Newbie

[MarmiteCLL]

Diagnosed in March 17 but told that bloods showed an issue in 2013! Appear to have Vit D deficiency and wonder if others on W&W have encountered this? Taking tablets has helped the aches and lethargy and almost back to just below minimum levels

[Spacee]

I am not surprised your Vit D levels are low. Mine are. Were in 2001 when I asked my doc to check them. Much to his surprise, they were. I do not have CLL. My hubby does. He is a golfer and I think his Vit D’s are ok. I am glad to hear the tablets have helped you. BTW, I live in Florida and my doc thought you could get enough Vit D just walking to the car in a parking lot!

Best, Linda.

[MarmiteCLL in reply to Spacee]

Thanks Linda. Trust you changed doctors😂

[Spacee in reply to MarmiteCLL]

Haha. Not yet. Took me 20 docs to find one that would work with me and my condition. Chronic Fatigue Syndrome. But I do see your point!

Linda

[HailMary-USA in reply to Spacee]

Linda, I feel your pain with respect to doctors treating CFS; and I suspect there is a connection between CFS and CLL.

Both are on my list of conditions, as well as prior Vitamin D deficiency.

Marmite, I was very deficient in D when I asked to be tested many years ago. My maintenance dose of supplementation is now 6000 iu Vitamin D3 softgels daily.

Best wishes to you both,

Mary

[AussieNeil Partner Administrator]

Welcome to our community, where you'll find that you have plenty of company having a vitamin D deficiency. Mayo Clinic are even conducting a trial to see if taking a vitamin D supplement slows CLL progression. They are trying to understand the relationship.

sciencedaily.com/releases/2...

Neil

[MarmiteCLL in reply to AussieNeil]

Thanks Neil. Interesting article and something I will progress in gaining more knowledge Cheers

[WinJ3]

Hi Marmite,

The doctor put me on a vitamin D supplement for my deficiency. It didn’t make me feel any different or help my CLL.

[MarmiteCLL in reply to WinJ3]

Sorry that you have not felt any difference. I do not think it helps my CLL but did help my tiredness( not the fatigue which I still get)

[Chic789]

When I received my CLL diagnosis December 2018, it was also discovered that I had Vitamin D deficiency. I too am on W&W and my D levels have risen slowly on 2400 iu daily. Finally in the low normal range-my Doc wants me to eventually reach the high normal range.

[MarmiteCLL in reply to Chic789]

Good to hear. I am on 2400 iu and dropping to 1400 as reaching the lower normal range.

[Maisey0]

I too was Vif D deficient on diagnosis and now take a daily supplement with i think has really helped with the tiredness, also take a Turmeric supplement. Not sure if thats a placebo but i do have more energy

[Redlion]

Vitamin D deficiency seems to be quite common among CLL'ers if this forum is anything to go by, and I think it applies to W&W and those in treatment. A recent vitamin profile blood test showed that I had a moderate vitamin D deficiency which I now address with an OTC supplement. It is also worth noting that the long term use of PPI's can also cause a range of vitamin deficiencies some of which can lead to both physical and psychological issues. It is good that your GP has diagnosed your deficiency so that it can be addressed but for many it is not until a serious side effect occurs that it is discovered. A periodic blood test to check for vitamin deficiency might not be a bad idea.

[MarmiteCLL in reply to Redlion]

Great feedback, thanks. I had to force the GP to give me a blood test as she knew nothing about CLL and doubted me. The day after the test she phoned me and gave me 20,000 iu boost and further tablets. Regular blood tests now undertaken.

[Rafe]

Hi Marmite. My Dr. is at the Mayo, My bloodwork is Vitamin D deficient and he said that their research indicates poorer outcomes of treatment in those with vitamin D deficiencies. He has me on 2000units a day

[MarmiteCLL in reply to Rafe]

Thanks Rafe. Think I will stay with 2000 units too.

[Rafe in reply to MarmiteCLL]

Best wishes

[MGirl-Aust]

Hi Marmite,

Welcome to the forum! It’s a great site for sharing information and support.

I had mild vitamin D deficiency When I was diagnosed and my haematologist also recommended 2000 IU daily. I’m not sure if this is indefinitely - I’ll check with him on my next visit.

Michelle

[SenateurDupont]

I had a huge vitamin D deficiency before my CLL was diagnosed. Look like it was one of the first symptoms. My doctor said I was at 10% of my vitamin D "bank". So for one month I took 10,000ui five days a week and now I take 100ui once a week, my vitamin D levels are normal now.

[MarmiteCLL in reply to SenateurDupont]

Good to hear and trust things remain good for you.