High B12 serum, Medichecks result act... - Pernicious Anaemi...

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High B12 serum, Medichecks result active confusing.

sid3108 profile image

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.

28 Replies

Surely if your husband is so poorly not on b12 supplements or injections the high level should be investigated by his doctor??

I would get in touch with his doctor .

CFS is a symptom of your body not working right .

I've been told I have that.

I dont treat it as a illness but a symptom.

The underlying cause to be found.

Sorry I csnt be more helpful.

Hope you get some answers

If you look through some posts . MMA blood test is also used . Did he have that ? Its possible to have false highs .

Your doctor should've got back to you as promised.

Chase it . Write if you cant get through.

People without access face to face are getting more ill as you describe.

Doctors still have a duty of care but you must be persistent.

sid3108 profile image
sid3108 in reply to Nackapan

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.

Thanks again.

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 for your help. I will ask about MMA. The high b12 is worrying.

Has he been taking any vitamin supplements over the last year?

sid3108 profile image
sid3108 in reply to fbirder

Hi, thank you for replying. No, he hasn't taken any supplements except Magnesium about six months ago.

Hi,

High levels of b12 if not on B12 supplements/injections should be a cause for concern especially with a complex medical history.

Link about serum B12 and Folate tests

labtestsonline.org.uk/tests...

Have you considered putting your concerns in a polite letter to GP?

Do you think his symptoms are consistent with those of B12 deficiency?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

It is possible to have Functional B12 Deficiency, where there is plenty of b12 in the blood but it's not getting to where it's needed in the cells.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US)

b12awareness.org/

B12d.org

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

I am not medically trained.

sid3108 profile image
sid3108 in reply to Sleepybunny

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.

Sleepybunny profile image
Sleepybunny in reply to sid3108

Hi,

Have you discussed this with Medichecks?

I assume their tests are overseen by a doctor so was there any comment from them when you got the test back?

The test result was given as >150pg/mol/L .

My understanding (I'm not medically trained) is that this means the test result was over their upper limit of 150 pgmol/L so high.

Is he on any supplements of any kind or was he in the past few months?

If he is on or was on any supplements, have you checked the list of ingredients carefully to see whether any of them have any form of B12 in them?

Look for these names

cyanocobalamin

methylcobalamin

hydroxycobalamin

adenosylcobalamin

"> 37.5 R"

What did the 37.3R refer to?

Article which mentions Functional B12 deficiency

It's a scientific article and may have details that could be upsetting.

academic.oup.com/qjmed/arti...

sid3108 profile image
sid3108 in reply to Sleepybunny

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.

Sleepybunny profile image
Sleepybunny in reply to sid3108

Might be worth your husband (or you with his permission) writing a letter to GP explaining concerns.

If you want to act on behalf of your husband you may need his signed written permission or GPs may not talk to you.

sid3108 profile image
sid3108 in reply to Sleepybunny

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?

Sleepybunny profile image
Sleepybunny in reply to sid3108

Hi,

What about contacting the specialist he saw years ago, explaining his present issues, if person is still practising ?

They may not write back though, as I'm assuming your husband is no longer a patient.

Are you in a position to consider a private referral?

sid3108 profile image
sid3108 in reply to sid3108

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 don't think you're worrying unnecessarily.

I think it is criminal that they aren't investigating any further if your husband is not supplementing with b12. And because of his ongoing symptoms.

I would not back down.

sid3108 profile image
sid3108 in reply to Litatamon

Thank you, can't believe you have to fight to find what's wrong.

When I contacted his GP, she said it can't be anything bad as his other blood tests would have shown something, ie, blood cell counts, liver function.

I'm not sure if my comment will help.

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.

Just a thought and my share.

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?

What about homocystein status?

What antidepressant is he taking?

Does he suffer from irritable bowel syndrom?

sid3108 profile image
sid3108 in reply to harapara1

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.

sid3108 profile image
sid3108 in reply to MagnumPI

Thank you, it's interesting about the fillings. Will try to sort an appointment when we can.

MagnumPI profile image
MagnumPI in reply to sid3108

If you do have fillings removed they have to be removed by holistic dentist. Hope this helps!

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?

Thank you. Can I ask where you would get an MMA Test done?

Thank you!

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