Vitamin B12

[Blonde25]

Hi everyone

I'm going on holiday to Cyprus in July and I usually start taking vitamin b12 to prevent mosquito bites a week or so before I go and one a day whilst away .

I have been diagnosed with PV in December 2022 . Does anyone know if this is still ok to take with being diagnosed with PV

Thanks in advance

[Loubprv Volunteer]

Hi

How lovely! Nice to have a super hol to look forward to. I’d give your haematologist or haematology nurses a ring. I m a patient of Prof Somervaille’s at the Christie, and he said there is a chance that B12 can increase production of red blood cells. Just check…….always best to get it from the horses mouth rather than the opinion of the masses. Have a super time. Louise x

[ainslie]

I didn’t know B12 deters mosquitos, I thought I heard it was maybe B1 perhaps.?

Re taking B12 with PV, if you are on venisection only be careful as B12 and other B vits can increase red cells. If you are very well controlled on meds and Hct very good then maybe ok especially if a week or two on holiday, best check with Haem if poss

[DJK12 in reply to ainslie]

I remember reading years ago that regular eaters of Marmite, a source of B12, were less likely to be bitten by mosquitoes . I've never seen it again and certainly wouldn't take a supplement without checking, as you suggest, with haematologist.

[Blonde25 in reply to DJK12]

Yes it works for me and I've used B12 for a few years now before I go abroad but i will ask my hematologist team to check it's safe to take just for a short while . Thank you for your reply

[Janis12 in reply to DJK12]

Hi, I used to give my horse a spoonful of marmite every day after reading about soldiers who used this when serving abroad. I now take it myself daily and have found I am not bothered so much by the little tinkers. My horse loved it by the way.

[Blonde25 in reply to ainslie]

I have always taken the B12 supplement before holidays abroad for a week or so and whilst there . I get eaten alive else and it does work along with Avons skin so soft original dry oil spray as an after sun for the evening when it's most likely to be bitten . I will ask my hematologist if it is safe to take for a short period though . Thank you for your reply

[Trocken]

interesting to read and may explain why I get eaten alive! My B12 is low, have had to have injections to boost it, not needed them for a while but my levels are still only 300-400. My red blood cells are still high though! I would get it checked out based on your levels though to be on the safe side!

[OnlyFearIfNecessary in reply to Trocken]

I’m in the same boat as you! Low b12 of 360 and haemoglobin of 16 as a female. Is it safe for us to be getting the injections? How often are you getting the injections?

[Whitehair51]

Thiamine is supposed to deter mosquitoes

[hunter5582]

I take a Vit B/folate supplement to address a measured deficiency. My dose is titrated to bring the levels WNL. It has not been an issue in terms of affecting erythrocytosis. My MPN Specialist is aware I take Vit B and does not have an issue with it.

It is important to note that Vit B does support the development of RBCs. Vit Bs also plays other roles in the way the body functions. It is particularly important to support neurological function. Any decision about taking Vit B, however, is ideally based on measured levels.

I would suggest consulting with both your MPN Specialist and an Integrative/Functional Medicine provider on this issue. The latter specialists are more familiar with complementary health interventions and may be able to provide options and guidance to achieve your goals.

Wishing you all the best and a great trip to Cyprus.

[Plate]

Hello, I was just reading about vitamin B12 last week. I was curious about B12 and ET. Apparently B12 increases platelet numbers. That is not the answer I wanted. I see my hematologist at the end of June. I wonder what my platelets are doing?

Sorr that I had no answers for you.

Have fun on your trip!

[dogsandhorses in reply to Plate]

I hadn't heard that. My Neurologist put me on B12 for twitching eyelids at about the same time that I was diagnosed with ET-JAK 2 positive 5 years ago. I wonder if I should keep taking it? Seems like the Hematologists don't have any answers for things like this. Both of them are aware that I take B12. There are no MPN specialists in my state. Hydroxyurea is causing me severe side effects, but neither of the 2 Hematologists I've seen want to change me to a different drug.

[Plate in reply to dogsandhorses]

I am dogs (5) and horses (3) also! While I can find no scientific evidence B12 does increase platelets. When I looked up ‘B12 and platelets ‘, it states platelets will increase if taking B12. I take HU and I have been talking B12 daily for awhile as it helps with fatigue. Hematologist said nothing about it.

[Blonde25]

Thanks everyone for your advice and comments .

I will update you all about this when I speak to the consultant on the 16 June for my next appointment and let you know what they say