Liver therapy and PA

[doityourself]

Hi, I was diagnosed with PA 3 years ago and receive 8 weekly injections from my GP. My B12 level was 74 at diagnosis. Over 50 years ago ,as a small child, on the advise of a London hospital consultant my mother fed me regularly on almost raw liver. I never was told why. Sadly my mother is no longer alive so cannot ask her.

Is there any possible link between this diet and my current PA do you think? I have read old acticles about treatments. Could I have had PA all my life!?

[clivealive Forum Support]

Hi doityourself

I was threatened with a diet of raw liver three times a day by my doctor when she gave me my P.A. Diagnosis 45 years ago. It was either that or B12 injections - I chose the injections and I'm still "clivealive" at 75.

Seriously though B12 can only be naturally obtained by eating red meats, fish, poultry and dairy products - unless you don't wash your vegetables too thoroughly, as it can be found in the soil.

You also need Folate to process the B12 and this is found in leafy green vegetables, sprouts, broccoli, asparagus etc and nowadays Folic acid is being added to a range of breakfast cereals etc.

Do you know what your Folate level was when you started your B12 injections?

[doityourself in reply to clivealive]

Hi, thanks. Myfolate levels were low too. So that was also treated until it reached acceptable level.

After the age of about 15 I no longer had the liver. I'm now 60. I wonder if PA can go untreated for that long though .

[fbirder in reply to doityourself]

Were you diagnosed with PA or a B12 deficiency? PA is a permanent condition, so I'm sure you would have noticed a problem.

So it could have been that your early deficiency was due to a temporary cause (possibly poor diet - I know many of us 50 years ago didn't eat anywhere near as well as today's kids).

Although PA can strike at any age, it is more common as one gets older. So it's possible that the two are only loosely connected, if at all.

[doityourself in reply to fbirder]

Thanks, yes I have a PA diagnosis. I was thinking along similar lines.

[clivealive Forum Support in reply to doityourself]

I was told we have between 9 and 12 years "store" of B12 which normally is replenished naturally though diet unless of course you have an absorption problem. You certainly had a "good start" to adulthood with your raw liver until you were fifteen.

I was 13 years between gastric surgery at the age of 17 until diagnosed with P.A. in 1972 after two Schilling tests, (the first in 1968) by which time my "reserves" of B12 were virtually totally depleted and I was walking around like a Zombie.

On page 56 of “Could it be B12? An Epidemic of Misdiagnoses ” (Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O.) a case is recorded part of which reads “… He (the doctor) wasn’t surprised: The woman’s history included a gastrectomy twelve years earlier that inevitably results in severe B12 deficiency if patients don’t receive compensatory B12 injections”.

This matches and bears out my own history. Should I have not been warned of this back in 1959 after my gastric surgery and given B12 injections instead of just being advised to “get a sedentary job”?

I was an apprenticed electrician at the time.

So, as to whether P.A. can go untreated for 45 years? Although I'm not medically qualified I have to say I doubt it.

Here is a short extract from "My P.A.Story"

I had still been a regular visitor to Dr Wool’s surgery (now located in Oakfield Road) for more tests, none of which indicated the source of the problem and so she played a hunch and sent me for another “Schilling 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 eat raw liver three times a day or 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."

Ironically part of the "Schilling" test was a huge injection of B12 and it was probably this that "carried me through" the next four years during which time I survived an 8 weeks training assessment, a five month long intensive Book-keeping, Accounts, Commerce, English, Maths and Typing course at a college in London organised by the then Ministry of labour, was Registered Disabled, left college on a Friday and started as the book-keeper for Rexel Limited (a large stationery and office products Company) the following Monday.

I worked for them for 27 years taking their accounts systems from quill pens and high desks, handwritten ledgers, through mechanisation to computerisation. Amazing what a shot of RedX (as I call B12) can do.

I had been working for Rexel for two years when I was diagnosed with P.A. and the firm was very good in allowing me time off to have my injections "every fourth Tuesday at 10.30 am" at my surgery.

I wish you well.