Personal Story
John
My original symptoms were that I noticed after about an hour or so doing general jobs/gardening I felt tired and fatigued. I never ever felt like this before, and therefore needed a rest, as I was unsure what was happening; this was in September 2023.
During late September we went on a ten-day cruise, and I felt so tired and drained by the evening, it was as though I had to recharge my batteries ready for the next day.
I was then diagnosed with bradycardia, and I mentioned to the doctor if this had any effect on my tiredness; he then requested that I have my bloods checked.
Finally, I had blood tests carried out in late October, and early November I was diagnosed with B12 deficiency.
The doctors were good then, also, I didn’t have any readings in my blood with B12 (nil count).
They immediately insisted that I went straight away for the first injection, as they were concerned. They even asked if I consume plenty of greens with iron. In fact, I love green vegetables.
I was given two injections per week for the first three weeks, followed by one injection every twelve weeks, but over the last two years I still suffered a lot with fatigue and I still do.
I have had several blood tests since being diagnosed, which I had to request, because I couldn’t cope, especially with fatigue.
Once more off to the doctors. I explained what I was experiencing, feeling rather sheepish about telling him about a meal just sitting in my stomach. However, he was excellent, and there was no fuss; he just said I think we need a blood test and I will see you in a couple of days. When I returned he said you have PA, and you need injections of B12 for the rest of your life. As simple as that, and, whilst it was a shock and completely unexpected, there was a huge sense of relief that something had been discovered. After the loading doses my life turned round, and here we are 30 plus years on, and I still inhabit this mortal coil. There are times that I feel an earlier injection time than twelve weeks would be good, but hey, I’m still here, and I will forever be grateful to that doctor, and for that simple blood test. It proved to be life-changing.
Again, I was suffering badly with fatigue. On occasion I felt it was the last day on this planet, I was so tired, it was beyond belief; going to bed at 9pm wasn’t in my nature.
From December 2025, I have been fortunate to receive injections every six weeks. Now I feel my body has stabilised reasonably, but if I still do a couple of hours of manual labour, I suffer with fatigue and fall asleep.
If I have to go to bed early due to the fatigue, I tell my wife that I absolutely hate living like this, as it’s unusual and foreboding. This is something the doctors do not understand.
During 2025, my daughter’s mother in law commented dismissively that a lot of people suffer with B12 deficiency. Maybe they do, and maybe they rely on medicine orally. I don’t think she understands how serious my issue is, considering I’m on injections and how I suffered or still suffer, or even how bad I was.
I found her comments rather annoying and frustrating, as she doesn’t understand the seriousness. Who does unless they suffer with PA? Other friends and family, including my wife now sympathise with my issues.
I managed to get a copy of the original letter from the doctors, but at the original time that information was not disclosed to me.
This is a copy of the message: “This gentleman has been treated for B12 deficiency since 2023. He had a positive test for gastric parietal cell antibodies in 2024”.
Since July 2025, I have suffered with pins and needles in my toes and cold feet, and it’s annoying and frustrating.
My doctor said that this was caused by my back. I insisted that it wasn’t, so they referred me to a neurologist to check my issues. He carried out a conductive test on my lower legs and toes and asked me what my count was when I was diagnosed with B12 deficiency. I tolds him my levels where very low and no count was available.
The specialist reported that although the tingling in both feet had been going on for several months, it did not look like it was being caused by a trapped nerve in the back. Although the MRI showed some everyday wear and tear, it did not explain the symptoms. Vitamin B12 levels were normal and treatment had not helped. Tests showed that blood flow to the feet was good, but nerve studies suggested reduced nerve function in both legs. The conclusion was that there was evidence of a distal large fibre sensory neuropathy, meaning damage to the sensory nerves in the feet and lower legs.
The doctors were still not convinced this is caused by B12 deficiency. I did tell them that when I was first diagnosed, I had no B12 readings, but these more recent issues didn’t start until ten months ago, although I still believe that the B12 deficiency caused this initially and took some time before causing this issue.
My doctors gave me the option of taking neuropathic meds as a next step (amitriptyline if needed). This won’t cure the issue, but only numb it.
In July 2026, I had a MRI scan (Doppler Test) on my lower legs and feet, and this was all clear.
The nurse mentioned that my feet were cold, (even though the temp outside was 32 deg C) and I was told I may have to wear compression stockings. But that won’t cure my pins and needles caused by lack of B12.
The doctors considered putting me on amitriptyline, as this is all they can offer to control the tingling, numbness and cold feet. I declined taking this drug as this would only blank the issues, but would not stop the cold feet caused by the same issue.
I spoke to my doctor again about the seriousness of my symptoms and they referred me to a haematologist. I am on hydroxocobalamin; I’m told this should help with my issues, as I believe this works by replenishing my B12 as required in a more slow-release way. The nurse advised that it would take two weeks to take the full effect. Well, let’s see how this works!
After pushing, I finally received a message from my doctor saying that the lab had contacted them about testing my low B12 in 2024. They didn’t test for intrinsic factor. Whilst this wouldn’t change my current treatment, if positive, it would have helped establish the cause of my low B12. It has taken two years for the NHS to acknowledge that this test wasn’t carried out.
So, I will carry on regardless, and will consider this option if my issues get worse. I think that they are looking for other options to blame, rather than the Pernicious Anaemia, which I believe they don’t understand.
Why don’t they listen to me as a patient?
I believe my PA is hereditary; my brother has B12 deficiency and he’s on tablets, my cousin is on twelve-weekly injections, my grandmother was on injections every week (cyanocobalamin), my great-grandmother was advised to eat raw liver. I have told my doctors again and again that my issue is genetic or inherited, and yet they never ever put it on my records or even actually listen.
I contacted PAS about my issues as I was getting frustrated with the doctors, and their helpdesk advised me to have my iron levels, folate and B6 checked. When I asked my doctor, they looked at my notes, and said my iron and folate levels were satisfactory. They said that they don’t carry out a B6 blood test and cannot request this on the NHS.
Looking forward, I will do all I can to live with PA, but I strongly advise anyone out there with this issue to keep badgering the doctors to get the answers they need.
Insist on appropriate blood tests. I can assure you that I had to fight to get my injections every six weeks. I had to explain how bad my situation was, and eventually they listened and referred me to a haematologist, who agreed to my current injections. Without these current six-weekly injections, I don’t think I could have coped. I don’t think that I would be here typing this message.