help with vit D levels

JO:  Good luck with your continuing battle with the vitamin d, I'm following ya here!     Yes, we who are ER+ should definitely avoid soy, and I haven't used flaxseed in years.  I'm glad you feel better, though sorry about the stress level, getting tired seems inevitable, but glad you're rebounding quicker!   It's good to read your posts.    Keep us posted.   ~juli

My level just post dx last year was 18! So, a doctor put me on 10,000 iu'sper day. My next level at 6 months was 53. I continued on the same dose and was tested 3 months later only to find my level at 43. I don't understand what happened. I was told to eat it with a meal but I had never done that in the first 6 months so what changed?

Found this...thought it was informative and interesting

http://www.vitamindcouncil.org/vitaminDPharmacology.shtml Different Forms of Vitamin D

To understand vitamin D pharmocology one needs to be familiar with the different forms of vitamin D, namely cholecalciferol, calcidiol, and calcitriol.

Cholecalciferol (vitamin D3)

Cholecalciferol is the naturally occurring form of vitamin D. It is the substance made in large quantities in your skin when sunlight strikes your bare skin. It can also be taken as a supplement. Cholecalciferol is vitamin D; all other compounds are either metabolic products or chemical modifications.

Calcidiol (25(OH)D3 or 25D3)

Calcidiol (25-hydroxyvitamin D) is a prehormone in your blood that is directly made from cholecalciferol. When being tested for vitamin D deficiency, calcidiol is the only blood test that should be drawn. When someone refers to vitamin D blood levels, they are usually referring to calcidiol levels. Your doctor can order calcidiol levels but both your doctor and the lab will know the calcidiol blood test as 25-hydroxyvitamin D.

Calcitriol (1,25(OH)2D3 or 1,25D3)

Calcitriol (1,25-dihydroxyvitamin D) is made from calcidiol in the kidneys and in tissues and is the most potent steroid hormone derived from cholecalciferol. In fact, it is the most potent steroid hormone in the human body. Calcitriol has signifigant anti-cancer activity. It is sometimes referred to as the active form of vitamin D. Calcitriol levels should never be used to determine if you are deficient in vitamin D.

What Forms of Vitamin D are Available?

Non-prescription vitamin D supplements are available in the United States as either Vitamin D2 Ergocalciferol or Vitamin D3 Cholecalciferol. Both are referred to as "vitamin D" although they are different in their origins, metabolism, and potential toxicity.

Cholecalciferol

Cholecalciferol is the naturally occurring form of vitamin D. Whenever I use the term "vitamin D," I am referring to vitamin D3 cholecalciferol. In fact, cholecalciferol is the only vitamin D-all its other forms are different molecules. The current system of naming vitamin D is very confusing, as anything with vitamin D activity is often called "vitamin D." This is like calling anything with corticosteroid activity, "cortisol," or anything with androgen activity, "testosterone." It is not only confusing, it makes no sense.

Furthermore, the body turns vitamin D into two very important hormones, calcidiol and calcitriol. These two hormones are also called vitamin D! This borders on the ridiculous as it would be like calling both testosterone and estrogen "cholesterol," as both are made from cholesterol. However, cholesterol, estrogen, and testosterone are very different molecules with very different functions. Likewise, cholecalciferol, calcidiol, and calcitriol are different molecules with different functions.
Potency and Dose

Cholecalciferol is manufactured from the fat of lambs wool by purifying the fat and extracting the cholecalciferol. It is quite potent as vitamin D is active in tiny quantities. One capsule at 1,000 IU is equivalent to 0.025 mg-only 0.000025 of a gram!

Potency just means the dose necessary for a response. The lower the dose, the greater the potency. For example, you might take two Tylenol tablets (1,000 mg) to relieve a headache. Current studies indicate one needs about 4,000 units of cholecalciferol a day to meet the body's need for vitamin D. 4,000 units of cholecalciferol is equal to 100 micrograms, or 0.1 milligrams. So the 1,000 milligrams of Tylenol needed to help your headache is 10,000 times the 0.1 milligrams of cholecalciferol needed to help your body. Therefore, cholecalciferol is 10,000 times more potent than Tylenol.

This potency is one of the reason vitamin D has a reputation as being toxic. Very few other vitamins and supplements, or even medications, are effective in microgram quantities.

A Prehormone

You will read that cholecalciferol is a hormone; it is not. It is a prehormone. In fact, it is no more of a hormone than cholesterol. In a way it is similar to cholesterol. For example, some of the cholesterol you eat is turned into hormones: estrogen, testosterone, progesterone, etc. Some of the cholecalciferol from your skin, or from supplements you take, will be turned into hormones by the body. So cholecalciferol is no more of a hormone than is cholesterol.

However, some of your cholecalciferol will be turned into calcitriol, a very potent steroid with anti-cancer properties. Remember when I showed you how cholecalciferol is 10,000 times more potent than Tylenol? Well calcitriol is 10,000,000,000 (10 billion) times more potent than Tylenol! It is active in picogram quantities (1/1,000,000,000,000 of a gram)!

Ergocalciferol

Another substance that is often called vitamin D is ergocalciferol (also referred to as vitamin D2 or Calciferol). It is derived by radiating fungus. It is not the naturally occurring vitamin D for humans. Fungus contains fat-like substances called sterols which are commercially irradiated to form ergocalciferol. As it is derived from plants, and not animals, ergocalciferol is considered Kosher.

Ergocalciferol is available to U.S. doctors in prescription strength and is sometimes used in multivitamin preparations-usually at 400 IU per pill. Your doctor can write a prescription for 50,000 units of ergocalciferol (brand names Drisdol and Calciferol).

Ergocalciferol does not exist in detectable quantities in the human body, only in tiny quantities in plants and as such is "unnatural" when in the human body. You can not get any appreciable ergocalciferol by eating vegetables. Ergocalciferol is metabolized to various substances in the body, some of which are not normally present in humans, although these metabolites have never been shown to be dangerous. There is also some evidence that ergocalciferol is more toxic in overdose, which is curious as it is only about half as potent as the naturally occurring vitamin D, cholecalciferol. Your body also metabolizes ergocalciferol more quickly than cholecalciferol.

Vitamin D as a Prescription Medication

A number of the naturally occurring products of cholecalciferol metabolism are extremely potent and are only available as prescription medications. They are also sometimes called vitamin D. These include calcidiol (also sometimes called calcifediol with the brand names of Calderol and Dedrogyl), dihydrotachysterol (brand name DHT Intensol), and calcitriol (brand names are Rocaltrol and Calcijex when injected).

Vitamin D Analogues

Finally, a number of compunds are based on variations of one of the naturally occurring vitamin D metabolites, usually calcitriol, and these are called vitamin D analogues. They are frequently used in chronic renal disease when the kidney has lost the ability to make calcitriol. The best known are doxercalciferol (taken orally with a brand name of Hectorol) and paricalcitol (intravenous with the brand name Zemplar).

Supplement With Cholecalciferol

The important thing to know: cholecalciferol is the vitamin D to take. Do not let your doctor give you any prescription medication for vitamin D. The only exception to this is ergocalciferol. Although with ergocalciferol you must remember you are taking a drug-not a vitamin-that does not normally occur in the human body.

John Jacob Cannell MD Executive Director 2006.01.03

Luna,

Yes, thank you. So is this shedding more light as to D3 being preferred to D2? I ran out of my D2 but do have my D3 that I purchased OTC. I guess it is officially time to switch?

Juli, I know I never thanked you for your Omega info, so thank you

I wanted to give an update which might spur a few people on to really pay attention to your Vit D levels. I have learned so much here, and thank you for that! My Onc did not offer this test, was not overly interested. I started at a whopping 4, and have made it to 22. I had a question awhile back because I noticed my skin was getting smoother. I did not know whether to attribute it to the Flaxseed Meal I was adding to my yogurt. I sort of dropped off of that, and have been without this supplement (I know...I need someone to keep nudging me.)

ANYHOO, to my delight, the skin on my face is smoother than it has been in a very long time. I hit menopause after a total hysterectomy at age 35. I was not offered estrogen, and have yet to re-start estrace, it has been over a year since I used any Estrace. My forehead no longer has dry patches, my gums look better, my cheeks are smooth, and people say I look younger. Is it my shorter haircut? possibly, but I know my skin no longer makes me feel older than my 43 years.

Conclusion? Vitamin D (so I guess it's a good thing I stopped the flax to give me the best data

So keep up the good work ladies, you really make a difference.

Thanks,

traci

Traci, you are very welcome on the Omega info.  I actually was still in the vitamin d deficiency phase, but taking the 9grams of Omega3's daily actually helps my skin as well.   It's very clear.  Now upping my dose of vitamin d3 surely will only help it even more.  Yes, it's nice to get thru bc treatments with the caustic stuff and then to get compliments on one's complexion is terrific!  Seeing as you had the hysterectomy early, and induced then into early menopause (I was chemopaused at age 47), and you are ER-, I hope you can use the estrogen if needed.   Gosh your vitamin d levels are still very low, I'd still be concerned?   Like you, I've learned TONS on this thread alone...and truly believe vitamin d deficiencies are a detriment to many diseases, including and especially bc.   All my best to you   ~juli

1Athena1:  you made me smile   That's a great outlook!

Traci:  I just started my vitD regime, so I hope I get improved skin too.  How long did it take before you noticed a difference?  Will it take away my bags? (Just kidding - I think that requires more surgery!!)

squidwitch:  I'm actually NOT shocked that your onco didn't want you taking estrogen.  Since it certainly can feed tumors, I think they're more cautious about it now, especially someone who has already had bc, even if ER-.   I think the Omegas will help out, just remember, my PCP said it really has to be a big enough dose (9 grams for me).  I wish you the best with stopping the nicotine gum/smoking, I've been there as well, and quit in 1980 (mostly just due to having a wicked sore throat for 3 days and NOT smoking, so then I said, well if I didn't smoke for 3 days, why start back up?   That said, I have a nodule on my lung, and a cough that doesn't show up anywhere on x-rays or CTs, but makes me a bit concerned.)   GOOD LUCK to ya!

The Omegas really do help with so many things, for me, it was good skin, great triglycerides, even helps with constipation I noticed.   ~juli

Tiffany:  Are you on the 50,000 prescription (green pills?) Vitamin D?  That is D2.  I've been on same, and my D3 (most important one) DROPPED drastically.  I am now on 5,000ius of D3 daily.  I cannot be in the sun (daily migraines), so I don't get the vitamin d from the sun.  Good luck bringing up your levels.  ~juli

squid:  I use whatever is buy-one-get-one-free, 1200mg tablets (doesn't matter to me if they're burp-free or regular)...and I take 2 at each meal, except for 3 or 4 at last meal to make up 9 grams or so.  Yeah, that's why I think oncos play it safer than sorry with estrogen, but if you need something, hey, you need it!  (I don't fridge my softgels/omegas, room temp for me).  I'm glad you are being honest about your personal trial, that's the best way to be!  Hope today is a good day for you.   ~juli

http://www.webmd.com/osteoporosis/features/newer-osteoporosis-treatments-build-stronger-bones?page=3&print=true

Good article on biphosphonates/bone drugs for those of us who are losing bone density.  I am bringing this to my primary doc's in a couple weeks, he's doing his own research on which bone drug is best for me (an almost 10% bone density loss in my lumbar spine after 5 years of dexa scans) to go with Aromasin and my other meds/supplements (vitamin d for one).  ~juli

Hi "D" gals:  Last year my Vitamin D levels were tested and my D3 was at 21.  My doctor placed me on the prescription strength regimen of 50K mgs for six weeks.   I was tested and my D3 level was at 50.  I have been on 2K mgs daily since.  Vitamin D testing last week showed my D3 levels at 41....and I have been putting my body out in the sun whenever I can...without sunscreen, which horrifies me.  So for some reason my body is not synthesizing Vitamin D properly.  Interestingly, my Vitamin D2 level was less than 4....but in reading Luna's link above [hi Luna!] , it sounds as though this is not really an issue? 

In the past month, I have been really distressed over my increasingly dry skin.  I am an emollient junky....I had beautiful, smooth, unlined skin for years - and I just turned 60. However, in the past 30 days, my skin has taken on this ashen hue, and  I look like a puffy, lined, parched lounge lizard.  I hate even putting make up on lately - my skin feels like sandpaper.  I have been on Tamoxifen for two years and unless the estrogen well was entirely sucked dry a month ago by this drug, it is not something I can blame entirely on my dear friend Tam. My thyroid levels are perfectly normal, darn it.  I wanted a good reason for my fatigue, weight gain and dry skin.  I know you'all don't have any answers to this dry skin dilemma.  I just wanted to biotch about it....since my husband looks at me with a blank expression on his face and says "it looks the same to me!".  Grrr. 

But about those D2 levels....I should not be concerned, right? 

Thanks for keeping this thread alive....

Deborah

Hi ladies,

I have a question...

I was on Vit D the little green pills once a week and my results came back now as 34.  My oncologist said this is good and I do not need to do anything else.  I am putting myself on Vitamin D but is this not strange?  My onc. said anything over 30 was good?

With reference to how doctors might view Vitamin D levels:  I requested Vit D testing last year and neither my primary care provider or my oncologist called me with the results.  So I assumed they must be normal.  I usually get my results online, but my Vit D results never came up on my provider website. I did call my PCP and asked her nurse for the results, and the nurse checked and said, "oh, they are normal."  Several months later, when I consulted with a rheumatalogist about bisphosphonates, she said, "has anyone told you that your Vitamin D levels are very low?" [It was "21".]  I have learned that we have to be our own healthcare advocates in every aspect of our treatment. 

Referable to optimum levels of Vitamin D, here is an excerpt from a study by the University of Medicine and Dentistry in NJ in 2009:

"Vitamin D deficiency in American teens is common. One study indicates that only 25 percent of more than 3,500 teenagers ages 12 to 19 had levels higher than 26 ng/ml, and 25 percent had levels lower than 15 ng/ml which is severely deficient. The optimal level of vitamin D is much higher than the conventional recommendation of 30 ng/m. Vitamin D levels should be 50-65 ng/ml."

"If you use suntan parlors once a week," says Dr. Cannell, MD, Executive Director of the Vitamin D Council, "or if you live in Florida and sunbathe once a week, year-round, do nothing." However, if you receive very little UVB exposure the Council recommends the following dosing levels of D3 for healthy adults and children:"

• healthy children under the age of 2 - 1,000 IU per day*
• healthy children over the age of 2 - 2,000 IU per day*
• adults and adolescents - 5,000 IU per day.

Dear Musical, 

Daily 5000 IU of D3 is better than the weekly 50,000 IU of D2.

Just had my Vit D tested last week by my Onc's office.  It had been at 28 during my first year after being diagnosed.  Once I read so much about the importance of it, I started supplementing.  A few months later, it had gone up to 36.  I continued with the 1000IUs daily for several more months up until now and this whole summer made sure to get plently of sun without sunscreen.  Now my latest test 2 weeks ago shows a level of 38!    I was pretty disappointed at such a small increase, but my Onc says this is great, we are very happy with anything above 30.  When I mentioned that I've read that the levels need to be much higher, the reply was that the jury is still out on the importance of Vitamin D, that some studies have been done, but nothing conclusive, so therefore above 30 is just fine.  What?  Not what I've been reading.  Makes me wonder if my Onc just doesn't have time to keep up with all the new studies or only pays attention to drug company research.

Should I increase to 2000IUs daily or go even higher?