I am quite new here please can someone advise if I should be concerned that my B12 levels which too high according to my Dr and also Medichecks which tell me there 150. Both my Dr and Medichecks have said stop supplements but I don’t take any. I have however just bought some thorn active B plus and took one yesterday for the first time and found they really helped my energy levels but now worried as they have B12 in them. I have hashi and I’m on levo thyroxine I also have m.e. (25 years) I was looking forward to taking the B plus vitamins to improve my health but now I’m concerned about my B12 Being high. I have suffered internal vibrations for many years also tingling in my head and face at times also I get electric shock type pain in my feet and sometimes also in my head. Please can you tell me if I should be concerned about my B12 levels I googled it but couldn’t find much about it. Would Really appreciate any help you can give me thank you
High B12 levels not supplementing ple... - Pernicious Anaemi...
High B12 levels not supplementing please can someone help advice
I wouldn't worry about high B12, you cannot overdose.You said that you took one thorn B Plus and felt better !
I know what I would do, keep on taking them !
If you felt better it is obvious they are do you some good.
Hope you continue to improve
Hi there
What were the levels your Dr stated? And the levels from Medichecks?
Also - do you have a print out of your blood test scores? These will have ranges attached to them and will help to see whether the Doctor is correct or maybe talking out of his wotsit.
I will find them for you thank you pickle500
Dear pickle500 the Medichecks range they use is 37.5 - 150 I’m looking for my print out from my Drs but I’m sure they use the same range as Medichecks the thing is my dr told me to stop supplements a year ago ( I wasn’t taking any) so it seems it’s been this high at 150 or over for a long time and I’m trying to find out if I should be concerned and if I should take my B supplements I’ve recently bought appreciate any help thank you
Fair enough, not to worry.
So you haven't been taking any B12 before the tests, but still got high levels? It's possible you have a functional b12 deficiency in that case.
When did you last take any supplements? Or have you not taken any at all?
No B supplements before test at all even last year when the dr told me B12 was high I wasn’t supplementing at all, I started the thorn b supplements yesterday and felt better so would like to continue but now Medichecks have also told me my B12 is high I’m not sure what to do
Think you need to go back to the Dr and ask to be tested for functional B12 deficiency.
If you haven't been taking supplements and you told your Doctor you haven't been taking supplements, the Dr is potentially negligent in not investigating further.
Patients shouldn't have abnormally high B12 without an explanation for it.
I will mention it to my Dr thank you, I thought if I had high levels I wasn’t deficient But will tell her about it. Do you think I should stop my B supplements?
Does the Medichecks look at your Active B12? Or Serum B12?
How do they test for functional B12 deficiency? I had elevated B12 having never taken B12 supps & not a diet rich diet for few years. But that all changed as soon as I started Thyroid meds.
I think there are several assessments including MMA and homocysteine levels. Not that it matters really. Very few Doctors would even consider it.
If your homocysteine levels are exceptionally high then it could indicate a functional deficiency in b12. Because if the b12 was in reality that high, your homocysteine wouldn't be.
Im no medic or scientist. But perhaps your T meds lowered your homocysteine
I had high B12 long before I started thyroid meds. I’m not going to get answers from my dr so I shall just keep an eye on it it’s so complicated isn’t it
It is. But I still think you should ask for a B12 blood test, which is the serum test. That will give a better benchmark to work from, since Active b12 is harder to assess without a 'full b12 panel' and also there could be several different reasons why your active B12 is high.
Most people don't have a high serum B12 unless they've taken alot of supplements or injections. So I'd recommended getting that and then seeing how high it really is in your blood
Hi Pickle 500. Grateful to understand what you mean about Active B12 being more difficult to assess without the full B12? I’ve not heard of a a full B12 panel, what does that consist of please? You also say Active B12 is more difficult to assess & that B12 would be a better benchmark.
It's in relation to Timetraveler67's situation as they've mentioned that they've had a medichecks Active B12 result. And that's obviously different from a Serum b12 which measures total B12 levels in the blood - so it can include active b12. But it will also include the B12 in the blood, reflecting the 'total amount of b12'.
Active b12 only tells us what's in the cells. So if that's high or higher than the reference ranges, it might suggest that there is no deficiency. And that someone has plenty if not more of B12 in their cells. So it would be easier to make sense of that Active B12 result if we have a serum b12 result too.
it may be that it won't make as much sense now because it's some time after.
perhaps you can post a separate topic with the details of your situation as it may be easier then to see what the situation is your facing particularly.
Thanks for that Pickle. But does Active B12 blood result actually reflect what B12 has been utilised at cellular level. Or, as is my understanding, is the biologically active fraction that is available for cellular uptake? As there is a difference isn’t there. And as the Active B12 is was really matters, I still can’t see the need for a Total B12 test along side it?
In this instance, the Dr has asked timetraveler67 to stop taking supplements since their B12 levels are too high. But timetraveler67 says they have not taken any suppements.
Their 'active' b12 is high from a private medichecks result. Yet the Dr is saying it is too high. So where is the Dr getting this from? How do they know it is too high? They need to run a Serum b12 as standard. Or are they just looking at the Medichecks high Active B12 and making an assumption that supplements are being taken?
So how can we find out if a patient is taking high doses of supplements? With a serum b12.
I can see your point but we're not talking generalisms here, we want to get to the bottom of timetraveler67's issue of high B12
Hi, no, I’m just trying to understand the topic. The Active B12 comes naturally with a reference range & if it’s high in range then that is what the Dr is commenting on. Following on from that result being high, surely he would/should be enquiring about use of supplements or not & diet with the patient. And as I believe mentioned above, from there a decision whether to run a homocysteine or MMA test. I just haven’t read that running a total B12 test as you mention, could prove useful. There is a profile you fill in on Medichecks where patient can give reason for test & whether they are taking supplements, so Doctor’s comments/advice can take that info into account.
I prefer not to make any assumptions when I'm trying to help others. Sometimes there is a bigger picture or story behind it, and checking serum b12 alongside other blood levels may be a worthwhile endeavour for the Doctor to understand what is going on.
For a GP to say 'stop taking supplements' by just looking at a private test, and the patient telling them they're not taking supplements and for it to go nowhere isn't acceptable. The GP needs to do follow up tests.
Asking for a Serum B12 test from the Dr is a simple thing to do. They will check b12, folate, ferritin, Complete Bloods. This may then reveal more. There is no one single test that determines B12 deficiciency, but of course a low blood level of B12 could. And since the active B12 is high but this person still has symptoms I woud be curious to know what the B12 blood serum levels are aswell.
I've taken my advice as far as I can go on this. If you want help for your situation it would be better to post a separate post for you.
Hi it looks at active B12
If your active b12 is high at 150 then it seem unlikely that b12 is the issue.
You can ask the GP for a serum b12 (total blood levels) and if they are too high then theres an issue. If theyre normal then the problem isn't b12 deficiency
That’s very helpful I have made a note of what to say to my gp When I next see her thank you again
I had a blood test back in 2019 which showed a high B12 level of 1235 which was described rather dramatically as ABNORMAL. When I queried this with the Doctor he seemed uncertain what it might mean. So he wrote to my local hospital and was informed that they did not think it was any cause for concern. Of course I was concerned by it, but I think the truth is that not enough research has been done to give a definitive answer.
Thank you for your reply I agree with you I don’t think they know, but I wonder who set the guidelines in the ranges? It all seems confusing I mean if we’re not supplementing and it’s over range what would the cause Be for it I wonder, thanks again for replying to me
From what Gambit62 said, the normal range is a statistical range probably based on collecting thousands of B12 blood tests and finding the mean range or range of average scores. Its interesting that you mentioned having IBS as I was also diagnosed with this in 2009. When I say diagnosed, it was a specialist saying we've ruled out most other issues, so its most likely you have IBS , which is really an umbrella term for various forms of intestinal complaints, most of which cannot be or are difficult to identify.
Recent thinking suggests that IBS is more to do with emotional stressors and that the intestines(basically smooth muscle) react to emotional stressors like anxiety, anger and other negative emotions through tension/contraction /spasm causing pain and discomfort. These muscles are not under our conscious control. This takes it outside of the scope of the medical world and into the realms of psychotherapy and a better understanding of how your feelings and emotions can affect you physically.
I think I have also come to a better understanding of my IBS diagnosis, through taking up the fodmaps diet. Certain foods like cabbage , beans, especially chickpeas have an outer skin layer that is very hard to break down in the gut. There are also certain carbohydrates foods that can really upset the intestines. By a process of elimination these foods can be removed from the diet. They can also be reintroduced at a later date, and if they are tolerated then you can eat them again , but not on a too regular basis. Other foods when reintroduced may still have a bad reaction in the gut, and so must be permanently removed. you can find info on the fodmap diet online.
I have also discovered that taking digestive enzymes particularly the ones that break down fatty oily foods reduces intestinal spasms. The fact that I cannot properly digest fats, suggests a gall bladder/liver issue, but this has not been confirmed by various blood tests .I tend to steam cook meat to reduce the fat content. On the other hand high B12 levels in the blood suggests that B12 is being absorbed okay.
Gambit62 also points out that high B12 levels could be related to a genetic variant that has a slight problem processing B12, so you need higher levels to compensate.
Another consideration is that the Liver stores B12, and releases it when required. Sometimes the Liver can be releasing too much B12 , so you might wan to consider asking your doctor for a Liver function test.
Your spot on I agree certain foods and stress aggravate my ibs it started when I was around 6 years old I think fear did a lot of damage and I carried it in my stomach, also certain foods trigger it off too. I will definitely look at the chart you mention also my liver function test was normal but I’ve been given a few pointers and I’m very grateful to you and the others for taking time to reply to me
Timetraveler67 - it may be that you have a specific genetic variant that is associated with problems processing B12 so need very high levels of B12 and the reason why your serum B12 levels are high is because of that. 'Normal range' is a statistical term and there will always be people who are outliers. If your levels are constantly high then you would not appear to have an absorption problem but it could still be that your genetics means that you need to have very high serum B12 levels to function. If the supplements are helping then continue with them.This article discusses some of the variants
ncbi.nlm.nih.gov/pmc/articl...
Please note genetics is off topic for this forum.
If you want to pursue this further I would suggest you try to find a genetic counsellor to support you.
Thank you so much the information you provided is very helpful I appreciate it
Hi there,
I had high ferritin and B12 a few months ago. My GP put it down to me being on an 800 a day calorie diet. Liver enzymes were high too. Liver was under a bit of strain, he said. I stopped dieting, retested and all back to normal now. Could a Liver function test be worth asking for in your case?
That’s interesting because Although I haven’t lost weight because of stomach problems which I’m told is ibs , some days I worry I eat enough. I had a liver function test along with the routine blood test a few months ago and it didn’t flag up anything except the high B12. I’m glad you found out what was causing your high levels and thank you for replying to me
An answer to me from this site, when my results came back as abnormal high was that there were others with the same problem. The blood tests are are testing the amount of B12/active B12 in your blood not your cells. It could be possible that you have a problem with B12 getting into your cells which would leave a high level in your blood. Someone with a similar problem said that the best resolution was to take high levels of B12 with the hope that with a high absorption into blood that some would get in to my cells. As it seems impossible to get answers or help from any haemotologist or referral to, with a high level of serum B12 I just worked on symptoms rather than tests and I take a sublingual B12 of 5000 mcg combination of methyl and adenosyl forms every other day or so. If you get any answers from GP/haemotologist please feed back
That is so helpful thank you, kinda makes sense as well I’ve just started taking a B complex and was going to stop as I was worried it would push my B12 even higher but because of what you wrote and because it makes sense to me I will continue taking them, they really help me feel better I’ve had more energy last couple of days Thank you For replying to me
Hi, we can only try and puzzle it out. Incase you are interested, I buy Seeking Health brand from the Amrita website or amazon. Take care
Did you have a homocysteine or MMA test Lynne, which seem to be recommended to help identify an issue ?
Sorry, have only just seen your question. I am supposed to have annual blood test re Rheumatoid Arthritis. Gone by the board a bit re the pandemic so haven't been for a while. But I always ask GP for what I see important blood levels. One being homocysteine. It is available on the NHS although my friend's GP say it is not. I have had taken for years. You have to get the level down to well below 10 - shows what the doctors know! ideal to be 6 or poss 7 or expect trouble in the future. My first test was 9 , from what I had learned - not good. I managed to get down to 8 by the following year. Mainly by supplements and B12. I really need to resume my blood tests. You have to have blood drawn at a hospital that can process the test and needs to get to the labs within the hour from drawing and your blood sample not go on a tour of the city before reaching the hospital if taken at the GP's
Hi Timetraveler67, If you haven't taken any B12 supplements do you know if you've had a kidney function test as I've read somewhere that reduced kidney function can result in elevated B12 levels.
Hi yes, I had a kidney function test a few months ago and nothing was flagged up on the print out I got from the surgery the only thing that was flagged up was the high B12 then my Dr told me to stop supplements but I wasn’t taking any. Then I recently got a Medichecks Drs report saying same thing so it’s really a mystery
One of the most common reasons for high b12 in the absence of supplementation is liver disease. Have you had your liver enzymes checked or an upper abdominal ultrasound?
I forgot to add that other autoimmune diseases can cause elevated b12. Have you had an autoimmune blood panel done? I’m specifically thinking of lupus here which can cause high b12.
Thank you Littlelodge123 I used to wonder sometimes if I had lupus as I would get the rash on my chest and similar lupus symptoms but was told I have m.e. Cfs and fibro. I had an Abdomen ultrasound Last year which showed gallstones also had liver function blood test Which was normal but not had an autoimmune blood test
Ask for an ANA blood test. The rash is an indication that it may be lupus snd as I say high b12 . Lupus affects all organs snd may indicate why your liver is not processing b12. I personally would follow that line of enquiry first. I would also be asking for an MRCP as ultrasound not specific enough.
Thank you I will ask my Dr for the tests you said I’m worried she’ll say no but I’ll ask anyway thanks again
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