Fifty years ago today I had my first loading dose of cyanocobamalin B12.
Although my P.A. journey started “officially” on 10th May 1972 events from 13 years before may well have been the true beginning.
Around Christmas time in 1958 I started to get “indigestion” pains in my left chest area and these got progressively worse until the Tuesday morning of 28th April 1959 when my (then unknown about) peptic ulcer perforated and I vomited blood at work. I was taken to the Birmingham General Hospital and sent home with a letter to my doctor. On the Thursday, because I was still losing blood I was rushed to the Dudley Road Hospital, placed in a medical ward and given transfusions and Horlicks tablets. At visiting time on Sunday 3rd May I filled a kidney bowl with blood in front of my father and sister. The surgeon (Mr Aldridge) was called and he operated that afternoon removing two thirds of my stomach.
I was 17 years old and the only advice I can remember being given by the surgeon was that I would have to give up my electrical apprenticeship and “find a sedentary job”. Being an otherwise relatively fit and healthy 17-year-old I ignored Mr Aldridge’s advice, completed my apprenticeship and qualified in 1962. It was around this time that I began feeling more tired, was getting ill more often with colds and bronchitis and so took an opportunity which presented itself of an indoor job with an electrical wholesaler as a storeman/buyer which did not entail the same amount of physical work.
At some time during the summer of 1968 I was sent for a “Schillings” test where I drank a glass of radioactive vitamin b12 and given a massive injection of b12 into my arm. My urine was collected over a period of time and measured for the amount of radioactive b12 passed but as the results were “inconclusive” I heard no more about it.
By 1972 I was starting to feel physically very tired and mentally exhausted. Some of it could be put down to learning a new job with a grim determination to succeed that, for me, was really quite remarkable, but the rest was attributed to the ongoing, general decline in my health.
I had still been a regular visitor to my Dr Wool’s surgery for more tests, none of which indicated the source of the problem and so she played a hunch and sent me for another “Schillings Test”. So, sometime during the Spring of 1972 I duly presented myself at Stoke Mandeville Hospital for another “radio active” drink and large “sample” container. The man who administered the test remembered me from four years before and told me quite categorically that “no-one has a Schillings Test done twice”. I said “I do” and I did!
The day in May 1972 that I went back to Dr Wool for the results is etched indelibly into my memory.
It was on the Wednesday afternoon of 10th May that I duly presented myself at the surgery and Dr Wool greeted me with the words “Do you want the good news – or the bad news?” I said that perhaps she ought to give me the “bad news” first. She replied “The bad news is, that you’re going to die – and you’re going to die within the next three years”. Naturally I was somewhat rather keen to know what the “good news” was. So I asked Dr Wool what the “good news” was.
She said, with a mischievous twinkle in her eyes, “The good news is you’re not going to die within three years if you have regular injections (of vitamin B12) from now, for the rest of your life."
To the relief of both of us (as I think Dr Wool was getting a bit frustrated with my long, ongoing “condition” too) the second Schillings Test had showed that I was suffering from Pernicious Anaemia and I was to have Cytamen (cyanocobalamin) injections every four weeks from then on.
Fast forward fifty years and I still have my cyano, now every three weeks given by my wife instead of my (still same) surgery who since Covid-19 seem to have resigned itself to allowing me to "self inject"
Now at the age of 81 I have far exceeded the three years of Dr Wool's "bad news" so I guess the B12 must be working
The photo is of "clivealive" a few weeks after the gastric surgery in 1959.
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clivealive
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Looks like it works! Well done, and congratulations on your anniversary.
My guess on the inconclusive Schillings Test was that you had not been treated with sufficient B12 in the run-up, and your gastro-intestinal mucosa was still B12-deficient, and therefore not working quite as well as it could do. I might well be wrong here, but my watch words are 'Often in error, never in doubt' but repeated Schillings Tests were rare indeed.
Missing the peak excretion of the radioactive B12 in the 24 hour urine collection is another potential cause, as is 'spilling' some of the urine somwhere along the line, but good ol' NHS eventually got it right. Delighted you're still battling away.👍
What an interesting read, glad to hear your still alive Clive. You were such a young man to have to go through such a lot but the 2nd schillings test was your saviour. I wonder why they stopped using it ? You were a great achiever to go through all that and still complete your apprentership - well done you.
Back in those days Drs doctored and tried to get to the root of the issue, thankfully for you they did or it might have been a very different story.
Bless you Clive for sharing, we oldies have a story or two to tell.
I had to have radioactive iodine many yeas ago given me at St Marys Hospital in London. I can still vision the rather large needle being brought up in a special metal box. Just think how much money we would have save on our electric bills if given us today. 💡😂
The very mention of your dear wifes name has took me back to my younger years listening to a song I used to sing along to - The Happy Wanderer and looking back they were happy days.
I was just reading your reply to the Happypensionersclub - after all those years it seems things with regard to PA havn't moved that far forward !
Sadly my Valerie died 30 years ago in 1992 aged 46 whilst undergoing open heart surgery from which she never regained consciousness. We met on her fifteenth birthday (I was 19) courted for four years and were married for 27
Such a young age to have lost a loved one to something that has progressed over the years, I hope the years you spent together were happy one's. Courting now days is sadly a thing of the past.
What a lovely positive story Clive and ok it took time but they finally got there and saved you a lifetimes pain and misery.You have had a very positive outcome which, when you relate it like this,gives so many people hope for their own futures and the strength needed to battle on against all these unjust things happening to us using this Covid as an excuse to neglect and dismiss us.
onwards and upwards Clive and your overdure for that pint lol take care x
It was the "living in ignorance" for nearly forty years that "got me most". It wasn't until I joined the Pernicious Anaemia Society in 2010 that I began to learn that "I was not alone" in my fight against the "One size fits all" syndrome
Yes while all that damage was being done to your body and mind,I don't know how you coped without the support of forums like this ,I was pretty much the same,always knew I’d had anemia even as a child I’d to go to school clinic to collect my iron pills ,I was just told all the pain in my little body was growing pains,I’d never heard pernicious anemia until I started researching and questioning more after a severe fall caused me a brain injury,I was told my dizzy spells were just “another virus”.I’m guessing most of us here only got where we are by private blood tests and lots of learning and research,absolutely shocks me when I read of some of the suffering that goes on here.I read a post a few weeks ago where someone asked about having surgery as a baby and could this be the cause of p.a.I can’t find the post unfortunately but I remember my older sister telling me I had bowel surgery as a new baby,sadly her or mums no longer here to get any more info on this but I’m thinking that’s the reasoning behind the p.a and all the other crap that gps just won’t acknowledge.
It’s a battle right enough Clive and I’m so pleased your enjoying life now,that’s very evident from your posts.take care x
That photo was me 63 years ago Narwhal10 but as "The Four Preps" sang in 1958 (the year before) "I was a big man yesterday - but boy you wanna see me now"
What a great story and insight to your b12 journey, you’ve had your injections as old as I am next month 50 years! Crazy to think. I’m on my 1st anniversary this month. Best wishes.
Thank you so much for sharing your story Clivealive & thank you for all the help & encouragement you have given here over the years. Happy Anniversary 🎉😊
I'm sure it will help many who are now just starting the PA 'journey' as my wife is now.
Our thanks to all the helpful and encouraging input from this site and it's members which has encouraged us to persevere and has now enabled her injections to start albeit weeks after they should have done.
Great to read your story. So glad they found out the issue in the end. Certainly good to read a successful experience about being deficient. I see it as a positive that I managed to find out what was wrong with me and that I can (mostly) do something about it. This isn’t the case with all illnesses. Plus my kids are forewarned if it happens to them and know to take control as needed. Keep enjoying life Clive! 👍😀😀
Thanks SallyRees - Yes - it's been a long and at time arduous journey. I remember asking at the surgery after the first 25 years whether I'd got a silver medal - never dreamed I'd be "going for gold"
Amazing and very positive story Clive, you have an astonishing memory. Nice to know there is a fellow Brummie here too, I was born at Dudley Road hospital 😃
How really strange !!I woke up this morning, and you were on my mind, reasons unknown.
My first waking thoughts were these:
"Have I ever thanked Clive properly on the forum and told him that, for so many of us, his was the first reply, the first supportive response to our questions ? And how important it is to hear immediately from a real person when we are afraid - someone kind, funny, caring, genuine ?"
When I used to tell my mum about someone's good deeds, she would always say "Yes, but have you told them that ?"
So I'm guessing that, this morning on waking, my mum was reminding me from afar to let you know how valued you are - and how lucky we all are to have you here !
Thank you Cherylclaire your kind comments have made me feel less of the "nightmare" I usually do these days
Have you managed to avoid the dreaded covid and are you still getting the treatment you need and deserve?
My surgery seems to have abandoned me to my own devices even to conducting my annual diabetes "check up" over the 'phone although goodness knows how they could asses my blood, take my pulse/BP or look into my eyes etc. Fortunately my wife Gill has been giving me my cyanocobamalin B12 every three weeks during the pandemic. I'm not sure whether I shall ever be required to attend the surgery in future for then as strictly speaking I guess Gill doing them is "illegal"
I got Covid fairly early on (1/1/2021) - not bad enough to get hospitalised, just scarey enough to keep myself very safe after and have all my vaccinations as soon as possible.
A bit of B12 catch-up after, as I wasn't well enough to self-inject at one point during.
As far as B12 deficiency goes, I am treating myself to all that I need as often as required, and surprisingly still finding areas of improvement, even now. The odd "blip" is now not devastating either.
Life has got much better - even osteoporosis reduced to osteopenia ! I think fear of London public transport during pandemic helped me there : walking far and wide the answer. Now more of a habit. Realised how much you miss when not going by foot.
Blood test results remain good - B12 of course off the charts. The two go hand in hand, and I can't get one without the other. Not willing to prove that by reduction of B12 though ! Prove -who to ? As you said, no-one there- to monitor, observe, pre-empt, discuss.
If I can't access my regular GP, I'm not really up to going through all this again with someone else. My appalling memory wouldn't let me anyway !
Anyway, last time I saw a different GP, he panicked about my B12 self-injection frequency and immediately got my NHS B12 injections stopped in a practice meeting - all before my regular GP got back from holiday.
I sneaked into the surgery recently, as I've been a bit dizzy, to get a machine to take my blood pressure: it was 157/72 (bit high) - I decided they would either blame B12 injection frequency or give me something I don't want to take -and so I threw the result away!
How mad is that ?
Maybe I'll go for best out of three.
If Gill keeping you Clivealive is illegal, have we all now become accessories ?
Couldn't see the you-tube video on here, so off to watch The Four Preps !
Aww! I'm sorry you "caught" the virus Cherylclaire although glad on the other hand that you have gained some benefit from your "enforced walks".
Gill and I have fortunately avoided it although it was a near thing with her daughter's family which all "came down with it" the week after Gill had been down in Wokingham with them. My elder daughter, a school headmistress in Rugby was infected a week ago (and has also come out with Shingles) having avoided it for two years and my other daughter who works for Tesco has also managed to stay free of it the whole time.
I've had all four vaccinations so I'm hoping that if it should come through the door I shall only be mildly affected.
I'm sorry about the Four Preps not working - perhaps this website doesn't like them
Four vaccinations a good idea. Although it seems to have mutated to a milder version (bad manners to kill your host is just sensible virus etiquette) still best to keep safe, Clive.
Congratulations on the 'landmark' anniversary clivealive! Many can identify with your journey, me included, with the various 'diagnoses' over the years - the 'Schilling' Test - oh, the embarrassment of carting two huge plastic containers to the Path Lab for the 24-hour pee collection, with the receptionist shouting out for all to hear, 'large urine collection here...' Thanks for that! May you have many more years yet, clivealive. Many on this forum value your expertise, humour and information. Have a glass of something suitable today! 👍
As long as it's not radioactive urine in the glass JanCymru
I had the containers strapped to the back of my motor bike - sloshing about - so many memories - especially the conversation with the technician in 1992 who refused to give the the second test four years after the first. I doubt I would still be "clivealive" fifty years later.
My Dad's family originated from Wales and he was born in Crosskeys.
Whatever your tipple clivealive you go ahead! I can just imagine you pootling along on your motorbike! I strapped my in the back of my Punto, with seatbelts just to be on the safe side! I must confess to not being Welsh, I'm a Kentish maid, who married a Welshman, so technically I am adopted Welsh and have been here about 30 years. My very best wishes to you (and thanks for your expertise).
Happy Anniversary and thank you for that lovely story. I've been having the B12 injections for 45 years. Mine was picked up by the Blood Transfusion Service. It was my first time back after having given birth to my son. They told me that I couldn't donate and that I needed to see my G.P. My G.P. referred me to a womans hospital where I was told that they had lost the blood test results and they would be in touch when they found them. Fortunately, my G.P. had asked me to see him after my hospital appointment so I trooped back there the next day. I sat in the chair opposite while he picked up the telephone and said to whoever was on the other end "she can't wait 3 weeks, she'll be dead by then". He told me to go back to the hospital the next morning. I had the Schilling test and started my B12 injections within a few days. One thing I've always remembered is the nurse who had seen me the previous day saying to me "how are we supposed to know you are ill if you wear make up".
Oh 041051 what a horror story with a fairytale ending. I'm glad your doctor was on the ball like my Dr Wool. Did you ever find the cause for your P.A.?
I was given to understand that it was as a result of having my son. Our local hospital was very keen on women not giving birth over night at that time so I was given Valium tablets to stop me giving birth until the morning and then he was a forceps delivery. I developed thyroid issues after having my daughter 4 years later and I was told that this often happens following childbirth.
Wow! Is it possible that you already had "thyroid issues" before they were diagnosed four years after your B12 deficiency was discovered? The two often go hand in hand,
Good morning clivealive. I forgot to ask if you did your own injections at the start of your journey. I used to do mine in the area just above my knee using a glass syringe and a needle that we had to dispose of ourselves. Long before the days of infection control as we know it now.
No 041051 - fifty years ago the nurse who did the injections took re-usable needles from the steam driven steriliser and always sanitised the injection site until the "throw away" needles came along. I've always had them in the upper arm and my wife Gill continues to do them there,
This reminds me of an experience I had. I had CLL (slow moving leukemia), the blood work was blatantly horrible. During the first visit with the oncologist, he stated, "Well. You look fine." I said is that all it takes is to look at someone's appearance to diagnose?
Then explained the difference between my 5 miles a day running + 10 hour work days and not being able to work more than 4 hours after 10 hours of sleep. All I want to do is work and pay my bills, can you help me?
What a very scary journey you started out on at such a young age, your family must have been extremely worried. I am glad you are still here & helping others too. I love your photograph!
I "ran away" from home a few months after the surgery and was in various lodgings until in September 1965 when I married my 19 year old wife Valerie but shortly after Christmas she began to complain of feeling tired and listless so I got an appointment for her to see a doctor on 14th January 1966 at what was to become our family’s practice in Aylesbury. After innumerable blood tests by Dr Wool Valerie was rushed into Stoke Mandeville Hospital suffering sub acute bacterial endocarditis possibly caused by her having had rheumatic fever on one or more occasions some years before. She was in hospital on that first occasion for five weeks in S.M.H. before being transferred to The Churchill Hospital in Oxford for weeks for further tests.
I shall ever be grateful to Dr Rosemary Wool for sorting out both Valerie's and my health issues throughout the late sixties and seventies
We used to call ourselves a couple of "old crocks" and Valerie died undergoing open heart surgery for a valve replacement at the age of 46 thirty years ago in 1992
Oh my gosh I'm so very sorry for your loss of your lovely wife Valerie at such a young age too. I'm not at all surprised you still miss her every single day. It's so very hard.
You had a wonderful Dr in Dr Wool - they dont make them like that any more! I too had a fantastic Dr back in 1979 when I was 19 he spotted something not quite right with me & he ordered some tests & I was diagnosed with cancer which if I hadnt been treated Iwould definitely not be here today. I'm sure today my symptoms would be just brushed off - in fact I dont think I would qualify for a Drs appointment if I even asked for one!
Thanks Irismay - I think you are right about doctor's appointments these days - my last diabetes assessment was done over the 'phone and without any bloods or pulse, or BP taken, eyes looked into etc I was told "you're fine"!!
Thank you for sharing your journey! It’s inspiring. There are times when I want to give up. Do you still feel brain fog? I’ve been injecting for 1.5 years now. I’m trying to figure out if the brain fog is b12 or something else.
Suffice to say B12life even after all this time I know when I'm due my next injection some months more noticeably than others. We are all different and there is no "one size fits all"
Thank you Kazania I just hope that by knowing a little about my history my reader may gain some comfort from the knowledge that there can be life after P.A.
Aww Beginner2 I am so sorry to hear that you have been "not OK" recently and can only pray that you will soon be back to both good health and spirits.
Gill and I have managed to avoid the dreaded lurgy so far but sadly both our family's and many friends have not.
Gill was down with her daughter the week before they all became infected and she had to self isolate but never tested positive.
My eldest daughter, a Primary school headmistress came down with covid together with shingles a week or so ago after a "school trip". She'd managed to avoid it for two years despite her exposure to hundreds of kids.
My younger daughter who works for Tesco has avoided the virus throughout the pandemic despite her exposure to "unmasked" customers.
Gill has been doing my three weekly injections now since March 2020 and my surgery shows no sign of wanting me to go back for their nurses to do them, so I guess we will just carry on "self injecting" despite it not being strictly "legal".
I became a "great granddad" twice last year but so far have only met one of kids "from a distance! Harlen is a boy and Talia a girl.
Please take care and look after yourself. God Bless.
Lovely to catch up with you and hear all your latest news.
I hope your daughter recovers from covid soon. I don't think teachers have been given enough credit for the work they did during covid. And as for dealing with parents who did not think their 'darlings' should wear masks! My 5 year old granddaughter [in the US] wore one every day with no fuss.
What we need now are 'puns' from you, and flowers and cartoons from me.
Wow, clivealive thank you so much for posting! Maybe you should make a memoir? I would want to read it.
I came on the forum tonight in bad need of some comfort or encouragement. You see, I started treatment about 4 months ago and I have hit a very rough patch here. Your story is so uplifting.
Strangely enough Cobalt1312 I have written my memoirs - all four volumes with over 360,000 words plus photo's, letters and documents.
When my wife Valerie died at the age of 46, thirty years ago in 1992, I said to our two (then twenty something) daughters "if you ever want to know what your Mum and I were like when we were young and growing up - ask me now". They didn't at that time as the experience and details of their Mum's death was still too "raw" - so in 1999 I began typing and it took me five years. If they ever want to read it after I'm gone they can as it's all in computer memory.
I found it hard at times trawling through memories but at the end of the day I think it was therapeutic and would recommend it to anyone who has a story to tell - Pernicious Anaemia is just one of mine.
You are still very early on with your treatment and it may take many months or even years to repair all the damage done to your nerve endings caused by the B12 deficiency and indeed it may seem that some things get worse before they get better - that is not unusual as it is probably the brain getting signals from re-awakened nerves it had forgotten about.
Are you supplementing with folic acid at all. Folate, B12 and iron work together to produce new red blood cells. Ask your GP if Folate and iron levels have been tested.
I wish you well and hope that you will start to feel a lot better soon.
("Clive Alive - with God in my Life" is the title of my memoirs)
Hello Clive. I just wanted to say thank you for sharing your diagnosis story. But also to say thank you for some info / details you had provided in your responses to other. Your summations have been highly useful to me. In the years after you had you good news / bad news Day, it's clear you have tried to help others. You are a good man. 🌻
A huge congratulations for the longest three years to live EVER!!! That is an incredible story Clive and I am so glad you are still Alive to share it! You are an inspiration! 🎉🎈🎉🎈🎉
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Pernicious Anaemia Test
Can I take a 2nd B12 test after I skewed the first with supplements?
mma test
My iron and Vit/Mineral results for interpretation please.
