Hi everyone these are my latest blood results I had done privately in March.Each time I go to my GP with an issue she says it’s anxiety and my bloods are within the guidelines.She won’t look at any of my private blood tests I have once a year even though in the past I’ve had low b12 on and off for years and just told to take b12 supplements for eight weeks and that should do the trick.Ive had loads of symptoms loads of symptoms over the years that have gradually got worse pins and needles,numbness,can’t seem to walk in a straight line,muscle and bone aches,pains in shins and calf’s,strange feelings in head,tinnitus,cold hands and feet,weakness in arms and legs the list goes on.
Here are my latest once a year private results any advice would be appreciated please.
Active B12 - 55(37.5-187.5) Folate 12(7-35). Vitamin D 73(50-250). Report said my b12 was in lower end of normal.
Ferritin 82(30-332). Transferring Ferritin 25(25-45). Iron 14.3(10-30) MCV 94.6(80-100) MCH32.3(27-32) Report says I have large red blood cells.
Thank you for reading this review
Sandra
Written by
Foxesdiv1
To view profiles and participate in discussions please or .
I was going to write a brief reply but got carried away. I'm not a health professional.
Please read a little bit every day over a week or two so it's not so overwhelming.
Maybe ask a supportive friend or family member to read through the info with you as some links I post may have details that could be upsetting to read.
From personal experience, I know it's possible to have severe B12 deficiency symptoms with normal range serum (total) b12.
I've also read that it's possible to have B12 deficiency symptoms with normal range Active B12.
Serum (total b12) test measures all the B12 in your blood.
B12 in the blood is of two types...
a) Active B12 which your body can use
b) Inactive B12 which your body cannot use
Blog post about being symptomatic for B12 deficiency with normal range serum (total) B12.
This 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 B12 deficiency symptoms.
MMA, homocysteine and Active B12 tests may help to diagnose functional B12 deficiency.
Your Active B12 not very far up the range so I would expect your GP to order MMA and homocysteine tests or to refer you to a specialist who can order them.
You mention many symptoms that are consistent with b12 deficiency. Has your GP got a full list of them. Make sure you include any neurological symptoms.
I used PAS list below and added extra symptoms at the bottom.
There's a lot more info I could pass on eg suggestions of UK B12 deficiency documents to read and organisations to contact if you're unhappy with treatment so keep asking questions.
All your symptoms indicate a strong likelihood that you have PA. Read those symptoms alongside your test results and their is a strong match. According to the NICE guidelines you should be treated as if you have PA on symptoms. You are also almost certainly iron deficient with raised mean corpuscular volume (MCV). With B12D your ferritin should be about 100. Your level of 82 is OK but iron has to be very depleted before there is any recognition or treatment for anaemia/ironD by which time you will feel ill.I am not medically trained, just a PA veteran.
You're right. Macrocytosis [High MCV] is a result of megaloblastic erythropoiesis, where the cells are unable to synthesise DNA effectively. Microcytosis [Low MCV] is a result of disordered haemoglobin synthesis due to lack of iron.
However' it's a case of 'it's not always that simple!'
If you're deficient in both Iron and B12 or folate, then one pays off the other, and the MCV may well be within the reference range.
If you have a problem with haemoglobin synthesis not involving iron, [Haem synthesis] but instead, inherited globin synthesis [for example Beta Thalassaemia trait] then microcytosis is always there, regardless of iron status.
That's why it's advisable to get a professional opinion on blood test results!
Firstly, your GP probably knows you better than we do, so either listen to her, or go and find another GP!
As for your B12 being in the lower end of normal, that's true of just about everyone because of the shape of the distribution. It's skewed so there is a greater proportion below the mid-point of the range [median] and that's just the way things are.
Report says you have large red cells. From the numbers you show us, you don't. Your MCV is normal. If you have a great deal of anisocytosis [variation in size] then you may have some giant red cells, of course. Did your results show an RDW? If so is that 'normal'?
I don't want to seem hyper-critical, but if your GP won't look at your results, is there much point in paying to get them done?
The bit I really don't understand is taking B12 supplements for eight weeks?
If your B12 is low (and I defer to FlipperTD on that issue), then why only take B12 supplements for eight weeks?
Taking B12 for eight weeks might have sufficient effect to get your B12 to a better level. It's probably reasonable to suggest that not taking B12 for the next eight weeks will see B12 drop again. Maybe not much, but possibly back to exactly where it was.
If eight weeks doesn't see B12 drop that far, good, but you actually need the B12 to remain at a better level for another 44 weeks after taking a B12 supplement for eight weeks. Otherwise you will be in the same place by the next 'once a year' visit. Which would appear to describe exactly what is happening.
B12 supplements tend to be fairly inexpensive. Do you have any reason not to take it on a longer term basis? Maybe literally to make up for your diet not having quite enough B12 in it.
Monitoring is obviously the big problem. Ideally, you would test frequently and see what happens by continuing at full B12 dose, and taking it every other day, etc., until you find the amount that maintains your B12 level. But given the extreme safety of B12, even this doesn't seem to argue against continuing to take some B12.
We see exactly the same issue with iron deficiency. The yoyo cases. Get prescribed an iron supplement. Looks much better and so no longer supplementing. Back a few months later with iron deficiency.
In both B12 and iron cases, the long term, month in., month out, availability of B12 and iron need to be adequate.
I think these UK B12 documents are worth searching for and reading if you have the time and energy.
They are mainly aimed at health professionals.
1) "NICE B12 deficiency guideline" - published 2024
I have reservations about this document...I think there's too much emphasis on treating B12 deficiency with high dose oral B12 as an alternative to B12 injections.
3) Try to find the local b12 deficiency guidelines that your ICB (Integrated Care Board) is using (Health Boards in Wales/Scotland).
Try searching online for "name of your ICB/Health Board B12 deficiency guideline".
If you can't find the local B12 deficiency guidelines online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
"in the past I’ve had low b12 on and off for years and just told to take b12 supplements for eight weeks"
The BNF (British National Formulary) is a book for doctors with treatment recommendations.
It suggests that people with B12 deficiency with neurological symptoms should have this treatment pattern...
A B12 loading injection every other day for as long as symptoms continue to get better then a B12 injection every 2 months
The doctor can find this info in their BNF book Chapter 9 Section 1.2
Info can also be found online ...search for "BNF hydroxocobalamin"
Have I've understood correctly....you've never had B12 injections despite repeated results showing low B12?
"pins and needles,numbness,can’t seem to walk in a straight line,muscle and bone aches,pains in shins and calf’s,strange feelings in head,tinnitus,cold hands and feet,weakness in arms and legs the list goes on"
I think you should push your GP to refer you to a neurologist as soon as possible.
Do you have any symptoms that affect your spine or the area around it?
For example....
tingling
pins and needles
numbness
cold spots
water trickling sensation
pain
electric shock sensations
insect crawling sensation (formication)
etc.
Do you have an unusual gait ( a strange way of walking)?
Dizziness, clumsiness, dropping things, bumping into things?
Proprioception problems?
I always find this a bit tricky to explain.
Proprioception is awareness of where the body is in space.
If your balance is worse when it's dark, eyes are closed or your view of surroundings is blocked then that might suggest problems with proprioception.
For example, I used to fall off the pavement or lose balance if someone walked directly towards me and blocked my view of what was ahead.
I would knock crockery off shelves when reaching for it, bump into the door frame when walking through doorways, be very unsteady if I went outside at night etc.
If you've answered yes to any of these or have other neuro symptoms, please think about making a GP appt as soon as possible and ask for a referral to a neurologist.
I used to request referrals to a specialist in a short letter to GP and included evidence that supported the request eg symptoms list, quotes from NICE guidelines/other UK health documents.
Always keep copies of letters to doctors ....they could be useful if you ever need to make a complaint.
If you can't get a GP appt, you could ring NHS 111
May also worth talking to local pharmacist. They may be able to make helpful suggestions.
In an emergency, always call 999.
The reason I asked those questions is that delayed or inadequate treatment of B12 deficiency increases the risk of developing nerve damage (neuropathy) and damage to spinal cord.
There is a spinal condition called SACD (Sub Acute Combined Degeneration of the Spinal Cord) that can develop in people with B12 deficiency whose treatment is delayed or inadequate.
I've read articles that suggest SACD can sometimes be treated successfully if found early enough and if patients are given enough B12.
Sadly, B12 deficiency is not always understood well by GPs and specialists so be prepared for this.
If you find the "NICE CKS Anaemia - B12 and Folate deficiency" document online and look in the Management section, it gives recommendations on when a person with B12 deficiency should be referred to a neurologist, haematologist and gastro-enterologist.
Consider joining and talking to PAS who might be able to suggest useful info to pass to doctors.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Blood results help please 
husbands blood results suggestive of PA?
Help deciphering blood results please!
Blood Test Results & Advice for Further Testing
