Hello, I'm new here and have found this forum incredibly helpful.
After increasing fatigue, brain fog, headaches, pain / numbness in my legs and even depression & anxiety, my GP ran a number of blood tests. Some deficiency of B12 showed up but, despite neurological symptoms, I was only prescribed the standard 6 injections over 2 weeks and then 2 subsequent injections, three months apart (the second of which is due at the beginning of July).
However, this has resulted in no perceptible change to my symptoms so far.
When I went back to my GP, he said we should rule out B12 deficiency as the cause, since the low reading from my blood test wasn't "drastically" low. Out of desperation with worsening symptoms, I started using sublingual B12 drops two weeks ago and have already started to feel some benefits (though my damaged nerves now seem to be going into overdrive with painful cramping at night).
I have recently learned about tests that can determine 'active B12' and perhaps this is a way to persuade my GP that I do have a problem and get treated accordingly. However, will the fact that I'm taking an oral supplement skew the result of this test? If I have to stop taking the supplement for an accurate test, how long should I stop for before taking the 'active B12' test?
If anyone has any advice, I'd be very grateful.
Thank you!
Written by
tim074
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Active B12 (also known as Holotranscobalamin/HoloTC) results are likely to be affected by recent B12 supplementation.
I'm going to post a lot of info below which you may find helpful.
Some links may have details that could be upsetting.
I suggest you take at least a week to sift through it so it's not so overwhelming.
I'm in UK and suffered for many years from unrecognised B12 deficiency with many neuro symptoms.
B12 deficiency is not always as well understood as it should be by health professionals.
Have you got recent results for folate, ferritin or other iron tests and Vitamin D. Forum members often report deficiencies in these. Full Blood Count results might also be useful.
UK guidelines indicate that people who are symptomatic for B12 deficiency should be treated even if serum (total) B12 is within range.
Has your GP got a list of all your symptoms, including any neuro symptoms and definitely any affecting spinal area?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Other causes that might be worth you and GP investigating include
H Pylori infection
Internal parasites eg fish tapeworm
Exposure to nitrous oxide
Some medicines/drugs have been associated with low B12 in some studies eg metformin, a diabetes drug, PPI drugs, some anti-epileptic drugs etc.
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.
It's possible in some cases to have symptoms of B12 deficiency with a serum (total) B12 result that is well within range and sometimes when it's above range.
"but, despite neurological symptoms, I was only prescribed the standard 6 injections over 2 weeks and then 2 subsequent injections, three months apart"
Vital that B12 deficiency is treated adequately.
Inadequate treatment increases the risk of developing permanent neurological damage.
My understanding of UK B12 documents eg BSH guidelines is that B12 deficiency with neuro symptoms should be treated with B12 injections even if the cause is diet.
There are moves across UK to put more patients onto high dose oral cyanocobalamin, 1000mcg as an alternative to B12 injections.
Some forum members manage their condition with high dose oral B12 but it didn't work for me and some others on the forum.
Although in UK, moving patients onto high dose oral B12 is sometimes promoted as easier for the patients, my cynical mind suspects a mainly financial motive.
"prescribed the standard 6 injections over 2 weeks and then 2 subsequent injections, three months apart"
BNF link below outlines two patterns of B12 treatment recommended in UK
1) for those without neuro symptoms
2) for those WITH neuro symptoms
The pattern of treatment you describe is closest to the pattern for those without neuro symptoms.
Both patterns allow for maintenance injections every 2 months.
My understanding is that with neuro symptoms present, you should be on the pattern for those with "neurological impairment".
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).
Referrals
Have you been referred to
1) a neurologist?
2) a haematologist?
3) a gastro enterologist if gut symptoms present?
NICE CKS (Clinical Knowledge Summary) - when to refer B12 deficient patient to haematologist/gastro-enterologist
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum
1) try a search of forum posts using terms "local guidelines"
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
If you want to know why I urge UK forum members to find out their local guidelines, see blog post below.....
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg more on causes /symptoms, more B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Thank you Sleepybunny for taking the time to provide such a detailed list of resources. I've come across some of them but by no means all of them. Much appreciated.
A test for methylmalonic acid MMA, and/or homocysteine will determine if the B12 is getting into your cells where it needs to be. A B12 test while you are supplementing is a waster of time and money and many doctors don't realize it tells nothing about your B12 activity other than you have it in your blood, not necessarily in your cells where it can actually help.
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