Hey everyone. A bit overwhelmed here after reading up on Vitamin D. My level 2 weeks ago was 13.9; saw my family doc today. He prescribed 50,000IUs weekly x 12 weeks. Then redraw level Feb 1st. He said at that point in time he won't be surprised if it's still a little low. The research speaks about toxicity, about Vitamin D raising calcium levels causing hypercalcemia which has its own set of problems, about Vitamin D needing to be taken WITH calcium (the hell?), about the lag time for D levels to rise....I'm 100% overwhelmed. I don't even know where to start. If it takes months to increase then it will take months to decrease. So if I become toxic I'm screwed?? Is it safer to take 10,000IUs daily for a month then switch to 5,000IUs for maintenance? A few of you guys have attempted to guide me a couple weeks ago and I was confident until speaking with my doc today and after reading up on this. Now my head is just spinning.
You are here
You have nothing to worry about and your doctor is giving you the right instructions. He will monitor your progress and get you back to a good, safe level. It does take weeks and months, rather than days, but you're in no danger while it slowly comes up. The way he is doing this is standard. When you get above 20 you can have a discussion with him about how to make it higher (per Scuba's advice for CML patients). I have been able to get mine up to 48 by taking 2000 units daily, for instance. (This was, of course, after the big push similar to your prescription that got me to around 30 after being at 17.) You will have your serum calcium tested all the way along, so you don't need to worry about it getting too high. People don't have to worry about that unless their vitamin D levels get up around 75-100, which is too high. You'd have to be taking a shipload of vitamin D capsules to get there!
Scuba does suggest taking vitamin K2 along with the vitamin D3 and I'm sure he'll be along here to help you with that. My onc, nephrologist, and general practitioner did not think it necessary. And, you might be confusing calcium with Calcitriol? Just a possible guess. That is sometimes prescribed along with vitamin D3 but only in a chronic renal insufficiency context. If you're nervous about this angle, take a look at your creatinine and estimated GFR (on your CMP) and maybe ask your doctor if you should have your parathyroid hormone level checked. Absent any trouble with those, you don't need to add Calcitriol to the mix. I think you can relax and trust your doctor. He's watching for all this so you don't need to, I think. Just get that 13 up past 20 for now!
Vitamin D is less a vitamin and more like a hormone. Our bodies will make vitamin D when exposed to sunlight. Unfortunately we don't get out in the sun enough especially in winter months. Low vitamin D - especially your levels from two weeks ago can lead to depression, elevated risk of cancer - especially breast cancer in women and weak bones. Fortunately we can supplement to get our vitamin D levels back up.
It is best to raise your vitamin D level slowly and to monitor blood levels every 3 months until you establish your new normal. Vitamin D half life in the blood is about two months. This means that if you do not take any vitamin D (or expose to the sun), your blood levels will fall by half. Increasing blood level of vitamin D takes time too and is best done slowly. 50,000 IU's per week is fine, but should be done in doses no more than 10,000 per day. The normal range is reported to be between 30-50 ng/ml. Recent research suggests this is too low and in fact, for people with cancer (like CML), it needs to be much higher. I maintain my blood level around 70 ng/ml. It has fallen to as low as 52 and has risen as high as 80. I started at 17 ng/ml and it took six months to get my levels up above 60.
The reason for all of the concern about calcium and vitamin D is because of the poorly explained notion that vitamin D can cause hypercalcemia. This is only half the story. Vitamin D indeed regulates calcium uptake into the body and yes - if you overdose on vitamin D AND take calcium, this can lead to hypercalcemia. But you would have to take a huge amount of vitamin D, way above 10,000 IU's per day for this to happen. AND it would only happen by taking calcium supplements along with vitamin D. I do not recommend calcium supplementation at all. There is plenty of calcium in food especially if you like veggies. So why has this misunderstanding occurred.
Vitamin D does not work alone. It needs vitamin K2 to work properly. Vitamin K2 moves calcium out of soft tissue and blood to the bone where vitamin D does its thing. This is important. Lack of vitamin K2 is the reason why calcium ends up in the wrong places and leads to osteoporosis and hardening of the arteries as well as hypercalcemia. Taking calcium along with vitamin D just ends up putting more calcium into the blood out of the bones and causes all sorts of problems. By taking vitamin K2 along with D3, your body will start to move calcium out of soft tissue and put it into bone. A normal diet provides the calcium needed. Over time, hard arteries soften, blood calcium levels normalize and bones harden. Lack of vitamin K2 is the reason women get osteoporosis NOT lack of calcium (or vitamin D for that matter).
(in the article above - they use the title "vitamin K" - they mean vitamin K2.
It is near impossible to overdo vitamin D when you have plenty of K2 around. It's natures dynamic duo to keep the balance. Still - take no more than 10,000 I.U's per day (along with K2) and overdose is not going to happen. Keep in mind - when your body is exposed to noon time sun during summer, your body will make 10,000 IU's of vitamin D in 30 minutes. But you need tropical sun in places like Cozumel for this to happen - and I will be there in a few days! (that's why I am called Scuba). Of course wearing a wet suit doesn't help you get much sun - but I digress.
To maintain my own vitamin D level, I take 5,000 IU's vitamin D3 one day followed by 10,000 IU's the following day during winter months (Sept - March). I take only 5,000 IU's per day during summer and this is sufficient to keep me in the 60-80 ng/ml range. I take 200 mcg of vitamin K2 (aka menanquinone, MK-7) every day. Both K2 and D3 should be taken with food that has fat for better absorption (D3 & K2 are fat soluble). I also eat Japanese Natto which is loaded with K2. To get my vitamin D level up from 17 ng/ml, I took 10,000 IU's per day for six weeks and then tested. My blood level rose to 40 ng/ml. A slow process.
An interesting observation I noted after increasing my vitamin D levels - I no longer get sick. I haven't had the flu or a cold in five years. I used to get colds 2-3 times per year and always got the flu. Since raising my vitamin D levels to where they are currently, my immune system is much healthier. Vitamin D activates T-cells which attack disease - including cancer. I sometimes think I developed CML because I had a weakened immune system due to low vitamin D which enabled the cancer to get a foothold. I am PCRU on a very low dose of Sprcyel, I suspect in part, because I maintain a healthy level of vitamin D. And my hardened arteries were reversed (from 70% in 2013 to less than 5% this year).
Hope this helps.
Thank you, Scuba! 2 things:
1) Enjoy Cozumel!
2) My platelet count continues to slowly rise. According to my oncologist, he sees this with patients on Tasigna. Currently I'm at 515k. Doesn't Vitamin K enhance coagulation? If so, am I putting myself at risk for blood clots (stroke, PE, DVT, etc) by taking a Vit K2 supplement considering my elevated platelets?
It is important to note that vitamin K2 is not vitamin "K" . Vitamin K1 and K2 are very different from each other and belong to the family of "K" vitamins because they share a 'quinone' structure. But each vitamin (i.e. K1; K2) does different things in the body.
Vitamin K2 will not impact blood clotting. Vitamin K1 is involved in clotting, not K2. If anything, vitamin K2 will help keep your blood flowing (by preventing calcium build-up).
I would only be concerned about vitamin K1 intake if I were taking an anti-clotting drug like Coumadin. Vitamin K2, however, is vital for bone health and keeping vitamin D balanced in the blood.
My platelet count at Dx was 749, not unusual for CML. # weeks on 600 mg/day Tasigna and it was all the way down to 136 a bit too slow. For last 20 months it has been between 180 and 220 or on the lower end of normal. Before CML, I was always around 250 - 275, so Tasigna has caused my platelets to be a bit lower than my pre-CML norm, certainly not higher. Funny how these TKI's affect each of us differently.
Just want to say thank you to you. I read a lot of what you posted about Vit D, K2 and Curcumin and although I was already taking a lot of Curcumin, what really changed my life for the better early this year was the addition of Vit D. It helped my depression so much that I really couldn't believe it. That, and the addition of l-tyrosine was life changing. So thanks again, Scuba.
Thank you for the kind words. I read a great deal about Curcumin & vitamin D regarding depression and was surprised at the significant amount of information that was available.
There is a scientific basis for vitamin D insufficiency and depression:
And coupled with Curcumin - depression could very well be treated naturally!
I have often said and wrote that my CML diagnosis improved my quality of life! Vitamin D knowledge as well as Curcumin and related would not have happened without CML life altering experience. Something to be thankful for - this Thanksgiving (U.S.A) - knowledge, that is - not CML. Given a choice - ... hmmm. that's tough (i.e. CML helping me to live better!).