Hi, I've recently been diagnosed with a Vitamin D and folate deficiency and have been given supplements by my GP. I don't know the exact results though. My cousin has just been diagnosed with Pernicious Anaemia and our shared Great Grandfather also had it. She has all the typical symptoms, including pins and needles, however, my symptoms don't include dizziness or pins and needles. Mine are mainly brain fog, memory issues, exhaustion, weak muscles and mood issues.
I have another appointment on 21st Nov and I'm not sure what my next steps should be to rule in/out also having PN?
Any advice is appreciated 😀
Thanks
Written by
MyrtleTurtle
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First of all get a print-out of your blood-test results . You are entitled to them . I didn’t know this when I had tests done because of my B12 deficiency, symptoms and took the GPs word that all was normal i later found out that my B12 results were well below range . I eventually got a diagnosis of P.A. ( positive Inrinsic Factor Antibodies)
There are a myriad of symptoms for B12 deficiency/ P.A. because the sheaf of all nerves is made from vitamin B12 .
Hopefully I'll get access to my test results today, but my GP surgery (like many others) is a mess at the moment and lots of things are getting messed up and/or forgotten so I'm not holding my breath. Not seeing the doc again until 21st so will have to make do with the folate and D3 until then.
I can only see the summary on the NHS app but my GP uses DrIQ and I've requested access via that. It still needs to be actioned by the surgery though and most things I've arranged via that have gone unresponded to...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Local B12 deficiency guidelines
I suggest you track down the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health board.
If you can't find them online then try submitting a FOI (Freedom of Information) request to ICB or Health Board website asking which B12 deficiency and folate deficiency guidelines are being used in the area and for a link to or copy of them.
Read this blog post if you want to know why I suggest finding out what's in the local guidelines.
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 and films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Thank you, I did mention the family history of PA, but not sure if it registered or not if you know what I mean! I'll take a look at your links, thanks
"I did mention the family history of PA, but not sure if it registered or not"
I usually suggest putting concerns about treatment/diagnosis into a short, polite letter to GP as harder to ignore in my opinion.
See letter writing link in my reply above.
More about letters
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters brief, to the point and polite. Harder to ignore a letter in my opinion.
3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised.
I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it, in my opinion.
Testing for antibodies to parietal cells may also be helpful. Parietal cells provide for the production of gastric acid as well as IF. So if you lose parietal cells, you inevitably have a loss of IF, which, in turn, leads to B12 deficiency.
Dr. Gareth Davies, PhD Medical Physics, Imperial College, London, I believe, himself takes 30, 000 iu daily. Codex World’s Top 50 Innovator 2019. Independent Researcher. Lead author of “Evidence Supports a Causal Role for Vitamin D Status in COVID-19 Outcomes.” (organizing signatory)-4000 IU-10,000 IU
I’m old, unvaxed, with high vitamin D levels I did contract v. mild Omicron but have had many much worse colds and viruses in the past before discovering high dose vitamin D + K2.
I've got my test results now, B12 is 266 which i believe is borderline and folate is <2. On the results it specifically says "in the case of clinically suspected B12 deficiency treat with B12 first" but I only have folate and vitD prescribed. VitD levels 31 with lower threshold 50+ and potassium borderline at 3.8. Ferritin 46.
The B12 result although not under-range according to UK lab ranges is still on the lower side of normal. It is quite possible to have symptoms, even severe neurological symptoms, at such test levels. It may be helpful to get MMA and homocysteine tested.
It could be a good idea to write to your surgery before any appointment with all information set out such as PAS articles for professionals, as well as informing them of the family links with PA, symptoms, etc. More difficult to ignore a letter.
Below is also an article from the BMJ on Pernicious Anaemia, which your GP might find helpful to read as well as the Responses, one of which is from Dr Wilemina J. Rietsema, who has done a lot of research into PA/B12Def.
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I will do. 
Confused and not sure what to do next?
What's the next step.
Next steps/where to get active b12 test?
The next step: MMA tests day before and day after B12 injection 
