Fed Up: I am 60 years old and after... - Pernicious Anaemi...

Pernicious Anaemia Society

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Fed Up

caldbeck profile image
8 Replies

I am 60 years old and after having b12 injections for the last seven years every six weeks with no problems new doctor has decided he knows best and from now on it will now be twelve weeks so after nearly coming to blows with him today enough is enough I am going to stock up and self inject in future so I will no doubt be looking for advice, I have been reading through posts to learn more and can see I am not alone, however I know one doctor who has now lost his power over me as he can kiss my backside.

I feel better now

Steve

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caldbeck
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8 Replies
Gambit62 profile image
Gambit62Administrator

not good that GP has behaved in a way that has left you feeling so angry but good that you feel in a position to take charge of your health.

caldbeck profile image
caldbeck in reply toGambit62

Thanks Gambit I do feel like a weight has been lifted, I have so many other health problems anymore stress is a real downer, but onward and upward like you say I`m in charge now.

clivealive profile image
clivealiveForum Support in reply tocaldbeck

May I ask why you were having the B12 injections and do you know what your Folate level is?

caldbeck profile image
caldbeck in reply toclivealive

I have pernicious anemia, after many years taco-cardiac including days in hospital and a angiogram of feeling like every task was like climbing Everest 7 years ago I finally manged to get my then GP to do the test, she rang me at home 24 hours later to come in and start the load up injections, my test results had been so low as to be unrecordable !. My folate levels have dropped but I do not know the level I`m afraid and so the last year I have been on Folic Acid 5mg daily. Iron levels have remained very low despite 400mg dose daily, next month I am at the hospital to see about a iron transfusion.

My mother, brother, sister, son , daughter and even my wife all have pernicious anemia and all are on injections, my son and brother manage OK on twelve weeks but the rest of us vary from 9 to six weeks I just wish GPs would treat people as individuals and not one size fits all and also like adults and not children.

My daughter was diagnosed at 18 and the nurses kept telling her " your far to young to be having these injections you Know " they seem to have no Idea that these are life saving and not lifestyle choice, I recently when making a appointment for my injection did the receptionists know what it was for, quick as lightning they replied " Vitamin C " I am not sure GPs are much wiser.

Sleepybunny profile image
Sleepybunny

Hi caldbeck,

Are you in UK?

Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, memory problems, balance issues plus other possible neuro symptoms?

Symptoms lists

pernicious-anaemia-society....

b12deficiency.info/signs-an...

"new doctor has decided he knows best and from now on it will now be twelve weeks "

In UK, patients with B12 deficiency with neuro symptoms are supposed to have a loading jab every other day for as long as symptoms continue to get better then it's a loading jab every 2 months. So if you're in UK and have neuro symptoms, I'm surprised you are being offered jabs every 3 months when guidelines say every 2 months.

UK B12 treatment info can be found in

1) BSH Cobalamin and Folate Guidelines, quarter through guidelines

b-s-h.org.uk/guidelines/gui...

2) BNF British National Formulary Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

Point 1 in next link is about under treatment of B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

Do you have a diagnosis of PA (Pernicious Anaemia)?

If yes to PA then may be worth joining PAS. They can offer support and info about PA. in some cases they can intervene on behalf of PAS members.

PAS

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

There may be relevant stories on Martyn Hooper's blog about PA.

martynhooper.com/

Also an interesting blog on "B12 deficiency Info" website.

b12deficiency.info/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

I am not medically trained.

caldbeck profile image
caldbeck in reply toSleepybunny

I am in the UK but it is difficult to be specific as I have a acquired brain injury courtesy of viral encephalitis which has caused a great deal of neuro symptoms including epilepsy, memory, concentration, sight, hearing, touch and small motor movements, tremor, difficult to relate to people, extreme fatigue.

encephalitis.info/

KimberinUS profile image
KimberinUS

Please have a breathe test for h pylori. It effects the ability of stomach to absorb b12 and iron definitely and who knows what other nutrients due ti liw stomach acid. I had no stomach pain when i tested positive but i had been testing b12 deficient for 3 years before testing positive for it.

My white blood cells were always in range, between 7.7 to 9.7, during the 3 years prior to testing positive for h pylori. So wbc count can be "normal" even with this chronic infection.

Additionally it can be passed from person to person in a family through kissing or even use of the same silverware or drinking from same cups or glasses.

Im not saying you guys dont have pernecious anemia....it can definitely cause IFA. And you may need to be on injections for life even if positive for h pylori because the damage/IFA may already be done.

What i am trying to say is this....you might be able to fix your iron absorbtion issue if you have h pylori and get treated.

caldbeck profile image
caldbeck

Just done my first injection, easier than I thought I now wish I had done it years ago, I`m in charge now.

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