Vitamin D advice

[Melissa75]

I got some bloodwork back and my D level is 15 (normal is 30-100, according to my dr). I have been taking supplements on an off over the year. I guess I need to be on and on.

I'm wondering if anyone has a brand of Vit D supplement or a food they recommend. Since I have non-CF bronchiectasis, I don't take ADEKs, but am curious if anyone has advice anyway.

I read some of this article http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/
and saw that Cod Liver Oil has 1360 units per Tbsp, which is 340% of the DV. I'm wondering if anyone has tried that? Or if the oil/fat of that option makes it a no-go.

On a side note, I learned while lecturing one of my kids on the "betterness" of bitter and odd tasting greens, that a serving of dandelion greens has over 500% of your D.V. of Vitamin K.

http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/2441/2

My kids and I also researched together that if you pee pink after eating beets, you might have low stomach acid. It's a nutritious test, if not one that is full of certainty. http://en.wikipedia.org/wiki/Beeturia

 

[Ratatosk]

DS takes two CF vitamins a day which I think have 1500 units per gel tab and his levels have been middle of the normal range; however, you indicated you don't need all the other vitamins. I believe they also make a D3 supplement... Here's a link to their website http://mvwnutritionals.com/product-category/vitamins-supplements/softgels/ Not sure if they are any better or worse that other products on the market.

Being we live in the frozen tundra majority of the year, DH and I take 2000 units -- one generic gel tab a day.

 

[Aboveallislove]

DS Vitamin D was low last annual blood check so in addition to 2 ml of Aquadeks he's on a liquid Vitamin D that has 400 iu per 1 ml and does 2 mls a day. It's brand is Rugby but we just get it filled by pharmacy. They retested after 6 weeks and it was in normal range then.

 

[Melissa75]

Thanks for replying, Aboveallislove & Ratatosk. I picked up a 2000 ui tablet to take 1-2 times a day. Good to hear that the supplements seem to work. (I looked closer at the foods that are high in Vit D, and I already eat them all...a lot. Except for the cod liver oil.

 

[Twistofchaos]

People that lift weights are recommended way higher dosages currently. Up to 5000-10000IU. Also in 2012 the European Food Safety Authority raised the recommended daily allowance to 4000IU/100µg for every type of person and children over 11. (2000IU for children under 11 and 1000IU for infants under 1 year) Even that's being well on the safe side as in practise it's almost impossible to reach dangerous levels of vitamine D.

Reasonable to suggest the same for the CF body as it's in constant state of recovery. (I don't get out in the sun much as well.)

And it seems to help, my vitamine D values have moved up to normal range past years.

 

[ethan508]

A couple years ago my Dr recommended increased Vit D supplements to try increase my blood levels from 25 up to the recommended. So I have increased my supplements but had very limited improvements. My last blood work was done in August and my Vit D levels were at 26 (I suppose any increase is good). I was taking 1600 IUs daily but I also was getting averaging 1-2 hours of sunlight and drinking 28-32 oz of Vitamin D milk daily in addition to a reasonable balance diet that should provide an normal person adequate amount of Vit D.

So the Doctor and I decided to up the supplement amount again. Right now, I'm now taking 2000 IUs of D3 in a gel caps at dinner and 600IUs as part of a multi-vitamin at breakfast but wonder if it still isn't enough. I guess I’ll find out during my next round of blood work.

 

[jaimers]

My vit D levels were chronically low and i would occasionally be put on a super high dose of Rx D for a month and then be retested at my next appointment. that generally worked for a while at least to keep my levels up but they would always fall again. so now I'm on 5000IU vit D daily in addition to my ADEKs. when i started that routine i bought some random generic brand of vitamins that was cheap and we found that even with taking those my vit D levels didn't improve. I started taking a brand (nature made I think) that is USP certified and that was when I saw improvement in my levels. USP is the only certification (i believe) that vitamins/suppliments can get to verify quality ingredients since they aren't FDA regulated. It made a difference for me so perhaps looking for a brand that is USP certified will help you as well.

 

[Ratatosk]

I do recall a FB friend posting about receiving a bunch of Vitamin D wafers from his clinic. They had a huge amount of vitamin d in them --- 50,000 IU I think. You could search online for info on vitamin d wafers and check with your doctor if they'd be appropriate for prescribing....

Another thing with DS is he loves being outside year round, so he's benefiting from that. During the summer despite wearing sunblock, he's pretty much outside all day long with his daycare group. They walk every where, go to the park, activities.

 

[Melissa75]

Thanks for the additional info, Twist, Ethan, Jaimers, Ratatosk. I think rock climbing is like weight lifting. At least some muscles are sore about 50% of my days. I never drink milk (wow, Ethan, impressive milk consumption), only eat yogurt and cheese. So I'm going to try 4-6,000 a day. jaimers, I did happen to buy Nature's Made so that was a nice coincidence. I probably should strategize to have a higher dose October thru May. Like your son, Ratatosk, I get out a lot in the summer...relative to the winter at least.

 

[Hail2Pitt]

I had my vitamin D tested about a year ago, and it was very low as well - somewhere in the teens. I started taking D3 every day, averaging 7500 IU/day (10,000 IU Monday, 5,000 IU Tuesday, 10,000 IU Wednesday, etc.), and I'm now at about 70. The nutritionist at your CF clinic should be able to tell you how much D3 to take each day.

Please do everything you can to get your Vitamin D levels up, and also to supplement with calcium. Since I was diagnosed with CF later in life, I likely was Vitimain D- and calcium-deficient for many years but didn't know it, and I now have osteoporosis. I'm hoping that my supplements along with Fosamax will at least partially reverse it, but it's a little frustrating because it was likely avoidable and I could have prevented it if I'd just known.

I take Country Life Vitamin D3 5000 IU (one on Monday, two on Tuesday, one on Wednesday, etc.).

 

[jthomp]

The Biotics Research Brand is excellent. They have an emulsified version of the individual fat-soluble vitamins for people with absorption difficulties. (Similar formulation to ADEKs, but with only D). We give our son 2 drops of Bio-D-Mulsion Forte (with gives him an extra 2,000 IUs per drop). His vitamin D levels are now excellent. They also have separate Supplements with just K or just A, etc. Worth looking into. We also give our son Green Pastures brand Fermented Cod Liver Oil. We purchase it thru Radiant Life Catalog. You can research it on their website as well as thru the Weston Price Foundation website. It is an acquired taste, but a power house of vitamins A and D. Kind of a "superfood." Our son takes this at meal time with his enzymes. As our nutritionist pointed out, fat soluble vitamins need to be taken with fat and enzymes to be digested, unless you take a special formula such as ADEKs.

 

[Melissa75]

Thank you!

jthomp, I might check out the drops. I'll probably first see how the bottle of pills I bought work out. The cod liver oil also sounds interesting, though now I wonder if I should avoid it unless I am low in A too. (I slather Retin-A all over my face daily for acne, so I can't imagine I am. But who knows how much is actually absorbed. And like I mentioned earlier, I eat all the D foods and clearly that isn't enough.)

hail2pitt, I'm sorry you're dealing with osteoporosis. It really stinks that no drs picked up on your vitamin/mineral deficiencies, even before they figured out the CF part.

edited: because I can't always spell well

 

[Hail2Pitt]

Thanks, Melissa. I don't think it's actually impacting my life at all, thankfully. I'd suffered from off-and-on back pain for years before finding out I had it, but now that I'm supplementing and taking the Fosamax, the pain has subsided quite a bit. I'm still very active, and my doctors haven't indicated that I need to change anything to avoid fractures, so I'm hopeful I can at least stay status quo for a long time. And hopefully I'll see it improve since we're now treating it.

 

[Kristan]

Hi Melissa,

Thought I would add my 2 cents. I see a holistic doctor for complimentary care and he has me on the Metagenics brand of D3. I take 5000 IU softgels and my kids take liquid drops.
I also have non CF bronciectasis, but recently had some genetic testing that uncovered two recessive PCD mutations and 2 other factoring genes.

I also take Biotics Ae Mulsion Forte (vitamin A), which is water soluble, so no risk of over dosage

 

[androula]

My DH had low D levels a couple of years ago, so his docs at Johns Hopkins actually told him what to take and where to get it:
ProHealth D3 Extreme, on Amazon.
It's 50,000IU per caplet, so he had to take one per week for 8 weeks and then go down to one every other week.

 

[windex125]

I have not taken a multi vitamin in years, I am not proud of that in any way. Once the size of ADEKS got bigger,or they changed somehow I forget... I just cld not swallow them. Then the CF Pharmacy sent the chewables, the minute I smelled them I started gagging. Since I hv that medialshift going on swallowing pills are hard unless they are small or round. I take extra vitamin D / C / I read on here someone was taking Flinestones chewable not gummies. bought them smelt bad, gagged. I also hv the start of osteopetosis dropping bone densisty every2 yrs. Yet to treat that, the CF doctor menitoned Fosamax but since I hv bad acid reflux she wanted me to talk with the gastro doctor first? Which I saw him in Jan. and forgot again. As mentioned on a different thread fell on ice Feb 5th broke right wrist in 2 places 3 casts later and now doing P/T 2xa week going very slow. I feel like a walking mess. I think I am starting to vent. I need to go. good Luck all keep up the good work.

 

[Twistofchaos]

For what it's worth with brands being thrown around, the raw material that vitamine D3 supplements are made of is extremely cheap so brands have little reason to cheat with this stuff. Most over the counter vit D3 is going to be real.

Indeed recently we labtested a few very cheap vitamine D3 supplements that we thought were questionable over at the Dutchbodybuilding forum from better known webstores here and indeed all of them turned out to be real. The extremely cheap supplements were more inaccurate in their dosing though but turned out high rather than low.

 

[LittleLab4CF]

Until this year I didn't think it was possible to take too much D3. Be aware that you can over do it, but you have to work at it. A group of essential minerals and vitamins are critical for calcium absorption, critical for muscle tone, bones, teeth and cardiac health. After years of undiagnosed CF and ignorance of my malabsorption, I develpoed osteopenia and then osteoporosis before I knew it. It hurts.

I take AquADEK and a short list of supplements that include amounts of D3. In addition, magnesium, vitamin C and of course, calcium are so critical for everything from skeletal health and comfort to vision. Anyone who can't afford or has difficulty with AquADEK, vitamins that are difficult to absorb because they're broken down by enzymes and are oil soluble can take their vitamins with some oily food like a cookie or peanut butter and a little enzymes. I doubted my doctor when he saw my high priced AquADEK and gave me this advice and having a laboratory at hand, I tested it. It works but that doesn't address how much to take.

My chronically low D3 tests usually came with a prescription level of Vitamin D. Usually 20,000 IU daily for a month. Then again the month after next and so on until I just purchased some 10,000 IU D3 from a health food store and was taking 2 daily. A large improvement in my enzyme balance started putting weight on me and apparently improved my D3 intake to the point where 20,000 plus IU daily was too much.

That said, D3 toxicity is sort of self limiting because you get a pretty bad case of the skoots as an early symptom. Granted, if this is sort of normal, go onto a 10,000 IU D3, assuming you're an adult and be tested a couple weeks after you begin. It is endemic to CF so don't worry, just optimize your level.

LL

 

[Ratatosk]

In the states, DS gets his CF vitamins free via the CFcareforward program from Creon. I send in a pharmacy receipt from his enzymes and get a three month supply of vitamins --- used to be source cf and aquaADEKs, but now choices include Libertas and Complete Formulation in liquid, chewables and softgels. We also get nutritional beverages or bars, too. I think one of the other enzyme companies (zenpep?) has a similar program.

 

[wcherri]

Hi Melissa75,
I have been using Replesta (50,000 ius) weekly. It has helped a great deal in addition to the twice daily Aquadek capsules. Since I order Cayston at Foundation Care Pharmacy, I receive this free with each order. It is a larger chewable wafer.

Wendy
45 with CF (Dx at 4)