It is sixty-four years ago today (on the 28th of April 1959) that at the age of 17 my peptic ulcer burst whilst I was working as an apprentice electrician on a new Co-op Superstore on the "Big Top" site in the middle of Birmingham. (An artist's impression of the eventual finished building)
I had surgery for the removal of two thirds of my stomach on 3rd May 1959 and it is from then that my Pernicious Anaemia journey began although it took two Schilling Tests and thirteen years before I finally got the P.A. diagnosis and had my first loading B12 injection in May 1972 - fifty one years ago.
They must be working as I'm still "clivealive" and it's proof that there is life after P.A.
I wish my readers and all on this forum well.
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Well that's quite an anniversary clivealive ! Whilst your journey wasn't an easy one, it led you to be such an amazing support for me and many others on here - so thank you! 😊
you’ve did great Clive I remember back in the fifties my dad had a duodenal ulcer removed ,he was never a well man the rest of his life it’s only now I understand why. Thankfully you got the proper care eventually and “Lang may your lum reek” lol well done Clive xx
My Dad had an ulcer removed decades ago and also was never a well man again. I don't know if he might have had PA as he was disabled and not very active at the best of times.
I was just wondering if you used to save the green shield stamps ? They used to be so handy to put towards paying for the kids school uniforms back in those days. Happy days Clive
You're right "Green Shield Stamps" they were introduced in the late 50s in the UK I think although as a teenager I seldom did much shopping nfor myself.
Working for the Co-op we used to get "free produce" for consumption "on the premises" if working at a bakery or dairy etc and of course there was mother's 247167 Co-op "Divi" number etched on my brain since babyhood for when I "ran errands",,
How wonderful - free cream cakes. I would have made short work of those. 😋 Your memory is amazing ! I have trouble remembering my door number let alone a divi number from all those years ago which I had completely forgotten about.
How lovely it would be to sit with you and your dear wife and reminisce over all those wonderful things that have now passed us by.
Keep well and please keep posting those wonderful memories.
I was started on cyanocobamalin every four weeks and when hydroxo was introduced I had an allergic reaction to it so have continued on cyano even though the NHS no longer "support" its use in injectable form. I managed to get my GP to reduce the frequency from four to every three weeks (despite it being against guidelines) a few year back and since covid my wife has been doing them for me. Somewhat surprisingly my surgery (at which I have been a patient for fifty-seven years) has not "called me back in" for the injections by the practice nurse,
Neither has mine, I now fully manage myself. I used to ask for the annual blood-test regarding other vitamins. These were then also refused, deemed,( so much for preventative medicine), not necessary. So I have those privately done. I also have problems with uptake of vitamin D from supplements , I ended up chronically deficient even though taking them regularly . I was given high dose ampoules to rectify and I purposely sit out with arms and legs when the sun shows itself from March onwards. 😂🌤️
Yes JBH - it was however a long wait of thirteen years because the connection and risk of developing P.A. after gastric surgery had not been established. Years later one of my Sunday School scholars studying biology showed me a text book showing just that.
I honestly think there was more "knowledge" about P.A. back in the 1970s that there is now. It's a vitamin - got from food (including Broccoli per Hancock) for goodness sake.
indeed Clive! Unfortunately medics students are not taught anything or so little about the importance of vitamins and certain nothinabout PA! What’s most concerning is that nothing seems to have changed. Big pharma ensure they remain ignorant…. Keep well. You have been an inspiration to me and many others.
we love you clivealive! Thanks for being such a role model and for your encouragement. Your encouragement in the past has resonated with me throughout my journey!
We should be baking a cake to celebrate this, although it ought to be one based on 'lightly cooked liver', and somehow I'm not sure that would be too popular; however, the B12 is keeping you going, and you're keeping us going! Well done.
Ha Ha FlipperTD Thank you - I was actually threatened with the option of having to eat raw liver three times a day - or have the injections for life. "Needle-less" (sic) to say I opted for the injections.
A wise man, and a very wise move. I can manage liver on occasion, but three times a day, I'm not too sure. Plus I'd prefer it cooked, with a plentiful supply of onions. [My mouth's watering now.] With a side-order of black pudding, to keep the iron stores going.
I wasn't sure whether I had to eat the raw liver before, after or during meals.
After having had the second (unheard of anyone having two - the previous one was four years before in 1968) Schilling tests my doctor asked whether I wanted the good news or the bad news.
I said give me the bad. She said "you're going to die - and that within two years"
I was thirty years of age, married with a sick twenty-five year old wife (with heart problems) and two children under six - so whatever was the "good news"??
It was then that Doctor Wool told me about the raw liver and the B12 injections.
By the time of this doctor's appointment I was like a walking Zombie but I vividly remember leaving the surgery "walking on air" that at last someone somewhere knew what was wrong with me.
Doctor Wool left General Practice when my eldest daughter was ten and went on and became the director of the Prison Psychiatric Service after which she was made a Dame. When my younger daughter married in 1998 Dr Wool "asked permission" to be "allowed" to play the organ for the service, In a letter thanking us she said she sometimes regretted leaving general practice - except for the "out of hours"
The sad news is that you stood a better chance of survival in those days than what you would have done now ! Can you imagine having to wait hours for an ambulance and stuck on a trolly in a corridoor for 11hrs or more. 😱 And they call it progression ! 🤔
I can guess why you had two Schilling tests. These were probably 'Part One' and then 'Part Two'. These were superceded by the DiCoPak test, which we called 'Schilling Test' for simplicity but I'm not sure when that came into use. Part One was simply 'Radioactive B12 swallowed, once the Transcobalamins were saturated, and then see what you pee out in the next 24 hours', and report it as a % of the total. It didn't diagnose PA. Part two, done some time after part one, involved the same process but with the addition of Intrinsic Factor. If Part two was higher than part one, then it indicated you didn't have any endogenous IF. [You, having had most of your stomach removed, probably didn't!]
If however you'd had the Part one done when you were B12 deficient, then that would give a false low result anyway, because your intestinal mucosa was megaloblastic too, and didn't absorb B12 as efficiently was when you were B12-replete.
When we had DiCoPak, it was all done in one, with one 24 hr urine collection because we used two different Cobalt isotopes with different emission spectra, so you could take the 'B12 unbound' and the B12 bound' capsules at the same time, and the IF-bound one would be absorbed in PA and the other wouldn't. Then the clever counter could count the two isotopes simultaneously, and report each isotope. That was then, whereas now, we don't have that. Various explanations and excuses have been given, but taking IF from the slaughterhouse and feeding it to humans at the same time was we had 'Mad Cow Disease' just might have had something to do with it.
Thank you so much for that detailed explanation however I think my Schilling tests must have preceded the tests you described as I only remember drinking the radioactive liquid and no capsules, plus they were back in 1968 and the second in 1972. The lab technician remembered me from the first time, told me "no-one has two tests" but I said to him "I DO" (standing six feet four over him) and I did. I can laugh now at the slurping canister strapped to the back of my motorbike.
I thought it was the difficulty of sourcing radioactive isotopes that caused the demise of Schilling tests.
You're right, of course. The early days of Schilling Tests were as you describe, and we were only using one isotope. Needless to say, that approach would still work.
No-one would ever admit exactly why they stopped making DiCoPak, as the Isotopes were one thing, and low doses, but the uncooked intrinsic factor processed from the slaughterhouse [sounds nice, doesn't it?] was the other. I suspect that it was a case of 'do we really need to make this stuff?' because they can't have been making that much, and the risk of being sued from giving someone Mad Cow disease would have put me off. As for the 'slurping canister', there are more stories we could share there.
Dear Clive,firstly Avery happy and healthy anniversary.Your letter brought memories flooding back.My late father was a coop shop manager in a small mining town and kept many a poor family alive with groceries during the war.Perhaps the first food banks.?
So grateful to you for speeding us all on.Take very good care of yourself. With warmest best wishes.Ann.
Sadly the Birmingham Co-op Society "collapsed" in 1986 but when I was apprenticed with them in the mid-late 1950s it was a massive organisation. During my time with them I had been "sent" to work in various sites including dairies, bakeries and in among the various types of shops. In the shops, especially grocers and butchers we were installing refrigerated counters as steps toward "self service" but I guess the "supermarkets" with their "one stop shopping" became more popular than the original Co-op line of shops. The Big Top site was my last job with them apart from some months when "I held the tools" for the refrigeration engineers whilst tried to find another form of employment
The surgery "forced" me to give up my apprenticeship on doctor's orders, however I ran away from Brum and finished my "time" with a small local firm, qualified and then remembered the doctor's advice to find a "sedentary job" and having been registered as disabled in 1970 was re-trained (by the Government) in book-keeping and accountancy and "got a job" as the book-keeper with Rexel Limited (office equipment - staplers etc) for whom I worked for the next 27 years taking the accounts from quill pen and high desks, through mechanisation to computeration. So much fun!!
Thinking back to that line of shops in the photograph they were not many yards away from the main railway line and sidings from London/Birmingham/Scotland (LMS) on the other side of which was the Parkinson Cowan factory both of which were targets of German Bombers during the war and I do wonder whether the left hand (missing) unit was hit.
I was brought up in Stechford and was sent to those shops as a kid but of course it never entered my head to query why the were only two Co-op shops in the row.
Hi MrsTuft - I stood six feet four and weighed 13 stones 4 ounces before the ulcer burst and initially nothing was being done until I had a massive bleed just as my Dad and sister walked in at visiting time on the Sunday afternoon - which worked out well as, at 17, it needed his signature for the operation to be done.
I recovered well from the surgery but back then the association between P.A. and gastric surgery was not generally known and my then GP really struggled to find out why I was so listless and energy less.
In 1968 she sent me for a Schilling test which proved "negative" for P.A. which was unfortunate except that for it I was given a massive dose of B12 which let me "struggle on" another fours years when she sent me for a second one in 1972, which came back positive - by which time I was a walking "Zombie".
There is no "cure" for P.A. Without intrinsic factor there is no chance of absorbing B12 via the stomach - however the "disease" can be managed by having the B12 injections and I have to say that generally I have lived as near a normal life as possible and I never dreamt I would live to the age of 81
I wish you well and hope that you get the treatment that you need
Lovely to hear your stories, clivealive , and how you have survived all this, I'm not quite sure. Just really glad you did and are here to tell the tales.
You are definitely a glass-half-full man. Happy anniversary - and cheers !
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