long COVID B12 PA

Long COVID and Pernicious Anaemia

21 Jan, 2021

Last Updated: 21 February 2021

Symptoms of B12 Deficiency

Remember back in the day when you had the symptoms of B12 Deficiency due to Pernicious Anaemia. And some of you won’t have to remember because you still suffer from the symptoms to some degree or other even though you are (hopefully) being treated.

Let’s remind ourselves of those symptoms: ready?

  • extreme tiredness (fatigue)
  • shortness of breath
  • chest pain or tightness
  • problems with memory and concentration (“brain fog”)
  • difficulty sleeping (insomnia)
  • heart palpitations
  • dizziness
  • pins and needles
  • joint pain
  • depression and anxiety
  • tinnitus, earaches
  • feeling sick, diarrhoea, stomach aches, loss of appetite
  • a high temperature, cough, headaches, sore throat, changes to sense of smell or taste
  • rashes

Ah! It’s like welcoming back old friends isn’t it?

There’s something you might like to know however, that list of symptoms above is taken from the NHS’s webpage on the Long-Term Effects of COVID-19

Remarkable isn’t it? The symptoms experienced by patients with Long COVID are almost identical to those of Vitamin B12 Deficiency.

We have, today, written to all Chief Medical Officers in the UK suggesting that they might want to consider evaluating the B12 status of patients with Long COVID. And we have also pointed out that using the current assay to evaluate the B12 status of patients wouldn’t do much good at all and that they might want to try a more accurate set of tests.

Some good may come of it, and even if patients are given a therapeutic trial of B12 injections it would be interested to see if they improved. We’ll keep you informed!


Update 21 February 2021

Our suggestion was well received and we were asked to complete an online form to enable a discussion to take place. We were happy to do so and also provided the Covid-19 Therapeutic Advisory Panel with copies of several recently published papers relating to B12 Long-Covid that we have been sent to us by interested parties.
We are aware that an active discussion is now taking place.
Links to the papers:
https://www.researchgate.net/publication/345895884_COVID-19%27s_toll_on_the_elderly_and_those_with_diabetes_mellitus_-_Is_vitamin_B12_deficiency_an_accomplice
https://www.sciencedirect.com/science/article/abs/pii/S0899900720303002?via%3Dihub
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7428453/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7428453/

17 Comments

  1. Sooz

    I was reading about a dr yesterday who got long covid and presented as pins and needles in her hands originally. She ended up with spinal issues and I said to my husband it sounded like PA. I suggested that drs should try b12 supplements as they cost pennies. It can’t hurt to try.

    Reply
  2. Elizabeth Barber

    Why is B12 deficiency/ Pernicious Anaemia so overlooked in the NHS it’s shocking how it fell by the wayside considering it was a death sentence not that long ago.
    I think it’s also the real reason for lots of other ailments like dementia,Alzheimer’s, possibly mental health problems as well and all the arthritis sufferers who may only need a vitamin infusion to make there lives more bearable .

    Reply
    • Barbara

      I haven’t had a b12 in since March last year. Gp surgery say haemotology said its safe to miss. But i have recently found it is up to the individual surgeries to decide to give it now. Personally that feels like a lucky dip scenario. OTC supplements don’t work for me. I am also diabetic t1, vitamin d deficient, iron deficient, and irregular magnesium and potassium. No one seems to actually care about the damage they are doing by withholding medication. The. Condition isn’t life threatening, but the depressive side effects of being so tired is.

      Reply
      • stephanie Robilliard

        That’s not good my surgery kept up with all my injections thank goodness

        Reply
    • Dawn Hunt

      I totally agree with you, I have battled to keep getting my b12 injections because the surgery doesn’t want me there because of covid,I’ve done everything I can think of & to my relief I got my b12 injections, now the surgery is telling me due to the nursing staff giving covid vaccine’s they can’t give me an appointment for my b12 injection, I’m worn out not least because of PA but with the constant battle to get the much needed b12 injection 😖

      Reply
      • Sara

        Iv not had my jab since January last year..emailed my dr aa can never speak to one and was told tbey cant se them restarting them dor the foreseable future. Cant change drs as they wont take anyone due to the covid situation!

        Reply
        • Georgina

          That’s appalling. How can they deny treatment? Especially with this whole ‘please seek NHS help, we are still here for our patients’ drive they have been doing!
          I recently had a blood test that showed I was B12 and Folate deficient, and have been started with my loading dose of B12 immediately. I have already had 4 in the last week and a half. How can one surgery be able to see patients and another not?
          I’m sorry you are going through this, it seems so unjust!

        • Rosemary

          I hope I can help. I gave my own B12 injections over the past year with syringes and needles supplied by the GP surgery.
          I am a retired nurse, however diabetics are trusted to give their insulin injections. Lay persons can be instructed how to do this, rather than suffer deficiences.

  3. Lesley Rose

    Symptoms can also be compared to underactive thyroid and menopause.

    Reply
    • Shirley

      I have not had my B12 injection since last Feburary, despite complaining I have a long term mental illness-suffer Tinitus and
      have been very tired and breathless. It took years until I was limping and having panic attacks before I was finally given injections 18 yrs ago.
      I am taking liquid B 12 at present but worry abou the right dose of suplements.

      Reply
  4. Juliana

    Please can you also tell them how vital our injections are to sustain life! As they have stopped mine again and they refuse to accept that I will die without it!

    Reply
  5. Jacquie Nellist

    I was taken off my VitB12 injections and told to go on Multi Vitamins xI am Type 2 DiabeticxI also have Polymyalga Been on steroids since 2018xOnly on 1mg now.I had Covid in November and since then I am suffering all the pains ,not much taste or smell and some of the symptoms of PNxI am going to go back to doctors as it,s now getting me down xTo check for VitB12 injection againxx

    Reply
  6. Anke

    I wrote an email back in March to Prof. Tim Spector / admin of the C-19 app. I put the suggestion to them that I thought Vitamin D and the spectrum of vitamin B’s could be very beneficial to a quicker recovery. I explained the following;
    We think My hubby and especially I have had coronavirus back in January 2020,( no one gave me the diagnosis back then, the condition Coronavirus was first mentioned at the beginning of March I believe.) I even developed a pneumonia ( as MRI showed.) I received antibiotics and I started to give myself Hydroxocobalamin loading injections every other day. My husband encouraged me to get on a plane to a Canary Island where we usually go every winter. I kept up the injections and we sat out in the lovely sun from 10:30 – 16.00 every day, lots of real vitamin D. There were nights we sweated so badly we had to change the sheets regularly, but after 10 days we felt we had turned the corner. The terrible bone pains dissipated as well. So a healthy atmosphere, good basic fresh food, rest, pain relief and supplements got us through. We kept ourselves in a kind of a lockdown so did the right thing. We probably contracted the virus on airports as we were travelling regularly and stood for long periods in waiting areas with people coughing and spluttering. Not realising there was a pandemic developing.

    Reply
  7. Patricia Hanson

    I am appalled at the taking away of B12 injections. I was lucky, I was being monitored for Chronic Kidney Disease and my doctor noticed that my blood levels were slowly decreasing and said there was no point in watching it go down any further, as it was clear I was developing B12 deficiency. Subsequently, during the course of my treatment I found I was getting symptomatic sooner than the 3 months and have been on injections every 2 months since. I did not realize how lucky I am to be with my practice and can only hope that those that don’t take PA seriously become educated sooner rather than later. The Nice guideline could help maybe.

    I do however have a mixed bunch of symptoms: tiredness/fatigue, brain fog which is upsetting as I have to work so hard to think when I get it and am very susceptible to viruses – last year I had one viral infection after another: January, February and March 2020. And again in the autumn.

    Reply
  8. Georgina

    I had Covid last year, and suspect I am suffering with Long Covid at present, I have also just found out that I am B12 and Folate deficient and have started my loading dose of B12 injections and am taking Folic acid now. Will be interesting to see what happens!

    Reply
  9. Hilary Thomson

    I am long-Covid and agree that in particular the fatigue and brain fog (standard long-Covid markers) are intertwined. I’m now wondering about the vaccination. I had a severe auto-immune reaction to the actual virus, contracted last Feb: erythemum multiforme including swollen hands. I’m still covered in disfiguring red patches. Now I’m wondering if the vaccination might provoke another outbreak. I can’t get hold of my GP to discuss it and my vaccination is booked for Monday. I don’t know which type.

    Reply
  10. Ash

    I have been suffering from Long Covid symptoms for over a year now. While I have a very supportive GP in terms of being happy to make referrals, and being very reassuring that this is not forever, she has done very little off her own back. I have requested referrals, I have sought out specialist input for hEDS, MCAS and PoTS, and I requested a redo of vitamin B12 testing, on the advice and success of other Long Haulers.

    My B12 test came back as normal (mid 300s), and I was informed that NHS wold not carry out an Active B12 test. I paid for a home testing kit from Cerascreen which came back as low (22). Does anyone know how accurate these are or if they are taken seriously by NHS?

    Reply

Leave a Reply to Patricia Hanson Cancel reply

Your email address will not be published. Required fields are marked *

Become a Member

The more members we have the bigger our voice!

Join the PAS

Subscribe to our Latest News Updates

Pin It on Pinterest