Just heard that, after months of frustration, with letters and emails being ignored by her surgery, sis has finally been allowed monthly B12 injections !
Her progress since being on injections has been amazing - from severely incapacitating ME to being able to walk miles.
I would say to everyone out there in a similar situation, be quietly firm and persevere with providing your GP with up to date information, as the long term consequences of not being treated adequately are too dire to contemplate.
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Polaris
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Thank you Poppet. The great thing is that sis herself was asked at the last appointment when she would like her next injection and to just ring and arrange it, which she has just done! I did not know this - memory stlll a bit fuzzy! Or maybe it's me!! You would have had to have seen her six months ago to know what a miracle B12 has brought about.
We just want others to spread the message now and not just accept a dementia, ME, MS, etc. diagnosis without ruling B12 deficiency out.
It's really good to hear of someone having such improvements - especially when it was getting a bit hopeless at one time.
Your sister, fortunately for you, is a very different being to my sister! My sister has ME - when I tried to tell her about it possibly being b12 deficiency, she shouted me down and told the world I was a lunatic because b12 is 'only a vitamin.'
Charming woman.
The conclusion I eventually reached was that finding a treatment for her ME might result in the unthinkable - her getting better and having to find a job!!!!!
Your sister has a much more informed and healthy attitude - and is even sorting out her own appointments!
You're not alone Poppet. You did what you could - in the end, the initiative has to come from her. Most people think the doctor knows best and won't do the research that the doctors should be doing. I'm still persona non grata with some of the family, because I dared to suggest severe B12 def. can cause personality changes, anger, anxiety, psychiatric and neuro symptoms. They were convinced it was due to age and Alzheimer's, I think. The sad thing is that a lot of time was lost from the consequences of this.
I guess what I have learned is that I don't understand people - I thought I did but I don't.
I've also learned that they don't understand me - an even more disturbing situation.
Despite the fact I'd never been a 'frequent flyer' at the doctors and had worked most of my life right up to the age of 50 - there seemed to be total resistance to believing anything I said in spite of my having blood tests, consultant's letters etc, which proved otherwise. The preferential belief being that women, apparently, when they get to 50 turn into hysterical hypochondriacs.
Which really is a belief that belongs in the dark ages.
What I actually discovered is that modern medicine - isn't. Yet the majority of people are willing to commit their health and their future to this, despite the fact that in many situations ie ME, medicine has no answers.
So, when I see a situation such as with Polaris and her sister, I am so pleased that both were willing to trust themselves and challenge the current concepts and improve things for themselves - because very few do.
The true definition of intelligence? Asking the right questions. Yet when it comes to b12 deficiency the majority of people never get past 'believing' it's a blood condition and 'believing' it's treated when bloods return to normal - no matter what the patient says or their condition evidences.
Blind faith in medicine which is wholly misplaced.
That is fantastic news about your sister. I was just watching yesterday the video on Dr Chandy's site about the young girl with MS who's life changed. If you have not seen it the site is B12d.org. And on the menu on the left it is BBC documentary.
HI Bee. Yes thanks for posting Dr Chandy's website and the BBC video. This video helped to convince my sister. A wonderful man, with over 30 years experience in treating B12 def. after he first noticed the varied symptoms suffered by vegans and vegetarians in India. He obviously thinks creatively and kept meticulous records, which enabled him to build a successful case when eventually investigated by the medical authorities for giving too many B12 injections, even though he had given his patients back their lives.
Shockingly, he was banned this year from prescribing B12 injections to his patients just before the £55 bonus was announced for GPs diagnosing new dementia cases! According to 'Pulse', most GPs are going along with the bonus even though they are against it in principle.
Polaris, I just wanted to send you a hug! I too found that being female meant that I was necessarily a lesser being, although for me the discrimination started when I had a baby!
As for your sister that made me wonder. My ex husband clung to his being I'll with ME long after he had recovered, and now I know someone else who seems reasonably OK to me but is clinging to being I'll. In both cases the illness started as genuine when they went through a hugely stressful life experience, and they seemed to have retreated into illness rather than face another trauma. In my ex's case he recovered miraculously when I finally threw him out.
I have no idea if my ex was B12 deficient, it all happened 30 years ago when information was hard to come by. The other person will surely have been tested.
(Sorry for spurious apostrophes! The wonders of predictive text and I just can't seem to edit them out!)
Thank you Ruthi and everyone for your kind support.
Re. ME, B12 and tests. The problem seems to be that B12 blood tests have always been inadequate, unreliable and flawed and, as Poppet has already said, there is a misconception that B12 is a primarily a blood disease, whereas anaemia is the very last stage. Before this stage, the symptoms are many and varied and, if left untreated can eventually lead to injury to the peripheral nerves, brain and spinal cord.
Dr Chandy's website, Martyn Hooper's PA Society website and books, and various other books such as 'Could it be B12 - An Epidemic of Misdiagnosis', and 'The B12 Deficiency Survival Handbook', all give information and help with diagnosis,
ME is frequently being diagnosed instead of B12 deficiency. It is appalling.
Polaris, may i ask how she managed this? Convince the gp I mean?
I'm struggling to get anyone to do a b12 test, yet had a flipping addisons test after seeing an endocrinologist! He agreed to do b12 and folate on my request but I've not had it back yet. X
Looking through your posts, I feel for you with ill health, struggling to work and with a young child. It would certainly seem that, with PA/thyroid disease (they are linked in DNA both ways) in the family, your GP should be acting on your symptoms (most tests are seriously flawed and useless) and treating you according to the UKNEQAS guidelines and latest BMJ advice. (Links below).
It's difficult to know where to start with our story, as the struggle lasted nearly a year, so this is the short version! I read and researched extensively and, when my sister's crisis arose, was able to speak to her doctor face to face, but was still unable to convince her that B12 was the answer. I then wrote a tactful letter to the surgery, including medical history they might not have been made aware of, how I'd noticed a huge decline after dental injections, and an improvement after supplementing with B12. I also pointed out the physical and neuro symptoms that were associated with B12 def. and dire consequences of inadequate treatment (they'd already ruled out Altzeimer's).
After initially considering injections, the surgery then decided to prescribe only tablets - not even methylcobalamin! I then emailed the guidelines below and Dr Chandy's protocol, care of the practice manager and spoke to the GP again. Once more I got nowhere explaining B12, and it was only after I pointed out the social consequences on the whole family, that she relented and agreed to trial injections. Huge improvements followed and enabled my sister to ask for more frequent injections herself, which they eventually agreed!
At no time were my letters or emails acknowledged, even though GP admitted she knew very little about B12 and acknowledged that I must have done my research, nor would she read anything I put in front of her. My initial written request for more extensive and reliable tests through a haematologist were also ignored.
I would seriously suggest going down the self injecting route if you continue to get nowhere with your surgery or consider contacting Martyn Hooper at the PAS, who might be able to intervene and explain to your GP why correct diagnosis and treatment of PA is so vital. Very best wishes.
Thankyou for your extremely helpful reply! As Marre has just pointed out though my bloods showed high red blood cells above range and Heamocrit too, though when I've looked at polycythemia it does indicate there would be other issues too. I certainly have issues with my skin and itching after a bath or shower, generally all the time, tingly hands and feet, and at the same time have a lot of the PA symptoms.
I'm getting extreme rls in my spine and body most of the time.
I just rang the hospital to find out the b12 result; they wouldn't look it up for me. I'm seeing Dr tomorrow so will show PA stuff and the possibility of trialling b12 if my levels are low.
I will print out the nice links you've given me too - maybe a heamatologist before neurologist.
I can't really feel my hands and feet, they tingle, ablnd there's a constant itch in my chest. I keep muddling spellings when writing and just wrote keilber instead of kielder. I'm an Sen teacher and have never done that!
More info for your GP - taken from Martyn Hooper's "Living with Pernicious Anaemia".
"Pernicious Anaemia runs in families. Doctors have known this for decades and recent research has found that the brother or sister of a patient with PA is 40 times more likely to develop the disease. It stands to reason therefore that patients who have PA will run the risk of passing on the condition to their children".
An important point to remember about PA is that the neurological symptoms precede the anaemia and this is why it is vital to treat symptoms urgently, as they are often irreversible if ignored.
PS. Just had a thought, If GP won't read the link, it might be worth just pointing out the summary points in the BMJ Document, ie. 'PA is a common and serious disease', 'there is no ideal test to define deficiency and therefore the patient's clinical condition is of utmost importance." etc.
Sorry, this second BMJ link recommended by Poppet11 is the one I was referring to - the BMJ - Hunt article on B12 def. :
cmim.org/pdf2014/funcion.ph...
I'm not able or clever enough to comment on your blood test results - others here are more knowledgeable .
I haven't come across the symptom of being squeezed (symptoms are many and varied), but, certainly, tingling and numbness of hands and feet are very important neurological symptoms for GP to be made aware of.
I remember reading too that a baby will take all the B12 it needs from the mother in breast feeding but could that have left you being depleted I wonder ?
Thanks Polaris - it's possible re bf however I do eat red meat and have been taking bf supplements though noticed berocca had more.
It's also possible I guess I've been transiently deficient as my body was recovering from low thyroid / muscle wastage however the sensory issues worry me a bit. They got considerably worse when I began to put muscle back on.
I suspect the gp will want me to be clear from the sertraline and my thyroid levels good before he goes down further routes. It just worries me that I could get worse in the mean time.
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Neurological symptoms
Does B12 interact with any other Medications?
Well that was a result!!
B12 District nurses/HCA
