High b12 news: Folliwing previous... - Pernicious Anaemi...

Pernicious Anaemia Society
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High b12 news

Irismay
Irismay

Folliwing previous posts of mine, very briefly, my gp stopped b12 injections because my level was high & it actually remained high >1500 for over 2 years. I started showing symptoms of deficiency & gp decided it could be a functional issue so restarted the injections 6 months ago. I've been feeling very Ill with gastric problems & dramatic weight loss over past couple of months & I'm seeing gastro next week. I've just read this scary story & wondered if I should carry on with my injections (3rd one due tomorrow). I'm worried now that I'm making myself ill & overdosing on b12. I thought you peed out any excess? I'm so confused, can anyone help? I'm a member of PAS. I'm sorry if the link doesn't show up - I'm rubbish with technology & it's all trial & error. Any guidance would be much appreciated. Thank you

www-insider-com.cdn.ampproj...

74 Replies
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I'm sure there more deaths without it.

Pernicious . People died without treatment.

Hope you get some answers from gastro appt

Irismay
Irismay
in reply to Nackapan

Thanks Nackapan. I've never been diagnosed with PA I was just told about 10 years ago that my level was low & 3 monthly injections started. Now I'm worried I dont really need them & its doing more harm than good.

Thrones
Thrones
in reply to Irismay

As far as I’m aware ,I’m new to all this sorry,but your b12 levels are going to be high if he’s testing your blood while your supplementing with injections,I’d have thought it best if you got retested while your off the injections to get a truer picture of your levels then you could decide your next move armed with that information couldn’t you.

Hopefully someone will be along to put your mind at rest as I said I’m very new to all this and just learning this last couple of days,good luck x

Irismay
Irismay
in reply to Thrones

Thank you Thrones. Yes my b12 injections were stopped approx 2 years ago by my gp who told me they were phasing the injections out. I didnt argue at the time because I was a bit ignorant of the facts having not had a diagnosis of PA or anything else. 2 years down the line I was having vague deficiency symptoms so they retested me & my level was above 1500 after a 2 year break! They decided I might have a functional deficiency so started the injections again 6 months ago. Since then I've become unwell & I was a bit concerned having read the article printed yesterday that i might be overdosing on b12 & doing myself harm & that might be the reason i am unwell. It's all so confusing!

Thank you for replying & i wish you well x

Thrones
Thrones
in reply to Irismay

Sorry I couldn’t help irismay I can understand your confusion could you not phone the PAS and ask for some guidance and reassurance,you may still catch them if you call now,I’m sure somene more knowledgeable will come along to help.

I’ve noticed over the years that every so often something comes to our attention to discredit our vitamin consumption or a scary story about using herbs etc and I have to be honest unless it’s proven without a shadow of a doubt I’ll take it with a pinch of salt.

I hope you get some guidance soon take care x

Irismay
Irismay
in reply to Thrones

Yes i think I will make contact with PAS. I have spoken with them once before but understandably I think they mainly focus on deficiency. To have a high b12 becomes a bit more hazy & I think requires a thorough workup by a gp (but in my experience the medical sector dont seem to be overly concerned about high levels).

You are correct in that some of these reports should be taken with a pinch of salt. I hope this is one of them!

Best wishes x

Nackapan
Nackapan
in reply to Irismay

I've never been diagnosed with PA either

I don't absorbt tablets and have been very ill

Only thing thars helped me is b12 I jections

Go by your symptoms

Or if you want to have a break do.

Yes it's important to rule out anythin g else too.

Do you absorb tablets?

Are tour bloods okay. Ferritin folate ect ?

High levels of b12 in your blood is not dangerous.

Loads of li is on here.

I got scared once when a neurologist said too much was toxic.

Nackapan
Nackapan
in reply to Irismay

I've read tour reply to thrones. Was that high result after 2 years OFF b12 injections or supplements ?

If so your doctor will investigate or refer you to a specialist

Are you having symptoms?

Hipe toy get answers soon from specialists or from your phone cal toPAS

Irismay
Irismay
in reply to Nackapan

Sorry you've been so Ill Nackapan. I'm awful at taking tablets, everything upsets me, antibios, NSAIDs etc. The only pills I can take are paracetamol & they work quite well so I guess I am absorbing stuff.

My last thyroid test a year ago was serum TSH level of 2.10 mlU/L (0.3 -5) within range.

Serum b12 1300ng/1 (200-960) that was after being off b12 injections & no supplements for 2 years. I am not a great meat eater - fish or chicken once/twice a week.

Serum ferritin 46ng/mg (20-350)

Serum folate 6.6 (3 -18)

So all within range apart from b12.

Thank you for your help & advice.

Best wishes

Nackapan
Nackapan
in reply to Irismay

Take care

Irismay
Irismay
in reply to Nackapan

You too - thank you.

Sleepybunny
Sleepybunny
in reply to Irismay

Your folate is within range but it's in the bottom half of the range.

Your ferritin is not that far up the range either.

Perhaps you could discuss with the GP whether you would benefit from taking low dose iron and folate supplements?

There are other iron tests a GP can do besides ferritin test. See link below.

Iron Studies

labtestsonline.org.uk/tests...

"last thyroid test a year ago was serum TSH level of 2.10 mlU/L (0.3 -5) within range"

UK GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests that GP can order. Some of these tests are available privately if GP doesn't want to order them.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

I suggest you put any thyroid results on Thyroid UK forum on HU.

Have you got a copy of your most recent Full Blood Count FBC tests?

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

I am not medically trained.

Irismay
Irismay
in reply to Sleepybunny

Thank you sleepy bunny, you have been very helpful. I will take time out to read your post thoroughly. I havent had any recent blood tests, maybe I will get some done when I see the gastro. I meant to get some thyroid tests done ages ago privately but I had many sudden family expenses to deal with & they took priority. My daughter & my beloved late mum both have hypothyroidism so there's a chance I may have a problem there unless it skipped a generation!

Many thanks as always

Best wishes

Irismay
Irismay
in reply to Sleepybunny

Ps. If I do have the thyroid tests done privately and they prove to be out of range do you know if the gp would treat me based on the results or do they have to stick within NHS guidelines? Thsnk you

Sleepybunny
Sleepybunny
in reply to Irismay

Hi,

I think it's quite likely that they would not accept the private results but if the private results showed something out of range or thyroid antibodies present, I think it's likely that you could persuade your NHS GP to repeat the same tests on NHS or you could ask to be referred to an NHS endocrinologist.

Suggest you post on Thyroid UK forum.

Irismay
Irismay
in reply to Sleepybunny

Thanks Sleepybunny, I have ordered a full thyroid check so see what comes of that.

Sleepybunny
Sleepybunny
in reply to Irismay

When the tests are done can influence the results, suggest you post on Thyroid UK forum and ask about best time of day to have them done.

Irismay
Irismay
in reply to Sleepybunny

Wonderful, thank you.

Dustpan
Dustpan
in reply to Sleepybunny

Best time is early in the morning when tsh is at its highest as fluctuate during the day. I have mine done between 8-8.30am. Anything with biotin in leave off for a week beforehand , nothing to eat or drink before except water,then have meds straight after.

Irismay
Irismay
in reply to Dustpan

Thank you for your great advice Dustpan, I will follow your instructions.

Dustpan
Dustpan
in reply to Irismay

Your welcome Hun.

mountainice
mountainice
in reply to Irismay

I have had two tests done privately and neither GP nor two endos would take notice of them, even though the GP that my one shares with has treated a friend with a lower thyroid TSH than mine! I have written endless letters to my GP and now am writing back to the last endo as he would not listen to symptoms, and said my results were 'normal' when clearly they were not (including the FT4 and FT3). I am trying and trying but in the end will treat myself if no result from the doctors who are leaving me ill.

Irismay
Irismay
in reply to mountainice

Hi mountainice, I would definitely get to see a gastro if you have the chance & take a list of your symptoms. I too feel very sick most of the time & for the past 4 weeks have only been able to eat soup. Anything heavier than that sends my stomach into horrendous cramps & nausea. I cant exercise, even walking sets off the cramping & I've lost shed loads of weight because of it.

I'm very sorry you've had such a hard time re thyroid tests with the gp. I have ordered a private test & beginning to wonder if it will be worth it looking at other posts. It must be very frustrating for you & doesnt help your illness.

I wish you well & get to see that gastro, they might be a bit more supportive some know more about b12 than others & you need as much help as you can get.

mountainice
mountainice
in reply to Irismay

I am sorry to hear of your problems Irismay . It might still be worth you having private tests as some doctors might be more amenable to them. I have felt what I call 'queasy' for 14 years with terrible diarrhoea (sorry, that word!) . Yours sounds horrendous. I too had an awful time while I was still working and before B12 deficiency was discovered - out to the shops in the lunch hour, sometimes barely making a loo on the way there or way back. Trouble is, some things just become a part of life and we tend to accept them - I know I did. Now I have had enough of accepting and am battling ! All the best with your tests and doctors.

Irismay
Irismay
in reply to mountainice

My goodness, we sound so similar with our symptoms. I have to check where all the toilets are when we are going on a trip - it's become a bit of a phobia!

We shall just battle on until we can get the right answers - I live in hope! You are quite right that it has become a way of life & it can be very frustrating for our loved ones.

All the best to you & I hope you dont have to wait too long before you feel well again 🤞x

mbernhardt
mbernhardt
in reply to Irismay

Your TSH is a tad high. Average TSH of healthy people is around 1.5. You should get it retested along with TPO antibodies. You may be getting Hashimotos.

Irismay
Irismay
in reply to mbernhardt

Thank you for that bernhardt. Interestingly my daughter & my mum were diagnosed with hashimoto's. My daughter was diagnosed at 5 years old!

Just high serum level is no evidence B12 itself being dangerous but high serum B12 when not supplementing could be a sign of something else. And these are two different things.

You feeling ill since re-starting injections can be coincidence, something else going on, maybe iron deficiency, thyroid, celiac.

I had low ferritin and accidentally consumed gluten for long time (oat meal was not pure oat) and I felt the B12 didn't work.

There is a guy , who is still very much alive and kicking ,who had level up to 200 000! He did not die. No. Not dead, he needed to have that high level to get a bit absorbed until he figured out he was low on lithium.

Irismay
Irismay
in reply to Justiina

Thanks for your reply Justina. Maybe I can get some up to date bloods when I see the gastro. Its comforting to know there's someone out there still alive & well with such a high level - wow!! Makes me feel I have nothing to worry about! I'm hoping this feeling Ill is just a coincidence & will ho ahead with my injection tomorrow.

I have been gluten & dairy free for a couple of years & it helped enormously with heartburn & esophagus.

Best wishes

Justiina
Justiina
in reply to Irismay

I hope you get proper tests and start to feel better!

Irismay
Irismay
in reply to Justiina

Thank you!

Kimme1029
Kimme1029
in reply to Justiina

This is my problem.. Same as the guy you mention. I wish I knew more people with B12 issues. My serum B12 is >2000. I take B12 lozenges and all my other tests show low B12/deficiency. I'm now requesting a follow up on my urinary MMA to see if my lozenges are working and if the MMA will come down. My poor daughter is having the same issue. Her urine MMA is elevated and she's a little pale yellow looking. She had her autism test last week and we are literally on the way to get her results right now. Ugh.. B12 can be so tricky.

My hair still continues to fall out, still yellow/pale skin and have whitish pale nails..tingling hands and feet.

healthunlocked.com/pasoc/po...

That is a link to my previous post.

[Edited by Admin]

Irismay
Irismay
in reply to Kimme1029

Hi Kimme1029, I am sorry you & your daughter are suffering so much. I never knew b12 issues could be so complicated & have so many symptoms it makes my head spin. I thought if you have a yellowish tinge to your skin it could be biliary/liver related & should be investigated urgently.

I do hope you both get sorted & get you on the right road to recovery very soon.

Kimme1029
Kimme1029
in reply to Irismay

Ive had so much testing. So far my liver has shown no problems so it's never been investigated further. My daughter is looking more like me now with the yellow/pale skin but her finger nails are still pink. Neither of our eyes have yellow..just the skin.

Justiina
Justiina
in reply to Kimme1029

I think it needs more than just lithium orotate to work, but there are people on phoenixrising.me/ who could possibile help.

Hi,

Just a brief reply as this is someone else's thread.

There is a chapter in Sally Pacholok's book "Could it Be B12" about autism and B12 deficiency which might be of interest.

"she's a little pale yellow"

Pale yellow skin can be associated with PA (Pernicious Anaemia). Can also be linked to other health issues.

Next link is to another thread on the forum where I wrote a detailed reply with lots of links to B12 info.

healthunlocked.com/pasoc/po...

I'm not medically trained.

Well my daughter officially has autism. I suspected this.. However I have a suspicion about B12.

Thank you for telling me about that book. I actually purchased that book when she was 18 months old. I am a compound heterozygous for MTHFR and my B12 seems to always be lacking no matter what I do. My daughter only has 677 hetero and is following in my B12 footsteps. Ugh. B12 is such a pain. I think autism is a misdiagnosis and I've been waiting on an answer if her pediatrician will do B12 injections to get her B12 up.

This seems to be my problem. Constantly. My serum is super high but still deficient. Such a pain.

[Edited by Admin]

We discussed this story in depth a week or two ago.

They have no idea why the people with high B12 had high levels. All they know is that they weren't having B12 injections. They have no idea if they were taking tablets.

If they weren't taking tablets then either - 1. Whatever caused them to die early raised their B12 levels (as is known to happen with liver disease and some cancers. Or, 2. They had a diet high in B12, which probably means they ate lots of meat (red and processed) which is associated with earlier deaths.

If they were taking tablets then they were possibly taking them for a reason - such as not feeling well. If people who don't feel well take B12 tablets and people who don't feel well tend to die earlier then you've got your correlation.

tl:dr It's a crap study with no reliable conclusion.

Irismay
Irismay
in reply to fbirder

Thanks fbirder I will carry on with my injections & put it down to coincidence that I feel unwell. I will see what the gastro suggests next week, if anything.

mountainice
mountainice
in reply to fbirder

Thank you as I have been worrying about this also, especially now I self-inject.

Justiina
Justiina
in reply to fbirder

A bit OT but I figured you could find it interesting that my B12 injection leaflet was very informative about toxicity of B12.

Ld50 1600 mg (i.v.) for a mouse. So technically B12 could be dangerous 😄

fbirder
fbirder
in reply to Justiina

Assuming a 20 g mouse, that would mean an LD50 of 8 kg for me (or 320 billion % of the recommended daily dose).

No wonder they are keen on restricting it.

Justiina
Justiina
in reply to fbirder

Yeah its very likely one would use that much 😄

palmier
palmier
in reply to fbirder

They didn't take supplements:

"Participants included individuals who completed the second screening visit beginning January 1, 2001, excluding those who were missing values of vitamin B12 plasma concentrations or used vitamin B12 supplementation. "

jamanetwork.com/journals/ja...

fbirder
fbirder
in reply to palmier

Ah, yes, another failing of the study - selective use of the truth.

Later on they say - "we only had access to pharmacy records on injectable vitamin B12 supplementation, but not for over-the-counter tablets, which could limit the implication of cobalamin supplementation"

In other words - "They could have been gobbling B12 tablets like Smarties and we wouldn't know".

One doctor will say 1 thing,another something else,do what you think is correct,or ask 1 other doctor,go with the 2 that tell you the same.

Irismay
Irismay
in reply to davidleigh

Thank you davidleigh. I have a few appointments coming up so I hope something will finally be sorted.

This does look like a load of cobblers, eg, this comment

' People whose bodies cannot absorb vitamins like B12 through food can use supplements, and in recent years the market for vitamin and dietary supplements has boomed.'

Well surely if a body can't absorb b12 from food, then it is unlikely it will absorb it from oral/ dietary supplementation.

Seems like muppetry to me

Irismay
Irismay
in reply to miravet

Thank you for your reply miravet, it mirrors what others have been saying & is very helpful.

Clarkie477
Clarkie477
in reply to miravet

Exactly what I thought.

mountainice
mountainice
in reply to miravet

What about this line:

'The researchers said they weren't sure why, and while it may have something to do with the way B12 affects gut bacteria, they said that's just a guess.'

Funny thing is, since I started self-injecting last April the worst of stomach issues has subsided, though I still often feel sick, so perhaps something is affecting gut bacteria. Also, now I am on gluten-free the feel sick is up and down, sometimes goes away for a few days at a time, so who knows? So hard to work out.

palmier
palmier
in reply to miravet

People who can't absorb enough b12 from (reasonable amounts of) food may be able to absorb enough from supplements because supplements can be made very strong. A tiny pill can contain 1000 or 5000 mcg, but you can't get that much b12 from a healthy diet.

There is a rough estimate that people may absorb around 1 % of the b12 in food or supplements even with an absorption problem. 100 years ago some people coped by eating large amounts of liver every day. That was the only chance to get enough b12 from food despite an absorption problem, but it wasn't a healthy diet.

Just shows how ignorant some gaps are on PA.i can only assume because you redeveloped symptoms while off injections that you definitley have PA.The article probably relates to people who are not b12 deficient and are taking oral supplements.my levels are high but that's because om having b12 injections and doc has said you cant overdose .xx

Irismay
Irismay
in reply to Hesterbear

Thank you Hesterbear. Your reply matches that of Gambit & is very helpful. Thanks for taking time to reply. X

Regarding your stomach issues please ask for your fecal elastase to be tested. This tests pancreatic enzymes which if low will cause your stomach issues. It’s a simple test to do. I have high b12 due to self injection but my problem is low pancreatic enzymes. It means you’re not absorbing your food properly. Other issues could be bacterial overgrowth in the small intestine. Also easy to test for. I have had this too. Again high b12 not the issue. Good luck and let us know how you get on.

Irismay
Irismay
in reply to Martin2812

Thank you Martin, I have put this on my list to ask the gastro or my gp if hes not interested! I will certainly keep you updated but it's such a slow process! Thank you again for your reply, I am very grateful.

mbernhardt
mbernhardt
in reply to Irismay

Seven years ago I was hospitalized with weird gastro problems. Turns out I had hypothyroidism.

Irismay
Irismay
in reply to mbernhardt

Ps. Can I ask what your gastro symptoms were when you were hospitalised & are you better now? Do you take meds for your hypothyroidism & do you have b12 injections? Thank you

mbernhardt
mbernhardt
in reply to Irismay

I had air in my abdomen which is a medical emergency. I have always had some gastro problems and had part of my colon removed. I also have fat malabsorption. I am currently being treated for hypothyroidism. I also take 10,000 IU of vitamin D and 2500 mcg of B12 in a pill everyday. I think all this helps.

Irismay
Irismay
in reply to mbernhardt

Thanks for letting me know your story, it sounds as if you have had a very tough time. I certainly have excess gas in my intestine (I dont think it's the same serious issue you had) which can sometimes be agonising because I cant get rid of it. This is what happened 4 weeks ago after my dinner I had the telltale cramps that all was not well. Usually I can resolve the issue albeit slowly, with paracetamol, heat & sometimes followed by a horrid dose of diarreah (sorry for the graphic descripton). Not this time, the pain was so severe, I thought I was going to explode & nothing was coming out. I collapsed on the bathroom floor & eventually vomited. I think I should have called for help at this point! I havent been the same since & all I can eat is soup as everything else causes the cramps & horrible nausea. I saw my gp a few days later & she has referred me for an urgent review with the gastro next week. I still have trouble expelling air & stool at the moment & it's most uncomfortable & nauseating.

Best wishes

I have had stomach issues for 14 years. Is that test something a gastroenterologist would do? I have a referral to one but don't know whether to take it up.

Yes my gastroenterologist did it and your GP can do it to but often they are not sure about the results. Low pancreatic enzyme production is not that well known about and shows up as “poor absorption’ but is actually more chronic than the words suggest. My gastroenterologist has no idea why pancreas has effectively stopped producing digestive enzymes. There is no damage to it as evidenced through MRCP. There is no known causal link with PA but he wasn’t surprised to find I had it.Hope that helps.

No problem.

You could ask to be tested for HPylori when you see your gastric consultant,have a google,ive had this and successfully treated and recovered twice over the years,there’s a very high population carry it in their blood and don’t even know especially if you’ve done a fair bit of foreign travel the odds are higher that you’d get it,it’s a horrible bacteria,you can blood test for it but that only tells you that you carry it not that it’s active,you’d need to do either a stool sample or the breath test to confirm if active then you’d need the triple therapy to treat,two different antibiotics and a ppi over a two or three week period to die it off again.It can make you very poorly and it’s the reason now I’m deficient in b12 d3 etc much safer to get tested than delay and suffer the same consequences that I’m having now.

Ive learned so much from this forum and hadn’t a clue HPylori would cause all this at no time has any gp or consultant pre warned me it’s ridiculous isn’t it.

Anyway best of luck x

My B 12 is always 2000. I contacted the tech at lab Corp. he said it could even be higher than that. That is the level they cut off at. Anyway I have small intestinal bacteria overgrowth. Methane type. It Diagnosed. Thru a breath test GI drs do. I’ve read that high B 12 can be due to some cancers. ?? But also it says the gut bacteria overgrowth in the GI system let off B 12 ?? Antigens that give a false high B 12 levels. ??

Has anyone researched that ??

Irismay
Irismay
in reply to Puncho

That's very interesting - another couple of questions to ask the gastro. I'm very keen to particularly to ask about gut bacteria overgrowth, pancreatic enzymes & faecal elastase as mentioned by Martin2812. Thank you for your post

Puncho
Puncho
in reply to Irismay

Hope it helps. Let me know what the GI dr says. It just seems that all of us with B 12 and absorption issues have gi. issues. 🤷🏻‍♀️

Irismay
Irismay
in reply to Puncho

No I never had a diagnosis for high b12 - I had a ct scan last year & they thought I had a shadow on my pancreas but after further testing they decided it was a gastric varix! I am wondering now I have new & more severe symptoms if I have been working up to something a bit more significant. I guess it's a case of going through the motions again. I will let you know the outcome as soon as I can but it may take a while!

Join other newsgroups. That article is in much dispute but messing with our care and our heads. I think it is due to a shortage because they’re putting B12 in cancer drugs. You heard it here first!

Noted! Thank you Survivorette

Your post is very interesting to me because a month ago my g.p. Advice me to stop my B12 supplements as blood test flagged up at over 1,000 far too high she said. I stopped like she said and started feeling so much better we’re as when I was taking my supplements I felt very ill every single day which I blamed on my hypothyroidism. I have not read the report but I’m beginning to wonder if B12 can cause problems. Like you I also thought you peed it out, so having such high levels doesn’t make sence to me, plus the fact you say you feel worse on your injections. I have no answers but the proof of the pudding is in the eating and all I know is I feel so well now compared to when I was on the supplements xx

Thank you Timetraveler67 , it was very interesting to read your post.

I was due my b12 injection today - I went to the surgery & was in 2 minds whether to go ahead with it because I felt so unwell. The nurse called in the duty gp because of my indecision & also she noticed I'd lost alot of weight. The gp advised I wait until I was feeling better & after I had seen the gastroenterologist next week & see if my symptoms improve.

It will be interesting to see what happens - either I'll start to feel better like yourself or things will get worse!

I hope very much you continue to feel better & wish you onward good health x

AREN’T THE PEOPLE IN THIS GROUP PEOPLE WITH PERNICIOUS ANEMIA? Martyn Hooper takes daily shots, unless he’s changed.

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