Has anyone looked at this? It says th... - Pernicious Anaemi...

Pernicious Anaemia Society

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Has anyone looked at this? It says that B12 /injections / supplements can do harm after all. I hope it’s not true.

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jade_s profile image
jade_s

Since they don't provide any references, we have no idea on what they're actually basing this claim (*). It is likely a misunderstanding of the situation in which some people have high B12 levels without supplementing B12. In those cases, high B12 is an indicator of some underlying disease. And periodically some researchers will analyze large population data and suggest that higher B12 levels show poorer outcomes, but those are also suspect.

This thread touches on that confusion: healthunlocked.com/pasoc/po...

There is no upper limit on B12 intake!

(*) Looking at the article again, they cite a Mayo Clinic page and an NIH page. Both state that B12 is safe as there is no upper limit. So I really have no idea why they make this statement - it is totally unsupported.

Mayo page: mayoclinic.org/drugs-supple...

NIH B12 fact sheet: ods.od.nih.gov/factsheets/V... In fact, this fact sheet states: Health Risks from Excessive Vitamin B12: The FNB did not establish a UL for vitamin B12 because of its low potential for toxicity [1]. Even at large doses, vitamin B12 is generally considered to be safe because the body does not store excess amounts. ..they also have a list 101 references long to back up their claims. :)

The cancer link is a bit more unclear, from the studies, but I personally take it with a grain of salt. The NIH page state: The evidence for a relationship between vitamin B12 and cancer risk is mixed. Some evidence supports a link between increased cancer risk and higher intakes or blood concentrations of vitamin B12, some supports a link with lower intakes or concentrations, and some evidence indicates no link at all. ...it continues with an overview of the various studies. I stress that not all studies may differentiate whether people are taking supplements or not, so they may very well be including people with high b12 levels due to cancer, not from supplementing. So, not conclusive. I personally prefer quality of life versus some undetermined risk. :)

ACritical profile image
ACritical in reply to jade_s

Thanks for your swift reply. It’s how I saw it, however still felt this little doubt creeping in my head. Thanks for reassurance.

jade_s profile image
jade_s in reply to ACritical

Happy to help!These things are always worth double checking, you never know what the latest research will show. I'm just dismayed how nonchalantly they've presented these so-called side effects, without any context or explanation. I'd even say irresponsible.

jade_s profile image
jade_s in reply to ACritical

While I was typing this reply I couldn't resist digging further, and I figured out where they got this information. A highly outdated 'adverse reactions' section from the drug label info for cyano injections. dailymed.nlm.nih.gov/dailym... There are quite a few brands of cyano in the US and they all list a few of these weird conditions as side-effects. If you go on google scholar, there are some case studies from the 50s and 60s, but nothing since. I think this is just very outdated info combined with misrepresenting recent studies. Very very strange.

If you click on the "NO" next to the "Was this article helpful? " thing, you can send them feedback. So I sent one telling them their info was unnecessarily scaring people and that their info was out of date, please check the NIH fact sheet they themselves cite, thank you very much. LOL.

The one for hydroxo is much more up-to-date and correct dailymed.nlm.nih.gov/dailym...

ACritical profile image
ACritical in reply to jade_s

Wow, thanks for doing this!!!♥️ I think I will do the same , sending them a reply. Will have to wait until tomorrow, getting ready to retire.🥱😴

jade_s profile image
jade_s in reply to ACritical

That would be awesome, the more feedback the better :)

Night night 😊😴

Technoid profile image
Technoid in reply to jade_s

These B12 toxicity threads never die 😁

But yeah, just to add to the chorus here, the statement they make that B12 injections may cause polycythemia vera (a rare blood cancer) is complete nonsense. It is the other way round. Polycythemia vera causes elevated B12 serum levels. Nothing to do with injections. Gurbage.

Some of the side effects are to me, things that can be experienced during treatment, especially early treatment, but I dont really think of them as side effects, more that this is how the body responds in the difficult healing process of B12 deficiency. My impression is that for most, things like nausea etc, usually subside after some time, which is why I dont think side-effect is not a good term as if they were so, you would expect to experience these things every time after an injection which certainly wasn't my experience.

As Jade alluded to they seem to feel obligated to fill the side effects warning section with all kinds of things that were noticed to occur in patients receiving a B12 injection. Even if a tiny number of cases were involved. And bearing in mind most of things listed are fairly common things to experience during a B12 deficiency, so I would wonder if they really made the effort to exclude that these "side effects" were not things that a B12 deficient patient was already experiencing. Given their completely nonsensical and misleading mention of Polycythemia Vera, it doesn't exactly instill confidence that they made such efforts.

This statement:

"Folic acid supplements may interfere with vitamin B-12. Be sure to tell your doctor if you take folic acid. "

is probably coming from the warning not to take folate before B12 is treated as the folate was believed to mask the anemia which might cause the B12 deficiency to be missed and thereby allow neurological symptoms to progress. To my knowledge folate does not interfere with B12 unless you take gigantic amounts - I did come across one paper which hypothesized that very high folate levels could reduce active B12 but I don't believe that was really tested/verified.

Healthline can be a site with some interesting stories and health topics, but when it comes to something fairly complex and serious like B12, I wouldn't take anything they say on the subject too seriously.

jade_s profile image
jade_s in reply to Technoid

Well said! 👏👏

Gosh i was so busy with the other nonsense I missed the folic acid one.

These B12 toxicity threads never die 😁

My thought exactly 😂😂😂

No wonder that even several specialists I saw freaked out and said my twice daily injections were going to kill me. Dear horribly misinformed docs, it's been nearly 7 years & I'm still improving 🧐🤩

ACritical profile image
ACritical in reply to Technoid

Thank you Technoid! My niggle of doubt has dissipated. This shows the importance of this website, knowledgeable people who want to help others. ♥️

Cherylclaire profile image
CherylclaireForum Support in reply to Technoid

Until the full range and severity of B12 deficiency symptoms has been properly listed by medical professional advisory bodies, how can any individual be sure whether a symptom belongs to their B12 deficiency or is a side effect of their treatment ?

Only time can tell you that:

Over time, some of my symptoms have gone (hopefully forever), some reduced in either frequency or severity, some have now become rare and some are more stubborn.

ACritical :

When I wanted to know what was/wasn't due to B12, I asked GP or consultants I was seeing at the time - but always double-checked here, as many of the symptoms were not attributed by medical profession (primary or secondary) to my B12 deficiency, my low folate or ferritin or my osteoporosis. Sometimes I ignored them, as B12 deficiency symptoms can be erratic and I could find no real pattern.

Occasionally, I needed to take it further - a 24-hr heart monitor revealed 4,000 episodes of ventricular ectopics which eventually went away without treatment. Although I was aware that B12 deficiency can cause heart arrhythmia, this sudden rise in frequency (day and night) came about 2 years after treatment started. Both my father and mother died from severe heart conditions, so you can understand my concern.

I have been treated with frequent B12 injections from 2016, finally began self injecting every other day from 2017, and reduced this to every third day (2-day gap) about 2 years later. When I recently started with Pascoe replacement , which contains more B12 per ampoule, I reduced injections to every fourth day (3-day gap).

This seems to work for me. I started monitoring symptoms in 2016 and finally stopped in 2022, having found no real pattern or routine in symptom return. Can't say I didn't try. What I know is that frequent injections, for me, mean I can have a life. Not the one I had, but not a bad one. I have invested way too much in getting to this stage to want to risk deterioration by further reducing B12 intake.

You will find that far more comprehensive symptoms lists exist - they are mainly compiled by people who have recorded the experiences of those who have B12 deficiency: the Pernicious Anaemia Society, Tracey Witty.

Perhaps the proof is in the pudding: there are plenty of us still here who have had frequent B12 injections over many many years now, I'm glad to report.

Overjoyed, in fact.

ACritical profile image
ACritical in reply to jade_s

You with the others are really making a difference to us. Sometimes I get muddled up with reading or listening to negative input from people who, I find out later, are not at all aufait with the intriguing workings of vitamin B12. ♥️

jade_s profile image
jade_s in reply to ACritical

Indeed, B12 is quite a complicated, as I've come to learn. I'm really happy I could help!

I'm very sorry people have been reacting negatively about it. People think 'it's just a vitamin' but they are essential substances that contribute to every process in the body, and we can only get them from food. Even doctors are very misinformed. Preach on! ❤️ (I suspect we all do!)

SunnyWorld profile image
SunnyWorld in reply to jade_s

😂😂

EllaNore profile image
EllaNore in reply to jade_s

You go JadeS. Good sloothing. This is exactly the kind of information that scares people and ruins everything we've worked so hard for to change

wedgewood profile image
wedgewood in reply to jade_s

Great response Jade . Thank you !

deniseinmilden profile image
deniseinmilden in reply to jade_s

Brilliant response Jade - as I would expect from you.

I don't try to read articles from this site any more as I don't trust anything that won't let you look at things unless you agree to their cookies! It is often just sensationalised click-bait that tries to hook you in and sell to you or sell your details.

Odd things I have seen in the past have been short on facts and high on excitement factor, even if they are couched in a medical article!

While it's always good to be cautious and never take things for granted, I don't really care what B12 scaremongering goes on these days - I'd have been dead long ago if I didn't do my injections and after 8 years of daily SI, I'm still improving because of it, despite other conditions.

ACritical profile image
ACritical in reply to deniseinmilden

Concerned family and acquaintances send me articles they have found to warn me about preaching the importance of vitamins and minerals, especially B12 .

I won’t stop, but it can be tiring with the avalanche of negativity sometimes. At almost 72 my energy levels aren’t always where I would like them to be. I have increased my use of Hydroxocobalamin injections and now that summer has finally started the importance of vitamin D from the sun surely will help me even more. 🙏🏻

Nackapan profile image
Nackapan

Alot if that is on the leaflet in the box of ampoules. O don't think its anything yo be concerned about.

We've got no choice / alternative anyhow

wedgewood profile image
wedgewood

No scientific references provided with this article ! — Emily Cronkleton , the writer of the article , is a Yoga teacher, not a Doctor or a scientist . Need I say more ?

Do put your mind at rest . Best wishes .

ACritical profile image
ACritical in reply to wedgewood

Thanks Wedgewood for making this extra clear. ♥️

Orchard33 profile image
Orchard33

Not heavy on evidence for these claims. Very unscientific.

newlandvale profile image
newlandvale

The study that found blood clots concluded it was a case of too little to late and advised more timely diagnosis and suitable treatment! Sorry no time to search pubmed at moment but found it after a nurse refused my 6-weekly injections

ACritical profile image
ACritical

Thank you for your input and reassurance.

helvella profile image
helvella

It is an appalling article.

First they wind you up to fear getting cancer through taking B12.

Then they reassure: If you develop any side effects from taking vitamin B-12, you can stop taking the supplement and the symptoms should subside.

That alone should show the article for what it is. Trash.

I ask, if B12 could cause cancer as a side effect, do you imagine that if you stop taking it, the cancer would subside? (And I absolutely do NOT believe B12 can cause cancer.)

Statesideheather profile image
Statesideheather in reply to helvella

Not to say it would cause cancer, but every substance is toxic at some level. Even water.

There are studies that show a clear link between men who smoke, take a B12 supplement and ...lung cancer. As I remember, the data was on self reports from patients who were quizzed on their vitamin/supplement usage. Why men and not women? I don't know. Maybe they limited data collection to men? Regardless, it seems things are not always an absolute.

helvella profile image
helvella in reply to Statesideheather

It is my belief that is absolute.

And my main criticism is that they have published it without understanding what they have said. Whether they are right or wrong, the sentence I quoted is ludicrous after a cancer causing suggestion.

PhilAB profile image
PhilAB

Rather than spend time reading this nonsense, you would be better looking how ‘medicine’ has been designed to make us poorly over the last 100 years.

Where have people been these last three years.

ACritical profile image
ACritical in reply to PhilAB

I get these articles send to me to stop me advocating the benefits of vitamins and minerals.

PhilAB profile image
PhilAB in reply to ACritical

I know b12 deficiency can make people anxious, but anything that mentions too much b12 needs to be deleted immediately. Just like the idiot that wrote it.

People been taking daily b12 for 40 years or more, they don’t seem to have suffered. Also don’t fireman inject 5000 level b12 into burn victims?

B12 is so beneficial, that’s why medicine attacks it so often. Healthy patient is a lost customer, and they cannot make profit from b12.

Look at the funding, that answers the question. I bet my mortgage bug pharma pays for hit pieces like this.

Obviously, just my opinion and not the opinion or views of this forum.

ACritical profile image
ACritical in reply to PhilAB

I endorse your answer and that put people off so they send me articles like this one. To put me off and perhaps in a strange way protect me.

islandlass profile image
islandlass

Better alert Simon Cowell - he has it intraveinously - other celeb and athletes are into it too. Check his health regime. Fear mongering, as if we don't have enough to cope with.

Check and check again everything they get their 'experts' to spew out. Old fashioned scepticism is a handy tool to have.

humanbean profile image
humanbean

Healthline.com does give references - this is a recent discovery for me, I had always thought there were none.

Go to the end of the article where it says "How we reviewed this article" and under there it has two clickable links - one to sources and one to history.

When clicking on sources it gives these three (very, very unimpressive) references - in fact they hardly classify as proper sources in my opinion.:

Healthline has strict sourcing guidelines and relies on peer-reviewed studies, academic research institutions, and medical associations. We avoid using tertiary references. You can learn more about how we ensure our content is accurate and current by reading our editorial policy.

Cyanocobalamin – cyanocobalamin injection. (2018).

dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=a66eb3c4-3e1d-4d49-b963-4fa2334cc9b6

Vitamin B-12. (2017).

mayoclinic.org/drugs-supplements-vitamin-b12/art-20363663

Vitamin B12: Fact sheet for health professionals. (2018).

ods.od.nih.gov/factsheets/VitaminB12-HealthProfessional/

ACritical profile image
ACritical

That’s how they get away with alarmist posting.

Hamayeshguy profile image
Hamayeshguy

For high b9 in liver and b3 in brain without taking them is bio indicator of some cancers. High b12 is bio indicator of lung cancer. Unfortunately these kind of research are not accurate and scare people.

WiscGuy profile image
WiscGuy

I am not medically trained.

Every now and then, one of these generic stories pops up. They don't cite their sources of information. In most cases, as this one does, they conflate high natural correlations of serum B12, such as some cancers, with high serum B12 test results from injecting B12. If someone who is not supplementing B12 (especially with injections) has a very high serum B12 test result, the cause of the high test result should be checked out. I have read in articles from medical journals, which cite their sources of information and are reviewed by peers who are medical experts in B12, that the only reason to test serum B12 in a patient who is self-injecting B12 is to check compliance with prescribed levels of B12 injection.

RisingOne profile image
RisingOne

Thought this info might be helpful from the Pernicious Anemia org: Pernicious Anemia Treatment ScandalDespite the fact that such a simple treatment exists, many pernicious anemia patients end up with lifelong damage. Why? Because they are unable to get it! In the USA or UK, the health care systems consistently deny access of B12 shots to PA patients.When doctors do prescribe injections, it’s usually not nearly enough. In the UK, patients get four shots a year. That is absurd! Go ask your doctor for just one study that supports that number. There’s no evidence whatsoever. It’s all about saving healthcare costs. The other problem is, patients often can’t get B12 shots anywhere else.In the 60’s, patients in the UK received one injection a month. Then, in the 70’s, that number increased to once every two months. And in the 80’s it increased to every three months, which is still what they use today. None of these is enough.When you have pernicious anemia, you need daily B12 shots.Most doctors are simply unable to grasp how deadly and crippling a deficiency in a vitamin like B12 can become. After a B12 shot, blood levels rise well above the “desired range” (150-700 pmol/L in most places), and stay high for a while. Since doctors think they need to keep levels within that range, they won’t inject too often. But blood levels of B12 mean little, and they’ll rise regardless of therapeutic effectiveness.When doctors begin your pernicious anemia treatment, they’ll actually start with an initial loading phase of 5-10 shots over a few weeks. Of course, that’s much better than the one-shot-every-three-months protocol it later changes to. We suppose the change is because the initial doses are enough to keep B12 levels within the “desired range”.Worse, doctors will often stop treatment altogether when blood levels seem okay. This whole circus leaves many patients with recurring, irreparable symptoms.But Can’t You Overdose On B12?No.Doctors want to keep blood levels of B12 within range because of an imaginary fear of overdose. This has no foundation. Vitamin B12 is the safest thing you can inject. It is a water-soluble vitamin, meaning excess will be flushed out in the urine. There are no toxicity levels. You can’t overdose. It is harmless even in huge amounts:Ever since B12 was isolated as a substance, it has been used in extremely high doses to treat cyanide poisoning and a range of illnesses. For almost a century, not one harmful case of overdose has been recorded in medical literature. In the 50’s, when chemotherapy wasn’t yet available, massive doses of B12 shots were given to children with a neuroblastoma tumor – every two days, for 2-3 years – with great success:There are too many cases recorded from this hospital and from outside sources who have been treated solely with Vitamin B12 with great success for it to be denied that this substance has a significant influence on the growth rate of neuroblastoma.NEUROBLASTOMA: AN EVALUATION OF ITS NATURAL HISTORY AND EFFECTS OF THERAPY, WITH PARTICULAR REFERENCE TO TREATMENT BY MASSIVE DOSES OF VITAMIN B12.In Japan, ALS patients received B12 shots of 25,000-50,000mcg (each shot equal to 25-50 ‘pernicious anemia shots’ all at once), at first daily and then twice a week. Their ALS progressed slower and they survived for much longer than untreated patients.In life-threatening cases, 5,000,000mcg of B12 is given directly to the veins within a 15 minute window. Blood levels quickly rise to 560,000,000pmol/L, and if necessary, treatment is repeated within hours for a total of 10,000,000mcg of B12. That is about 10,000 pernicious anemia injections all at once, and you still can’t overdose!Pernicious Anemia Treatment GuidelinesTreating pernicious anemia with high-dose B12 shots is not only 100% safe but also very potent. Started early, some patients may fully recover. Others won’t be so lucky, but they can at least stop the decline. Here are some guidelines:

Statesideheather profile image
Statesideheather in reply to RisingOne

Interesting. There are several articles indicating they've found that deficiency of B12 *prevents* growth of neuroblastomas. Here is one. There are quite a few on Pubmed.

pubmed.ncbi.nlm.nih.gov/334...

ACritical profile image
ACritical in reply to Statesideheather

This brings back sad memories. My grandson was born with neuroblastoom in his liver and brain. He has passed away not long after. If only ……Folic acid was pushed to all pregnant women but no one realised too much Folic acid can mask B12 deficiency. So no blood-test or scan picked this up. I myself was only been told in my fiftieth of having had B12 deficiency all my life and lately many within my family received this diagnosis . I first had to research myself everything about Pernicious Anaemia before realising many symptoms can be as result of vitamin B12 deficiency. So now added to that Neuroblastoma .😔

Statesideheather profile image
Statesideheather in reply to ACritical

Oh, I am so very sorry about your grandson. A terrible disease it is.

I should have been more clear in my comment above; the sources I've read indicate the opposite is true. The deficiency state inhibits neuroblastoma growth.

Not to say that B12 is the cause of any cancer beginning, but it is an interesting situation where it seems to help that cancer grow.

So much we don't know about...everything.

ACritical profile image
ACritical in reply to Statesideheather

Thank you for your slant on this. I prefer RisingOne’s reply above although no link to a paper. I have now actually read the abstract you send with your answer and it as you said … so much we don’t know….

ACritical profile image
ACritical in reply to RisingOne

RisingOne, could you possibly find the article about treatment you mention….

NEUROBLASTOMA: AN EVALUATION OF ITS NATURAL HISTORY AND EFFECTS OF THERAPY, WITH PARTICULAR REFERENCE TO TREATMENT BY MASSIVE DOSES OF VITAMIN B12

Much appreciated.

RisingOne profile image
RisingOne in reply to ACritical

ncbi.nlm.nih.gov/pmc/articl... This is the accompanying article.

ACritical profile image
ACritical in reply to RisingOne

Thank you!!

lambuth_eagle profile image
lambuth_eagle

I agree with all jade_s said and will add, the author of the article is a yoga instructor. I know many wonderful yoga instructors and love yoga myself, so this isn't a criticism of that being her profession; however, it is to say that her background is not medical. The trouble with the internet is that anyone can write an article and pretend to be an expert on a subject. Keep injecting...my neurologist, hematologist, and rheumatologist all say it's safe and I can't overdose.

ACritical profile image
ACritical in reply to lambuth_eagle

Thank you , lambuth_eagle. You and all the other people who reacted to my question have taken away the niggle of doubt. ♥️

I have talked with many people about the benefits of B12 injections and quite a few decided to have bloodtests and started to help themselves when GP wasn’t for continuance of loading injections after the 6 they received. The niggle of doubt made me question my involvement in that.

lambuth_eagle profile image
lambuth_eagle in reply to ACritical

It's hard to sort through all avenues of information and different opinions. I am fortunate to have three (four if you count my PCP) physicians that support my injecting twice a week. Thankfully my neurologist prescribes it for me.

tomdickharry profile image
tomdickharry

I never use Healthline. If you check your privacy options you'll find that they inundate you with tracking cookies. Turn off cookies and you won't be able to get on...

ACritical profile image
ACritical in reply to tomdickharry

Thanks for that advise.

WIZARD6787 profile image
WIZARD6787

Thank you all! Very apropos for me as I was going through a spell of self doubt. Critical thinking.

ACritical profile image
ACritical in reply to WIZARD6787

I know how that feels. 🫡 And I endorse your answer. Thanks to everyone who have responded so quick with researched answers.

Purplegirl2 profile image
Purplegirl2

the only concerns that I know about with injecting b12 is making sure that potassium levels do not drop too much if you are injecting frequently, but that can be easily remedied by eating more foods high in potassium.

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