I recently received the same advice from my family Doctor and CLL Specialist. "Make sure you take a vitamin D supplement at 1000 IU per day, but do NOT take a calcium supplement and try to ensure you get sufficient from your diet, not just diary but foods also."
It's also worth mentioning that if you're in Ontario, OHIP will not pay for this test unless your doctor believes it is clinically indicated. You still require a requisition, but will be charged. The cost is around $45 depending which lab you use.
I wasn't exactly surprised by the vit D advice, my levels are on the low side. The Calcium supplements did raise an eyebrow, I guess because although my levels are normal I have been told I have Osteopenia. 'Calcium helps make strong bones' is something I've heard since I was a kid and I'm old enough to remember having milk in school everyday, in cute little glass bottles.
It seems Hypercalcemia is not so much the issue, but I understand that calcium can increase lymphocyte production, especially with low serum calcium. If anyone has any up to date studies on this I'd be interested to hear.
It seems the takeaway is to check with your doctors about vitamin supplements appropriate for you and disease stage.
I also found this paper on Vitamin D supplementation & have included the conclusion. It would be interesting to see results from a clinical study confirm this, although I doubt there is sufficient financial reason to justify.
"In conclusion, our long-term retrospective study demonstrates that the administration of vitamin D to patients with CLL in a watch and wait active surveillance is significantly associated with a longer treatment free survival (in any age) and a longer time to first treatment among young patients (age<=65). A prospective clinical trial is needed to validate results."
FYI: I am a big believer in 'you do you' and I have no strong feelings on this topic. I get that some do feel differently and I respect that. Happy Friday lovely people.
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PoisonDwarf
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Sadly the world of vitamins and supplements is a minefield and I read not to take Vitamin D and calcium at the same time, afraid I don’t remember the reference. I now have osteoporosis and trying to stay well informed.
I’m taking both Vit D n Calcium… CLL labs remain fairly flat in regards to absolute Lymphs, WBCs, Hg, n the other main CLL CBC markers. At least so far. I’m in year 4 on W&W, stage 0, happen to have the lucky q13 mutated CLL markers.
Been taking 2000 ICU of Vit D since dx w/CLL in 2020 as my lab numbers were always towards the low side. My smart CLL doc said it might help prolong need for treatment. Hey, so far so good.
Why I started Calcium supplements (calcitriol 0.25mg, 3/week, plus 2000 mg Tums everyday (yikes!) beggining this year was fact for the past 20 years I have never cracked into the normal calcium range. Lots of 8-8.5s scores during 18 of those 20 years, so “close” to 8.6-10.3 normal. My GPs didn’t seem concerned and I didn’t show low calcium symptoms.
Fast forward to past couple years n Calcium scores dipped into the 7.7s n I started to get many of the low calcium symptoms like… Malaise/weakness, muscle cramps! Oh yeah, big ones at night n often and a list of other symptoms.
Finally, testing done n I have hypoparathyroidism. That’s a mouthful. My parathyroid isn’t working right. I need new parts!
So the ole GP put me on Calcium supplements as noted n my CLL specialist referred me to see an excellent endocrinologist… 3 month wait period this September, to get to the bottom of my quirky symptoms with this kinda rare “ hypoparaT”condition.
Will see if I can bump my Calcium score up n my PTH score too…
Idk… trying to get my head around this latest “condition” along with sudden low protein n albumin scores (first time ever out of range) n super high CRP score, which has to do with inflammation “somewhere” in me. I did yank my shoulder out kinda bad doing home projects n heavy lifting, definitely inflamed that part of me!
So abit of a mess, though good news is it’s not CLL wise but a few other areas n happen to now be taking the double dirty (Vit D plus Calcium). CLL doc ok with it for now but will see what the encronologist says.
Ahh there could be waaaaay nastier battles than this, that I do know!
Be interested to read up on why Calcium supplements are bad for us CLLers. Thanks for the heads up!
Danny I would like to see more evidence because after moving from Osteopenia to Osteoporosis last year and being seen by Rheumatologists in two different hospitals, one who ran through my entire medical history, I was advised to take Calcium supplements.
I'm sorry you have to deal with the hypoparathyroidism on top of the CLL, but glad to know you have switched on and responsive doctors. It doesn't make managing symptoms easier sadly.
It seems you 're already on the early vitamin D supplement that the paper talked about. The calcium supplement is also under medical supervision in your case which I understand is the important part clinically.
I never really thought about calcium & the role it plays before. With CLL which is effectively a cancer of the immune system so many parts are intimately woven, it's like living in a small village where if you kick one twenty limp!
My calcium level is 2.29 mmol/L in the normal range of 2.15 - 2.60 mmol/L for the range the lab uses here. I don't yet understand the chemistry, but my doctor doesn't want it any higher unless it's via food. My dermatologist recently diagnosed calcinosis cutis, which are calcium deposits in the skin but the cause or driver is still unknown. I have the SLL version of CLL so my immune system dumps malignant lymphocytes into the nodes and now calcium into the skin. Nothing really shows in my bloods. I think this is what piqued my interest into the calcium side of things.
As you pointed out though, there are way worse things so onwards & upwards!
the sad part about this advice is that it leads some to take 1000iu per day and think that they have that box checked, it's certainly not the case, for some 1000iu might be enough, for many of us that's not the case. I always find it amusing when they suggest and adult of 225lbs take 1000iu per day, and a kid that weighs 50lbs take 1000iu....keeping in mind D is fat-soluble. The only way anyone knows how much D they need to take it to test, and figure out the vitamin D serum number that you're trying to achieve. When I was diagnosed with CLL I had been taking 3000iu per day for several years, I got tested, my levels were awful. Also be mindful if you increase your daily amount of D, it takes 90 days to reach max. leves in your blood, so if you're going to test, wait at least 90 days after upping the dose.
You and I are on the same page I totally agree with dosing levels.. I feel all adults need to be tested for deficiencies and in some cases hormone levels I have found a London clinic that tests both and then one can work towards better health. Nobody is saying this is a cure but optimum health in vitamins and minerals and hormones particularly bio identical hormones can be very helpful. Thank you. I keep meaning to send you a private message but your previous advice for me and my family has been invaluable and very positive. It’s so good to share all aspects in relation to the management of this condition. In the UK the nutritional part of health is not talked about by our GP’s or hospital doctors which I continually find astonishing., They remain reactive not proactive. We have a few medical doctors/journalists pushing natural health alongside conventional medicine but not enough.
Friend of mine suffered for years with acid reflux: hardly any veggies, lots of takeaway....The lovely girl ended up with a stoma bag! And the best part of it? Not once, not even once(!), did anyone, including the specialist stoma nurse, discuss her diet, in the sense that perhaps it was a contributing factor to her previous ongoing constipation and tummy upsets, which have eventually led to that stoma bag.
I suggested some prunes which she has now put on her regular menu.
You only have to look around you and see how many GPs are actually overweight, and you ask yourself 'don't they know better?'😕
As far as the medical fraternity is concerned, there seems to be a total disconnect between nutrition and health. I do not understand that.
Totally agree. It baffles me. Why some people get it and some people won’t consider anything other than what a doctor says. Having watched the way a hospital operates daily for the last 2 years it’s made me more determined to look after my health as best I can without spending a fortune and doing the basics, drinking quality water home filtered sleeping by taking magnesium to assist me, eating no ultra high processed food and trying to get 5,000 plus steps in a day and finally taking my various supplements. My family too and we all feel well even with our various ongoing health conditions which still pop up from time to time but on the whole are managed with the use of medications and natural health remedies as a back up. I find some people unwilling for some reason to do both. I have a friend who suffered for yeasts with high blood pressure she now takes prescribed supplements including apple cider vinegar and now her blood pressure is controlled. I get we are all different and it was a massive leap of faith to visit her local natural health doctor and for her it has paid off. How good is that.
Thanks for the comments Splash24, I certainly agree with your premise. The only thing I follow blindly is Google maps! I believe self education & knowledge are vital tools. I also consciously check my self confirmation bias due to its hidden nature.
The issue with guidelines is that they are just that - guidelines, a statistical bell curve designed to fit a particular majority. I tend to be an outlier so there's a vested self interest in me knowing if standard guidelines are applicable to me.
It does mean I sometimes don't give sufficient background or context because to me they're a given. To correct that. My blood chemistry is checked fairly regularly & I have a baseline number for my vitamin D level.
A brief example: you mentioned the three month standard for a change in blood levels. Like any guidelines it's a standard that doctors in North America follow.
My 25-Hydroxy Vitamin D was 55.2 mmol/L on December 20th but on June 14, 2024 it was 67.3 from sunlight alone. I'm now taking vitamin D3 at 1000iu a day, plus lots of sunshine, so it will be interesting to see the change in mid-September, which is the three month mark. I know I quoted a 6 month period but I live in Ontario, Canada so not a lot of sunshine from December until April and I wasn't taking a vitamin D supplement.
The real surprise was the advice on calcium. A rather cursory search doesn't reveal a lot of recent data & I suspect that science doesn't know the whole story, but the concern seems to be in the case of neoplasms, vitamin D can drive up calcium levels in some people. Secondary hypercalcemia is apparently rare but it can be lethal. I could of course have just read the science wrong.
I try and keep my number at 125ish nmol/l. my theory is that I want it over 100, so if it dips a bit, in all probability it stays over 100, and it still well under 200 which I don't want to go over. I've kept it at this level for over 10 years, I'm still working so out in the public a lot, I've had almost no issue with flu's/infections/Cvd ect. (knock on wood)
It's great that you're not plagued with infections like so many with CLL. I've been lucky that way too, despite having a predominantly people facing job and working with early 20 something colleagues who live in communal housing. I lived with teenagers for 15 years, hearing the antics unfiltered as opposed to dealing with the consequences is next level education. Mosquito bites though are a totally different story. 🤣
My target level is 75 or just above, but I'm under 5ft so that equates.
I like “you do you”! That works for me. I run things my oncologist and happy with his feedback. I have also consulted with the pharmacist connected to my BTK inhibitor. Thanks for the interesting discussion. 😊
I was diagnosed about 10 years ago and was on w & w for 6+ years. My Canadian cll specialist strongly advised a vitamin D supplement at our first meeting
I don't understand why ur doc said no calcium. I have had OP for 16 years and have taken calcium along with my D3. My hematologist has no issue with me taking it. Very important for OP.
I think this maybe goes to individuality of our body's and differences in personal circumstances? One size does not fit all. With OP you've run it by your Hematologist & taking calcium works for you. I think that's great.
Currently I have Osteopenia, so I was surprised by the recommendation myself. My calcium levels are still within normal range, however my dermatologist has diagnosed calcinosis cutis or calcium deposits in the skin. The cause/driver is unknown at the moment. Potentially that could play a role in the advice. Time will tell!
I have an MRI of my cervical spine scheduled for July 22nd because I of radiculopathy at C7, but not the pain associated with a disc problem. I also have peripheral neuropathy and need surgery on both wrists for carpal tunnel.
Vitamin D, calcium and vitamin K2 work in synergy to keep your bones healthy. Any of them insufficient can lead to osteoporosis. I do daily full body Sun exposure in season and supplement K2 and calcium daily. Off season I take 2000 i. u vitamin D daily.
They work in synergy absolutely when they're in sync. The body is naturally designed to be self regulating and adjust accordingly, it's when they're out of whack issues arise. I'm a bit of a gear head who likes speed. I got stopped by a cop on my way to work, he asked "chugging a bit, gonna make it?"
My response: We talking about me or the car? The car's fine, me on the other hand ...
Clear communication aside, my point being, cars come with manuals, every part is known so it can be repaired, fine tuned, even suped up just because you can ... ; )
No one's even written a human body manual yet, let alone a complete individual one. No smart human would knowingly put diesel in a petrol engine or run an electric car entirely on fuel because they couldn't work the charger. Still, humans do that because there isn't a manual to check & anyway how many actually read instructions!
You're the expert on your bodies needs, your manual works for you & I truly respect and applaud that. Mine has a few quirks, it's like it threw out it's own manual. Technically in humans it's called neurodivergence; a signaling issue that even google has no road map for!
That explains my you do you, I'll do me mantra. We can dance differently without it causing disharmony.
I'm not sure what is it that you are saying. D, K2 and Calcium are all needed for healthy bones. If you belong to the human race, you need them. Best to you too.
Thanks for posting this. I like staying informed and it is always good to find updated information. I was advised by wholistic practioner to get my calcium from food and from other sources than dairy I take 2000 of Vitamin D a day and have done so for years. Currently on w and W.
Please note "fortified" cereals, plant based milk and multivitamins often contain up to 300 mg of Calcium Citrate or Carbonate.
I use chronometer app on iPhone to diary what I eat. Endocrinologist specializing in bone health said I need to get 1200 mags of calcium per day. If I fall short through a food diet I can supplement with 450 mags of calcium citrate. Better to get calcium through food. Supplements in larger doses can cause kidney stones and coronary artery disease.
Hi, interesting to read your found information on Vit D. I was diagnosed with CLL January 2021. My GP back then seemed to know more about CLL than the two haematologist I saw back then. At diagnosis my GP recommended I start taking regular Vit D. He explained why but I don’t remember the reason. He also commenced me on Rosuvastatin 5mg daily, and told me although my cholesterol is good I am prescribing this for Apoptosis. I have continued to take these meds since first diagnosed. Have they helped? I don’t know, but I am still W&W and my bloods are all good except my lymphocytes now being at 30. However, even that is not bad for having CLL. Is it??
Not sure how I just found your post, but wanted to say something about calcium supplements. I recently did a Life Screening (2nd time) because first time I did it was the first time I was informed that I had very LOW vitamin D level (and the next year I believe I started getting CLL), This time they fount a bit of plaque in one of my carotid arteries and in reading up on that, the big villain is calcium. I already knew to take K with vitamin D, but have started to cut back calcium supplements. Every so often I get leg cramps which get better with calcium but otherwise, I am not taking it. From everything I've read, magnesium is more important for us to take than calcium. Complex stuff, but just thought I'd add this (calcium involved in plaque in arteries).
Here in US there is this commercial set up where they do certain tests every so often all around, in each community, and charge for it. If you google "Lifeline Screening", I bet it will pop up. It is likely only a US thing. I think you can choose what to be tested for, but a big one for me is carotid artery -- no docs I have ever do that. Here is what they tested me for this time. I bet the atrial fibrillation test can't be but of so much value, since they would have to catch it, I'd think.
Abdominal Aortic Aneurysm Screening
Atrial Fibrillation
Carotid Artery Disease Screening
Peripheral Arterial Disease Screening
They used to do some blood work, not sure if they still do, but it was from this that I learned of my desperately low vitamin D, year before CLL signs developed (of course, got right on improving vitamin D but no doc had ever before tested me. ) This time, they reported they found some "mild" plaque in one of my arteries, which started me researching and seeing the role calcium plays in plaque (which is made up of calcium, I think maybe).
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