Hi, I'm hoping someone might be able to help me. My husband has been ill for past year, worse since lockdown started. He has slept 18+ hours every day, has headaches, numbness sometimes in arm and leg, blurred vision, breathlessness, chest pain. He had Hodgkins Lymphoma 16 years ago. GPs at our surgery have not been supportive or much help. We are awaiting CFS clinic referral, GPs seem to think this is a diagnosis and we should be happy with that.
He's had lots of blood tests. I asked for them to be sent to me after three months. I went through them; all within NHS range, except Serum B12, which was: 1350ng/l. I queried it with Dr, said not sure will let me know, that was three weeks ago.
I got a test from Medichecks for Active B12, result came through as
>150
pmol/L
> 37.5 R - Dr's comment: I am pleased to report you have sufficient levels of active B12.
I went back to them to question what the exact result was, but they've said the test has an upper limit of 150! So, if the active result is very high, it could mean it is serious, but, after paying, we don't know what that result is. Or am I worrying unecessarily.
I would appreciate some advice on this. I've ordered a Thyroid + vitamin test from Medichecks, which he has to do.
Thank you.
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sid3108
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Hi, thank you for replying. I’ve spoken to two different GPs and they both have said the high B12 could be something but they don’t want to put him through lots of tests. Aaarghh! It’s so frustrating, it takes 2-3 weeks to even get a phone conversation with a doctor. One of them told me to not look at the internet! I think they just think it’s cfs/me, which means they don’t have to do anything else. Told me it will be at least 8-10 weeks now until cfs clinic appointment as they’ve only just opened again. I will look at MMA.
Ask for MMA (methylmalonic acid) to be checked. My b12 was “low normal” but I had severe symptoms like not being able to walk right, walking diagonal (couldn’t walk a straight line!), pinks and needles and numbness in toes and fingers, extreme fatigue and brain fog beyond imagination! Although my b12 was “within normal range,” my Neuro checked MMA and it was like 447 or close to that (high) and those 2 tests diagnosed b12 deficiency in which I’ve been on injections ever since, with WONDERFUL improvement!!
Thank you. I got the Medichecks Active B12 test, after nhs serum test, but, result came back as >150pgmol/l. I questioned it, but they are saying the test only goes up to 150, so can't measure anything over that. So, I don't know if his active b12 is normal or high.
Sorry, I didn't reply to your message. >37R is the range for Active B12. So, their test doesn't measure over 150 and his result was over 150: >150pg/mol/l. I guess they generally test for low B12, so anything over 37 is considered okay. The fact that it could be 300pg/mol/l and indicate a problem doesn't seem to matter?
The only medication he takes is an anti-depressant, but I don't think it has any of those ingredients in. I understand high levels of B12 can indicate a serious problem, which I've asked the GP about, but she says she'd mention it to another GP and call us in two weeks. I've now booked a phlebotomist to come to take blood for another Thyroid test and I've booked a private ultrasound for his kidneys and liver. This is so distressing for my husband, he has slept most of today, keeps shivering suddenly, he's very emotional (which isn't like him), headache. It's also hard for our two young children to see. I'm not sure what else to do. Two GPs haven't given any help.
Thank you. I have permission to speak to the GP, at the moment, my husband is too weak and he would rather I spoke to her anyway. I wrote a few weeks ago, to the practice manager, to ask for a second opinion. It took me a while to pluck up the courage to do this. The next day, his GP phoned - they'd given the letter to his GP! She was okay, and she made an appointment for us to see another GP. Between them, they said they would phone once a fortnight to see how he is as there were virtually no referrals at that time. They haven't phoned once a fortnight, I've had to phone, and it can take over a week to get a call back. I'm not sure how they think it's okay for a patient to feel this way and they do nothing?
Forgot, the Medichecks Doctor said my husband had sufficient B12, so result was normal. I went back to him to query it as it just stated: >150; I asked for the exact measurement and he said it only goes up to 150! I did say, initially, that he didn't take supplements of B12.
I'm B12 deficient and inject once a week. I completed my information on medicheck and told them I inject. Did your husband say he was not taking any form of b12 on the medical form?
When I got my results from medichecks mine was over 150 but under 187, so inbetween the numbers. I too was told my levels where sufficient.
If he has had two tests and both doctors have not had cause for concern then perhaps his b12 levels are good.
Thank you so much for replying, you've all been so kind.
He has had an NHS B12 serum test, which was very high: 1350. I then got a Medichecks Active B12 test, which gave the result: >150pgmol/l.
I'm interested how you had the result over 150 but under 187, as I've queried the result twice, but been told they can only give the result as over 150 as 150 is the upper limit for the result range?
We haven't tested homocysteine. He's taking Lofepramine, changed from Fluoxetine a couple of months ago. He never had any digestive/bowel problems until last few months. He does get reflux and bowel pain after eating now.
Hello have not seen Dr yet but I have been vegetarian for many years so possibly low due to this. Had similar symptoms to your husband which have greatly improved since taking B12. I have a sore mouth and consultant has advised me to have Amalgam fillings removed they contain MERCURY which effects B12 absorbtion. I had a cracked filling for many years and am sure this has also contributed to my ill health.
Hi, thank you for your message. He is very ill now, but, he has started on a gluten free diet this week, which has made him worse; fatigue, nausea, etc. We are waiting for blood test for Medicheck Thyroid plus a private scan on liver and kidneys (I've organised); CFS clinic telephone consultation on 16th. I'm going to by-pass GPs; two of them were supposed to be looking after him, but they never phone and when I asked about high B12, they had no answers, just said his other blood tests are okay, so nothing sinister. I figure if just removing gluten from his diet has made him much worse, then it must be related to his symptoms. I removed it from his diet a few months ago; it made him much worse, so we added it back. Has to be related?
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Result of 'active B12 test'
B12 serum versus B12 active 
Active B12 test results 
Active B12 level on injections
