I have been informed by the NHS that I will be eligible to receive vitamin D supplies from January. I note that patients with blood cancers should check first. I have ET (essential thrombocythemia). Would it be safe to take vitamin D?
Yes I saw this as well it’s something to do with calcium levels so not sure now whether to take it or not?
I do take it on and off anyway and did have raised calcium levels before treatment but as far as I know they are ok now.
Hi @Radius and @AnnD, firstly a great big welcome to our forum @Radius, a good question that many of us will be wondering, part of me is thinking that I was shielding all summer so I didn’t get any ‘rays’, so my vit D does need supplementing, but I think I will be checking with GP or medical team as we all have differing medical histories. I await hearing from others.
Hello all Yes we would encourage people to check with a member of their healthcare team such as GP, clinical nurse specialist or consultant before they take any supplements including vitamin D, so they can get advice in the context of their individual circumstances.
Hello, vitamin D is definitely a supplement that is beneficial, especially for cancer and post cancer patients
However its not advisable to take above the daily recommended amount unless prescribed by GP or consultant - you have to have your levels checked regularly as its not good to have too much. Vit D is a fat soluble vit so stored in the body unlike other vitamins, which is why levels need to be checked. I would definitely check with your GP/consultant due to your diagnosis first but worth looking into
I’m a pharmacy technician and am also on high strength VitD from my consultant, my levels were extremely low after treatment.
Hope this helps
I clicked on the link in the email from Matt Hancock and it says you shouldn’t ask for it if you have cancer which is contradictory as they only offered it because we were on the vulnerable list. Usual clarity it seems.
I received an email regarding supply of vitamin D too, together with application to get a supply.
There was a warning with this advising certain vulnerable people should not take it, ie if you’ve had kidney stones now or in the past or have certain forms of cancer, I have had a kidney stone diagnosed long before I developed Myelodisplasia in November 2014 which hasn’t given me any problems to date.
If you have extra dosages of vitamin D it can lead to an overload of calcium in your body.
I’m checking with my clinical team when I go for my pre chemo b/t on 3/12 prior to my 78th monthly cycle of Azacitidine.
I’m extremely fortunate to have survived so long with no side effects and have no wish to jeopardise my treatment with excess doses of any further medication which may or may not improve protection against COVID.
I had AML & SCT 12 yrs ago & a few years back my memory wasn’t great. This is a worry for me because my Mum has Altzeimers. One day a random item from the Altzeimer Society popped up on my FAcebook, which listed other reasons for memory problems.
One was a lack of Vitamin D. I dug a little deeper & discovered other side effects of a lack.
I read these out to my husband & we ticked them off one by one.
Had a blood test & have taken a high dose ever since.
I receive these as part of my NHS prescribed medications.
Hi there, I have ET Jak2 pos. my haematologist who i see every 3 months actually put my vitamin D up to 2,000 iu after my bloods showed a level of 40. My GP had previously started me on 1,000.
Ask your hemo at your next visit or call your nurse but i have the same as you and they wanted me on it, especially after October.
I also have ET jak2 positive. I usually see my haematologist every 2/3 months…i have been having scheduled telephone calls since covid. I’ve no idea what my vitamin D is like. I also recieved a letter from government/Matt Hancock about receiving free vitamin D…think I will ask my consultant on my next call…same goes for the vaccine…really not sure about having that.
i’ve taken Alice_BloodCancerUK’s advice and checked with my GP.
I also checked with my consultant and he said it was fine for me. Worth a check with your team.