I’ve been having injections of Hydroxycobalamin every 8 weeks for years and have been fine. About 6 weeks ago I had a fall and hit my head and a week or so later I started getting all the old B12 symptoms especially neurological ones in spades. I struggled on but was getting to the point where I couldn’t hold my back up or get my words out and felt very uncoordinated , kept dropping things and tearful and just weak, headaches and unmotivated. My partner suggested trying a b12 injection even though nowhere near due ( I self inject) and I had a huge reaction to it with warmth and tingling surging up my spine and throughout my body and head. Next day I felt improved and the day after completely better.
I was blaming the fall but now think my body needed more B12. I’ve had covid 3 times this year and the vaccines. Might this have depleted the B12 in my body?
Then I started thinking about Ferretin and Folate. My Ferretin is 30- tested recently. I haven’t had my folate tested for years and will ask the gp to do that. When I was first diagnosed I took active folate and it made me very unwell with immediate through the roof anxiety. As a consequence I’m very nervous of taking any folate supplementation. Can I rely on the GP result for folate levels? What form of folate can I take which will not cause anxiety? Will I absorb it through the gut? I have very high parietal cell antibodies and a long history of anaemia and neurological and other symptoms without b12 injections but haven’t been diagnosed with PA because the IF test was negative. That was 14 years ago and I’m now 61. Should I be pressing for another IF test now I’m older? I worry if I get dementia or something and I’m not diagnosed with PA that someone will stop my injections. I’d like a diagnosis and for my need for B12 to be on the record properly.
Should I press to see a haematologist or see one privately? There’s a big history of auto immune illness in my family and I feel the the whole picture has never been looked at.
Your advice so appreciated
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Blais
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As you say I’m reluctant to ask my GP for a folate test or an IF test because they’ll likely test B12 too and when it comes back high try to review my injections.
Unfortunately the IFAB test isn't very sensitive and will give false negatives about 50% of the time meaning that a negative doesn't rule out PA as the cause of a B12 absorption problem. A false positive is much rarer which is why it is a useful test . The BSCH standards even include IFAB negative PA because the test is so prone to false negatives.
There is a test involving gastrin levels as a marker that may be better at confirming PA but I don't think this is currently recognised or even mentioned in standards if you are in the UK
Patients with PA often experience problems absorbing other vitamins and minerals because they have lower stomach acidity. Folate and iron are the most commonly affected.
Acidity levels also tend to drop as you get older which would put you in a double whammy for absorption problems.
Active or methylated forms of folate tend to be the ones that produce higher levels of anxiety in some patients - methlylated forms of B12 can have the same effect. Try a supermarket supplement and see if that works better for you.
Thank you so much for your reply. I had such a bad reaction to methylated folate - out of the park anxiety which lasted months - that I’m truly nervous about taking folate in any form. I’ve been having B12 injections for over 10 years and have never supplemented with folate - maybe that’s the reason I’m getting symptoms now. Have you ever heard of anyone getting anxious with folic acid and will I absorb it through my gut ? I’m very high parietal cell antibodies. My Ferretin has been a real struggle for decades down at 6 several times and never much above 20 and before menopause I had done iron infusions on the nhs and I got up to 55 and felt much better after a few weeks. Now I’m at 30. I’d love an iron infusion but they won’t give me one I’m sure as I’m within limits but still at the very bottom of normal. Should I consider a private iron infusion?
Generally problems with folate absorption aren't as fundamental as those for B12 absorption
Ferritin isn't a definitive measure of iron status - ask for a full iron panel if you are concerned but being low in range probably isn't a problem.
Please remember - this is a patient support forum and not a substitute for professional medical advice. A pharmacist should be able to help with recommending suitable supplements.
I spoke recently to a B12 deficiency sufferer who needed to increase the frequency of their injections as they got older.
I do wonder if going through the menopause could increase the need for B12.
I've read that some people with Long Covid may be deficient in B12 and Vitamin D.
Search online for "long covid vitamin deficiency" but make sure you're looking at reliable websites.
I've assumed you're in UK.
It's helpful to know which country you are in as treatment patterns can vary between countries. I'm in UK.
Have you considered joining and talking to PAS?
PAS can offer support and pass on useful info. You do not need a confirmed PA diagnosis to join PAS. PAS membership is separate to membership of this forum.
A PAS survey some years ago found that some people waited over 10 years to get a diagnosis.
On this forum there are people who have never found out why they have B12 deficiency.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(lots of pages).
Local guidelines
I suggest finding out what's in the local B12 deficiency guidelines and local folate deficiency guidelines for your ICB (Integrated Care Board) or Health Board.
Try an internet search or submit a FOI (freedom of information) request to ICB or Health board to find them.
Two useful B12 books
(folate is also mentioned in them)
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
UK treatment info in book is out of date. See BNF hydroxocobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Sometimes PA and B12 deficiency is not always as well understood as it should be by health professionals.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I'm very interested to hear that after a fall with a hit to the head you experienced an increase in symptoms that you associated with your B12 deficiency. I had a slip on black ice and a hit to the head earlier this year, and within days was experiencing severe fatigue and other symptoms associated with B12 deficiency. My B12 had been tested in July 2021 and was 521 - so not considered low by my PCP (I am in USA). But after the fall and my new symptoms my PCP immediately retested and it was 175 (about 2 weeks after the fall). I was started on B12 injections, and slowly have recovered although I now SI daily as my PCP's treatment was too sporadic.
I've done a lot of reading and research and what I have learned is that when the brain suffers even a mild hit, the brain then scavenges the body for B12 in order to repair the disrupted brain axons. There are peer reviewed articles recommending massive B12 treatment with head injury, but this has not been adopted as as standard of care protocol for treating head injuries.
My level of 521 in July 2021 may well already have been on a downward track. When tested this March in addition to very low B12 I also had positive IF test as well as H.pylori (now treated). I had some symptoms before the hit to the head that I now think may well have been B12 deficiency symptoms and have read that under 600 test result is considered by some of the medical community to indicate a problem. But the hit to the head apparently immediately accelerated the B12 decline.
Is there anyone else that experienced B12 issues after a hit to the head? I'd love to connect on this.
Really interesting CRK1 and I’m so glad you were able to get the treatment you needed……..
Wondering if you have any links to the research?
I had several bad falls before I realised it was probably connected to PA/B12 deficiency (autoimmune disease runs through our family). The first fall was out walking on holiday some years ago - ended up flat on my face - now realise reflexes probably not working properly, as sustained severe forehead bruising with a black eye. I do remember feeling v. unwell, retiring to bed, shivering with shock.
It was a few years later though, after a really bad virus, that I began to experience relentless fatigue, brain fog, tingling feet, proprioception, etc. Self treatment e.o.d. with B12 injections for the last four or five years means I’m now able to live a normal life, walking as much as possible, but being careful to avoid stress or overdo exercise.
One thing I’ve noticed is that many top athletes end up with neurological diseases, (Motor Neurone Disease, Parkinson’s, MS, etc.) ?
PS I still have balance problems when walking in the dark……
So interesting. I never imagined that a blow to the head could scavenge B12. But when I took the injection I could feel my head literally lapping it up!
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