Hi, I just wondered if anyone can give my any helpful tips on how to get hold of my old medical records? I've more or less become obsessed with tracing back were my hep c came from, the only 'text book' at risk situation I've had was being given blood shortly after birth.
When I was about 8/9 years old I had to have blood test after getting tonsillitis and never fully getting over it (admittedly I played on it to blag days off school!) I remember needing a few blood tests as they were 'abnormal' and the conclusion was I must be a carrier of glandular fever or something like that...I've never really thought much of it until recently and now I'm wondering if the virus they detected I was carrying could of been the hep c (not known about back then).
I've been with my current gp for about 27 years and always my bloods have shown up flagged but my doctors never seemed concerned about it. I requested my historical blood test records from my gp surgery but for some reason they only go back as far as 2009 and now that I understand more about the meaning of things like alt's ect just at a glance I can see in all blood counts my levels were well off (high ALT, High GAMMA, high RBC, high HB & Low platlets etc) in all tests, not just on the odd ones which does beg the question as to why I was never referred earlier!?!
Does anyone know if there is any route I can go down to get hold of older medical records? Like I said its more or less become an obsession, I realise at the end of the day where the hep c came from doesn't matter, its getting rid of it that counts but it does play on my mind that I have always been told everything is fine...had I of known my liver was under stress or suffering liver disease I'd had certainly been more 'drink aware'
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Tess74
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To be honest I dont think obsessing over old tests results is the way to go and its not going to help. Your doctors should have taken better care of you, persistent high Liver numbers should be followed up every time!
Your FIbroscan and the Low Platelets indicate Cirrhosis of the Liver. You must not drink another drop, it will cause more damage since your Liver wont be able to repair itself properly anymore. There is no point in regretting drinking in the past, its clear that you werent informed well enough of your health issues.
Cheers Ralph, old records aren't going to change anything, I realise that...I just want to know.
funnily enough, I don't regret drinking, at all..I've had a lot of fun times when I was oblivious to having this virus, however I don't touch it these days for obvious reasons. My hep treatment seems to be working well so far & all my focus is on getting my liver as healthy as possible & keep it that way, to be honest I think I've been lucky thats there isn't more damage
If you've traced to 2009 just recall what doctors you had before then and contact them for all records. The same happened to me. My levels were always elevated then I moved to NYC in 2001 and the doctors there test for everything! I found out at age 50. I am now 64, if you really want to make your liver healthy, take up some powerful discipline like running, cycling, hiking for hours every week. I became a cyclist after giving up booze and a year of treatment. I need a transplant but I do not want one so I just look after myself, my doctors are astonished, I take no medications except a tiny bit of beta blockers for my varicies. Yep I am dying but I am also living. I had a life of drinking like a man can drink. My hep c is from age 20 when briefly I was an iv drug user. Even with all those strikes, I taught photography, raised two children who are now 40. If you want to know where your hep c came from, I bet you find out! You sound determined, that alone can get you a lot of what you want in life. Best wishes.
Thanks for the encouragement catfishjumping, I've been with my current gp for 27 years so why they've only given 7 years of records (which I paid for) is questionable in itself, not to mention frustrating
Thanks for the exercise tips, its certainly something I plan to do more of when this treatment is over. Thanks for your reply & long may you continue to astonish your doctors
Just ask them again, very politely how they can get your other records to you, you need them, its your right. Most likely they are stored and they are not wanting the foot work of getting them out of where they are stored. Keep asking. I try not to be a pest about thing but instead to enlist support. I hope they will put up with me for years to come. Aloha
In answer to you catfish jumping and also Tess, in connection with my previous reply to her. The NHs I was to,d are currently in the painstakingly slow no doubt, process of getting all their paper records, computerised.
Well done you as well,for the remarkable progress you made. I've alreadŷ had Hep C discounted but do have 2 autoimmune conditions which complicated things for me. Not through my own needle use or drugs, except the prescribed ones I'm thinking, too many of which didn't mix well with others. I refuse to take any now except my Levothyroxine and Vit D3 and am also working on detoxifying my liver through natural solutions, not meds. for me, AIDS, not hiv, is not a good thing to live with and my doctors make no link at all between the different things going on over the last 2years especially. I'm also not living in same country I was born in. I live in France, at least you fortunately have the advantage of same language where you are, so once again well done for getting there in your own way also.
Make an appointment with a solicitor, if they think that you have been contaminated by a blood transfusion, they will send for your medical records to check it out. That's if you want to go that far'
I will do if it comes to it..! hopefully it won't but so far no one seems to be helpful, unfortunately the records from my birth/post natal have been destroyed due to 'data protection'!
Please do post on here when you get an answer. I'm curious about some old issues that are listed as 'conditions' on my medical record 'summary', but where there is no detail, and I have no recollection of ever being tested for these conditions. Plus, I remember being given medication for 2 conditions that different GPs thought I might have - both well over 20 years ago - and me going back and saying, "This is 'nonsense' I don't have this, GP friends say you should not have given me this medication, and it's had a weird effect!!" The GPs, then, were not happy, but there is now no mention of these 'conditions' on the summary I had from my current practice [NB all this happened at my practice before last].
I'm curious, not for health reasons, now: but because of concern about medical records entering the public domain, when there are errors there. All this concern started when I became paranoid/phobic about travel insurance, after a bogus diagnosis made insurance very difficult. That is all hopefully sorted, now, and my practice did say I can book time to go through the records, but I have to have the practice manager with me, and I'm reluctant to take up her time - and I'm wondering how much it will all cost, as I don't think it's free.
Hi Gritty, yes I'll certainly post an update if/when I get somewhere, I intend to call my practice manager tomorrow and see what he can suggest or offer. The records I got so far (7 years worth of blood tests) cost me just under £50, they charged me 50p per copy and there's a fair few duplicates in there too ...cheeky lol. I think there's possibly the 'freedom of information' route that could help re costs, if I don't get anywhere with the practice manager I'll give citizens advice a try and see what they can suggest.
I have had other health issues too that I'm now wondering if are connected to or caused by the hep c...good luck with your research
Grittyreads, the Practise Manager is paid for her time, while she's at work!
Your correct health info and photocopies of it, to which you are entitled and may have to pay for, are far more important than your concerns about her time.
Believe you me I understand all about neural issues having had a brain hemorrhage 3 months after diagnosis of a blood disorder late 2012 then being told I've got cirrhosis in 2014. So It's only since my own health research from birth, including genetic possibilities, started last Autumn, that so much has only just come to light for me. I'm almost 69 now, not living in UK so have relied on a lot of Internet research using HonCode & Trusted websites, starting with Wikipedia to give me an initial insight into a specific condition and relevant info.
You make an appointment and go spend that time with your Practice Manager, it may help save your health or life!
I do realise that she is paid for her time. I mention that largely as a measure of how much I may be charged, as I assume the rates will bear some relation to how much of her time I take up, and I don't want to spend potentially large amounts of money (as well as taking up time when the PM could be doing something more useful) on indulging my /fussiness/paranoia.
Plus, I no longer have any qualms that I have the 'conditions'. I have not been worried about that for over 20 years; I would just like the info removed from my record if it's still there, especially if inaccurate records are about to enter the public domain.
I do object to records being made more widely available (will we have such easy access?) but then I object to people taking my photo ...
I've put it in writing that I don't allow/give my permission for mine or my childrens records to be shared with 3rd parties without my permission, I think you can still do that...nooooo chance am I allowing my private medical records to be read my anyone/business!!!...(& I hate my photo being taken too!)
I filled in something a few years ago, to say that I refused permission. However, I'm sure I've read (then, and again more recently) that it 'will' happen and we won't have any say or redress. Let's face it, soon 'they' will be fracking under our homes, bringing in TTIP, killing the bees ... don't get me started!
But nice to know I'm not alone - the photo thing really riles me. I also don't like 'fiction' that's actually written about real people - some of my writing group think I'm mad: I think they lack imagination!
it wouldn't surprise me one bit, we're all getting sh@t on from all direction but the only thing that gets most people hot under the collar is benefit porn or x factor....some folk thought 1984 was fiction.....!...ooo'er, I'm off haha
Tess who do you think would see yours or children's medical records that shouldn't and what do you think they would do with it? My husband is allergic to penicillin, it's on his medical records here. We carry a French health card here that shows we are covered and by how much for % of healthcare costs. With me the local hospital knows what laboratory and clinics conducts blood and other tests here and can access thatn info, as does my GP who can if not already in receipt of results can access them. Yo use of a special patient code and his own GP code.
Also the pharmacies have records of all meds I am or have been prescribed, because I have to nominate he pharmacy I want to use and they also register my card on their records. I really don't have a problem with any of that. When you think of all the necessarŷ medical people to whom that info might be necessary, do you think they are going to go home and gossip about you specifically?
What if you are all involved in a car accident and one of you is allergic to a specific drug or something used in treatment, you are unconscious for example and can't tell the doctor anything about your children that it may be essential for them to know!
I was under the impression it would only be NHS doctors,,medical departments treating any of you, plus pharmacies to make sure you aren't given a drug that you should not take, given what you may be on now for whatever reason.
When health can be life threatening, it's worth thinking again about your comments. Hope I'm not sounding too bossy, it's just I can see a logical reason for emergency reasons why such info may be needed.
as far as I'm aware any NHS department can access your medical records here too, thats why when you check into A&E you have to confirm your gp etc. A third party can be just about anyone, from market re-search, divorce solicitors, future employers... who knows, it's not stated who will be wanting access to your medical records and you won't know...call me an old fashioned control freak if you like but I prefer to have a say in who can access my medical information and for what purpose. People feel secure with seeing their gp knowing information they give them or checks they need are confidential, I wish that to remain that way, esp with now having hep c on my file with all the stigma that goes with it!!
Tess, no argument from me with that reply. It was only after I'd written mine it suddenly occurred to me you could have meant an employer or insurance company!
Of course if people don't declare on medical/holiday insurance forms,,it's well known now I think that they will use previously undeclared existing medical health issues to declare policies invalid.
There are even programmes now on TV about investigators checking up, on behalf of Benefits and or Insurance fraudsters when people say they are unable to work for this or that reason. At least that doesn't include access to medical records. I feel for all the genuine people now undergoing the stress of having to justify claims for PIP and other benefits.
No I don't think you are a control freak at all, given so much has now changed in the UK in the 8 years Ive been away.
It's only a hundred or so kms from me as the crow flies, I think. I must now be stuck in a "time warp" so Sorry for my misunderstanding,
I'm good at doing the "mouth/foot" thing, but not intentionally. I hope neither of our current conditions get worse either
Ah didn't realise you have to pay on the NHS now to see the Practice Manager, sorry my mistake. Yes I also understand your concern about wanting inaccuracies removed, as I would have if I found any while still at same practice. When I came to France with my health records in 2008, I was only allowed to pick up mine and OH's day beforewe left our home. I didn't have time to look at them till I got here and yes the fact I had had a foot operation to correct bone misalignment wasn't even mentioned - not the op or the reason for it. It was the 3rd op on same foot, for similar reasons and relevant to my health history now, when all facts somewhat belatedly put together.
Tess74, I wanted to say, do find out. And I hope you do not give up. It will give you an idea and make you slightly lighter. I'd love to have some answers as to how on earth I suddenly fell ill.
I'm so shocked they didn't ever chase you up with consistent elevated liver results. I really hope they're helping you now.
Katie, a thought! Ive just read through the info on the link you gave for nhsmedic .....etc
I found it quite disturbing right at the bottom of their info, where the website has a disclaimer saying that the information provided there, is not endorsed by the NHS! So who knows what the NHS or Gov rules and regs really are now!
Also I find it interesting that there is no clarification, as in my situation, on the rights of expats to be able to apply for details of their own medical records when we lived in UK as registered GP and NHS patients still within the time frames quoted on the website! Someone somewhere has made a booboo!
Thanks for posting the link again. Fortunately As I said earlier to someone, I didn't have problems with talking to the Scottish NHS last year in respect of my dad, but then he passed away too long ago for records still to have been available now.
which is far from helpful in my case & no doubt for thousand of others who want to query old test results...I'll see what I get told tomorrow, cheers Bolly
Bolly I think it changed to or From 10 years last year when the new NHS rules came into effect. I bet all the old paper records are stashed Away in huge warehouses or unused old Underground tunnels somewhere! There are probably regional areas of the country allocated for this storage! During the 2nd ww, there were underground bunkers in UK for the civilian war effort 'eyes and ears' workers. The NHS only started in the early 50's and those bunkers were probably still accessible then!
Thats my thinking too Sambs...somewhere everythings still stored/archived...however, whether or not people will be allowed access to their old records is another matter.
Before computerisation my GP used to keep everything on paper, then it got scanned once they all went onto PC's. Maybe the paper stuff got binned at that point, space saving?
I get bloods done all over the place, and they dont end up in one central store as far as i know. Different NHS health trusts are on different IT systems which are not always compatible.
Are you confident that ALL your records are with your GP, or have you at various times been to hospital A&E or other doctors/hospitals and had tests done elsewhere.
most of the records I got off my gp where post my diagnosis (2014) and a whole heap of them where from hospital, straight after i got diagnosed with hep c they noticed I had another blood condition were I had to get a pint taken off me every 2 weeks (I forget what it's called) but I had to have a whole load of tests in the hospital to check me levels every time I went in and to try and find out the cause & rule out jak2 mutation...most of the 'historic' test results i got back off my gp were from the hosptial
I think you're right there Bolly, and when the NHS system started changing from GP controlled practices to them coming under ifferent Health Trusts not so many years ago now, in terms of my lifespan.
GPs kept paper records only for the time a patient was with them, thats when years yrs later they went to NHS archives. It's the archives that I was told last year on the phone by a NHS official, who gave me a Scottish NHS email address, that they were slowly all being computerised in England. I had to jump through plenty of hoops with Scottish NHS and give a lot of info about my deceased dad in order to prove I am who I said I was! I did it and that's when I got no farther with his health records. If only I'd thought more and better about his underlying health then, rather than now.it was for genetic reasons I was doing the follow up. I'd like to have seen a copy of his autopsy report. I saw my step mothers, but she died in Scotland 20+ years before my dad.,I lived in England when both died.
30-40 yrs ago however, was when computers then the Internet came into being. I was in my late 20's early 30's then for the Internet. So many NHS and Health Authority changes also more recently. It's like when councils changed at elections over last couple of decades, they build new posh premises and redecorate everywhere, change administrative systems but don't tell the people who pay their salaries, the electorate!
It's no wonder people like .Tess, me and countless others who have a health beneficial need to find things outs when. Ore than one thing going on at a time. . Its not just about curiosity as some have implied here by saying "oh just accept it and get on with it, won't do you any good looking for answers"
Well I know my searches into my several conditions are linked and it's been worth spending the time doing it! GP's also know they are under pressure to give answers they don't yet have. Junior Drs are also under pressure to provide a 24/7 NHS, and probably more to learn and understand the relevance and effects of the conditions they are treating. The more we know about ourselves and our health, the better help them.
if we all,have paper copies of our blood test results, find out what the results means through our own research then the more we can also understand our own individual individual liver conditions, as you said there to me not so long ago, there are over a hundred reasons. When I 1st came on here you didn't seem to think I was on the right community. thrombocytopenia which is something I been told I have, as well as cirrhosis,is a major factor in my own health.
Like you I was told that I probably got infected with HepC at the age of 8/9. It is impossible to prove because that was 66years ago! I have stopped worrying about it and concentrating on getting the treatment. I have found reference to the fact that oestrogen and HRT after the menopause holds symptoms at bay, but even that is irrelevant. Stop worrying! What's the point?
Hi zsuasanna, I'm not worrying as such, I just want to know...I can't help but be interested as to how I got infected, how long I've been infected for and why weren't my blood levels ever looked into. I never had any hep c symptoms or reason to think I was at risk of hep c, the diagnosis came as a complete shock...that said, I knew 'something' was up hence the history of blood tests (I thought I might have a thyroid problem as I couldn't keep weight on and had problems sleeping, in hindsight that could of been down to hep c but who knows)...I think it's in my personality to get to the bottom of things and the more doors that seem to get shut the more determined I get...I'll see how far I get. Also I think there should be some 'noise' made over gp's ignoring warning signs in blood levels, I keep hearing other people say how they thought there was nothing to worry about only to find out years later they had hep c all along
also re oestrogen, I read somewhere that hep c can act slower in women then it does in men because of oestrogen & then the virus picks up it's pace after menopause ..perhaps hrt also keeps it at bay...it's a mysterious virus for sure :/
It's a perfectly natural human response, wanting to have answers. I hope you will find out what you need to know, just don't be too disappointed if you don't. I had blood test results like yours for 9 years. I am waiting for treatment, very impatiently!
Did you try looking for answers? & if you did, how far did you get?? I hope you get on treatment soon, I'm into my 6th week of the new abbvie treatment, I hate the fact people are being made to wait to get treated!! The whole thing stinks
I got nowhere. Seeing the consultant this week. If he refuses to treat me I will get it from India. Which region do you live in? I was told that so far nobody has been treated in the South East!
I'm north west, I've got it because they're saying I'm cirrhotic (2 fibroscans show 11.6kpa & 11.4kpa) ...I was originally promised harvoni the wonder drug but apparently the NHS has done a good deal with abbvie and people seem to be getting this instead...I have to say tho its doing it's job, I had a nasty reaction in the first few days so had an ultrasound & bloods done 12 days into treatment..US was fine...smooth liver with some mild coarse somethingorother bloods show PCR 0/hep undetected and on my 4 week bloods alt down to 14!!! Here's hoping everyone gets treated asap rather then having to wait for liver damage!
Yes, I keep being told I've got cirrhosis with this score...my US scan seemed ok-ish tho so I'm hopeful that they're just being cautious and I may just has some fibrosis and plenty of warning to do something about it. I think it's something to do with a change in what they are now calling the first stages cirrhosis and people who have a fibro score over 11.5kpa are being treated as such
You would or should have been told there and then if you had cirrhosis or not. Just because people are saying that score is cirrhosis this is not the case at all. If you have inflammation at the time of the scan, this can raise the score by 2 Kpa so I wouldn't down your tools just yet. I had a score of 12.4 Kpa based on alcohol and was told by 2 specialists that the scarring is "mild fibrotic" and also because I had pain at the time of the scan, that this could suggest an "over estimate" of the reading. I had an ultrasound and CT scan come back normal around about the same time. Don't give in just yet based on what people, who are unmedically trained, tell you.
Hi BRC...no it WAS the clinic nurses who have told me it's cirrhosis just going on the fibro which is why I'm now on treatment for 24 weeks rather then 12 weeks. I confess I had drank the night before (nerves....and a huge dose of denial) probably for both scans as I didn't realise I was having the second one as I had only gone in to see if the new treatments would be available as I was refusing the older treatment. I'm quite keen to have another fibro as I feel my score will be lower now due to 2+ months of zero alcohol & a much lower alt level and also I have noticed some folk on here mention that the score can be higher when the alt is raised, it'll be interesting to find out
Certainly will be interesting. Well I've been a lucky man then because I was told mine is reversible, I have a lot of bacterial issues as well that have contributed into the liver being overworked. The cirhottic scarring must have been evident on the scan then. Sorry to hear that and wish you all the best.
Hi Tess, I've been and am on same path as you re tracing records, because of several health problems, cirrhosis being one of them, I've also been tested for Hep C, that was discoh ted and thebLFT's ruled out cancer and alcoholic even though I admitted to going to through a 3/4 month bout of heavy drinking as marriage broke up. That was just over 3 yrs ago and cirrhosis diagnosed 2 yrs ago.
Because of the other health conditions, of which I had some (not liver) in common with my dad, I tried to trace his records in Scotland where he lived a lot and died. It was 18 yrs ago now and they didn't have them.
However when I left UK in 2008 my last local surgery said they kept records for 8 years then sent them back to NHS archives. So I suggest you try that route. Also look at the NHS website where there is now information on how to go about obtaining information about your own or a deceased close family member health records. Make sure you have details of your old relevant addresses and postcodes to hand though!
There are a variety of reasons, some of which health wise could be linked - you know the saying I expect "one thing leads to another". I would never discourage anyone with a complicated or bizarre health history from trying to get all relevant facts, because we can't and shouldn't look at things in isolation, which sadly is what doctors so often do.
I was also heartened to see last year that the NHS is or has at long last woken up to the fac t that health history from birth, or as soon as possible thereafter should be come a matter of "permanent record". What we know or learn now may well saves our our lives in the future in connection with a different condition. Especially when autoimmunity comes into the frame. Good luck with your search, I understand and empathise with you totally. S x
Hi Sambs...its hard going isn't it, seems at every turn you hit a brick wall!!! I spoke to my practice manager and he has promised to look through the archives for me and see if there's any 'relevant' information stored...he was rather pleasant about it & I also raised the issue about all the health care workers (ie midwives) who have been in contact with my blood and my concerns on that....I'll see what he comes back with, if I'm honest I'm not terribly hopeful
I'm now wondering if somewhere stored will there be a batch number for the blood I received....surely there must be...all the lack of important information is quite shocking.
I've just read up on a study done in Italy about infants being given (hcv contaminated) blood shortly after birth in about 1968, seems it was common practice for that era for babies to be given a mini transfusion (which is what I had)...I can't find anything to confirm this practice was as regular/common in the uk neonatal back then but anyway, what the study seems to of found is that infants infected at an early age (first week of life) the hep c had a slower progression, which is interesting & might explain why so far my cirrhosis is apparently mild...assuming I've read the article right, that is lol
Ah i see its eating you up not knowing.i think i can pin point when i got my first pbc problems but absolutely no way of proving it so sort of understand.
Will it gain you anything or would your energy b better used onn something that woll help your situ now.?best wishes cazer.
yes...because I know I haven't injected drugs in my past, I know there's no tattoos that I've forgotten about & I know that it's extremely rare to catch HCV via unprotected sex (my then current and ex both had tests once I was diagnosed, both negative, my children negative too) yet I am sick of being told or hearing that is my likely source of infection...plus I really just want to know and the more doors that are being slammed in my face the more determined I am getting, I'm happy to use up my energy in trying to find the truth..I just feel I can move on then, clear this virus and continue to focus on the health of my liver
Oh that makes more sense its a bit like ...are you a secret drinker!
In the past was it not possible to get infections from inadewquately cleaned dental impliments ,plasma etc etc as they didnt know enough about it all.also meducal workers who didnt know they were ill.unfortunately none of these would b in your records.
Tess 74, Grittyreads et al interested in their own medical health history. I know we've gone off topic a bit over the length of this post, but I would like to emphasis yet again to the other sceptics on here - it is important to 'be aware' of our Health History, it may even help prevent more or worse happening to our own health if we AND the doctors have full knowledge of past history.
This is one reason all medical records are being computerised and old paper records are gradually being destroyed, yes for confidentiality and individual Data Protection reasons So if we don't get hold of information now while we can and keep a copy for ourselves, including signing up to NHS/Gov online own medical record keeping, which can be saved to disc and updated by ourselves as and when necessary. (I'm one of the ones who can't as not in NHS health system currently), we never will be able to! I do know some of my childhood illness/diseases were responsible for the 2 autoimmune conditions I'm only now more recently aware of.
Most of us here, me included, seem to have had health issues as children that have stayed in our systems and genes/DNA with the potential to pass a defective gene on to our own children. Indeed a gene that may have been passed on to us through birth. So it not only about the future but our past. Also about the biologists and scientists so our Doctors can become better informed and trained as well.
A spokesperson on TV this morning said that now there are more people being treated with more than one condition than in previous years. Years before antibiotics were all the rage and we became 'immune' to them. Do we know exactly the right antibiotic was even given, of for long enough to totally kill off the infection, if not a tiny bit of infection could/possibly did lie dormant within us which over the years has affected other parts of the body systems without our knowledge or terribly ill effects except in some cases.
I think much of that problem also lies with the ever increasing number of drugs/meds being prescribed to each individual, not forgetting how we so often self medicate with many different OTC pills and potions at the same time as taking a prescribed one! It is now a known fact that many meds can counteract each other, especially if all taken incorrectly and not according to the manufacturers clearly listed instructions!
How many do take their meds as they see fit and not exactly according to instructions. Pop 2/3 different pills into our mouths at same time, when some should often have a 2 or more hourly gap between them.
To those who suggest it's only what is wrong with us in the here and now that counts, I say you are wrong, even if only for the sake of our future health and for the generations that follow us - savings on our taxes and the NHS.
Where do I get all these "weird ideas" you may well be thinking - as a recent hobby, purely through so seeing so many of the same symptoms/tests for different conditions I now have - I have been looking at many of the different medical, biological and scientific websites that are HonCode and Trusted ones from any English language speaking country as and when I could.
Many of the answers to the questions we ask ourselves are there, as well as here on these types of support forums.
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