I wonder sometimes what is going on in Doctors surgeries up and down the country. When there are so many people who are either B12 deficient or suffering with PA, and either getting substandard care or none at all. I didn't even know that vitamin B12 was important for survival or being deficient in it might cause problems, up until a TV program where a doctor lived with a family for a week, and correctly diagnosed a man with B12 absorption problems, when his own GP hadn't in fifteen years of him going with various symptoms all of which are often listed by the great clivealive. The treatment given by the TV doctor and the recovery of the patient is what caused me buy complex b vitamins and then to return to my GP and only because I saw a locum, I was given, after asking for, a B12 blood test. This showed my B12 as low, but not low enough for treatment! Even though I had been supplementing for a month, and had stopped two weeks prior to the test.
I have read so many terrible stories of poor care on this forum it makes me despair over the intelligence of Doctors in the UK.
I have spent over thirty years with many of the symptoms of b12 deficiency, yet I have had tests for brucellosis, Lyme, celiac, mrsa, crohns, and other test I can't remember I have had cameras in both ends. All to no avail, yet since December I have been taking b12 sublingual, and got so much more brainpower back it is unbelievable, my legs work better, though still have numb areas, but I am now SI and done so 4 times now, doesn't hurt at all as my thigh muscle/skin is numb anyway. Yesterday I began having of pain, not unlike electric shocks emanating from my ankle, toe and thumb, which makes me yelp then the pain goes as quickly as it came. Thank you clivealive, as you have described this in your replies (if I read them correctly) bunch of wires etc. It just brings a smile to me in the hope all will get better over time. Thank you all.
Written by
jointpain
To view profiles and participate in discussions please or .
There was a person who said they were a sufferer but also a dr on here a while ago. Personally i think it would be unwise for them to admit to being one as they would be open to so many people trying to message them to get a better treatment than they already recieved.
jointpain, the programme you refer to was actually about someone who had a rare genetic condition that affected their ability to use B12 in their cells - they didn't have an absorption problem. The treatment they were given was high dose oral B12 because they needed high serum B12 for enough to be available in their cells. The diagnosis involved discovering that the person concerned had high homocysteine and MMA in the presence of very good B12 levels.
I stand corrected! Though at the time of watching it I wasn't in a very good place, what with the fatigue, brain fog, joint pain, etc. The fact that I watched it as did my wife, and we both thought that the problems the man was having were similar enough for me to investigate further into B12 as a remedy for my own problems. Which so far have been corroborated by the results, No thanks to my own Doctor, who never looked further than his next expensive holiday.
I totally understand the brainfog - there was a lot of discussion on the forum at the time of the broadcast and also a lot of confusion about the relationship to B12 absorption problems and I just wanted to correct that - B12 deficiency, whether it is caused by an absorption problem or by something else has exactly the same symptoms.
Hello Gambit. That sounds like a very interesting documentary. Do you or anyone else have a link to where I can see it?
I am particulalry interested because last month I was referred to an adult metabolics clinic as there is a suspicion of methymalonic acidemia and homocysteinuria. This means the metabolic docs may be looking for a conditon like "CblC" or one of its variants which prevent proper utilisation of B12. My B12 injections have been a help but I need to take various co-factors or I crash badly into a confused and sometimes stroke-like state.
I would be really interested to see the documetary.
Hello Gambit. Thank you kindly. With your info I tracked the programme down to Doctor In The House, season 2 episode 2 from 22 May 2017. As you suspected it is not available.
Do you recall any details on what symptoms the diagnosis was made in the programme and who the patient got referred to? I seem to have something very similar but my GP has been holding back from investigating as my symptoms are often very extreme. I wonder if this is at all common amongst PASOC members. Do you know?
HydroxoB12 injections have been very useful to me although they don't hold back all the symptoms. However it's early days as I have been injecting daily for only a month.
the details in the programme were extremely sketchy when it came to the involvement of B12. The premise of the programme is that a GP stays with someone and investigates their health problems. In this case the person concerned had been tired for years etc but doctors couldn't find anything. GP did blood tests which showed good B12 but high homocysteine (may have been MMA) with no sign of other problems that would lead to high homocysteine. He discussed with some unspecified specialists who followed up with genetic tests which showed up a genetic problem.
Despite James Murray's healthy lifestyle, he struggles with debilitating exhaustion and terrible sleep. For twenty years, his condition has been a mystery to doctors. Can Dr Rangan get to the root of his problem?
i believe what you describe is far too common. I've lived in 5 countries and they respond differently (the UK is maybe the worst of all, although in north america b12 level of 200 is considered borderline, compared to 150 for europe, thus they might act quicker in usa/canada?). I have had to push some Dr's to test my MMA rather than simply look at total plasma b12 when i'm taking high dose supplements. They are mostly clueless.
I haven't read this book, and maybe it is too technical for many, but those who want to confront their Dr with information might consider reading this: crcpress.com/Vitamin-B12-Ad...
Sufficient information for GP challenge by reading the PAS pinned posts (to the right of this page), the BSH diagnostic and treatment guidelines for cobalamin folate deficiencies, and BNF prescribing guidelines. All free!
Cphgn - this is an old post, won’t be seen by those in the forum and the original poster may no longer be active in the forum.
Always better to reply to recent posts rather than ins ones.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Confused newbie
With normal levels of b12 can you still be deficient 
Just diagnosed - shot or supplements? 
Getting my ducks in a row ahead of GP appointment - NICE Guidance etc
