As I was pointed to many moons ago last August when I 'crashed' badly after receiving loading doses in July but then couldn't stand up and had SACD symptoms, the NICE guidelines state:
"Treatment for B12 deficiency
For people with neurological involvement
Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."
I asked for a referral to a haematologist at the time and continued to chase until January when I decided to write a letter voicing my concern that nothing was happening. I received a call from the doctor the next day apologising profusely because she "must've pressed cancel instead of send" and the letter was never sent. She wrote another one in front of me.
The referral came back on 21st March as refused, stating:
"Many thanks for your referral dated 9th January 2018. We will not be offering the patient an appointment as a low B12 is not a haematological disease".
This, to me, is in contradiction to their official guidelines - I'd like to know other's opinions on this if you care to share!
The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
Thanks clivealive - it was more the flat refusal to see me and their remark of "low B12 is not a haematological disease" when the guidelines clearly state "Seek urgent specialist advice from a haematologist".
low B12 isn't a haematological disease. The anaemia it can cause is but isn't always present.
The process for diagnosing B12 deficiency is heavily dependent upon haematology processes but that doesn't mean that they are then the best people to comment on how to treat. If you have neurological problems a referral to a neurologist would seem more appropriate - though no guarantee that the consultant will have much knowledge of B12 deficieincy.
Hah that's true enough, saw a neurologist a week ago & even though I said three times about my pins & needles in feet and fingers, my blurred vision and drooling he just arm wrestled me, hit me with his plastic toy a few times & said he couldn't find anything wrong. Also had to clarify his instructions multiple times as brain still can't handle fast interaction and responses yet.
Whole system seems to be pretty broken - glad I found this place otherwise not sure what state I'd be in by now!
How right you are , pretty broken is right . I saw an haematologist and he just declared that he wasn’t interested in B12 , Pernicious Anaemia etc, as it was so simple to treat . He was worse than hopeless , and just left me devastated . My B12 serum level was 150 , my feet and ankles were numb, I was giddy , confused and totally exhausted. Oh how pleased my GP was to hear his report that I didn’t need more than 3 monthly injections . So don’t set great store by seeing any haematologists. Self-injections saved me!
Yes , it’s just great to have this forum and the generous people on it . But I hope that the day will come when it is no longer needed , and patients are able to get the treatment they need .
I don't think that day will come unless something radical is done! There seems to be a few factors involved, the fact things like B12 & Thyroid issues are out of patent, the illnesses you get if you don't get treated / get misdiagnosed have lots of patented drugs, the industry funds most the research at uni, the treatment is different for everyone, and so on. Making the most of what we have at the moment - there's no way I would've got the 300 injections I've done since September off the NHS!
I cannot tell you how it distresses me to think of all the B12 deficient / Pernicious Anaemia patients who do not have knowledge of /access to this forum , where I have obtained so much help and support that has kept me from serious ill-health . There are so many people out there who are leading vile, miserable lives for the lack of a very cheap treatment . I could weep . Why oh why is this happening ? I want to SCREAM SCREAM SCREAM ! I cannot believe this this goes on in 2018 . IT IS AN UNBELIEVABLE SITUATION .IT IS A SCANDAL . Of course there is no financial reward for diagnosing Pernicious Anaemia like there is for other illnesses . And there is absolutely nothing in it financially for the Pernicious Pharmaceutical Industry ( no patents on vitamins ) I’ll shut up now before my message is deleted .
Hah wedgewood I don't see anything in your post which would cause admins to delete - and that brings me to another point, that we have wonderful but limited communities like here in order to help with the issues.
Limited in terms of legal liability and of course because they're managed by the tireless efforts of a few individuals whom I'm sure get a lot of satisfaction from helping people but it should not be that way. I also joined another group on that mighty blue social network and was chucked out a couple of weeks back because I mentioned that folic acid caused me issues and they won't have a bad word said about it. Whilst I appreciate their position, this again comes down to issues where there are limited spaces where this can be discussed - the NHS have one view, one group has another, and so on.
This won't get solved if we rely on others to do it for us, the world has changed - the only reason the NHS are like this is because it's an echo of the industrial age, it's a top-down approach and the funding flows in a particular direction so whilst I applaud the efforts of those trying to battle against it, it's my humble opinion we need to build new institutions to reflect our more co-operative society that we're moving into.
We are learning new things every day, no one person is the same as another, no one situation is the same as another, and no one solution to this will work. I'm dedicating some time each week to investigate further from my field of Free/Libre Open Source Software - there's a 'GNU Health' project which I found out about watching sessions from the recent LibrePlanet conference:
"Free Software as a catalyst for liberation, social justice, and social medicine"
- that may be a good place to start a project for B12 under, there's quite a few examples of successes now as the founder of the Software Freedom Conservancy is a lawyer who has a defibrillator implant for which the software was made on the assumption that it was for older people and shocked her twice when she was pregnant but as the software was proprietary (think Microsoft, Apple, etc.) she couldn't have access to change it. Now they're working with manufacturers who are interested because it lessens their liability so things are moving forward. There was a session on this and another device for diabetics where they can control their levels from mobile phones:
I'm not sure what to do next as also having to once again piece my life together - I was bedbound for pretty much 3 years & now living in my 80 year old dad's spare room at the age of 45 but luckily I built my business around an illness I didn't know I had so have grown a network and can work from anywhere and starting to pick up a few leads for bits of work so hopefully now my brain is almost back to normal I can get the ball rolling - again, and as I can support myself more I'll be able to support others more too - my main goal for the moment is to get the hell out of here though - of course am very grateful but been stuck in the middle of nowhere for 2 years now & want my life back lol!!!
We will get there... just don't expect it to magically happen out of thin air!
Went to a neurologist once, who admitted he didn't know much about B12. Bit of a surprise.
Went to two haematologists who told me, between the two of them, that B12 was highly addictive, and that it was toxic and carcinogenic.
I preferred the neurologist; as appalled as I was that a neurologist was so unfamiliar with B12 deficiency, at least he was honest.
The haematologists weren't: I asked for supporting evidence 3 times, and was given nothing. When I produced supporting evidence for my case for more frequent injections, I was told to look at the research date: 2009 .... didn't realise that research had such a short lifespan !
Trouble is with specialists, GPs seem to believe them, and so this can have consequences:
WARNING: frequency can go down as well as up.
Haematologists told my GP to give me no more than 1 injection every 2 months (notice they did not have sufficient confidence in their conviction to stop them completely) . Been there before, deteriorated, and so had no option but to reluctantly (and often ineptly) self-inject.
I do this every 2 days and have done since September. It is working, but very slowly. Physical strength coming back quicker than cognitive ability- and this is what tires me out most.
Another problem ? Looking better, so people think you are cured ..nicer problems to have !
I wish you well and hope you are not disheartened by this- you may be luckier with your consultants.
Wow - how do they get away with such harmful info?!
I'm on 4 injections a day at the moment, keeps me going. Had a week off a couple of weeks back and survived but didn't thrive so now I do it when I feel like I need it as I can tell because my thoughts start getting a bit despondent, then I inject and it's all good again for a few hours.
Gonna keep up this routine until I get my feet back on the ground with my biz/income, I realise I'm under a lot of stress which doesn't help so hopefully won't be long before things get better. Still got permanent pins and needles in feet but guess they could be there for a while.
Glad you're self injecting too and taking control - mine's got a lot easier since I got an auto injector and inject into my bum instead of legs!
I noticed it got harder to inject into my thighs but then I figured out it was probably my nerves repaired where they weren't working well before - so nice to have heat in my hands and feet again after many years!
4 a day is a lot, Steve, I hope it is getting you back on track. Takes a long time to get that ill, so recovery also slow. Everything else has to wait until you are able to deal with it, and that can be nerve-racking and lonely, but also unavoidable. I got my list of symptoms out and wrote against each one where I was now and it's all mainly improvements, or symptoms less frequent and weaker, except for air-grabbing yawns- but that could easily be because I am doing more and sleeping less. Except for the one day I work, where ratio is work 8 hrs, sleep 16 .... still hoping for an improvement there !
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Advice needed re GP / B12 injections
