Pernicious anaemia

[Shellbes]

Hi all I have pernicious anaemia and always tried love to exercise but found it hard I have no friends with this and to be fair not one of them understand how it makes you feel . I’m a happy smiley person but in the background I’m crying for help I just wanna feel normal. Please if anyone has any suggestions I’m all ears my ferrtin leaves are only 7 but I’m not sure what this means I’m on iron tables taking 3 a day for the last 4yrs .

[clivealive Forum Support]

Hi Shellbes I know exactly how you feel as I've had P.A. for over 46 years and have had to learn that my energy levels are nowhere near as high as they were when I was a teenager.

I had gastric surgery at the age of 17 in 1959 and it was another 13 years before I go diagnosed (at last) with P.A. My surgeon had warned me that I would have to give up my electrical apprenticeship and "get a sedentary job" - whatever that meant.

Of course I ignored the surgeon's advice, qualified and only in my early 20s did I realise that I was finding the work more difficult energy wise and so decided to find a less strenuous job as a buyer for an electrical wholesaler. I married at the age of 24 but within months my wife was rushed to hospital for more than six weeks with heart problems brought on by rheumatic fever. Because of her "condition" we were restricted to having no more than two children and we were blessed with two daughter in 1967 and 1969.

However the stress, worry and my declining health due to the then unknown P.A. I lost my job through "sickness" which led me to a deep depression for which I was given a cocktail of powerful drugs, Valium, Tofranil and Librium.

In 1968 I was assessed to be "incapable" of physical work and sent on a five month accountancy course for "disabled people" in September 1969 and got a job the following February. There were 90+ people on the course all of which manifested a disability, loss of limb, sight etc and I was for ever being asked "What's wrong with you" as I stood six feet four inches tall, slim build and all my "bits intact". I'd just got "no guts"

How I got through the course and successfully started a new career I'll never know but by 1971 my health was heading south again and I was beginning to be like a walking "Zombie".

I'd been tested for P.A. via a "Schilling test" back in 1968 which had come back inconclusive, but in 1972 my doctor did the unthinkable - she sent me for a second, unheard of Schilling test which proved positive and treatment began.

For the next nearly forty years I lived in ignorance of what P.A. was all about as I knew no-one else who had it and none of the nurses who gave the injections or the succession of doctors I saw for different reasons ever asked me how I was getting on.

In 2010 I joined the P.A. Society and asked on their then forum if anyone else had a return of symptoms in the run up to the next injection - and I was amazed at the replies - NO I was not alone.

The rest is history and NO - you are not alone either.

I am not a medically trained person but I'm still "clivealive" aged 77.

I wish you well

[Shellbes in reply to clivealive]

have b12 jabs every 12 weeks ... I’ve loads of on going health problems the low iron low ferritin and I’ve sudden death syndrome in which I have a defibrillator in my chest for so life is pretty hard what doesn’t help is my own family couldn’t care less wasn’t wanted from the first day I was born I was left at the hospital... so from then on I’ve had to work things out for myself I’ve asked about family history but given no answers done my best to find myself but got told via my gp to stop because of the stress it was causing me .... I’m on so many meds it’s hard to keep up and the morphine doesn’t help with this kind of makes you thick in the way of thinking thank you for the reply.

[wedgewood]

You don’t mention your vitamin B12 injections , only iron tablets . You need sufficient injections to keep the symptoms of Pernicious Anaemia at bay . We are all different and require different amounts of injections. Doctators , (no, not a spelling mistake) , will not recognise this , so many of us have to self-inject B12 to keep well . Along side B12 you need good amounts of folate ( green vegs) or folic acid (B9) Are you getting sufficient of those vitamins ? If you have been deficient for a long time it will take longer to recover . You have come to the right place for advice , but you haven’t given much idea as to your treatment thus far. You have friends here remember . Best wishes .

[Shellbes in reply to wedgewood]

I have b12 jabs every 12 weeks ... I’ve loads of on going health problems the low iron low ferritin and I’ve sudden death syndrome in which I have a defibrillator in my chest for so life is pretty hard what doesn’t help is my own family couldn’t care less wasn’t wanted from the first day I was born I was left at the hospital... so from then on I’ve had to work things out for myself I’ve asked about family history but given no answers done my best to find myself but got told via my gp to stop because of the stress it was causing me .... I’m on so many meds it’s hard to keep up and the morphine doesn’t help with this kind of makes you thick in the way of thinking thank you for the reply.

[wedgewood in reply to Shellbes]

I’m really sorry that you are having a bad time of it . If you think that you could benefit from extra B12 injections, do consider self-injection . I could not manage on 3xmonthly , and my doctor would not allow me to have more , so self-injection was my route to better health . If you are in the UK , B12 (hydroxocobalamin)

Ampoules are obtainable from some German online pharmacies. Needles and syringes obtainable in UK. If bought in bulk , a jab need not cost much above £1.00 I’m sure you know that you need to supplement with folic acid which works along with B12 . If you are underdosed with B12( and we all need different doses , not the one size fits all of the NHS ) it can leave you feeling really depressed and anxiety-ridden , amongst a myriad of other symptoms .

I have 2 squirts of ‘Better You’ daily iron oral spray to keep iron in good order .

You must work towards getting better health .There is lots of help on this forum for anything PA related . Very best wishes .

[Shellbes in reply to wedgewood]

Thank you again for your help I will definitely look into the self injecting can only help stress is my mean problem too I think I’ve a very unhealthy relationship if honestly he has no understanding of how I feel the tried ness he makes me feel pretty worthless I look after his young children (not mine ) love them like they are and I do everything for him but nothing is good enough I feel unworthy of anything I’m called some really awful and hurtful names to which I can’t understand why i deserve this I really feel a nobody so so so low ... he know I’m meant to have no stress because of my heart however seems to give me loads is this caring only nice when he wants something he takes every penny from me sorry if I’m going on just no just no one to talk to yes I’m in the uk