Hi, does anyone know if it is safe to take vitamin D supplements if you have PV?

[jazzyb]

As well as PV I had malignant melanoma 3 years ago & since then for obvious reasons have avoided the sun at all costs & use a high factor sunscreen all year round. My hair started to fall out about 9 months ago (there is very little left now) & I am wondering if this is due to lack of vitamin D. I am not keen on taking vitamins as I am unsure as to how they could affect my PV, however if it helps with the hairloss it would be a god send! The hairloss on top of everything else has just been awful.

[karteeka]

hi jazzb, as a nurse i cant say definately that your hair loss is linked to lack of vit d, it could be stress or a residual effect following your cancer treatment. vitamin d is essential to helping prevent the effects of calcium loss and osteo in later years,fish oil also could help.plus a good multivitamin but get one without iron as it effects your pv. good luck- karteeka

[Seea]

Hi with Et taking Vit D is fine. You can have a blood test to see what minerals, vitamins are lacking in your system. A little sun is beneficial to us - 15 min daily to 30% of exposed skin on your body before 11am and after 4pm is beneficial not harmful.

Hope this helps

[Jennytheb in reply to Seea]

Great, at the moment with this weather would be nice to get 5 mins sun a day though! Ha ha, hoping that will change as promised. 😀😀😄

[Rosiedawn]

Hi, I am also a nurse, although retired now and I agree with both the above answers. I also have PV and had my Vit D levels checked and it was a little low and my haematologist and GP both suggested taking a simple Vit D preparation as available in one of the supermarkets. I got the ones in Asda but most stock them. I had the levels checked again about 6 months later and they are now at the desirable level. I will continue to have them checked at the same time as my other blood checks and probably on a yearly basis - just to make sure they stay at the optimum level.

Best wishes, Rosemary.

[jazzyb]

Thanks for your replies, I will definitely get my vitamin D levels checked. Jane x

[Hidden in reply to jazzyb]

Greetings,

When you ask for the vitamin D test, may I suggest that you make sure it is the 25-Hydroxy test.

A MUST read for all:

drfranklipman.com/symptoms-...

One of the cancer groups I belong to suggest that you keep this level at 80-100 especially if your fighting cancer. Please do your own research, I'm not medically trained.

d

[Hidden]

That's good to know as I feel my hair and nails have deteriorated on hydroxycarbamide. I am a bit reluctant about the advice to take multivitamins. I know I mustn't take the ones which contain iron but what about the vitamin B content which I was led to believe boosts your red blood cell production. Is this not right?

[jazzyb]

Thanks for the information HughesMember, an interesting link about vitamin D. Having spent the last few years avoiding the sun at all costs (not too difficult in England!) & covered in factor 50 I'm guessing there's a good chance I will be deficient.

I've always been reluctant to take multivitamins CrazyDaisy as I don't want to take anything that may make our condition worse. I saw my consultant today who confirmed it was ok to take vitamin D. You are correct about the iron & I would also avoid vitamin B as I am sure it increases the number of red cells, which I presume would not be good for us at all.

[Hidden in reply to jazzyb]

Do check with your doctor about vitamin B-12. We take a spray of it a day. A deficiency of Vit B-12 can cause a lot of issues.

Take care.

d

[Jo_L in reply to jazzyb]

I have PV and ET and have been having strong cravings for Marmite. I'm now wondering if I should be stopping myself from eating it?

Has anyone else had a similar craving?

Jo

[Scotslassie in reply to Jo_L]

Yes I crave marmite too. I live on it spread thickly on raisin toast

[StuEP]

Hi JazzyB

Hope you're keeping well. I just came across this post of yours whilst searching for info on vitamins. I thought you might like to know that I got recently tested for calcium/vitamin D and was found to be seriously deficient. Quite a surprise for me after having spend 4/5 weeks in the tropics over summer. Not sure if it's down to the HC or something else.

Anyway, it was only because I was being screened for CFS that the doctor found out about the Vitamin D and he says that it's only recently that they can test for it.

Regards

Stuart

[jazzyb in reply to StuEP]

Hi Stuart, I'm not too bad thanks although was at hospital recently & the Hydroxy is controlling my platelets but not my red cells. They are leaving things for now (so I can bury my head for 3 months) but want to increase my dose & I'm not happy with that. Since being on Hydroxy I've had several bad chest infections & it's not good when you are trying to hold down a job, but hospital say it's coincidence, I'm not at all convinced!

With regards to the vitamin D I too was deficient but put this down to having had melanoma & avoiding the sun & using factor 50 all year. I now have vitamin D capsules on repeat prescription.

Hope you are as well as can be Stuart & have you got a new consultant now Prof Riley has retired?

[jazzyb]

Hi Stuart

I'm not too bad thanks although was at hospital recently & the Hydroxy is controlling my platelets but not my red cells unfortunately. They are leaving things for now (so I can bury my head for three months) but want to increase my dose & I'm not happy with that. Since being on Hydroxy I've had several bad chest infections & it's not good when you are trying to hold down a job, but the hospital say it's just coincidence, I'm not at all convinced!

With regards to the vitamin D I too was deficient but put this down to having had melanoma & avoiding the sun & using factor 50 all year round. I now have vitamin D capsules on repeat prescription.

Hope you are as well as can be Stuart & have you got a new consultant now Prof Riley has retired?