I was advised by a senior member of the Consultant Team approx. 12 months ago that I should absolutely not take B12 supplements, she said it was like fertilising grass.
I took her advice, although disappointed as I was taking B12 to help reduce my fatigue.
I then realised that I was taking B12 inadvertently in an electrolyte drink which I was taking to assist with my hydration following exercise.
I spoke to a different member of the team and he said there was absolutely no problem in taking B12.
Can anyone offer advice?
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Sorry I don’t know, hopefully someone else can answer for you. In case of interest though there was a bit of discussion re. B12 at the London forum (about 09:50 mins to 13:05 in this link)
Yes - I hesitated to add the link as there wasn’t clarity ( decided I’d add it anyway mainly because of what they went on to say about HU possibly confusing the B12 assessment).
I think this is an "It Depends" answer. Strictly speaking, B12 is not a "fertilizer" for RBC production. That would be iron. However, B12 is an essential part of erythropoiesis through its involvement in DNA synthesis and cellular metabolism. It is important to understand that B12 plays an essential role in various cellular functions, including neurological function. A B12 deficiency can have very serious consequences.
It is not a good idea to take a supplement unless there is a need for it. At best, you are just wasting money on something your body does not need and will just excrete. If you are struggling with fatigue, doing a comprehensive nutritional assessment is a very good idea. Some nutritional deficiencies will contribute to fatigue. When my Integrative Medicine doctor did a comprehensive nutritional analysis, I was found to be deficient in Vit D, Magnesium, and Vit B/folate. I take supplements for all three with doses titrated based on follow up assessment. My MPN Care team is aware and fine with this.
it is important to note that iron deficiency can cause fatigue (and other adverse effects) even when it does not cause anemia. Regardless, iron supplementation is contraindicated in PV. It is a balancing act to keep your iron levels high enough to avoid adverse effects but no so high that it drives erythrocytosis.
Dealing with fatigue is often multifactorial. Another factor is the overproduction of inflammatory cytokines. This constant systemic inflammation drains the body's resources and energy.
Suggest that you consult with a MPN Specialist about whether Vit B supplementation is indicated on your case. It would be best to base the decision on measured levels of nutrients in your body.
Did you find taking B12 helped with your fatigue symptoms? If yes, that is suggestive of a deficiency. Did your symptoms return when you stopped supplementing? Again highly suggestive of a deficiency.
The B12 blood test is well known to be inaccurate, especially if you have taken any supplements recently, so that can’t be relied on.
If you get to see that ‘senior team member’, ask them for the scientific / medical evidence for their opinion. What is the physiological mechanism by which they think B12 will have a negative impact on your condition/ health?
Having read a lot about B12, I can’t see how it would/ could be a problem . Having a deficiency however is very serious and in extreme cases deadly. It mimics many other conditions and is rarely understood by medical professionals, even haematologists.
If you haven’t already read the book “ Could it be B12?”, I highly recommend it. This will help you understand B12 better and be able to ask the right questions.
Best of luck on sorting this out. You may just have to do what you feel is in your best interest and ignore their advice, but do read around the subject so you feel adequately informed.
Medical professionals do seem to have very thick blinkers on when it comes to vitamins.
Thank you for taking the time to reply. I will take the time to read the book.
I know the medical team have my best interests at heart but they are only interested in treating the condition with drugs. I will take your advice and read more.
I agree. The medical staff do want what’s best for you, but the only options available to them are pharmaceutical and they are constrained by guidelines which don’t include vitamins unless you are so seriously deficient it can’t be ignored. My sister had many trips to hospital a& e with lots of various symptoms . It was only after many months that her vitamin levels were checked and she had a vit D level of 6. She felt like she was dying! If the Drs knew more about vits and tested more frequently, it would have saved the NHS a lot of money. I personally had B12 deficiency even though I was technically in range. I had to resolve this myself, quite successfully. There are problems with the B12 test and it is well known to NOT be accurate yet most Drs insist if it’s in range you are fine.
My D in L is now a registrar in internal medicine. In her 12 yrs of training she had ½ a day learning about all the vits/ minerals. They frequently have drug reps bringing them lunches etc and teaching them about the latest product. It’s no wonder they don’t think about vits etc as it’s been given so little attention that they probably think it’s no longer an issue in modern society. Couldn’t be further from the truth but Drs no longer know how to recognise it.
The best you can do is research it yourself. Get a up to date blood test if you haven’t already . Then if you have some deficiencies try some supplements and monitor the results. Keep a diary of your symptoms and any +/- results from taking them. People don’t die from vitamins. Drugs however are the 3rd leading cause of death in USA, -( probably UK too) , even when used according to Drs prescription. We have to be more proactive in looking after ourselves.
I second everything that Amethist has said including the book 'Could it be B12?' which is well worth having. Briefly, I was diagnosed JAK 2 E.T. in May of this last year, put on Hydroxy and aspirin. However, most of my symptoms did not disappear and many got worse. In October I mentioned B12 to my GP and there and then he gave me a jab. The result was astonishing. within 2 days I felt I was almost back to my old normal self. I've had another since and continue to feel pretty good. Tomorrow I am due to meet with my GP to properly assess the situation so will know more in the coming weeks but B12 is not something to be ignored and is definitely worth getting checked out properly and not just the ordinary B12 blood tests which are notoriously inaccurate. One more bit of advice from experience...do the research yourself, GPs are not terribly interested or knowleagable when it comes to deficencies and many types of medication can prevent the body absorbing certain essential vits. I hope this is helpful.
I take B12 everyday and on repeat prescription. This on the advice of the Haematology consultant. They checked my B12 and it was dangerously low. Took B12 tablets for 6 months and levels were OK. Checked 6 weeks later and B12 level dropped significantly, but not outside of limits. View was that if dropped again at the same rate it would be outside limits. Haematology say that I'm not absorbing B12, hence on daily low dose tablet.
If on meds for PV then B12 might be fine, it allegedly does increase reds a bit but just monitor it with regular CBC’s . It might also be wise to check if you actually need B12, be alert that PV can give false high B12 readings depending on which test you use
My doctor suggested I take b12 as part of the effort to reduce fatigue. After taking it on a daily basis for 2 months I am now down to once or twice a week.
As pointed out earlier, it is not easily absorbed. I opted for the liquid form and drop a little over 1 ml under my tongue and hold it for 30 seconds. Seems to be working.
But it is a balancing act. I get comprehensive bloodwork every other month so it's being tracked. I am very satisfied with the results so far. Good luck
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