B12 - going privately?

cathy36

I have been B12 deficient for many years and have injections every 12 weeks at my doctors. I have been asking them for years if I can have them sooner than this as B12 is ruining my life. Once I have had my injection I am okish for 8 weeks but then back to being very lethargic, sleep 14 hours+, joint pain, memory loss, irritable and so on. My family and friends are getting very concerned as I get very down and depressed and HAVE to sleep. Does anyone go private with this condition please?
Thank you

KxMx

I get prescribed B12 tablets (cyanocobalamin) of which I take 2 every day.

This means my levels are always nice and high.

I've since found injections are much more commonly prescribed but they were never even suggested for me.

maddiemay

I have been diagnosed with Pernicious Anaemia for 18 years, this means that my body cannot produce any B12 due to an auto-immune condition, I was for many years OK with 12 weekly, but eventually found I was running out of steam at 6 weeks. I managed to get 8 week injections and when I moved up here my new practice just took this on board and continued at this frequency.

About 4 years ago I began to feel exhausted and unwell, diagnosed low iron and subsequently 2 other conditions. I belong to The Pernicious Anaemia Society (there is a charge) and am active on Health Unlocked Pernicious Anaemia Society thread and the same on Facebook (closed groups) A whole host of helpful people who have walked the walk, and incredible advice on dealing with the condition and "helping oneself".

I am not prepared to say more on how I do this on a public forum, but after spending some time reading on one/some of these places, you are welcome to PM me if you wish.

I have come across a few other B12 bods on MSE diaries too,

MM

ETA - If one has PA tablets cannot help as body cannot absorb B12 from diet or swallowed tablets, a B12 deficiency caused by diet (Vegan without B12 in food or supplements), can use tablets to get levels up sufficiently.

KxMx

I don't have PA nor am I vegan.

I have poor absorbtion and seem to need continious amounts to get me to a normal level.

GP has experimented with me, if I cut the dose to one tablet per day the level starts dropping, when I stop all together I become deficienct again quite quickly.

Cause unknown along with numerous other health problems

maddiemay

KxMx wrote: »

I don't have PA nor am I vegan.

I have poor absorbtion and seem to need continious amounts to get me to a normal level.

GP has experimented with me, if I cut the dose to one tablet per day the level starts dropping, when I stop all together I become deficienct again quite quickly.

Cause unknown along with numerous other health problems

Sadly cause unknown seems to be the case with so many health problems, I hope that what you do continues to work for you.
Take care.
MM

TensandUnits

You could try ringing companies like BUPA, but they may say that your GP would need to refer you to them.

I would put your request in writing to your GP surgery, saying that you're even thinking of going private because your concerns have thus far been ignored and your health is suffering as a consequence. If it's a need (as opposed to a want) the NHS should - in theory at least - be able to accomodate you.

SuiDreams

I have B12 Injects every 8 weeks and can really feel when I need next one. Have days when I'm completely exhausted and can't do anything. Also have had issues with Iron (ferritin Levels), have just been told to stop taking the tablets (have had 3 months of 3 tablets a day and 2 of 1 a day), they plan to retest in 3 months to see what happens.


Iron they believe is poor absorption due to Coeliac disease, B12 not sure if its the same reason or pernicious anaemia.


I am tired a lot and have loads of aches and pains, oddly sometimes I find having loads of things planned where I have to force myself to get up and do things is better for me, otherwise I end up welded to the settee not doing anything and often falling asleep and losing the day. I hate being inactive so try and avoid option 2.


If anyone has tips on dealing with the lack of energy really would like to hear them.

equus

You can buy your own b12 and inject yourself.

I have pernicious anemia without the intrinsic factor so have to have injections, hence I self inject, my GP is aware.

teddysmum

KxMx wrote: »

I get prescribed B12 tablets (cyanocobalamin) of which I take 2 every day.

This means my levels are always nice and high.

I've since found injections are much more commonly prescribed but they were never even suggested for me.

I have injections (every 12 weeks at the moment),but on commenting that I was glad there would be no more additions to my daily tablet count, I was told that the tablet form is not easily absorbed.


Last time the nurse told me that for neurological conditions, every 8 weeks is now recommended, so I am to ask my neurologist, when I see him next week, whether he wants my dose to be 8 weekly. I'm also to have a test the day before my next jab is due so they can gauge my lowest level.

fred246

I am sure private B12 will be much more effective. Like private healthcare and private education it's just so much better.

Cyclizine

My 2p worth... it's not the B12 deficiency that's giving you symptoms.