help with vit D levels

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  • mathteacher
    mathteacher Member Posts: 243
    edited May 2010

    If we could only get the doctors to read this board they would get an education. They just don't read widely.

    Can't trust advice from people who don't read up.

  • Artemis
    Artemis Member Posts: 759
    edited May 2010

    Hi, coonie ~
    the 50,000 units of prescription Vitamin D2 (assuming you're in the US) is one single pill, so no, it's not "a whole lot of pills".  I've been taking a weekly pill for 3 months plus OTC D3 (1100 IU daily), and while I don't know yet if my blood levels are higher (mine was 8.5, so I *hope* it's getting higher, lol), I do know that my hip pain is much improved.  I've also been taking calcium and magnesium.

    Once I'm finiished with the scrip and get re-tested, I'll decide how much OTC D3 to take.  Right now, I'm thinking a minimum of 5000 IU since I learned (in this thread, maybe?) that it can help with asthma which is something that plagues me along with bone pain.

    Artemis

  • coonie
    coonie Member Posts: 7,618
    edited May 2010

    Ohhhh thanks everybody!! Well, it makes me feel better than it's only a single pill.......LOL. I don't think my little medicine container can hold too many more......now that's ashame ain't it?Tongue out

    Mak!! I know how you feel about being a science experiment:) It sure does get old. How's your hubby and boys? School out yet? You're right about the heat. It's already EXTREMELY hot down here. I asked my doctor if he could write me a script for a colder climate during the summer months.....wouldn't that be neat!!

    Artemis-how much magnesium do you take? I've heard about that too. gosh, I might as well just go down the aisle in the vitamin section and get one of everything......LOL

    Hugs all!!! Thanks again for the info

  • thenewme
    thenewme Member Posts: 1,611
    edited May 2010

    Hi Elimar, LOL - fair is fair Wink!   Grandiose are the delusions of those who insist that after reading anonymous postings on a message board they'll be better educated than their oncologists, LOL!

    Hi Coonie- yeah, what Artemis said!  The 50,000 units/week of vitamin D supplementation is pretty standard. It's likely that your pills are D2 instead of D3, and there is a lot of controversy over which is better, but you can read all about that if you want.  You may want to ask your doctor what he/she says about it find out whether they think you should do over-the-counter D3 instead. My oncologist had me do the 50,000 for a while and then switch to D3 over the counter later.

    They'll monitor your levels, so you'll know if (or how well) it's working in your specific case and adjust as necessary.  Anyway, a lot of people do report feeling better after starting vitamin D, so hopefully that'll be the case for you!  Best of luck!

     

  • Makratz
    Makratz Member Posts: 12,678
    edited May 2010

    Coonie,

    Boys and DH are great!!  If you get that RX for a cooler climate, I will come and visit you!

    Best of luck with the D!

    Linda

  • Artemis
    Artemis Member Posts: 759
    edited May 2010

    Coonie ~ I *think* the magnesium needed for Vit D absorption is 300-400 mg per day.  Hopefully, someone else will come along soon and speak to that.  Anyway, with my daily multi-vitamin and my Calcium/Magnesium/Zinc/D3 combo, I'm getting 449 mg daily.

    QUESTION:  I'm taking about 1200 mg Calcium daily.  Is this enough, and if not, how much should I be getting?  Thanks!

    Artemis

  • DATO
    DATO Member Posts: 127
    edited May 2010

    Does anyone have any information on how vitamin D levels may fluctuate during the year?  My only test for vitamin D (25-hydroxy) was in November 2008.  My level was 50 ng/ml and the standard was given as 30-100 ng/ml.  My onc said that my level was good but I decided I wanted it a little more toward the uppper end of the spectrum so I've been taking 3,000 units/day along with magnesium, calcium and a whole bunch of other supplements.  Also, I have an olive complexion that doesn't burn easily so I don't often use sunscreen. My onc said that at my next appointment (Aug 2010) she would do blood work again and I'm going to ask for another vitamin D test.  Since this test will be at the end of summer I was wondering how much difference in test results could be attributed to the time of year and do I need a "cushion" in D levels to see me through the winter?

  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited May 2010

    Just a post to the poster who asked about pain and Vitamin D. I started taking 50,000 IU weekly Vitamin D2 for 2 weeks, then I switched over to the oil based drops (over the counter) of D3. (My OB had given me a script, but I decided to use the D3 based on some of the information I read)

    Within 3 weeks of the initial start of supplementation, I feel like a NEW PERSON. My levels were previously in the low 20s, and at my last test they were at 39.  Honestly, I got to a certain point where I felt like I could do a triathlon. When you contrast that with the person I was before--- someone who had to take 3-4 tea and coffee breaks while cleaning the house-- you can see that it benefitted my pain threshold and my energy enormously.  I feel like the 21 year old version of myself!! I cannot say enough good things about Vitamin D.

  • juli0212
    juli0212 Member Posts: 1,415
    edited May 2010

    In response to others who responded to my own personal post, just wanted to fill you in.  I have had a parathyroidectomy in 2002, dx'd with breast cancer in 2006.  In and before 2002, was not vitamin d deficient, but before breast cancer definitely was.  My 50,000ius right now for 12 weeks is Vitamin D3, so were my supplements.  I will defer to my oncologist and endocrinologist-surgeon and breast surgeon who all say that the vitamin d deficiency can cause the spike (again) in the parathyroid levels.  I cannot take calcium at all, due to acquiring primary hyperparathyroidism once again.  No tumor, we will keep a watch on this as well.

    I would NEVER EVER go to that parathyroid.com site ever again.  I have personal reasons for this which I do not wish to share, other than to say if anyone actually GOES there, get a second and third opinion.  I have years of experience with vitamin d deficiency, hyperparathyroidism, hypothyroidism, and now unfortunately, breast cancer. 

    Be well ladies, and good luck on the vitamin d levels, we all need to have them up there. ~juli

  • Luna5
    Luna5 Member Posts: 738
    edited May 2010

    coonie.....ask your pharmacist if they are filling the prescription for 50,000 with d3 or d2....most people here have found that there is not 50,000 of d3 and the pharmacists are filling with d2 instead of d3.....like it is interchangeable

    I switched to Thorne brand and brought mine up from 22 to 61 in 4 months using 15,000 to 20000 mg a day.

  • juli0212
    juli0212 Member Posts: 1,415
    edited May 2010

    Luna, I'm glad you wrote about asking the pharmacist about exactly WHAT Vitamin D compound one is taking.  My endo wrote specifically Vitamin D3/50,000ius, and my pharmacist reiterated that it indeed was Vitamin D3.  Congrats on increasing your level, we want mine to go from 30 to around 70, since having a history of vitamin d deficiency.  I will remember the brand name, Thorne, and will ask my endo when finished with the 12 weeks of 50,000iu 'rescue' vitamin to a maintenance level that is high like yours.  THX for your input....all my best.   ~juli

  • sam52
    sam52 Member Posts: 950
    edited May 2010

    Julio - I am curious about your post concerning the parathyroid.com website.I realise you don't wish to go into details, but I had the vitamin D/ hyperparathyroid situation explained differently to me by an endocrinologist.The high levels of PTH can cause you to become vitamin D deficient.

    I am also curious that you say you have primary hyperparathyroidism for the second time - and no tumor.As far as I understand it, the increased parathroid hormone levels are caused by a parathyroid adenoma,so how do you account for your increased PTH? It would seem possible that your first surgery missed the second affected gland, but there would still be a tumor.

    It is also interesting that you had hyperparathyroidism pre-dating bc; there seems to be a definite correlation, and some have even thought that the one is implicated in the cause of the other.

    Best wishes,

    Sam

  • makmak
    makmak Member Posts: 632
    edited May 2010

    I too checked my prescription after reading all this, and sure enough it was useless to me.. D2.  I went from 34 to 35 in 2 mos.. USELESS. So I started 10,000 a day of OTC D3.  Here is the problem:  My BUN (kindney) test is showing up high and the nurses tell me I may not be drinking enough, but I m wondering if I"m overdosing on D3 at 10,000 a day.  The nutritionist at my ONC said it's a TOXIC dose which can  harm kidneys and to go of immediately for 2 weeks and then only do 2,000 a day.  Any thoughts?

    Thanks

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited May 2010

    RE: What Julie said:

        I will defer to my oncologist and endocrinologist-surgeon and breast surgeon who all say that the vitamin d deficiency can cause the spike (again) in the parathyroid levels.

     I was found to be severely Vitamin D deficient (7), with high calcium, and high (on the borderline) parathyroid. We have gotten my D up into the 30s (and what a job that was!), and both the parathyroid and the calcium have gone down to normal.

    So, don't automatically distrust your doc - mine's not a great communicator, but she went to a really good school, and knows her onions!

  • mathteacher
    mathteacher Member Posts: 243
    edited May 2010

    Unfortunately, they didn't teach the updated vitamin D info in any medical school, no matter how prestigious. So these docs are just parroting the old/wrong information. You have to find a practitioner who has studied the New research about vitamin D.

    Makmak, there are many here whose docs have prescribe (via rx) 50,000 units until they get the D levels up. There is no optimal daily dose, there is only an optimal blood level range. My BUN was occasionally high a few years ago and they siad I was not drinking enough water.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2010

    Fans of vitamin D - I love this thread!  I am here to tout my oncologist and all the oncologists that my friends (have way too many women I now know with bc)  have in the city I live in....they ALL test for vitamin D when you are diagnosed, and test my level quarterly.  My onc. is at a NCI center, but I know of oncs in neighboring hospitals that are on top of this too.  Possibly it is because we are in a very overcast area in the NW.

    At my most recent appt we talked about the whole Vitamin D thing - she really thinks there is something too it, and it is not coincidental.  I guess the same ferver surrounded vitamin C and vitamin B (that low levels contributed to cancer) but vitamin D is proving to be a serious contributor.  My onc. seems to welcome the questions that I have - mainly about subjects that i learn on bc.org.

    I really really trust and love my onc. and if I thought she was out of touch, I would change doctors.  I dislike the medical community trashing that I read on bc.org - the majority of them really do keep on top of their specialty.  If your personal doctor doesn't then why not find one that does?  Our lives depend on great doctors that work well with us!

    edited to add:  My onc. does tell me that the medical community really is not sure that super high doses are best - she told me that the studies indicate that high average is best to reduce reccurence.  She cited a canadian study that the women with super high levels of vitamin D had as bad as a prognosis as super low - the only article that I could find about this is www.msnbc.msn.com/id/24654464/

    At the end of the article a doc is quoted that those with super high levels had worse outcomes - although it was a small sample.  

    My onc. likes her patients to be in the high average - over 50 but under 70.  I started out at 23. I know the vitamin D council recommends higher.

  • juli0212
    juli0212 Member Posts: 1,415
    edited May 2010

    sam52:  We've done the Sestamibi Scan to check for a parathyroid tumor (again).  My parathyroidectomy was in 2002, and all levels went back to normal, though I had a devil of a time with bone/joint pain for a year after the surgery.  I have tons of medical issues that affect the parathyroid/calcium levels/vitamin d/breast cancer.  As 'Icandothis' stated, one cannot automatically assume there is another tumor, and I refuse exploratory surgery (as my old Sestamibi Scan did NOT show the grape-sized tumor on the parathyroid gland which was in my CHEST, contrary to most opinions, the parathyroid glands are not just in the throat, they are between the top of the neck to the chest, and they are tiny, 1/2 M&M sized).  I have my own issues with parathyroid.com and will not go into them, respectfully.

    I am concerned of course about the Vitamin D deficiency as I was deficient right before dx of breast cancer, and there is no history of cancer in my family (nor of parathyroid issues).  Interesting that alot of cancer patients have parathyroid issues, that I DID NOT KNOW, thank you!  I'd been looking up and having my *ex* endocrinologist (who tested my levels of PTH which were ranging from 300's to an unbelievable 797!) and was just clueless...had 'no idea' why my levels were that high (calcium was in normal range).  So, it's just a rat race of trying to keep up with testing levels, keeping up with the vitamin d, get those levels back up, and my endocrinologist said he can almost guarantee my pth and calcium levels will level off.  We will test after this 12 weeks of 50,000ius of Vitamin D3, I'm only on second week now.

    I'm glad this has brought this to people's minds, we really must be so vigilant about ALL our health issues, one thing affects the other.  If we're not on top of it, no one else will be.

    ALL my best to you all~~~juli

  • MaryNY
    MaryNY Member Posts: 1,584
    edited May 2010

    April: I so dislike the trashing of doctors that happens on these threads too. Both my onc and my GP test for vitamin D levels also. I don't know why some people would value advice of non-professionals on these boards more highly than that of qualified medical personnel. I think that's just asking for trouble. However, I do think it's important that we educate ourselves so we can talk to our doctors and ask informed questions.

  • thenewme
    thenewme Member Posts: 1,611
    edited May 2010

    Hi Aprilgirl1,

    I agree there is a lot of medical community trashing on here, but actually I think it's a pretty small (but very vocal) minority.  I'm like you - I trust my doctors and find them to be very open to new ideas and discussions and staying on top of research.  Of course they can't know every detail about every study that comes out the minute it hits the news, but they all are completely onboard with the vitamin D emphasis. All my doctors (oncologists, primary, internist) and their entire offices are recommending regular vitamin D testing, along with the usual lab work, and I'm in sunny Colorado!  I don't expect my docs to know everything, but if my doc was unwilling to consider new research or discuss my concerns, I would absolutely find a new doc.

    I'm also a medical transcriptionist, and the doctors I transcribe for also regularly order vitamin D testing. 

    I think it's ridiculous to make sweeping generalizations such as "... doctors aren't taught anything about nutrition <or supplements or whatever> in any medical school... "  or to presume that all or most doctors are giving wrong/outdated information.  Give me a break.

  • juli0212
    juli0212 Member Posts: 1,415
    edited May 2010

    Didn't mean to do any doctor bashing, and don't believe I did.  Yes, the more we know about vitamin d and talk to our doctors about it, and how it affects the rest of our medical history is so very important.  I'm just glad this subject was brought up, it really does need all our attention.

    I also have great doctors, if I did not, I'd 'fire' them, which I've done in the past (a very ineffective endocrinologist, not doctor bashing, just facts here)...and moved on to the next absolutely awesome endo.  He listens to me and knows that I somewhat know what my body is telling me and listens to it and me.  SO important.  Again, I wish you all well in our challenges!   ~juli

  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited May 2010

    Juli0212

    I have to agree with the parathyroid.com site out there. It seems like a whole lot of good information, but a lot of fear mongering. Interestingly, there are Yahoo Q&As out there that appear to have been authored by the site's author as well, with the same inflections and use of fear mongering lingo.

    My endocrinologist felt the same about the Vit D.... my PTH levels were at 84, but my calcium was at 9.2. He strongly felt that once my Vitamin D levels were up, my PTH might lower to the normal range. I'll have it checked again to find out. I have some malnourishment / nutrient deficiencies due to IBS, so there is probably a linkage to the Vit D deficiency as well.

    Ladies, thank you for all the insight and valuable information on this very important pre-hormone and vitamin supplement. Vitamin D has changed my life for the better!!

  • juli0212
    juli0212 Member Posts: 1,415
    edited May 2010

    MariannaHB~

    I would be very interested in your results when you receive them re:  your vitamin d levels, your PTH and your calcium.   I'm sorry about your IBS, that has to be difficult.  I will be having my levels rechecked after the 12 weeks of 50,000ius of vitamin d (10 more weeks from now).  I have other medical issues going on, which is no part of this thread, so I will defer!   :)    ~juli

    (You can certainly send me a PM, I'd love to know the levels have leveled off so to speak after your vitamin d treatments as well!)

  • thenewme
    thenewme Member Posts: 1,611
    edited May 2010
    Hi Juli0212, it wasn't you I was referring to as doctor-bashing Wink  I appreciate your insight and common sense!
  • ananda8
    ananda8 Member Posts: 2,755
    edited May 2010

    It must be time to re-post some information about the research being done on Vitamin D3 by doctors.

    The following links and many others including videos can be found at http://www.grassrootshealth.net/

    Vitamin D: Role in Calcium Metabolism Safety

    http://www.grassrootshealth.net/media/download/2010-04-9-Heaney.pdf

    Vitamin D: Mechanism of Action Status of the Evidence

    http://www.grassrootshealth.net/media/download/2010-04-9-HeaneyVitDMechanisms315pm.pdf

    Video: What's a Vitamin D Deficiency?

    http://www.ucsd.tv/search-details.aspx?showID=15751

    One is not necessarily bashing doctors by pointing out that some doctors are behind in the current research on Vitamin D. 

    I hope those of you who are confused about D2 vs D3 will read the links and listen to the video.  It will be time consuming but you will have the facts about D as they are currently understood by researchers.

  • juli0212
    juli0212 Member Posts: 1,415
    edited May 2010

    Remember there are those of us who cannot take calcium along with the vitamin d.  Good info, always good to read what's out there, one can make up one's own mind!   :)   ~juli

  • Makratz
    Makratz Member Posts: 12,678
    edited May 2010

    I hope you did not think I was bashing doctors. I have the utmost respect for them.  In my case, it was my GP who wanted t test me for vit d deficiency.  My onc did not kow why she would want to do that.  She didn't realize there could be a relationship between cancer and vit D.  SHe is in her 30's and is a Harvard Grad.  Now, whenever I go and see here, I bring her articles to make sure she is reading them.  I am not bashing doctors, I do understand they are busy, but I also want what is best for me.

  • mollyann
    mollyann Member Posts: 472
    edited May 2010

    The doctor worshippers go berzerk when you point out facts their docs may have missed. It's like criticizing God. This is probably a misguided coping mechanism in some patients. Some people need to think their docs are God to get thru this terrible disease. Okay.

  • juli0212
    juli0212 Member Posts: 1,415
    edited May 2010

    I believe in the PATIENT being the most proactive in our own healthcare.  Good for you, Makraz. 

    I also believe in informing our own doctors, they may not like it, but mine have respected my research, lab test copies and upkeep on my own health issues.  I just believe one HAS to, if we don't, heck, WHO WILL????    :)   ~juli

  • mollyann
    mollyann Member Posts: 472
    edited May 2010

    Right, juli, you can't trust anybody but yourself to general-manage your own health care. I ask every doc, naturopath, pharmacist or whomever-- where I can read the information. The information/ facts are authoritative, not any person or group of persons with degrees.

  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited May 2010

    Totally agree with being proactive with your doctors. They are busy people, and more often than not, we are a chart with a body attached. They read the chart a few minutes before our appointment, and then make decisions based on protocol. Now, don't get me wrong, I think we need protocols. It's just that most healthecare systems are not set up for doctors to establish a really profound, uniquely individualized plan for each patient.  So, proactive patients who arm themselves with information and ask good questions can actually help the doctor to make better decisions! 

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