Vitamin D (D3) - UK

[Oleboyredw-uk]

Thought I'd share my experience of the last two weeks with everyone. Most specifically this is for UK people, mileage for others may vary.

So, following Paula's doc and the news about NHS recommending Vitamin D supplements I toddled off to the GP the week before last. I asked for a Vitamin D test and Pneumococcal test.

Went back for results today. Pneumococcal results not back but Vitamin D verdict was in. My Vitamin D level is below recommended at 24.6 with min guidance of 25.

I was not at all surprised, her view was it is common for our latitude. My contribution was that "plus a bit of an own-goal covering up due to CLL".

Very pleased with GP was straight onto it with recommendations. I have 15 days high dose Vitamin D3 supplement (20,000 IU per day) then onto a regular 800 IU per day. Final step to book an appointment for six weeks time to do another blood test to check the results.

Today has been one of those good days we all like, plus I was out in the garden in the sun afterwards (covered up of course).

best, rob

[Newdawn Administrator]

Yes I've done the same about Vit D Rob and am now on supplements. My haematologist wasn't aware of any guidance relating to maintaining optimal Vit D levels for CLL'ers.

Newdawn

[Oleboyredw-uk in reply to Newdawn]

I knew the doses are in the hundreds of IUs. I was a bit surprised to see the high dose capsules were 20,000. But there you go, can't really complain, I asked and I received.

rob

[Newdawn Administrator in reply to Oleboyredw-uk]

I'm on a maintenance dose of 800iu daily but started on that whopper dosage to get me into reasonable range first.

Newdawn

[Kwenda in reply to Newdawn]

Is there a link to published information in the UK that people can print out and show to their doctors.?

Many, (most), UK doctors may not be up to date with Vit D and CLL.

Dick

[Oleboyredw-uk in reply to Kwenda]

Hi Dick,

I just went into my GP's and asked referring to the news, so did not have it with me. The GP, in my case knew what I was talking about. It is not a CLL specific recommendation, it is generic across the population.

You could start from here: nhs.uk/news/2016/07July/Pag...

rob

[Bubnojay]

Thanks for sharing this Rob. I wonder why when I asked my GP many months ago to test for vitimin D, she said she would do a thyroid test. I never followed that up. Going for a blood test in December, I will remember to have it done this time.

Bubnjay1

[Oleboyredw-uk]

I think I over-egged the Pneumonia jab thing. Should just have pointed to the Green book ref from Paula's doc. I mentioned it to my consultant when I saw him in September and he added it to is letter to my GP requesting the Pneumococcal serum test. GP thinks they are done in batches as not so commonly requested so that's possibly stuck in the system somewhere.

I think I'm pleased with the Vitamin D outcome so far.

rob

[serendipity1]

I know with other cancers ( family ones) they were always prescribed Vitamin D and aspirin. I have now encouraged my partner to book in for test and to also ask about aspirin ( with CLL being a blood disorder) maybe that is why?

[virdieblue in reply to serendipity1]

No aspirin! (or other nsaids)

[Cllcanada Top Poster CURE Hero in reply to virdieblue]

I was on low dose ASA for 15 years while having CLL to thin the blood slightly... never heard of a contraindication in CLL.

~chris

[virdieblue in reply to Cllcanada]

It is the thin the blood part and the bleeding possibility. I was told only tylenol.

[CLLCalifornia-USA]

Rob,

I hope you get the great results I received once I found out my vitamin D levels were low. I have so much more energy and am so much more active now. I was at the point where I was needing a daily nap, and that is not my personality. I am always active.

Best regards,

Sally

[seoul]

You need a level of 50-70 Vit D3 OH 25.

Please refer to lots of literature via google.

[vinnet in reply to seoul]

Seoul

I am struggling with vit d and B12 at the moment.

I tried google but cud not get 50-70 article? I am doing something wrong, but can i request your help with this article? I can carry to GP and ONCO?

THEY TELL ME TO TAKE VITD ONCE A MONTH. LUMIA ( 60000IUD )

Best wishes

vinnet

[seoul in reply to vinnet]

Hello vinnet,

you need a test about your VIT d3 OH 25 first, to see your actual level.

Mine was in 2014, when I started to supplement, by 13!!!!

If you have your level you should take as much VIT d3 pills as possible to get to 50-60.

That means, another test in about 4 weeks.

then continuously may be 10.000 IU a week and test al six months.

There are many books available by amazon and a special web side about VIT D3.

My book, written by a German and US Specialists I cant find quickly. If important I will check again.

If GP will not prescribe, buy it yourself. In Germany only pills with 4.000 are available free, in Switzerland 20.000 no problem and via internet you get 10.000 easily.

bets regards Seoul

[vinnet in reply to seoul]

Hello Seoul

Thanks for guidance. Mine is 46.1 currently. I take 60000iud tablet every 10 to 15 days. Tablet name is Lumia.

I still feel energy deficit. ( I also take vitb12 1500 mcg daily)

Any idea why? Many of us do rigorous workout, biking etc. which i cannot think. Just after 10 minutes walk, i need to lie down...

best wishes

vinnet

[seoul in reply to vinnet]

Level 46 and 60.000 IU every 14 days seems enough. Testing should be done from time to time. Level will increase slightly . Please check your Hämoglobin and your Erythrozyten. Less energy could be low level of HB. Please check.

regards Seoul

[vinnet in reply to seoul]

Hemoglobin is 12.5

The other test u mention, i hv no idea.

rgds

vinnet

[seoul in reply to vinnet]

Hb means Hemoglobin. 12,5 is ok ! Ladies are 12-16.

[scarletnoir]

Having read about this recently, I intend to take these tablets from now on, in the darker months, anyway - but maybe all year, because I have to use factor 50 on sunny days (UV 4 or more) after a CLL-related skin cancer.