I have just had a telephone consultation with a GP hoping for help with the symptoms I have been experiencing. I tried to point him in the direction of the relevant guidelines for treating B12 deficiency, he said that he was familiar with the NICE CKS as he deals with B12 all the time and I m not anaemic - serum of 349 (GP test) active of 45.6 (Medicheck). I agreed with him that I am in range but only just! I also drew his attention to the neurological symptom I am really worried about and the risk factors of previous gastrointestinal surgery (appendectomy) and being hypothyroid. The suggestion was that I should continue with the supplements I am taking if they are helping. Fine, but I want to know why I am feeling poo. He has, however, offered blood tests including MMA and Intrinsic Factor, although he didn’t know what MMA was. Although he was probably right that the supplements will affect the results.
My question is - I began taking B12 spray and B Complex before I knew better so have I totally messed up my chances of a satisfactory outcome or is there something I can do to prepare for the tests?
Sorry for the rant and I will be grateful for any help and advice. TIA
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SpringerMom
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Hopefully all is not lost! It’s always possible to be “unavailable” for blood test appointments if necessary, to buy yourself some more time. I’m unsure how long B12 (non injected) lingers in the body, I’m hopeful that someone in the know will be along to advise.
Well done for persisting with your GP, persuading him to schedule those tests is a great result 👍
Thank you. If feel that I have won round one, especially with the new guidelines being published today. Hopefully that alone will bring B12d to the forefront for GPs.
Have you told the GP that you are taking B12 spray?
They should consider that you are taking supplements when interpreting your blood results. I say "should" but my experience of some expensive private blood tests was that the doctor didn't give due consideration to the influence of recent supplementation.
Maybe you could write a letter to GP explaining concerns and ask them to file a copy with your medical notes.
Tests such as MMA, homocysteine and Active B12 may help to diagnose functional B12 deficiency but the results are likely to be affected by recent supplementation with B12.
Functional B12 deficiency is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.
"he said that he was familiar with the NICE CKS as he deals with B12 all the time and I m not anaemic - serum of 349 (GP test) active of 45.6 (Medicheck)."
The document he's referring to is "NICE CKS Anaemia - B12 and Folate deficiency". It states that symptoms of B12 deficiency can occur without anaemia. You could search online for this document, find the relevant quote and put it in a letter to GP or show it to your GP.
"Some of these symptoms can also happen in people who have a vitamin B12 or folate deficiency but have not developed anaemia."(section on Symptoms)
"Although it's uncommon, vitamin B12 or folate deficiency (with or without anaemia) can lead to complications, particularly if you have been deficient in vitamin B12 or folate for some time." (section on Complications)
NICE publish a new B12 deficiency guideline today (6th March)
I recommend you read it thoroughly and make sure your GP knows about it.
There could be some useful quotes you could take from it and include in a letter or to show to GP.
ICBs in England and Health Boards in Wales/Scotland are very likely to review and maybe change their current local B12 deficiency guidelines in next few months due to new NICE guideline so keep an eye on your local guidelines.
There will also be articles in medical press about this new B12 deficiency guideline.
Thanks a bunch for posting the link to the NICE guidelines document that was published today. I'm over on the other side of "the pond", in the Boston area, but the basic information is still valuable to me as I try to figure out next steps.
Thank you for your help Sleepbunny, it is greatly appreciated. Yes, I did tell him that I had been supplementing since November, I also commented that I had felt much better on this but when I stopped for a couple of weeks for the private test signs and symptoms began to return. To which he commented that if I felt ok with the supplements I should continue… but I want to find out why I have symptoms! He did say that the results may be skewed but quite understood if I didn’t feel I wanted to stop prior to the tests. I did also mention the new NICE guidelines published today so hopefully he will read them. Thankfully the guidelines are seeming to be followed and a MMA test has been arranged, along with TFT, liver function tests, folate etc and another B12 test. Although I am not due another folate test for a couple of months following prescribed 5mg folic acid. I will stop the supplements for a couple of weeks to see what happens and hopefully it’ll help the results.
hello SpringerMom, I believe B12 supplements can falsely raise B12 levels, and that the advice is to avoid for two weeks before the test. Hopefully, someone will confirm this.
Though a different test, a private blood test for Thyroid said to avoid B12 supplements for two weeks.
The nhs test is for total B12 serum is not specific ie unused and active. Active is used by the body at cellular level and your reading is 'low'; a reading below 70 is considered to be low. (I've read this on H.U. Thyroid forum).
Explain to your doctor re. supplements; that your real active B12 is quite low; that drs should put clinical symptoms first, list them. He may think he is familiar with B12D.
Experts say that under 500 the brain starts to shrink (Prof. D Smith, Oxford University); later researchers have noted that 400 is B12 deficiency state.
Yes, I know. I do too, and 'see cartoon scenes' in my head. Perhaps we should just accept we are geniuses, or as SpringerMom says I now have an 'excuse for random behaviour' 😇😵💫
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PLEASE HELP WITH SUSPECTED B12 FUNCTIONAL DEFICIENCY
Help deciphering blood results please!
Testing coming up
Please could I have some help with sourcing supplies for self injection?
