Pernicious anaemia - is this a money saving exercise?

[B12tablets]

DM, DGran, me - all deficient . Mine has been picked jo through routine blood testing, said my B12 level was very low indeed . I’ve been tested five times, made dietary changes (eg daily eggs and fish) and told it’s persistently dropping . Think lowest it’s got to was about 75 .

DM has been having injections for twenty years, diagnosed when she was pregnant with me in 1990, gran for 10 years - I was told I’d be started on a catch up programme too .

Surgery rang this morning - said they’ve decided to give me tablets, mum tablets too . Said theh doubt it’s actually pernicious anaemia, and to change diet further - have been told to eat bovril, marmite, bran, oily fish, liver and ?seaweed/spirilina. Also said to drink milk a few times a day - I’m severely lactose intolerant .

I’m not vegan or vegetarian and try to eat yoghurt, cream etc in cooking - but can’t drink milk, it comes straight back up .

Totally confused as Mum has been told for years she lacks intrinsic factor and that I/sister will inherit it - as it goes four generations back (confirmed in three but long history of people dying of stomach cancer) .

So surely taking tablets will make zero difference at all? I’ve already got neurological symptoms (loss of balance and weakness in hands - struggling to hand write) and mum has peripheral neuropathy, memory problems etc .

Does it sound like a money saving exercise?

I've had the same. I've been on tablets for 5 years..refused injections..borderline pernicious anaemia.

Lots have said the same locally

I think it sounds like you need injections and they don't want to do them.

Not sure if it saves them money or not but, in my experience, I prefer the tablets. Both the injection and the tablets are cynocobalamin. I used to have the injection every three months but then, when lockdown started last year they suggested I move to the tablets so I didn’t have to keep coming in to the surgery. Frankly I feel much better for it. I think that I was getting feelings of extreme fatigue towards the end of each three month period, maybe because the dose was wearing down by that time. This would be for the last two weeks or so before the next jab. Now the daily dose of tablets is suiting me much better.

Look at the pernicious society website, they have lots of good advice including info sheets/letters you can send in to the doctors to argue your case. You absolutely need injections not tablets.

If you have pernicious anaemia and test positive for intrinsic factor I thought that meant you will always need injections as you cannot absorb vit b 12 through the stomach? Definitely a cost cutting excercise! Most countries also do injections with less time apart than UK

That’s what I thought too - that if we don’t have IF can’t get any B12 from stomach . Mum was told that years ago that she had autoimmune pernicious anaemia and it was likely hereditary . So frustrated . GP is ringing me later but assuming conversation will be similar to last one in which she insisted I must be vegetarian ...

Accompanying letter with tablets this morning gives a huge list of foods I need to eat - talks for ages about how to eat liver and kidney meat - suggests a spoon of pate each morning . That assumes people have the money to buy food like that, that Tesco etc almost definitely don’t sell .

I have ordered vitB12 patches as been feeling awful and pretty sure my levels are low.

GP rang; says I don’t have a problem (lack of?) with intrinsic factor so wouldn’t be advised to inject, said oral supplements should work but also wants me to take folic acid, and review in June or July . Mum she wasn’t so sure but said probably very similar . Still not wholly convinced - she did say even with oral tablets I’m going to be several weeks before I feel more normal .

I ordered my own injections online and did them myself. The less dramatic option is a mouth spray , would you be able to absorb that as it's not going to the stomach?

If you have pernicious anemia , that means you lack intrinsic factor which helps to absorb b12 in the gut. I'd be looking up the nice guidlines and emailing it to them.

Why are they so hesitant? Keep nagging. If you're so low in B12 its affecting your quality of life.

Pernicious anaemia is not picked up routinely. Its a separate blood test. And who are they to “doubt” you don’t have it? Since when are people diagnosed with a “doubt”?

I don’t have a problem with insitric factor neither but im on B12 jabs every 2 months.

You really need to speak to them snd look into the guidelines too.

Or find a private clinic to provide you

I pay for the injections as well. So worth it. Borderline as well