Personal Story

Jimmy

My journey with B12 began in 2005 when I made the decision to become a vegetarian. I’ve never been a fan of meat so the switch was easy but B12 deficiency runs in the family and I remember being lectured by my Nana about taking B12 supplements and to include eggs, dairy and fortified foods in my diet. I’ve stuck to that rigidly ever since and the next 14/15 years of my health were relatively medically boring.

Fast forward to the end of 2019/beginning of 2020. I was getting really tired at work and having a few dizzy spells but just assumed I was coming down with something and then it would pass. I went through a period where I was getting these huge and incredibly painful mouth ulcers too and then COVID-19 struck and I was placed on furlough for just over a year. In hindsight, there were one or two telltale signs something wasn’t right but because I didn’t have to go to work, everywhere was shut and we were being told to stay at home, I was resting much more than I otherwise would have done. I think this masked some of my symptoms at the time, if I felt tired, I could just go sit down and watch TV.

It was on my return to work in May 2021 that it hit me like a tonne of bricks. Initially, I put this down to getting back into the swing of things after having so much time off. I work as a painter & decorator, a relatively physically demanding job and I’d just spent a good portion of the previous year twiddling my thumbs. I’d have good weeks and bad weeks to begin with and I tried all the usual suggestions like going to bed earlier, switching my phone off before bed etc, but nothing worked. I was waking up in the morning feeling as though I hadn’t been to sleep at all despite getting at least 8 hours sleep (even more on the weekends).

Throughout the summer, I missed out on social activities because I was just too tired and despite my friends telling me to see a doctor, I declined believing no doctor will take me seriously if I just say I’m tired all the time. I started getting short of breath and palpitations doing simple things like climbing the stairs. Then there’s my legs, an ache like no other making it really hard to walk.

By September 2021, my Nana noted she’d seen me a few times over the summer and every time I told her I was tired. First, she quizzed me on the B12 supplements, “yes I’m still taking them, I always have done”. She told me I best go and see the doctor, B12 deficiency runs in our family with my grandad, mum and older sister already having injections. I finally gave in and made an appointment.

I had a telephone appointment with the GP who agreed my symptoms could be indicative of B12 deficiency and noted the family history. They treated all 4 of us and was familiar with the family so had no issues checking my B12 level and made a face-to-face appointment to discuss the results. My level was 103 pmol/l and folate >20. The range for my area was 115-1000. “Ah” I thought, “it’s got me too!” And there’s some validation for why I feel so ill. My full blood count was normal though, so no anaemia.

On meeting the GP face-to-face, we had a discussion about diet and I told them I’m a vegetarian and take supplements as well as making a conscious effort to include eggs, diary and fortified foods. They told me supplements can skew the results so to stop taking them for now while they run a second test to confirm the deficiency a week later. They also checked for intrinsic factor antibodies. The second test was 115 pmol/l, right on the border and my IFAB was negative. They said for this reason, they couldn’t give me injections and prescribed 50mcg cyanocobalamin tablets twice a day for 2 months, then once a day thereafter and told me if I don’t improve to come back.

I knew almost nothing about B12 deficiency at that point and despite expecting the injections, I just took the GP’s word for it, that they knew best and if it didn’t work, I could go back. My family didn’t understand why I’d been given tablets after they had been given them during the pandemic and not having any effect whatsoever, I didn’t have much hope it would work for me, but I had to try I thought. They were a higher dose than what I had been taking already at least.

But I didn’t improve, I just steadily got worse. In February 2022 I went back and told them I didn’t feel any better and I was really struggling. They repeated the B12 test and a few others and asked me to make another appointment to discuss the results. 148 pmol/l. So it had crept up slightly, but I felt a lot worse! In this time, I’d noticed my eyes were straining so I had my eyes tested. I’ve always had perfect 20/20 vision but this time, confirmed, I have astigmatism in both eyes (blurred vision). This is when I started researching B12 deficiency and found a list of symptoms. There they were in black and white: fatigue, shortness of breath, palpitations, dizziness (I was starting to lose my balance by now too), mouth ulcers, vision problems, muscle weakness. There were two others that stood out to me: numbness and tingling and problems with memory, understanding and judgement. Is that why I keep looking in the fridge for pots and pans? How did I not realise this was a problem before now?

My mum had pins and needles as a symptom and when she’d told me this before, I just assumed it was quite obvious, like when you fall asleep on your arm and you get that quite sharp sensation. I didn’t have that, but occasionally I would notice my arms and legs feeling a bit tingly but never thought anything of it because it was so subtle. My mum confirmed what she experienced was actually fairly subtle too. So, all this time I’ve been thinking I had all these random symptoms, never realising they were both a problem and the sign of something that needed addressing. Suddenly I felt daft thinking “is this what it’s like when you get to your late 20’s?”

I found the local guidelines attached to my results in the NHS app and there it was, results 115-150 can lead to symptoms so assess individually. Neurological symptoms should be treated with injections every other day until no further improvement. I made the follow up appointment but my first GP was on leave so it had to be with a different GP. I felt too ill to wait and at least I’d get a second opinion I suppose. GP number 2 was quite argumentative but so was I. “Your level is normal now” right, but I feel worse, look at the guidelines, 115-150 can still lead to symptoms, which I’m having and now I know some of them are neurological, so I need injections, the tablets aren’t working! I was told they couldn’t just give me the injections; they would have to write to a specialist first. I conceded, left that appointment and continued taking the tablets for now, because that’s “better than nothing” right?

Wrong, I kept getting worse. I never heard back from GP number 2, so I tried to make an appointment with GP number 1 again, at least I felt like they listened. And then, on the morning of that appointment, COVID finally got me! It wasn’t until May 2022 I managed to secure an appointment again with GP number 1 and had the same argument. I’d also made another appointment with the opticians as my eyesight was getting worse. I ended up with a slightly stronger prescription. The GP agreed these additional symptoms were neurological, looked at my file and said there was a request to refer me to neurology, so they did that and put it through as urgent. They said if the tablets I was taking weren’t helping I could take more of them if I wanted to, but I questioned this and stated they’d given my mum injections with the same symptoms, so why couldn’t I have them? They said I could try them if I wanted to. Totally unprepared for this outcome, I lost my train of thought and blindly agreed to their suggestion I only have one a week for four weeks due to already having the tablets.

After I left and regained myself, I knew I should have pushed for the guidelines to be followed, every other day until no further improvement but I guess I could try the injections and at least if they work, I know this is definitely what I need and if I get worse, I can go back again and say that wasn’t enough. This is exactly what happened. I started to make improvements, the dizziness was the first symptoms to disappear, I stopped getting short of breath, the palpitations ceased, my energy levels were improving but the pins and needles were still there, better, but not gone. After a few weeks of the 4th weekly injection, my symptoms started to return and then I started to notice some new symptoms. I had a constant headache that wouldn’t go away and tinnitus, a high-pitched constant tone that couldn’t be drowned out.

I had an occupational health assessment in August 2022, and they concluded with my state of health I should cease working at height and they advised me to return to my GP. Again unable to see GP number 1, I made an appointment with a 3rd GP who was totally uninterested in the guidelines and refused to give me any more injections, stating I could overdose. I’d really educated myself by this point and wrote a 14 page letter of complaint complete with sources and attached the local guidelines. I learned from this, the 2nd GP had written to a haematologist for advice, and they had said they do not manage or investigate haematinics (despite B12 deficiency being a haematology specialism), advised to contact a gastroenterologist who was unsure why they had been recommended and advised a haematology or neurology referral. This referral didn’t get put through until I went back 6 weeks later to query what was happening.

The practice manager called me and asked me to make an appointment with GP number 1 to discuss this. The GP apologised and said they had taken on board my “very well written letter” and had learned from it. In hindsight I should have been given injections from day one and went on to explain they had assumed my low B12 was diet related. I asked a hypothetical question: assuming I became a vegetarian today and I didn’t have a good diet or supplement, how long roughly would it take for me to get into the position I’m in now. He theorised it would take at least several months. I pointed out I’d been vegetarian since 2005 and repeated I had always taken tablets and made a conscious effort to eat eggs, dairy and fortified foods. On checking my records, I’d had a B12 test in 2008 that was comfortably in the normal range, 3 years after I started my vegetarian diet, their face dropped in what I can only imagine was their realisation they had made a mistake.
I asked again, could we now follow the guidelines and initiate every other day injections until my symptoms resolve? I was told that wasn’t possible because they were at risk of being criticised for giving out too many injections rather than too few and there weren’t enough appointments to administer them. But what they could do was give me them every 8 weeks going forward rather than 12 and monitor my blood level after 6 weeks until my level reaches the upper half of the range. I was still learning about B12 at this point so didn’t see an issue with it and figured that was the best I was going to get. I was still waiting for the neurology referral and held out hope I could sway them.

The neurologist was very sceptical about B12 deficiency being the cause of my symptoms but ran some tests and ruled out a neurological disease process, concluding my symptoms were likely caused by my low B12. They didn’t offer a treatment plan and referred me back to my GP. I asked again about every other day injections now that we have comfortably ruled out near enough every other possible cause and even asked if I could self-administer them. I was told I couldn’t do that, but we would continue on their treatment plan until my level reaches the upper half of the range and then we could look at reducing the frequency back to 10 or 12 weekly. I kept arguing “but what about my symptoms?” but to no avail.
It was now that I’d learned how repeat tests shouldn’t be conducted once on treatment, so I cancelled the next blood test. When I went for the next injection, the nurse refused to administer it stating they were waiting on the blood test results. I told them why I had cancelled it and had no intention of having it again, recited the guidelines and the maintenance dose with neurological symptoms being 8 weekly regardless. They went to speak to a GP and confirmed I could continue with 8 weekly injections and no more blood tests. Despite further attempts, I am still only prescribed them 8 weekly.

Compared to where I was in 2022, I have improved but life is still a real struggle, and my symptoms haven’t resolved completely. My latest eye test showed my vision has deteriorated again and I’ve had multiple relapses in symptoms. I go for regular physio sessions to help with the aches and pains in my legs too.

I attempted a medical negligence case but this couldn’t be taken forward. We successfully proved breach of duty on the part of the haematologist as they should have given me an appointment, conducted further tests and given advice to my GP’s but we couldn’t prove causation, which means that the breach of duty led to an injury. My level of 148 was “within the normal range” and we therefore cannot prove I was deficient at that time. For those who understand why this isn’t always the case, you will be as frustrated as I am.
However, the case kick started a campaign I’m now continuing with the Pernicious Anaemia Society, using the lessons I’ve learned from my story. My aims are to rectify where my treatment went wrong on the back of the NICE guidelines released in March 2024 and to educate healthcare professionals on the importance of timely and adequate treatment alongside the pitfalls in testing and the need to take symptoms into account.

In addition, NHS resources are limited and nursing appointments taken up for administration of injections is inconvenient for patients and isn’t always necessary. For those, like myself, who are willing and able, self-administration should be adopted. However, one potential barrier is that Hydroxocobalamin is licensed for intramuscular injection only and it seems, despite the Department for Health and Social Care confirming to me that there is no legislation against it, many healthcare professionals are reluctant to prescribe an intramuscular injection for self-administration. By contrast, Insulin and Fragmin are but as subcutaneous injections. Therefore, it is my belief that if Hydroxocobalamin could be licensed for subcutaneous injection, that will pave the way for self-administration, ease the burden on GP practices and hopefully, lead to more frequent treatment in line with recommendations.

In the meantime, I recommend patients educate themselves so they can advocate for themselves. Despite advances in research, many healthcare professionals are not up to date and falsely believe a just in range level or negative intrinsic factor antibody test can rule out B12 deficiency. It is much more complex, and testing is not always accurate.

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