My gp tells me that my vitamin B12 levels are quite low ( occasional numb toes and mouth ulcers) and has prescribed a strongish Vitamin B12 supplement on prescription known as 21 cyanocobalamin.
I have read that vitamin B12 INJECTIONS can promote the production of red blood cells - which obviously we pv’ers don’t need.
Has anyone come across this dilemma? Obviously I do need supplements ( I’m allergic to fish and most other nutritional sources of B12) but can’t risk more red blood cells.
I also need to know if 21 cyanocobalamin contains l - histidine which is a precursor to histamine..
( I have pretty severe histamine intolerance)
All help much appreciated - don’t want to leap out of the frying pan into the fire but trying find info re this supplement isn’t easy.
Thanks
Louise
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I was recently told by my naturopathic doctor that I am B12 deficient, and he advised that I take a supplement containing 258,000% RDA of B12 methylcobalamin.
I also had concerns after reading that this may promote red blood cell production and unmask PV symptoms. At my first visit with my new hematologist who specializes in MPNs I asked if this high dosage of B12 was safe for me to take. He replied that he saw no harm in taking this, but if I noticed worsening or new symptoms to stop supplementation and contact him. I have been taking this supplement for over 4 months and have noticed no negative impact to my health.
I am not an expert or professional and simply offer my own experience.
While it is true the you need Vit B to make RBCs, you need it for other things to. It is essential to neurological health. Chronic Vitamin B deficiency can cause serious health issues. Here is a list of some of the possible issues.Weakness, tiredness, or lightheadedness
Heart palpitations and shortness of breath
Pale skin
A smooth tongue
Constipation, diarrhea, loss of appetite, or gas
Nerve problems like numbness or tingling, muscle weakness, and problems walking
Vision loss
Mental problems like depression, memory loss, or behavioral changes
I have PV and am Vit B/Folate deficient. I am under the care of a MPN Specialist, a regular hematologist and an Integrative Medicine doc. No provider on my care team has a problem with correcting the VIT B deficiency. It clearly is needed. My dose was titrated by the Integrative med doc to meet my specific needs.
You are wise to be cautious about supplements. Anything that can help us can also hurt us. Suggest consulting a doc with expertise in nutrition like an Integrative or Functional medicine doc. Unfortunately, many docs are not well trained on nutrition and we need to seek appropriate exprtise just like we do for MPNs.
I read your reply and wondered if you have the MTHFR gene - poor methylation. I do. My recent B12, about 1 month after stopping HU, was at the low end of normal. Will ask MPN in 2 weeks about it but I've ordered my adenosyl and hydroxyl forms of B12 because my genetic tests indicated that I can't take methylcobalamin due to my COMT++ gene combined with MTHFR. More info for those that want to read more here: holisticheal.com/getting-st...
I have looked into B12 supplements in the past. It is one of the cheapest drugs to produce. Therefor there is more money to earn by injecting it. There is a lot of hype, and some of the “doctors” promoting it have been sanctioned. As far as I know, there is no health benefit in injections over pills.
Ah okay. Sometimes I forget about the different systems in different countries. I think in the UK it's cheaper to prescribe tablets than to take up staff time injecting (unless the patient injects at home).
Our Mp is Tim Farron who I ve spoken to several times and even he thinks we should pay.
We should also pay for our food in hospital - we don’t get free food at home why in hospital? I believe we should pay £10
for a gp appt and £20 if it’s missed. We should have the same system as France. A card system.
Our NHS is on its knees Otterfield. Sorry to rant but if folk can afford £10 a week on boose or £10 a week in lottery tickets, or on cigarettes - they can afford to pay.
We are fortunate and certainly could pay - then we could pay our nurses more.
But that’s my view and I m very willing to listen to others ……😊
Well you've put me off the Lib Dems! I disagree with you entirely but this isn't the forum for a political argument, so I will just say a few things.
Most people budget and don't spend £10 a day on food each! (I would certainly have resented paying for Serco "food" for 7 weeks as an inpatient! It was bad enough without being out of pocket). Yes, I pay for food at home - real food I can choose. I don't buy booze, cigarettes or lottery tickets.
I am not poor enough to qualify for benefits so if such a system was brought in my husband and I would be seriously affected financially. No doubt there are people wealthy enough not to understand this, let alone understand the genuinely poor who have to get their food free from food banks at the moment.
If people had to pay to see a GP, many people just wouldn't go and serious diagnoses would be missed (although there may be a case for a charge for missed appointments with no good reason).
Anyway that's enough of a rant. I'm not one of those people who "hates" people with different political views so I genuinely wish you well, while hoping your hopes for the NHS will never be fulfilled!
There is an [occasional to rare] B12 absorption disorder called pernicious anemia, wherein the body doesn't make enough of the transporter [from gut to bloodstream] for B12 called intrinsic factor.
In the past it was thought that if you had this problem you couldn't ever get enough B12 from oral sources [foods w/ B vitamins in them and especially red meat] and required monthly injections so as not to be deficient, but relatively recently [at least in the past 20+ years or so] it was discovered that the deficit could be overcome by supplying supra-physiologic amounts of B12 in the form of oral supplements [e.g., 1000 mcg daily].
B12 deficiency can lead to serious and permanent health problems unless treated promptly. I really encourage you to read the book “ could it be B12 deficiency?” By Sally Pacholok. It will give you all the additional information you are looking for. There are 4 types of B12, cyano being the cheapest but not necessarily the best.
The serum blood test for b12 deficiency is not especially good and has a habit of picking up B12 analogues that your body can’t use. So for many people they are told they are not deficient when they actually are.
B12 is very safe. If you had been exposed to smoke in a fire, every ambulance carries a cyanokit which is the equivalent of 5000 injections, and you may be given 2 of these. Nobody has been harmed by B12. Interestingly there was a legal case in the Netherlands where a patient took his Dr to court saying the b12 he had been given caused health problems. This went in favor of the Dr as B12 can’t harm you, but a lack of it will kill you ( see history of pernicious aneamia)
The reason I went to my gp in the first place - and then discovered I had ET by coincidence, were my B12 deficiency symptoms. My B12 were low but not low enough for the Dr to acknowledge my problems so I had to do the research myself and treat myself, which had been hugely successful and I have helped countless others where their doctor has fail to recognize the issues.
The book I mentioned is excellent and a real eye opener, maybe your local library has a copy .
I would say injections are preferable over tablets for several reasons. With a tablet, you have no idea how much your body is absorbing. Sublinguals tend to be a bit better over pills you swallow but again how much is going in is just a quests. Your Dr should really establish why you are B12 deficient in the first place, maybe you are unable to absorb it for some reason ( see the book) . Maybe your current diet doesn’t provide enough, maybe your medication ( if you take any ) has an impact… could be any number of reasons. Until you have established the reasons for your deficiency I would recommend injections. The correct amount depends on your symptoms. Some people are ok with less, some need it daily, we are all unique and different.
If you read the book you will be able to teach your Dr quite a lot too. In my medical training I had 1 paragraph on B12. My daughter in law , who currently works in A&E had ½ a day in her 7 years of training on things to do with all vitamins/ minerals - so you can understand why the Dr’s don’t know so much.
Good luck 🍀
oh by the way, whatever type of b12 supplements you take, once you start taking B12, there is no point in retesting your levels. If your Dr suggests this then you know he knows nothing about B12.
B12 was a huge life changer for me and many of my family members .
I'm so very sorry, but I must disagree with your last paragraph.
The reason to re-test serum levels once supplements are begun is to verify that an adequate amount is absorbed. If not, then a change in dosage, in the formulation, or the timing of the dosage [e.g., with a meal or with an acidic beverage] should be made.
That also reminded me of another point- if you have been tested and found to have low B12, and especially if you are going to start taking a B12 supplement, your folate [or folic acid] serum level also needs to be checked, otherwise the uptake and use of the new B12 could exhaust your folate causing another whole set of problems.
I would suggest you check that information with the pernicious anaemia society. They have a wealth of information on their website. They are also in discussion with NICE to “improve“ the current guidelines . Yes always good to get your folate checked too, along with iron levels as the3 work together . Thanks for mentioning that. 👍😁
Hi Amethist,Thankyou very much for your reply. This is an incredibly long reply. Apologies, but please read in detail. I will try to answer a couple of your comments.
I have gone into a great deal of detail because you say you studied medicine, therefore it’s really important that you read my post.
You may even find it interesting
I am a 68 year old female diagnosed with pv 14 years.
Polycythemia doesn’t bother me, I’m fine.
So.
(I studied dietetics about 90 years ago so am very familiar with the damage that low levels of B12 can cause.
However. And this is a BIG however.
As Hunter says I am incredibly cautious when it comes to putting any drugs/ supplement in my mouth before first researching - as you will read directly below.)
Please read this, it may enlighten you.
10 years ago I was given 9 months worth of Nitrofurantoin for a UTI, by two doctors who I trusted.
SILLY ME.
Despite my protestations of experiencing many of the side effects listed - cough, nausea, dizziness, pins and needles etc I was told that it was the UTI and not side effects..
in the end my haematologist said I must be referred to a urologist because the uti could be spreading to my kidneys.
To cut a long story short due to Nitrofurantoin I ended up with lung damage ( I still have a cough after 10 years) histamine intolerance and severe peripheral neuropathy - the pain of which would drive many lesser folk to commit suicide. Both rare side effects but nevertheless they are known side effects.
I also did not have a UTI but a huge burst abscess in my bladder which according to the superb private urologist I saw “ was spewing forth stuff that looked like yellow toothpaste and could have caused sepsis.”
“ I expect you were feeling very unwell Mrs Broughton”
You bet I was.
As you can gather I no longer trust gps or most doctors in general. At all.
They have absolutely no knowledge of nutrition, and barely any knowledge of orphan conditions. They do not refer their patients to an expert soon enough and rely far too much on simply doling out drugs.
Please read as much as you can on the Swiss histamine intolerance website.
You will realise that I am hugely intolerant to the majority of foods containing vit B 12.
Antihistamines do not always control the symptoms of HIT and have their own side effects for instance fexofenadine causes a massive worsening in my tinnitus, loratidine taken over more than 3 days causes insomnia ( as also experienced by my haematologist at The Christie) etc etc
I can’t eat fish, shellfish, liver or kidneys.
I have to be very careful with red meat because if it is aged, or been hanging around for some time, it will be high in histamine,
I can’t eat processed cereals containing vit B 12.
I can’t tolerate yeast, cheese or yoghurt but do consume as much semi skimmed milk as I can, the B 12 which of course is absorbed more easily than that in beef or fish. I can eat egg yolk but not egg white.
I can’t tolerate fortified processed plant milks either.
I took a 1 mg x 21 cyanocobalamin yesterday as prescribed but reacted very badly to it, because anyone who is familiar with histamine intolerance ( see histaminintoleranz.ch) knows that anything processed whether food or drugs may trigger a reaction.
I spent the night with nausea, headaches, ghastly itching. Antihistamines don’t always bash the symptoms on the head.
So I agree, a severe deficiency of vit B 12 will kill me - but the wrong supplement will indeed cause me a host of the most miserable reactions.
So I have ordered vit b 12 from Lamberts in two differing doses. 100 ug and 1000ug and will give that a go.
I have ABSOLUTELY no intention of having a vit b 12 injection that then can’t be controlled.
(Interestingly the research I did into the Astrazenica vaccine flagged up the fact that it contains mostly l- histidine - the precursor to histamine.
The gp told me it was perfectly safe for me.
A pharmacist chum of mine said under no circumstances have the Astrazenica.
I am now awaiting my fifth pfizer jab to which I have had no reactions at all.)
We have to be our own project managers in this life Amethist, because no one will look after us like we do.
Forgive me if I sound rather dictatorial but I have, as you can tell, been round the block a few times.
May I politely suggest that in her spare time your daughter in law reads up on nutrition, the effect of our bodies, and on orphan conditions.
She will then become a wonderful exception in the medical world.
I take 1000 mgs daily of hydroxicarbamide (which I tolerate well for PV) 75 mg aspirin, 75 mg levothyroxine, as well as a histamine friendly probiotic, 500 mg quercetin, 50 mg B6, 50 ug vit D 3 and 500 mg of vit c.
I will research into all the above and see if they inhibit absorption of B12.
I do not take H2 RA s.
I also tried a diamine oxidase supplement which had little or no effect on HIT.
pubmed.ncbi.nlm.nih.gov/257... This is a link to a study showing that B12 levels are overestimated in MPN patients by standard assays. Many of us are actually deficient in B12 and have neurological symptoms. Pins and needles, weakness etc. . I find that monthly B12 injections help enormously. Had skipped them for several months - change of GP when moving , v difficult to communicate with new GP practice etc. Had a B12 injection on Friday - feel better today, Sunday.
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