Those of us who have an on-going struggle with their gp over B12 issues must have a laugh to read in the papers that the government wants patients to take more control over their symptoms and medicines. Ha!
GP's (again): Those of us who have an... - Pernicious Anaemi...
GP's (again)
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jillc39
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If they want that they should make B12 injections available OTC.
Same here. I am well under the magic number and have neurological symptoms. GP said she knew nothing about any guidelines and pushed the ones we took to one side. Over the counter B12 would be fantastic.
Hi exhausted99.
GPs in this country do not care about patients (with the odd exception). All they care about is heir ever increasing salaries and their status. You need to battle all the time with them to get anything at all. I know, I've done so for decades for all matters of illnesses. Just keep at it non stop!!! Send requests by letters (I do this very often) as any letter you send them must be included in your records, and should you get more serious problems because they've ignored your request you then could use this against them, but always make sure you keep copies.
So keep at it, demand to see guidelines, search the internet, phone your hospital to find out where you can get the latest guidelines, try Pals at your hospital.
Good luck and please let me know if you get anywhere.
That's harsh. There are some great GP's out there. I just don't think they're as knowledgeable as us in many areas and restricted by bureaucracy and budgets. My GP is my salvation, always ready to listen and support and intervene when she can. She openly admits to knowing little about B12d and learns from me about AI conditions.
Well you'r extremely lucky Claire! Wish I live where you live. This has not been my experience. I understand they're restricted by financial guidelines and useless bureaucracy; however I've worked and paid my taxes, as I assume you have/do, and should get the help I need when I need it. As for not being knowledgeable... well we pay £120.000 for each GP's training! Of course they are only generalists but surely they could make the effort to understand better what they lack in knowledge so as to really help patients for suffer so much. It's their job after all. They could always chose to do something else if it's too much for them... but would certainly earn a lot less....
I won't try to change your opinion JGBH but would like to make the point that my practice has a diverse selection of GP's and initially I inherited the worst one imaginable. I changed, changed again and then changed again until I got my current lovely GP. The 'changing' process took 3 - 4 years but was well worth it.
The changing over and over is all very well as long you are healthy enough and fairly well to drive a distance. If you're very ill then you're stuck with useless and overpaid GPS. Lucky you, I envy you.
Your envy is misplaced. I have lupus, PA, lung disease, critically low blood counts and the list goes on . . . I changed GP because I need her support to stay as well as I possibly can.
I do sympathise with you, as I too have a few autoimmune diseases plus other serious problems. I had to do ALL my research and pinpoint GP in right directioneach and every time often feeling too ill but no choice! Decided to see specialists privately at my request having made my choices ... thank goodness with their guidanceI am starting to get somewhere after 3 years of hell. Any decent GP should have been able and WILLING to refer me to required specialists. I was so ill at times that I was not able to go to surgery never mind driving or catching buses to get to a surgery miles away from my home. I live alone so no one to take me there. So the envy was directed at your having a decent GP , not your health problems.. in fact you've reinforced the fact that the majority of GPS are a waste of money! Every one is entitled to have a good GP service.
Hope you're keeping as well as possible under the care of a decent and supportive GP.
golly - can we all come and live in your area.....
I requested a second opinion and they sent me to a rheumatologist who at first rejected the idea of low B12 being responsible. Anyway after x rays and loads of blood tests she is now considering it a possibility and I am about to have a nerve conduction test and MRI. I will continue to si because I am noticing tiny improvements. I will be composing a letter once I have been told the results of these tests. I don't really blame the GP's because they haven't had training to deal with this and at my surgery so many of them are retiring and the place is staffed with locums who just arrive for a few days. Seeing the same doctor twice is a massive problem. They also rely too much on the protocol written on the blood test result. On mine it was 5 loading injections over 2 weeks and retest in 6 months. No one took much notice of my neurological symptoms and 3 of them flatly refused to do any more. I have a file now full of all the information and tests etc I have requested my medical records which go back to 1958! I know since 2009 my B12 levels have been steadily dropping. I was also diagnosed by an army doctor in the 70's as having PA and was given B12 injections. They didn't mention I would need to continue these once I returned to UK. Unfortunately these particular army medical records are no longer available. I am keeping at it and increasing my knowledge, reading the books and searching the internet. A research doctor who contacted me recently says I now know more about it than most GP's. That's a bit sad I think.
Lets face it, a lot of us on this site ARE actually taking control of our health and medication. Out of NECESSITY !
The NHS is great if you have a clear, preferably acute, condition. Break a bone, they will mend. Bacterial infection, prescribe antibiotics, sorted.
Chronic conditions, mental health, even childbirth.... no.
Unless we are v lucky, we have to test ourselves, diagnose ourselves, and often treat ourselves. Thank heaven private blood tests are available now, but they are v expensive .. thank heaven we can talk to each other as patients now. For example, for three and a half years my Aspergers son has had extreme sleep issues due to RLS, tinnitus and extreme anxiety, so that a circadian rhythm disorder wiped out his ability to function. It took c three years to get to a consultant who prescribed a drug for the rls which so far had not worked, partly because appointments, and therefore rises in dose, were months apart, a fact I only spotted by going onto pubmed to see we had spent months below the effective dose indicated by research.
At the last appointment he said melatonin might help, I asked how much, 1mg or 5mg, we already have both, ordered over the internet rather than from the nhs.
the consultant is highly intelligent, a lovely man, and has forgotten more science than I will ever know but he said he didn't know and we must wait for another appointment at an uncertain date with a colleague. So we went home and unilaterally- and dangerously, some who have no experience of the nhs would say - tried the 5mg dose and it worked. Which we xould have been told to try three years ago by the go if they only rolled recommendations down to gp level.(ps .. it is not dangerous, but I only know that because the internet allowed me to research and have a conversation with a world-expert.)
And stuff like this happens all the time.
Aggggggh.
JGBH• in reply to
Hi Aspmama,
The NHS only deals with ordinary and well known problems. They have no idea nor willingness to try PREVENTION... they talk the talk but don't do the walk! It's the way they're being taught and nothing ever changes... This country has the highest premature mortality rate in Western Europe!
I despair....
This country has the highest premature mortality rate in Western Europe!
No it doesn't.
According to the CIA World Factbook for 2009 it's lower than...
Bulgaria
Serbia
Latvia
Estonia
Hungary
Monaco
Romania
Croatia
Lithuania
Germany
Moldova
Czech Republic
Italy
Portugal
Slovenia
Greece
Belgium
Denmark
Sweden
Finland
Poland
Well said fbirder . I follow some FB groups for chronic auto immune conditions where many many people from across the world cannot afford adequate insurance so literally are denied any treatment. We can't even imagine that. The NHS has many faults, as do all large organisations, but OMG we're lucky to have it.
Unfortunately your "facts " are out of date by 7 years!
Fine - show me up to date facts that show that the death rate in those 21 countries have dropped more than its dropped in the UK.
At least I do have facts.
Oooh look! 2016 numbers -
UK is No. 59 in the world list. Lower than...
Lithuania
Latvia
Serbia
Hungary
Estonia
Croatia
Germany
Slovenia
Greece
Portugal
Denmark
Italy
Poland
Isle of Man
Finland
Bosnia and Herzegovina
Slovakia
Belgium
Monaco
and
Austria
Wow! AHEAD of the old Eastern block countries... that's a relief. So why are you part of a Forum whose members complain, rightly, about the unhelpful and uncaring GPs?
I would assume you're extremely happy with such poor services and often lack of it? By the way I do not intend to get into a battle of wits ... Life's too short and have better things to do really, hope you have too.
I regularly read articles published by the Lancet and other medical reviews and indeed the Lancet did mention the UK's bad performance re: prevention, unnecessary premature deaths, easy and efficient access to GPs, GPs needing to work differently, etc.. you get the gist.
I would assume you're extremely happy with such poor services and often lack of it?
You can assume all you like. I just get fed up with people whinging about how terrible this country is. I especially hate it when they invent 'facts' to support their facile arguments. If I wanted that I'd read The Scum.
By the way I do not intend to get into a battle of wits
!
First, GPs have to get over their personal affront over the fact that we are able to access information nowadays which we would never have been able to before.
Quite! And to be willing to learn more rather than sit there in front of computer, pushing pils for usual run of mill problems... what an UTTER WASTE of NHS money, funded by us all.
On a recent trip trip to the UK - I decided to try out a request for B12 injection in a Pharmacy. Here in Crete I am able to buy B12 OTC for just a few euro without a prescription. I can also walk into any Pharmacy and have an injection in the back of the shop.
I politely explained my situation - that I had left my B12 injections in Greece and that I needed just one - please could I buy one. Oh my goodness it was as if I had committed some terrible crime. Oh no you have to have a prescription from a GP - yes of course - but I do not have a GP in the UK. Well you will have to have an emergency appointment and get one. I explained that my symptoms were quite unpleasant and stepping off a pavement had me in great difficulty with ataxia. I glanced to my right and noticed that I could buy Nurofen Extra and kill myself and no-one would take a second glance. The comment was not well received.
As advised I went and found the GP Practice - only to be told that I could not have an Emergency Appointment for 3 days. Couldn't someone just write a prescription for B12 I wailed. Surely I would be a much bigger liability to the NHS if I fell and broke my hip. I was met with the frostiness of an icicle. As I walked away I could not help muttering - now I know why I live in Crete ......
Life should not be that difficult ..... so as I demonstrated taking responsibilty for one's health is NOT an option with such a system.
Well, I have to say that my experiences with the NHS have been, with one exception, highly positive.
My B12 deficiency is being treated with fortnightly injections of B12 prescribed by my GP.
My NETs (not common - about 2 in 100,000 people). Have been examined by three gastroscopies, a CT scan, a gamma-ray scan and a PET/MRI scan. As well as my local gastrologist, I've been to see an expert at King's College Hospital.
My neurologist is still trying to figure out my neuropathy problems and has sent me to see one of the top guys in the country at University College Hospital.
Fbirder
I had an endoscopy about 6 months ago, everything ok except what they described as benign polyps, they said loads of people had these.
Are these NETS, ? should I be having these looked at periodically ?
No. I also had a benign polyp. It was the histology of the area around the polyp that gave strange results and finally led to the diagnosis of NETs. When they removed the polyp - to get a better look - the histology of that was normal.
I would ask for a gastroscopy every three to five years to take biopsy samples looking for NETs.
Fortnightly injections? Wow, how did you manage that one?
I was diagnosed with Pernicious Anaemia 38 years ago at the tender age of just 22. I was told it was extrememly rare for someone so young to get it. I;ve been reading this thread with interest since even now, I know so little about it, apart from the way it makes ME feel and the ongoing battle I have with my GP's about it.
I have no idea what these 'levels' are that some of you mention, or indeed what mine are. I do not recall having even one day in my whole adult life when I did not feel tiired, and by tired I mean completely exhausted. I have been known to fall asleep with my face on my dinner plate! However, it is important to note that I always KNOW when I am going to sleep, I never just nod off without warning.
On one of the many occasions I went to the GP to complain of this constant tiredness, I was labelled with sleep apnoea. Since I am disabled and I drive, I was concerned about this and of course denied that I had it. BUT, I did agree to go for the tests, which I passed with flying colours,, even then I was still labelled so I agreed to be tested again. This time I aced it, even less chance of apnoea than the first time. I thought that was it. But on a recent term as a hospital inoatient I was informed yet again that I had it. (They were reading my notes at the time). So it's still there and I live in constant fear that should I ever have a car accident it will be dragged out and I will be banned from driving. Which would mean that my little independence and mobility will also be gone. (That's if I survive the accident of course, and I'm lucky enough to not have killed anyone). I should add here that I am a careful and responsible driver. If I feel ill, I simply don't drive. If I feel too tired, I rest, no matter where I am, before I drive home.
I'm going off at a tangent here but my original point was that at first diagnosis I was on monthly injections. I asked if I could do them myself as because I was so young it would be constricting to have to be at the surgery every month for the rest of my life. It made sense for me to be independent. The district nurse trained me to do them and I attended the surgery once a year to get fresh supplies of needles and a blood test. Everything was fine until a few years ago when a) it was decided that all injections would now be quarterly. And b) I had to attend the surgery for them.
I have since changed my GP because I moved and I am still having this problem. I even wrote a letter of appeal but to no avail. I am also diabetic yet I am trusted to inject myself with insulin 3 times a day. So why can they not trust me to inject my B12?
Anyway I think it's great that your experiences have been so positive. But sadly mine have not. I was ill for 6 months before I got my PA diagnosis, after being admitted to hospital as an emergency. I visted my gp constantly because I knew something was wrong. He just didn't believe me. He never offered me a blood test or any other investigation. In fact he told my Mum at the time, 'It's all in her head!' Likewise when I got diabetes, I found out because I developed aggressive cataracts. I went almost completely blind within 3 months. Looking back, I can pinpoint the beginning of it to at least 5 or 6 years earlier. And yes I did see my doctor, many times. But again, I was never offered a blood test or urine test. I feel angry that my current state of health can effectively be blamed on all of this misdiagnosis and ignorance. I'm angry because in my opinion, doctors act like little gods who can do no wrong. I have much more respect for someone who will admit they don't know something and say 'I'll find out for you' rather than bluff their way through and then tell you it's your imagination.
On the one occasion I had the guts to question my doctor, he actually snapped at me, asking me why I considered I knew more than him! I replied ' Well because this is MY body, and I live in it, and I think I know it better than you do!'
Anyway I'm sorry for the rant. I'm new here and this is probably not the best way to introduce myself, lol. But I just snapped and had to get all that out 
B
Wow! I'm so sorry to hear of your trials and tribulations. It really is quite incredible how some medics get an idea stuck in their heads and can't remove it despite all available evidence pointing against it.
Fortnightly injections? Wow, how did you manage that one?
I had my loading doses and went to see the doctor about 6 months later to tell him that I couldn't wait three months for my next scheduled jab and that I'd got the nurse to show me how to do it myself, bought the B12 from Germany and the needles, etc., from Amazon (which astounded him). I gave him a copy of Martin Hooper's book, a copy of the BMJ review article and a copy of my symptoms graph - frankhollis.com/temp/Fatigu...
I think it was the fact that he was worried about me getting B12 from an unreliable source that prodded him into allowing more frequent injections. He'd rather I get it from the NHS and if that meant once a fortnight, then once a fortnight it would be.
Thank you so much for your kind reply. Again I'm so sorry for my rant but I really am at a crossroads now. Because of all the issues I've had I have piled weight on, my knees have both collapsed and now this blood clot and cancer diagnosis has just hit me for 6. I want to get better and I know I can but obviously I need help, I'm going to need surgery on my knees. I'm a prime candidate for a gastric bypass but I've been told I would have to wait 4 years to be accepted for that. I will be dead by then if I don't act now. I am trying to lose weight and cut down my insulin and doing the things I can do for now. But even if I can do that on my own I will need surgery for the skin as I have no elasticity.
7 years ago, despite the PA and diabetes, I was fit (ish) and healthy (ish), I worked full time and was happy and confident and active. Then my gall bladder burst and because they nipped my bowel when operating I got necritis in my stomach. I was kept unconscious for 8 weeks while they kept taking me back to theatre and cutting bits away. 14 operations later I was left with what looks like a permanent 9 month pregnant stomach which has no muscles and is full of hernias. The weight of it pulled me forward all the time so I stooped and then got constant back pain. I went through various hoops to try and get help but all I ended up with was a corset thing with so many straps and velcro I was unable to even get it on and fractured ribs from the physio.
I was recently in hospital with a blood clot and while in there I was told I had cancer. Haha,, I'm just so lucky. Actually I am because it was caught early and is small and treatable, or so I'm told. It wouldn;t surprise me if they get that wrong too. At 60, I have a chance now to start afresh, and I need all the ammunition I can get.
I don't really understand the chart you attached. I've never seen one before. Is it something I should have? In fact none of this made much sense to me *a copy of Martin Hooper's book, a copy of the BMJ review article and a copy of my symptoms graph*
I see the nurse once a year for my diabetic review and I am told I have a PA blood test at the same time. I never get to see the results nor am I even told what they are. This has always been the case even with my previous doctor so I thought it was the norm. Reading this forum is becoming a bit of a shock for me I can tell you, lol
i'm most grateful for any help or advice anyone can offer me, I know the 3 month injections are not right,, I suffer badly for at least 6 weeks before they are due. Cannot function, clumsy, dropping things, tripping up. Pain and anxiety. Just want to sleep all the time. It's not a life, it's an existence.
Oh I just found the book on Amazon so I will be purchasing that, thank you
So sorry to hear of all your problems, I hope you can get it all sorted.
The BMJ article is a fairly up-to-date article by a bunch of medics about B12 deficiency. If you look for my summary document (third pinned post) there's a link to it in there.
When I was trying to figure out which B12 treatment worked for me I kept a diary of my symptoms (scored 1 to 10) and treatment. After a while it became clear that fatigue was the one that varied the most.
So I made a graph that shows my fatigue score on each day (the red line) and my treatment (the tall vertical bars are injections the short ones patches).
It's just an easy (well, easy if you can work Excel) way to visualise a lot of numbers and not something I would expect most people to want to do (hey, I'm retired and didn't have the energy for much more than sitting in front of a computer).
Enjoy the book.
Haha,, Ok,, well I love computers and I'm pretty good with them but I never did pick excel up very well. But great idea to see a visual of how it affects you. I'm surprised I never thought oif it before myself. But like I said, I've really been kept in the dark about my B12 deficiency until I found this site.
Thanks again for your time and most of all patience with a newbie. It's starting to makes sense now, I'll go look for that post. Thank you again x
l have a b12 of 140, my lab levels in my county start at 110 so l got no treatment under the nhs, my treatment has been poor and people are literally suffering needlessly and being left with permanent damage, why is such a seemingly rich country seriously way behind some very poor countries by a long way, my son has add and aspergers diagnosed on observation and signs and symptoms not through any blood tests, is it money or sheer ignorance on this disorder and many others, l think most doctors are worth every penny but everyone has there top price and l think there already there in that regard.
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