Hi all. Since my last post I have had another blood test to check my B12 levels. I saw the GP last week as I was concerned about my level from last year, which they said was fine, but I have been feeling very unwell. My level last summer was 295. I mentioned the NICE guidelines, she then looked at previous results from the past 5 years and noted that my B12 has declined on each test. From 444 to 295 over 4 years. She suggested another test which has just come back at 238. So has declined even further since last summer. The GP has advised me to buy over the counter B12 and retest in 3 months. Could you please advise on dosage and any brands you’d recommend please? I’m in the UK. (Hope my post makes sense!!).
Many thanks
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Helbo123
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Diet wise I can’t see why I would be deficient, I eat meat although not much red meat. I don’t really eat dairy as I have Hashimotos and was advised to avoid it. I don’t really like the milk alternatives.
My Vit D wasn’t tested but I’ve been told in the past I’m deficient. I try and supplement that when I remember!
My Folate this time was 4.8ug/L (3.8-26.8). Looking back that has always been on the low side.
Ferritin 61ug/L (15-150)
B12 238ng/L (197-771)
I’m sorry I don’t know what to look for regarding Iron.
I really feel like I’m hitting my head against a brick wall with the GPS. I felt so ill last year, went for blood tests, they messaged back saying everything normal, no further action. (Turned out my ferritin was 22 then and thyroid levels slightly off!). There was no call back to see what might be the problem. I keep having to push them. Despite my recent visit and them noting that my B12 has been declining, they messaged to say everything in the recent blood test is again normal and no further action needed. I’ve had to do another online consult to say ok then what is the issue? Could I have PA? I had a reply advising me to take a B12 supplement. No advice on dosage etc. and they didn’t answer my question.
I have Hashimotos and am the age for perimenopause (A number of GPs have said I don’t need HRT because I’m not 45 years old, I’m 44! I asked a GP if my symptoms could be down to perimenopause and was just told ‘may be’, and that was that). I feel like I may be need to have a complete meltdown in the Gps office for them to take me seriously, but then they’d probably prescribe me antidepressants!!
I don’t know if I should take a supplement, may be it’s down to low stomach acid? Or push the GP for further testing. Either way I will definitely be saying to the GP that if they’re saying all my levels are fine and it’s not perimenopause because I’m not 45 then what is wrong with me!
Unless you are vegan or consume very little animal product or fortified foods (eg cereals) declining levels mean you have an absorption problem. If you have an absorption problem then I would try going back to your GP and explaining the following. If your deficiency is dietary then a dose of around 20mcg a day would work. (There is a limit to how much B12 can be absorbed through the normal mechanism of around 10mcg so larger doses aren't really necessary.
In people that don't have absorption levels B12 levels are maintained at a pretty constant level by stores in the liver, but this release mechanism uses the same mechanism as you use to absorb b12 from food so it isn't effective and this leads to falling serum B12 levels and deficiency.
Where people sit in the normal range varies a lot - but it looks as if your levels were stable north of 400 and they are now about 1/2 of that. If you have any tingling in your hands or feet then you have neurological involvement and your GP should definitely start treating you now.
Just because you are in the normal range doesn't mean that you are at the point in that range that is right for you. Because individuals have constant levels in the range the normal range doesn't work in the same way as it does for metabolites that vary significantly - such as insulin and potassium - and responding to symptoms is extremely important as a result.
There are two problems with taking high dose oral (<1000mcg):
a) it doesn't work for everyone - somewhere between 30-40% of people absorb significantly under the 1% average
b) it is always going to be a very slow way of raising your B12 levels - hence the need for treatment if you have neurological symptoms before your levels fall outside the normal range.
Hi, thanks for your reply. I can’t see my diet being the problem, I’m not a vegan or vegetarian, although I don’t eat much dairy. I have hasimotos and am 44 years old (female), so many symptoms can overlap. The GPS keep telling me all my levels are fine, arghhhh!!! The b12 test was a serum one. I’m thinking maybe I should take a private test to test the available b12 and then go to the Gp with that if there’s a problem highlight there.
although the active B12 test is a bit more sensitive you may still get the same reaction from your GP (active B12 generally 1/5 of serum B12) - so the issue will still be GPs understanding of basic logic - just because most people are okay and not deficient in the normal range doesn't mean that a particular individual isn't.
Having hashimotos increases the likelihood of your having PA, or even developing another absorption problem.
Some GPs aren't very comfortable accepting results of private tests anyway.
There is another B12 test called Active B12 (holotranscobalamin).
It's possible to have functional B12 deficiency where there is plenty of b12 in the body but it's not getting to where it's needed in the cells so person develops deficiency symptoms.
MMA, homocysteine and Active B12 (holotranscobalamin) may help to diagnose functional b12 deficiency.
See blog post below about being symptomatic for B12 deficiency with an in range serum B12 result.
Thank you for your reply. I’ve just followed your link to the blog, I could have cried as it is me. I don’t have all the symptoms but feeling like the GPs aren’t listening and telling me I’m fine when I know I’m not is definately me! I’ve just replied above and mentioned I might order a private test to check the active stores.
"but feeling like the GPs aren’t listening and telling me I’m fine"
Many of us here will be able to empathise with you. I had those sort of reactions from GPs and specialists.
I was told my symptoms were functional neurological disorder (FND) /psychosomatic, MUPS (medically unexplained symptoms), hypochondria etc....
I was very angry about these diagnoses although recently I think that some symptoms might have been FND because I was put under unbearable stress trying to get a diagnosis.
I had over 50 typical symptoms of B12 deficiency when at my worst.
It's quite common for forum members to have their B12 deficiency misdiagnosed as several other conditions as the symptoms are very varied and can affect every body system.
Symptoms
Does your GP have a list of all your symptoms including any neurological symptoms?
I used PAS lists below and added extra symptoms at bottom of page.
Letter could include some of the following but keep it short.
1) Symptoms list
2) Relevant blood test results
Might be worth listing all the serum B12 results in letter.
3) Relevant family and personal medical history
( Maybe mention any family history of B12 injections, PA (Pernicious Anaemia), Coeliac disease, other gut conditions, other autoimmune conditions)
4) Quotes from UK health documents
UK B12 documents
If you have the time and energy, I think these documents are worth searching for and reading.
1) "NICE B12 deficiency guideline" - published 2024
I have reservations about this guideline as I feel there's too much emphasis on treating people with oral tablets as an alternative to B12 injections. There are some good bits.
3) Try to find the local B12 deficiency guideline used by your ICB (Integrated Care Board) in England (Health Board in Wales/Scotland).
If you can't find it online, best bet is probably to submit a FOI (Freedom of Information) request to your ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of it.
Possible consequences
Delayed or inadequate treatment of B12 deficiency increases the risk of developing neurological damage.
Oral Tablets
I could not manage on high dose oral B12 tablets (1000mcg or higher) even when I was taking 6 or more a day.
Only B12 injections keep my symptoms under control.
There have been forum members who managed just with oral tablets but I think this is a minority of forum members.
There are moves across UK to put more people on B12 tablets. I cynically feel this is due to tablets being cheaper. B12 ampoules for injection are cheap but nurses' time to give injections is expensive.
More info?
Would you like me to post links to threads where I left detailed replies with links to help those struggling to get diagnosis/treatment for B12 deficiency?
Just tell me in a reply if you'd like me to post more.
I'm not a health professional just someone who suffered for years from unrecognised and untreated B12 deficiency.
Thank you so much for taking the time to reply. I’ll work with what you’ve already given me and then if I struggle further I’ll let you know. Having you guys give me your advice has boosted my confidence on tackling the GPs. I appreciate all of your help, thanks again
Hi you are bumping along the bottom of 'normal' by UK standards, which is actually low, they start injections if you get to 180, which is damagingly low. If you were Japanese you'd be on injections.
Supplements Igennus Healthcare do a Super B12-Complex which contains the 3 most absorbed forms of B12, and doesn't contain cyanocobalamin, the one best to avoid.
They also do a Super B-Complex which contains all the B vitamins, again in the best absorbed forms, and you need those as co-factors.
Also get a DHA omega 3 fatty acid, fish or algae oil and zinc, as that's what your nerve myelin sheath needs to mend.
Vitamin D, iron and magnesium may be on your needed list too.
A diet with plenty of meat, fish, eggs, dairy, green leafy veg and nuts is best to get the above as nature intended. Cut out alcohol as it uses up your B12 and your liver will be stressed because of the deficit. There's some discussion that the keto diet is good for us, because of the genetic element to PA.
Good luck. Don't let those doctors off the hook. 🍀
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