Vit D3 has been in the news recently in connection with cll. I asked my GP to add that test to the recent blood tests. Came back with a score of 30 the desired level is 75 and the recommended lower limit is around 50. Since being on d3 suppliments 25ug have felt more positive and had more energy so managed more activity. Better weather has certainly helped too, blue bue bells are comming out in force. Will have a followup blood test in 3 months to see where my level has got to.
I mentioned this to another cll friend and she got here vit d3 level checked - came back with a 7 - she has reported more energy since being on suppliments.
After the weather in past year not surprising that many people would be low on their vitamin d3 - the combination of fatigue reducing activity outdoors and total lack of sunshine when you did. The last few days may have helped with the sunshine increasing our natural vit d3 and spirits too.
Will be feeding back on this to my consultant at the next checkup
So worth getting your level checked and getting your levels up if low and may slow the progression of the cll too.
This is a timely reminder for both those of us in the northern hemisphere (levels could be low now due to less sun exposure overwinter) and southern hemisphere (heading into winter so some of us may need to supplement our levels). My haematologist was I think somewhat sceptical when I asked for mine to be checked after I heard about the Mayo paper, but they were indeed just below the recommended lower limit.
Taking a supplement certainly coincided with reduced fatigue for me and my GP and haematologist now monitor my levels.
Given the paper you cited and the increased precautions we should be taking with sun exposure due to our higher skin cancer risk, I'd recommend everyone with CLL should have their vitamin D levels monitored. While it is hard to overdose on vitamin D, we should also bear in mind that further research hasn't been done yet to find out WHY there is the correlation between vitamin D levels and survival. If we boost our levels, are we feeding the CLL (with CLL growth perhaps being responsible for depleted levels) or are higher levels helping our bodies to resist CLL? Frustratingly we just don't know.
For me, the improved quality of life was worth it, but some of us might want to tread cautiously until we know more. Anyone taking vitamin D3 supplements should also have follow up blood tests to check they are taking the right amount to get them into the normal range and not exceed it, bearing in mind that people report a very wide range in how much D3 they need to take to get into the normal range and that this will change with sun exposure, etc.
Nobody knows what supplementation of 25(OH)D does in CLL, but we should have a better understanding in 3 years upon completion of the new Mayo Clinic trial.
'This partially randomized clinical trial studies cholecalciferol in improving survival in patients with newly diagnosed cancer with vitamin D insufficiency. Vitamin D replacement may improve tumor response and survival and delay time to treatment in patients with cancer who are vitamin D insufficient.'
CLL/SLL will play a roll in this trial and will be monitored outside other cancers in the study...
I read about this issue on CLL Topics, backed up with advice from the CLL conference here in UK. I started taking VitD3 in oil capsules (better absorption in oil rather than tablet form) and found after a month of taking it, that there was a marked difference in my energy levels. Now I dont crash in the afternoon and have to lie down, it has really helped with the dreaded CLL fatigue.
"What is less clear is whether low vitamin D levels are associated with other chronic diseases such as bowel cancer, diabetes, heart disease, arthritis, infections and the overall risk of dying. This is because these low vitamin D levels could either be the cause or result of ill health." This is exactly the situation that we are in and why the Mayo Vitamin D3 study is so important to us:
I am told I can only have one Vit d test per annum in the uk on the NHS. How often are others of you monitoring the level, and do you pay privately through Spire or some other way?
Since being given suppliments I have had my levels checked every 3 months. I am continuing with the suppliments and have reached the normal level. Will have more tests if the GP thinks I need them to be sure I am not pushing levels too high. An annual check is probably sufficient if tests come back normal and nothing has changed
I take quite a lot of supplements including Vit d3.
Through my GP I had my blood tested in December which showed a low level in B12, the tests were repeated at the begining of February and the B12 was normal.
I have never heard of the 'one Vit d test per annum' rule.
I've been allowed x2 tests at 6 monthly intervals (end of summer and winter), the second one next week. Got reasonable result (100 nmol/L) after first one (no supplements then but a great summer). Been on 21ug since (comb of pills). In Dec my lymph count was starting to stabilise, but had a test last week and its gone up about 50% since start of Dec. So perhaps I either need lots more pills, or some sunshine if vit D is the issue - find out in a week or so. I'll post all the numbers then.
P.S. For anyone new to CLL note we have an increased risk of skin cancer, so any time out in the sun should be very carefully controlled. My dad who had CLL did manage to get himself minor skin cancer, so I fully believe that risk. Lots of good previous info here on HU - thanks all.
My experience was it helped my energy levels allowing me to be more active than I had been for a year or more. Even with the good summer and suppliments it took over 6 months to get to normal levels. My counts continue to go up with some wobbles but can fit a reasonable straight line. Mayo trial may show if there is a link good or bad with the vit d3 levels - time will tell.
Here in BC, Canada the health funders have stopped paying for 25(OH)D test, unless they are ordered by a specialist for specific reasons (osteoporosis etc) or children under <19 yo. There was a 10 fold increase in testing over the past 5 years, most considered to be unnecessary...
So now you pay about $60 a test out of pocket...
I could argue that CLL is a bone disorder, but I just pay it every 6 months, life is too short... I have bigger fish to fry...
It seems the dose of D3 we need is highly individual. What someone else needs may be too much or too little for you. It can sometimes take a few vitamin D tests after changes in D3 taken before we get the supplement dose right.
My Vit D stay low even when on supplements. Last year my GP gave me pharmaceutical D. I felt wonderful! Vit D is my drug of choice. Just on the commercial stuff now and it's not the same.
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Not much energy
Iola ghulam
Bone Marrow Biopsy showing Manoclonal B Lymphocytosis
