I thought I would post an update on my situation as it may be of help to others and, well, I need to tell someone as I’m quietly fuming.
I’ve just had a call from my doctor apologising to me because “I must’ve pressed cancel instead of send or something”, referring to the letter I asked her back in September to send to a haematologist as with neurological issues my treatment is supposed to be supervised from the start by one. I have asked multiple times since then for her to chase the appointment up, each time she’s said she would, which I find strange as still no appointment, so how would you chase up a letter that’s not been sent?
Back last summer I’d gone to the doctors due to continual headaches, and one of the blood tests done in August was for B12, which came back as 155pg/mL [180-914]. I was given a set of loading doses and nothing else, no follow-up appointment, nothing. I ended up asking the nurses what the plan was, one told me I had to have injections every three months after, then they’d check me again after a year. Another told me I’d have to have injections for life.
These initial loading doses made me feel awesome - like night and day, I was back out cycling, and at the beginning of September I went up to London for a long weekend to attend an entrepreneur conference. I felt great and even went out dancing one night till the wee hours. At this time I had no idea what B12 was, or that alcohol could affect it, or that eating gluten was potentially one of the issues that had caused trouble throughout my life.
Shortly after this conference I crashed, and crashed badly. That’s when my research started and I discovered this group and a few others. I went back to the doctors and showed them the guidelines and that I should’ve been injected alternate days and supervised by a haematologist but was told they could put me on another set of loading doses and they would write to the haematologist, the letter would be sent the next day. I took along a folder-full of printouts I’d made, the only thing she’d take was the form I’d filled out with the neurological and other symptoms, and was told that would be included in the letter. I’d listed out all the signs that pointed towards B12 deficiency since birth and that this wasn’t a simple loading doses then three monthly fix-and-go, she said “Well the best I can do is change them to monthly”, and I’m sure she said “at least they can’t say we didn’t do anything”. Since then I’ve audio recorded every meeting, I may have that one as well, will have to check.
By that time I couldn’t hardly stand up, wobbly gait, unable to focus, five second memory, and all the signs of Subacute Combined Degeneration (‘SACD’) of the spinal cord. I had the first of my second loading doses, then a call came saying the nurse was away and it would be another week before I would have my second. From research I saw there’s only a short space of time for SACD to be treated properly before damage is permanent, and I didn’t want to be permanently like I was, it was nightmarish. I also discovered the stress factor and the sheer amount B12 does in terms of your thinking and eventually your body movements.
This is when I took the plunge and decided to self-inject, today I’ve just done my 111th injection since 30th September and am self-injecting twice a day, along with taking all the cofactors and my ‘sweet spot’ of 2x5mg Methylfolate. It’s keeping me able to do things, but I feel the underlying issues are not changing, in fact I feel they’re getting worse but perhaps that’s just because I’ve been stressing about the lack of support I’ve had from the NHS.
After more help from the support groups I went back and asked for further blood tests, including Vitamin D. In October, it was 35nmol/L [40-250] so the doctor called me back in and she said I’d need to take 20,000IU twice a week. After more research online I decided to follow a vitamin D protocol and started on 5,000IU daily, I’m now up to 20,000IU daily which seems to be my ‘sweet spot’. I was told I’d need a calcium test in three months and depending on the results of that, a test for parathyroidism. I asked about the haematologist, was told it would be chased up.
As I continued my research and getting the right cofactors in order just to be able to function and not be bed bound as I have for almost three years I saw parathyroidism is just another symptom, and as nothing seems to be getting better and my current cost is around £150pcm which I’m having to borrow I realised nothing was happening and again I’d have to push things along.
For the past week I’ve been compiling a letter, saying I’m concerned my serious B12 deficiency issues aren’t being addressed, only current plan is a parathyroid test which is another symptom of B12 deficiency. I said the only reason I look awake and alert is because I’m on this expensive regime, if I wasn’t I wouldn’t be there. I said I’d tried going a day without injecting and trying sublinguals, they did nothing no matter how many I shoved under my tongue for hours. I again listed out all my previous pointers to B12 deficiency and my mis-and-missed diagnoses, from depression in 1994 to large red blood cells in 2015 which is a sign of advanced B12 deficiency.
I asked for Ferritin, Folate, CBC, including Potassium & Magnesium blood tests to check as I’m on this supplementation and injection regime I’ve only discovered through groups on the internet and nothing “official”. I mentioned the pins and needles / tingling in my feet, sometimes hands and face, and that it can not only be a sign of parathyroidism but also B12 deficiency, and maybe with the occasional pain the vitamin D working pushing calcium into the bones. I mentioned I’m still getting the dull headaches, and that they’re in the same place I had a head injury as a child so was a little worried. I asked again for an MRI scan to see if there were any issues caused by the SACD, and I asked again for a neurologist appointment. I also said I’d been gluten free now for three months and that I haven’t drunk alcohol for over two. I don’t even have the want for it now, or for the red meat I used to be such a massive eater of, making my own beef chillis and practically living off those. Ten or so years ago I’d given up gluten and had lost a lot of weight but had attributed that more to the exercise I was doing and not realising that giving up the gluten had actually given me the energy to do the exercise.
I finished the letter saying that if nothing changes in the non treatment of my B12 deficiency then I would be investigating my options. I said I’ve not been treated according to the NICE and BNF guidelines for B12 deficiency with neurological issues and three months on I feel this is now bordering on medical negligence. I said I continue to bring more evidence and information which you choose to ignore. I also said I was donating two books, “What you need to know about Pernicious Anaemia and Vitamin B12 deficiency” and “Could it be B12? An Epidemic of Misdiagnoses” to the surgery in the hope of a proper diagnosis and to help others, and I left them on her desk as I gave her the letter.
A half an hour I was in there, she tested to see if I could stand up straight and walk in a straight line, I said well I did my second injection of the day ten minutes before I left the house. She then went on to compile a letter to the neurologist (so obviously one hadn’t been written) and I ended up in there for half an hour whilst she tapped away, apologising for her lack of typing ability.
So today I get a call with this apology for the ‘mix-up’ in the letter that she absolutely did write to the haematologist then must’ve accidentally pressed cancel instead of send. No mention of the follow-ups she must’ve accidentally not done, but apparently the letters have both been faxed off now and so something should be moving along. She mentioned I’d left my books there, I pointed out that it does say in the letter I sent her that they were donations to the surgery. She said her whole family has B12 deficiency so knows the situation, I said well I don’t see how that can be as I wasn’t treated according to the current guidelines which is why I donated the books. Incredulous.
I don’t personally think there’s anything anyone can do now which will improve the underlying system apart from me ensuring I have less stress, keep my diet going and hope that at some point my body might absorb B12 more, but I’m only three months in and I’ve seen that’s very early so will just have to be positive and keep going. I’m understanding myself more so can see when I start sliding as I get snappy and stuff, soon rectified by another shot of B12.
So once again thanks for the support and help of this group and again apologies for times I may have been more reactive than I should’ve been, I wish you all the best in your recoveries. I don’t know this is gonna pan out but so far I’m pretty disgusted with the lack of awareness and hope I can do my bit whilst I’m around to help there.