Welcome to the forum, I hope some of the following info is useful and apologies if it isn't.
Might be worth taking a few days to sort through it so it's not so overwhelming and please bear in mind that some links may have details that could be upsetting.
In UK, if you are symptomatic for B12 deficiency, doctors should treat you even if serum (total) B12 is within normal range.
B12 in the blood can be split into Active B12 ( form of B12 that the body can use) and the rest which is forms of B12 that the body can't use.
UK GPs often use the serum (total) B12 test which measures all the B12 in the blood.
Active B12 98.6 pmol/L ( range 37.5 - 188 pmol/L)
Your result for Active B12 (also called holotranscobalamin) is close to half way along the range.
From personal experience.... it is still possible to have severe B12 deficiency symptoms with normal range results.
It is also possible to have folate deficiency symptoms with a normal range serum folate result.
I can see that your folate result is just within range
11.3 nmol/L (8.83 - 60.8 nmol/L)
Were you supplementing with B12, folic acid/folate or Vitamin D prior to these blood tests?
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
In a person who has both B12 deficiency and folate deficiency, B12 treatment should be started first. Treating folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.
Blog post about being symptomatic for B12 deficiency with a normal range serum (total) b12 result.
If you are symptomatic for B12 deficiency with normal range results, you may want to look into Functional B12 deficiency.
This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
Tests that might help to diagnose functional B12 deficiency include Active B12 (holotranscobalamin), MMA (methylmalonic acid ) and Homocysteine blood tests.
How to write letters to GPs about B12 deficiency
I think it's a good idea to put queries about treatment/diagnosis into a letter to GP as harder for them to ignore. See link below for ideas.
NICE (National Institute for Health and Care Excellence) are developing new guidelines on B12 deficiency and want people to comment on them. The new guidelines should be published in 2024.
Two useful B12 books (both mention folate deficiency)
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society). Some bits may need updating.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Local B12 deficiency guidelines
If you think you have B12 deficiency, worth trying to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.
If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some of the local B12 deficiency guidelines in UK are not helpful. See blog post below.
Many thanks xx no I haven’t been supplementing and here is the kicker xim in surgical menopause so extremely symptomatic - and as you can imagine all the symptoms are similar. However I’m on extremely high HRT which is now making me question some of the symptoms. And I feel it’s best to optimise everything now xxx
You most likely don't need to worry about your mthfr variant. This a link to what 23 and Me says about the hype surrounding this issue. blog.23andme.com/articles/o...
It is unlikely that an MTHFR would mean you would need methyl B12 - the gene codes the methylation of folate, not B12.
B12 is used in the process that resets neurotransmitters, and this seems to kick back in quite quickly when the deficiency is corrected. Nerve damage due to demylination takes much longer to heal.
People report different responses to methylated B12 - for some it seems to result in increased anxiety.
Sorry for the book to follow. I just felt you might could use some information.
Well, first off, I'm in the U.S. and let me say I am any kind of expert on any of this. Last year after a lab test, my folate was low. I began having severe symptoms of what I now know was vitamin B12 deficiency. My GP prescribed folate tablets. I took them for 3 months daily, but I began to get worse, much worse. Then one day I could not catch my breath and eventually passed out. When I woke up, my wife was using a cold rag on my head. Then I began to cry, and I mean I cried as though someone close had just passed away. I could not stop crying. My wife called 911 and paramedics came out, took my blood pressure, etc. and then pointed to his head and said "It's all up here".
That's when I knew something was seriously wrong with me. So I ordered a few books (see below) and began to research on the internet. I started B12 injections in December of 2022, but it is so important to catch a B12 deficiency early (none of our Dr.s did (my wife is B12 def as well). We both have been misdiagnosed several times each and my wife was hospitalized (nearly died) from taking methotrexate for 1.5 years because she had Sjogren's disease, a rare condition that for one thing causes one not to be able to make saliva or tears.
Well, come to find out, guess what else causes those same symptoms, yep, vitamin B12 deficiency. She never has Sjogren's disease at all. Buy both of us have been B12 def. for years until the past 1.5 years or so it finally became so severe that all kinds of symptoms started manifesting in us. I had what we named "the knife" because one day my wife said it feels like Jack the Ripper just stuck his knife in my back and ripped it all the way down my leg. That's how bad the nerve (sciatic-like) pain shoots through your body. My wife still has the pain and swears if she has to suffer the rest of her life, she'll have her leg amputated.
Anyway, I also have had the same kind of pain, but mine has moved on now to my shoulders and arms, and hands. However, for me, I have experienced more mental issues, and even though both of us have experienced mental issues, my mental symptoms have been worse. Now both my wife and I have always been very easygoing and laid-back sort of people, but about three months ago we were arguing all the time. Since then we have started having B12 shots more regularly (every other day for about a month and now we are much better. Not to mean we are just fine because we are still suffering from this horrible B12 nightmare.
For me, I recently had a test for IF antibodies (that's intrinsic factor antibodies), (look them up). We all need the intrinsic factor to absorb B12, so I tested positive for the IF antibodies, which means they are blocking the intrinsic factor from binding with the B12 so I cannot absorb B12 like anyone else. Therefore, I have pernicious anemia. The IF antibodies mean the IF antibodies attack my own body, so therefore it's an Immune disorder. So I have B12 deficiency and Pernicious Anemia, for now, my wife just has B12 deficiency. She's also going to have the IF test before long.
Now, we both have all or most of the B12 symptoms, but here's a bit of what I've learned: you should not take folate without B12. Lab values from lab tests are way out of whack, like if the range let's say is 300-900, and if you fall within that range you are OK. No, you're not, in the U.S. I was 308 and was losing my mind and could not breath. So, the doctors didn't know anything, so I will end this before I write a real book, but here's a book by Sally Pacholok, called Could it be B12, check it out. Also there was a 2015 movie made about her and Vit B12, it is truly worth watching and talks about how ridiculous doctors are.
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