspire' than the 'training'.
One thing I do know is just how difficult it is to get into med school. I am one of a huge group of people who conduct the various interview procedures nowadays. It is no longer a case of passing exams then going for an interview panel. They get all sorts of tests to choose, not just the really academic ones, but also the ones who have people skills, communication skills etc.
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