help with vit D levels

DaylilyFan · February 2010

What a wealth of info in this thread--thanks for bumping! I knew D3 was important but had no idea of the BC link. I have spent my entire life in hats and long sleeves to avoid sunburns and skin cancer and cataracts--sometimes, you just can't win! Wink

Questions: First, I finish rads in three days and see the med onc about 3 weeks later. I expect her to prescribe tamox since I have osteoporosis treated with Boniva infusions. What issues should I raise at that appt. besides Vit. D and the test for tamox metabolization? Second, what is an integrative onc?

By the way, last year my neurologist prescribed 2/325 mg of ferrous sulfate (iron) for Restless Leg Syndrome in addition to Requip. I have been taking just one tab instead of two for several weeks with no increase in RLS symptoms.

bluewillow · February 2010

Hi all, this is a wonderful thread with a wealth of information!

Thanks, DaylilyFan, for asking what is an "integrative" doctor... hopefully someone will answer soon, and maybe provide a source (website) for finding one locally.

I just purchased Vitamin D3, 2000 iu, in tablet form, and it is certainly working better than the gelcaps I tried before (lots of gastric problems with the latter). But now I am wondering if 2000 is enough, and would a liquid form work better/faster?

Good luck to all!

PS73 · February 2010

I have a dr apt this wed and will request my d level to be tested again so hopefully Ill get info this week on where Im netting out. Ive been doing the 50K D3 for three weeks now - hoping it has gone up from the 30s (which came down from the 80s almost too easily using the D2). Now, I use BIO D EMULSION FORTE LIQUID ( BIOTICS RESEARCH). Ive heard the liquid is more bio available but I will see. 2000IUs in D2 form wasn't high enough for me- it took me about three months and constant upping the dosage in 1000IU-2000IU increments to get me to 89 after one whopping increase of additional 50K IUS to a total of 120K units per week. ..then once I hit that mark I reduced my D to 4000IUs daily and it dropped to the low 30s - I hope you are all right about the D3 being better!!

For an integrative doctor, try this website - http://www.holisticboard.org/ - per my holistic md. the two really bad integrative doctors that I went to prior are NOT on there.

Estepp - any news?

Makratz · February 2010

I had my blood drawn again todday. Endd of Nov my D was 21. I can't wait to see the results. The numbers better have gone up! I'll let you know.

lexislove · February 2010

How often are you all re checking your D levels?

Makratz · February 2010

This is the first time for me. My Dr. had me do the 50,000 IU of D2 for 8 weeks (once a week) and I also took 3000 iu's of D3.

lexislove · February 2010

Im interested in all your results. Please do update!

Estepp · February 2010

Ladies... I had the Bone Density today... I got the results on paper.. but cannot read them. My PCP will call me tomorrow... from what it looks like to me.. I am 100% ok there. D levels should be in tomorrow too! I will let you know

The Dr took blood to rule out Lupus and Auto-immune disease...

I tested positive for all my trigger spots... He thinks all this pain if from FIBROMYALGIA...

I will let you know what the D test shows... LOVE YOU!

hlth4513 · February 2010

Here's a new article on Vitamin D.

http://www.naturalnews.com/028119_vitamin_D_brst_cancer.html

Interesting - after 5 months of 5,000IU of D3 - my levels went from 41 to 54.(Two years ago, before BC it was below 20 - but I had only been taking 800IU before BC diagnosis).

I would have hoped for my levels to be higher, but since I recently found out that I have some genetic issues with my Vitamin D receptors - now I guess I know I have to take much more. I am upping to 10,000 IU. and going to switch to drops. I am still trying to find out more about the Vit D cream, my NP didn't have the details when I asked, only that she had attended conferences where they suggested the cream or liquid for people like me who have trouble getting their levels up.

Beth

ananda8 · February 2010

There was a mention of Vitamin D3 cream by a doctor on Grassrootshealth.org. He mixed powdered vitamin D3 in Vaseline. This doctor said that a cream is now available in Europe but at the time of the video was not available here.

I did find a perscription cream. http://www.rxlist.com/dovonex-ointment-drug.htm but I don't know anything about it. You may wish to ask your doctor.

There are other creams on the market but they all contain Vitamin A as well. Too much Vitamin A is dangerous unless it is in the form of Beta Carotene.

hlth4513 · February 2010

notself-

Thanks for the info. I have to say, I am not wild about creams containing petroleum. I think I will contact the compound pharmacist I work with. I will post what I find out.

Beth

thenewme · February 2010

Hi Beth,

How did they test your vitamin D receptors for genetic issues? Was it part of the BRCA testing? This is the first I've heard of this, and I'd like to read more on this test! I wonder how commonly it is used, especially in light of how many people are being found to be vitamin D deficient.

Gayleebug · February 2010

One of my oncs recommends only D3.... she considers D2 ineffective. My regimen is 50,000 IU once a week, then 2,000 IU daily the other days of the week. My levels, after months of this regimen, are finally getting up to where we want them ... close to 100. She also recommends 15 minutes of sunlight (no sunscreen) a day.

hlth4513 · February 2010

thenewme -

the test was part of the Estrogenomic Profile from Genova Diagnostics (it's nickname is the SNPS test ). I do not know if there is a test to just test the one chromosome for the Vitamin D3 Receptors.

The test is fascinating and analyzes a number of genetic factors from a blood sample to find weaknesses which may get at some of the root causes for getting(or being at risk for) breast cancer. I found out a lot of my weaknesses/genetic variations - Detoxification impairments - the GSTM1 enzyme activity(Glutathione) is absent; an increased risk of toxic burden; a predisposition to make much 4OH; predisposition to have an unfavorable 2OH: 16 OH ratio; a higher risk of BC with xenobiotic exposure; a 3-4 fold reduction in COMT enzyme activity - which means I have impaired methylation of estrogens; higher rate of bone turnover; reduced calcium absorption; impaired Vitamin D receptor function, with resistance to Vit D3, and lots more info. I also found out that with my genetic make-up, I never should have been on the birth control pill for 25 years!

The great part about the report is that it also tells what you can do with nutrition, supplements and lifestyle to compensate for one's weaknesses.

I found out about the test at Dr. Uzzi Reiss's website - he has a link to click - Gemomic Breast Cancer

http://www.uzzireissmd.com/genomic.html

Beth

hlth4513 · February 2010

FYI - I did get a response back from my compound pharmacist regarding the Vit D3 liquids or creams. My intention is to increase to 10,000 IU and re-test in a few months.

His response:

I think you should just raise your D3 to 8000iu a day orally as the liquids and creams are more expensive and not definitely guaranteed. You did get your levels up quite a bit so you are absorbing it orally. Xymogen makes both a liquid and a cream so I do not have to make it if you choose to try another route,

Beth

JanMarch · February 2010

My PCP checked my Vit D level at my annual physical last month (my onc never checked it) - got the results last week and found out it is 14 - yikes! She prescribed the 50000 IU of Vit D once a week, but thanks to this thread I now know to check if it is Vit D2 that she prescribed - have a feeling it probably is. Thanks to all of you for this information!!

Makratz · February 2010

Jan, As far as I know, and I checked with the pharmacist, Vitamin D is only available in an RX if it is D2. I took the D2 RX but supplemented with D3. I should get my results back by Thursday if they don't get lost in the snow!!

JanMarch · February 2010

Thanks Linda - I've also been taking 1000 IUs of the D3, but will increase that to 5000 D3. I'm getting rechecked in 3 months. How long has it been since you were checked last? I'm curious how long it takes to get the levels up.....

Anonymous · February 2010

Lots of good info here.

Six months ago my Onc tested my level. It was 33. Started taking 4000IU's per day. Last week I re-tested. Good news: It is up to 55. So...it took six months of 4000 daily to increase it by 22. I have upped my daily to 6000IU's for the next three months. Will get tested again in three months. Hopefully it will be up to somewhere around 70. If it is up to 70 in three months, should I go back down to 4000 daily and get tested again three months later? Or do I keep taking 6000 daily and get tested again three months later? Thanks!

Mantra · February 2010

Nan - So sorry I didn't reply earlier. I didn't have this forum posted as a favorite and haven't been back until today. Yes, when I'm reading the results it says:

25-Hydroxy Vitamin D - 110 nmol/L 75-250.

I take 2 x 650 mg calcium with D3. Each tablet has 200 UI so I'm taking 400 UI. I also take a multivitamin. I just switched to One a Day women's 50 + Advantage because it says it supports breast health. It has 800 IU. Not sure how much D3 was in the old vitamins I was taking.

Makratz · February 2010

Jan, I was tested in Nov, part of my physical. I was just retested yesterday. I'm anxious for the results.

thenewme · February 2010

Here's an article on vitamin D from an interview at the 2009 ASCO meeting. I think it's interesting in that it talks about some of the difficulties with vitamin D testing, dosing, and monitoring levels. As a patient, it's frustrating to have so much contradictory information about vitamin D, but it's good to know that it's a hot topic right now and a lot of research is being done.

http://cme.medscape.com/viewarticle/704514?src=cmemp

Nan56143 · February 2010

Dear Mantra,

Since you are from Canada, the D is tested differently I believe? My test states 66 ng/ml, where your test states 110 nmol/L. Since math is not my forte, I believe here in the US (conventional units), your D level would be 44. (110 divided by 2.49600 = 44.0705128.) Normals are from 32 ng/ml to 100 ng/ml, and you should be in the higher range...closer to 100 ng/ml. Check out this chart for conversions.

http://www.globalrph.com/conv_si.htm

edited to add....everything that I am reading is suggesting/recommending at least 5000-6000 IU's, and even more of D3 a day, and what you are taking is far below that. Just a suggestion Wink

elimar86861 · February 2010

This whole Vitamin D thing begs the question, do women in equatorial regions have less incidence of breast cancer? They would not have the same problem of getting the natural D. I have not seen that particular statistic (tho' I admit I have not yet gone looking for it.) Let me know if you have come across it.

I have been avidly reading this thread, and only recently began supplementing with D and D3. I had the blood test last month and it was 46. Lexislove asked how often everyone is getting rechecks, and no one replied to her. I would like to know that myself if a few people can comment on that.

Nan56143 · February 2010

Dear elimar,

I believe the 25-Hydroxy test is recommended every 3-6 months, but I am not sure that insurance will pay for that unless the doctor is specific for the orders? I used to have many articles as to the equatorial regions, and I think some of that info is in the links to the Vitamin D council newsletters. Go back to page 1 or 2 of this thread, and check out some of the links.

Nan56143 · February 2010

Perhaps some of you might be interested in signing this and while I know that big pharma cannot produce vitamin D3 and make a profit, other supplements may be at risk. They do manufacture D2 which is a total waste.

This is titled ...Oppose the Dietary Supplement Safety Act of 2010 Bill

http://www.lef.org/lac/?source=eNewsLetter2010Wk7-1&key=lac

thenewme · February 2010

Hi Elimar,

Here's an interesting map that does not show lower rates of cancer in equatorial regions:

http://www.worldwidebreastcancer.com/risks/breast-cancer-world-statistics/

My oncologist is having my vitamin D levels checked every 3 months, as I'm still trying to get my levels up. I'm not sure if the plan will change once I reach a good level, but I linked to a study earlier that showed that even after supplementing to reach a goal level, it decreases by 6.8% (not sure on that percentage) after supplementation is decreased, so I would think it would be reasonable to check periodically to ensure the levels are maintained.

Gayleebug · February 2010

Wow! I need to amend my post of 8 hours ago after reading all this good info and doing more research. As the 50,000 IU only comes as D2, this means that big dose isn't really helping me in the long-term. DUH. I am positive my onc's office (NP--I love her) does not know that she is prescribing D2 rather than D3. Once I get her e-mail, I'll forward her some of the info y'all have posted. Every time I think I have something totally straight, I find I am off track!

Gayle

ananda8 · February 2010

thenewme,

Did you mean "the map does show lower rates of cancer in equitorial regions"? It does show that.

Anonymous · February 2010

Elimar (and Lexi) - My D level was tested when I was first diagnosed (11/08). It was retested 11/09 and I went from 23 to 55. My onc. is testing it again next week. I don't know if she will test it quarterly or ? I will find out! She is happy with my level at 55 - so I am bringing her data that I got on the boards that my level should be over 70.

help with vit D levels

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