Jasper
You may remember our beloved poster boy Jasper, passed away peacefully on the 23rd of May last year and that he did in fact become B12 deficient toward the end of his life.
Remember, for us humans, there is no for 4 injections a year, your GP may not be aware of this.
Jasper was given B12 injections by the vet without any fuss at all because he fully understood how B12 deficiency can effect animals.
His lovely image will continue to help us to raise awareness of B12 deficiency.
Paul
On the same day last year I attended the funeral for our case study, Paul. Paul, like Jasper, couldn’t remember where he lived. His wife Evelyn was distressed seeing the early stages of his failing memory and odd behaviour. Paul wore a beard but bought countless electric shavers and insisted these stayed plugged in and fully charged at all times despite never being used. Paul did not drink wine but insisted on buying case loads and emptying the fridge of all food in order that the wine they didn’t drink, could be kept cold. He started taking their poor old dog on mammoth walks, wandering far from home and being missing for hours.
There were many distressing situations surrounding Paul’s decline and, knowing that Paul had been on Metformin for his diabetes (a drug known to inhibit absorption of B12) for years and learning that B12 deficiency was the likely culprit for his confusion and related symptoms, Evelyn tried to alert the GP to the fact that Paul needed injections for his severe B12 deficiency. Unfortunately, the GP insisted Paul was being adequately treated with 50mcg oral cyanocobalamin tablets and he was given an Alzheimer’s diagnosis.
Paul’s decline continued as Evelyn was told in no uncertain terms not to bring any more information about B12 into the practice. Eventually Paul was found a place in a nursing home. Over time Paul became non verbal, aggressive and malnourished. Paul never had the chance for his nerves to recover, his doctor refused to look at the solid information offered and so did the nurses involved in his care. Evelyn was told repeatedly that the doctor ‘knows what he’s doing‘. She tried many times to access the treatment Paul needed but it was futile.
Evelyn and Paul in the 60’s
Evelyn
Earlier this year Evelyn passed away. She too had many B12 deficiency symptoms, she had been on thyroid medication for years and as you may be aware the two conditions often co-exist.
Evelyn eventually told me her thyroid medication had been stopped, she had been told that she no longer needed it. Bizarre?
By this point in her life, she hadn’t the strength or the inclination to challenge her GP, obviously it hadn’t worked out too well before. She didn’t want anyone else to either – until sadly it was far too late.
It is quite common for patients themselves not to want to challenge any health professional and to see family ‘help’ as interference. They might worry how any confrontation could lead to a negative impact on their care and don’t want to upset their doctor.
If you have elderly loved ones please try and advocate for them even if they say they ‘can’t be bothered‘ or ‘what’s the point?’ They will thank you for caring.
No one should be afraid of upsetting their GP if they are simply trying to access correct treatment by offering relevant information or indeed asking for information. There are advocacy agencies who can help, or find someone in your family who can be an effective spokesperson.
If any GP is making decisions which are odd, stopping essential medicine without any kind of explanation please talk to someone who can help, get a second opinion – you are important, your loved one is important and we all deserve good, compassionate care.
RIP Evelyn, Paul and Jasper xxx
Thanks you Tracey for the moving account of these people’s lives , what a shame they suffered needlessly , it breaks my heart . I know this ignorance will continue too , but , if we all do just a little bit to educate those that care for us , then one day things will improve . I continue to try and do my bit , sometimes it’s just not enough though , either it falls on see a ears , we are not believed or as you say , people do not like too or cannot challenge those that care .
I have experienced some heart breaking personal situations involving non treatment over the past year , but these only serve to make me more determined to make sure that it won’t happen again .
Thank you Tracey for your continued hard work .
Here in Australia the serum b12 low range has dropped to 135 pmol/L which is criminal as my hubby & I have permanent nerve damage & hearing loss as ours 290 ,191,was “in so called norm range 5 yrs ago.”We are both genetic mutatution Mthfr which causes a methylation disorder depleting folate . vit b12,b6 I am a midwife have been exposed to nitrous oxide for years which oxides vit b12 ..We are also Vitamin D deficient.I am determined to promote an awareness of vitamin B12 in my country & to the medical profession.Last night I attended a lecture given by a experienced physician & rheumatologist who was the first specialist of 17 Drs I saw to obtain a diagnosis.Post the university lecture I presented him a promotional b12 kit .He asked did your diagnosing Dr send a letter to me ? I need to know about this.I said no & would certainly get him to respond.So I am positive that at least he is receptive & hopefully read my research info.
Good work Marilyn! Do you mind my asking, what’s included in your promotional B12 kit?
My daughters cat was being investigated for digestive problems. She had been diagnosed as being B12 deficient, and it appeared there was a problem with her ileum. The trainee vet we spoke to said that if she didn’t take to B12 injections they would give her tablets. I pointed out that for humans, if there was an absorption problem, there was no point in oral medication as it wouldn’t be absorbed. She looked a bit surprised and then said. ‘Oh yes, I’d never thought of that’!. She now has regular B12 injections, and doesn’t like it, but who does, and is much more perky.
Thank you for your email. It certainly is disturbing. I am a retired RN in the U.S. w/o the clout of decent insurance, & having made the mistake of leaving NYC for upstate NY. I have had difficulty getting my old Armour Rx written tho. it was working well. I was dismissed from one Nurse Practioner’s office (they act as GP’s here) & after arguing with another clinic Doc. she refused to accept an appt for me… I finally found a Doc who deals with hormone balance, but have had to pay someone to drive me almost back to NYC to see him. I am 84 yrs, & the drive is too much for me. I take 5000 mcg oral dissolving B12/day. I have become increasingly fatigued, & after a good deal of inquiry & reading, I seem to have symptoms of magnesium deficiency, many. I will see to remedying this. I hope this is of some value to “youall” Sincerely P. Blau
Dear Patricia, Its a shocking situation. Can you source your injectable B12 from Canada where it can be bought very cheaply over the counter? Best wishes Tracey
My 88 year old Mum’s GP stopped her injections last year, he said “she doesn’t need them anymore”. Despite my pleas etc., he absolutely refused. I now take her once a month to a clinic nearby for an injection which she’s happy to have as she feels the benefit. It costs 15.00, absolute bargain
I self inject and would be happy to do it for my Mum but I’m not doing it without her doctor’s approval, which, judging by his attitude will never happen
So when your GP says it’s within the limit of the guidelines, where are you all getting your optimum levels from and why don’t the doctors know about them ?