Like many CLL patients I always take Vitamin D in the winter. I have to be honest that I’ve not paid much attention to dose strengths until the Covid pandemic. A few months ago I bought some Vitamin D capsules that were on the shelf at the pharmacy without really reading the label. I then found, taking one each day with breakfast, that my stomach was feeling uncomfortable afterwards.
When I checked the NHS website that I realised the recommended daily dose is 10mg but the ones I’d bought were much bigger. The description on the bottle of ‘pharmacy strength’ doesn’t really tell you anything. Obviously there are some people who do need a much higher strength.
I contacted Day Lewis (the retailer) who were helpful and admitted that the labelling was unhelpful and they were thinking of changing it. They’ve had a run on their 10mg tablets as so many people are taking them.
They also explained that as Vitamin D taken through their tablets (something to do with the fat content?) is retained for some days in the body, splitting these large tablets so that effectively taking one tablet per week should suffice.
Lesson learned; research what dose you actually need and read the label!
Written by
Snellybob
To view profiles and participate in discussions please or .
I also take Vitamin D.....4000IUs a day. However, that was based on the recommendation of my physician after a Vitamin D test was taken. I will have another test done in 6 months to see if my levels are within normal range. It's a good idea to have a Vitamin D test done prior to taking it. If levels are within a normal range, you may not need it. Mine were definitely not in the normal range and I needed supplementation.
‘Sometimes the amount of vitamin D is expressed as International Units (IU). 1 microgram of vitamin D is equal to 40 IU. So 10 micrograms of vitamin D is equal to 400 IU.’
(IU means International Unit incidentally.)
‘Taking too many vitamin D supplements over a long period of time can cause too much calcium to build up in the body (hypercalcaemia). This can weaken the bones and damage the kidneys and the heart.
If you choose to take vitamin D supplements, 10 micrograms a day will be enough for most people.
Do not take more than 100 micrograms (4,000 IU) of vitamin D a day as it could be harmful. This applies to adults, including pregnant and breastfeeding women and the elderly, and children aged 11 to 17 years.’
It’s advisable to seek medical advice on required dosage and for your doctor to do a blood test for deficiencies. In truth both my haematologist and GP didn’t seem well informed on this issue. I’m presently taking 1,000 IU of VitD 3 due to lockdown and lack of exposure to sunlight. I’ve never been offered re-testing.
I’ve heard of dosages much higher than this being used however. I’d be cautious especially when labelling is ambiguous as in this case.
It's amazing and discouraging that there is so much misinformation on Vit D. First, doctors by and large are not up on nutritional supplements. They have a lot of stuff to stay on top of. Many doctors are skeptical about supplements. It's not a class in many medical schools. Vitamin D is a HORMONE crucial for immunity. Immunity T cells get signals from it ( perhaps why there is a link with viral...covid...immunity.) Optimal level from my research is 50 to 80 ng/ml. Optimal NOT minimum..there is a difference!. It takes much time for beaurocratic government recommendations to catch up with science. Sunscreen blocks production of Vit D. Fat ABSORBS vit D and it is trapped in fat cells doing you no good. So if you are overweight dosage advice may be way off.! Conclusion: demand and pay for the blood test out of pocket if necessary a Vit D blood test. It's the only way not to be just guessing. Also one should prefer D3 (cholecalciferol) over D2 and consider taking Vit K with it, if Vit D is taken to help increase bone density. Consult with your doctor of course but don't be surprised if they are not too knowledgable. In my CLL jouney if I've learned one thing it is that sone doctors typically have a very limited knowledge of topics they don't actually deal with...particularly nutrition. They are not nutritionists!
many people have to take more than 4000iu per day, I was one, at 4000iu per day I was still deficient, the amount is not relevant, it is the resulting D serum level that is relevant, pick a dose, take it for 90 days and get TESTED and adjust accordingly. D is fat soluable, some will store in fat cells and will not do what it is supposed to, so with D size matters.
Thanks. That's what I've been taking 400 IU of Vit. D. We've had very little sunshine this winter. But when it is sunny outside, I make a point of going out for a half hour even if it's cold to get some natural Vit. D.
As mentioned any vitamin intake should be done by the guidance of your doctor and blood test to check the levels. I have osteoporosis so 18+ years ago before CLL my doc had me take prescription of D3 50,000 iu for 6 weeks. Then 2000 iu a day. Been on that for 18 years. I am in the sun everyday but get nothing naturally. I just had my vitamin D checked. I was barely over the normal range. But I am glad they didn't want to increase it.
My vitamin B-12 got low years ago so my doc put me on 1000 mg a day. After 2 years my levels were too high. My PCP didn't really say anything but I decided to cut it down to 500. I let him know a year later. Then it was still close to the higher range so I took 250. After 2 years they stopped making 250 doses so I take 500 every other day. Even tho my PCP is amazing, some times they just look to see if levels are normal. If a range is 200-800 and I am 799, I Iike to make adjustments.
This is also a TABLET form, which will have a lot of excipients (ingredients used to actually make a tablet, only a small amount is actual active ingredient) of a Fat Soluble active ingredient. A gelcap will be smaller, and have much less excipients likely to irritate the stomach. 2500IU isn't a huge dose, I take a 50,000IU gelcap Rx strength weekly, it's a little larger than a pea. I don't think it's the Vit D per se that might be bothering your stomach, but the excipients.
And as everyone is saying, even though this is available without a prescription, you really should know your levels & not take it unless you need it.
There's been some discussion of the optimum levels of Vit D in cancer patients. While levels <20 mg/ml are considered low by Cleveland Heart Lab, and optimal is >=30 ng/ml, they state a level isn't considered high risk until >150 ng/ml so there's a lot of leeway.
Here's some relatively new data indicating higher Vit D levels are associated with decreased cancer risk in normal weight individuals:
My own Vit D level was 87.9 ng/ml last Nov. My total calcium remains low normal or just under normal. I cut back on my Vit D a bit (I had been taking about 60-65K IU weekly to get that level, the previous year my level was 19.2 ng/ml) to get my level to drop to 80 ng/ml, since there is data indicating sustained levels above 80 ng/ml can cause toxicity & elevated calcium levels. Here's a post from a Harvard doc regarding Vit D:
I buy gelcap forms of any med if I can. They cost a little more, but I have loose stools to begin with, and "excipient induced diarrhea" is something I want to avoid. All those extra particles just pull water into your GI tract. So called "inert" ingredients aren't necessarily inert!
When I was first diagnosed with CLL 2 years ago, my Vitamin D level was critically low. With supplements and labs to monitor the results I’ve kept it around 50. Just a caution to all-don’t forget to check the Vitamin D content in other supplements you may be taking. For example, both my Centrum Silver multivitamin and my Calcium with D supplements each contain 1000iu of D3. To that, I add 2000iu of D3 daily and an additional 2000iu twice weekly. This regiment has worked consistently well for me. Every one is different so please remember to follow up with your doctor for labs and advice.
The label in the photo shows 62.5 MICROgrams not MILLIgrams. It can be confusing if you do not recognize the Greek letter mu which looks somewhat like a U or an M.
That is why many places now abbreviate microgram as mcg instead of using the Greek letter Mu followed by a "g".
Bottom line -- the best way to measure and compare Vitamin D strengths is in IU (International Units.)
1000 mcg = 1 mg
1 IU = 0.025 mcg (This is for Vitamin D -- it is different for other vitamins)
My D and B levels were first tested when I was diagnosed with CLL (2003). Vitamin D, at that time, was a very active topic in CLL circles in the US, especially D2 vs D3. My D (sufficient sun - I just don't absorb it) and B12 (vegetarian probably a factor) were both way low. I was started on mega doses of D2 (prescription in the US) but switched to D3. It took about 2 years, with frequent monitoring, to find the dose that put me in my target range - @80 at that time). My new nephrologist now wants me no higher than 60. It takes a really high dose for me to maintain that. Good point about looking at what other supplements contain. I was getting a lot of D3 from other sources without realizing it. Check calcium supplements and multi vitamins, especially.
My B12 shot up immediately and I was adjusting that down while adjusting the D up. All of my doctors (I feel like I collect them like others collect coins or stamps) monitor my vitamin levels. I feel fortunate to have a team with every member looking at this from their area of expertise.
Ask before adding Vitamin K to your supplements! It can cause problems for some (it's out for me). Over the counter does not mean safe for all. The older I get, the more careful I've gotten about reading labels and inserts for warnings, side effects, and interactions.
Interesting that in the above thread people use "prescription strength" - D2 in the US, but I don't know about other countries - "D2/D3", and just "vitamin D" somewhat interchangeably. With the new advice about vitamin D and COVID I'm surprised that that isn't a part of the conversation.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Vitamin D interaction with Acalabrutinib/Ibrutinib??
How long prior to Vit D & B12 test should I stop taking these supplements?
Vitamin D & Calcium Supplements - current advice from Canadian Doctors. 
