help with vit D levels

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  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited October 2011

    I started out on the low end of normal range -- around 30 following my diagnosis. I started supplementing with D3 drops (dropped the D2 quickly, since I read about how it doesn't do much) by Carlsons.  I took those for about 4 months, got re-tested and my levels went up to 70.  I stopped taking the D drops this summer since I was out in the sun so much, and was curious to see if my body would maintain that level. I got my results back yesterday, and I dropped down to 58.  I started supplementing again this week.  I figure if I supplement in the winter months, I should be able to sustain a good average amount of Vit D in my bloodstream.   I had a slightly overactive parathyroid, and my endo suggested that it would even out if I started taking Vitamin D.... and it did exactly that. My PTH went right into the normal range and has stayed there since I started to supplement.

  • jazz3000
    jazz3000 Member Posts: 188
    edited October 2011

    jap- 40 plus the sun and your diet should add up to a pretty good mix of the D but if you feel the need to add more stay within a 5 to 10,000 IU level. the body will throw off what it doesn't need. Eat liver and all those great Vit D foods out there. Remember the vitamin pill is not all the Vit D you absorb daily. Food, Sun, and vits all go into the mix and add up to a healthy you. Vit D is not a chemical and therefore your pretty safe - even if you go a little overboard with IU- in that your body will throw out what's un-needed. Chemicals are a different story.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2011

    Jazz: actually excess Vitamin D is not elimintated by the body. Vitamin D is fat soluble, so any excess is stored by the body. The same is true of all fat-soluble vitamins (A, D, E, K) so excesses of these can be toxic.

    If you take more than you need of the water soluble vitamins (B complex and C) then you eliminate the excess in your urine. This is why it's important to get adequate Vitamin C on a daily basis.

  • Makratz
    Makratz Member Posts: 12,678
    edited October 2011

    I agree, Mary, thats what I've always been told and read about vitamin D.  It can be toxic, but you would need a LOT to get to that level.  I am out in the sun daily, although I live in the NE, I am a walker and do not use block while walking.  I walk about 1.5 to 2 hours a day.  I also take about 5,000 IUs a day.  My level has never gone over 60.  I started out at 18.

  • sam52
    sam52 Member Posts: 950
    edited October 2011
    Day ....yes, the trial was quite a large one; but there is no mention of measures of bone density - only that there was no significant difference between the two groups in terms of 'skeletal fractures'. Not the same thing. I have osteoporosis, but have not suffered a skeletal fracture (hopefully never). So I don't see how it can be extrapolated that aromasin does not cause loss of bone density.
  • Shrek4
    Shrek4 Member Posts: 1,822
    edited October 2011

    sam52,

    Look at the table on page 4. There is no difference in the bone mineral density between the women who took exemestane and the ones who took placebo. I think that speaks for itself.

  • sam52
    sam52 Member Posts: 950
    edited October 2011

    Sorry, Day - by following your link all I can see is one page (on NEJM) and no tables...??

  • sam52
    sam52 Member Posts: 950
    edited October 2011

    Sorry, Day - by following your link all I can see is one page (on NEJM) and no tables...??

  • LtotheK
    LtotheK Member Posts: 2,095
    edited October 2011

    This is extremely important to me now, as my doc will likely suggest an AI because of my chemopause at age 40.

    I don't see a table 4, could someone point that out?  Day?  Many thanks.

    Additionally, the median age is 62.5.  That seems a bit on the older side.  Bone density loss is most acute in the 3 years post-menopause.  Tamoxifen functions as a bone LOSS drug in pre-meno patients, point being, these drugs work differently depending on age.  I think this study would have less relevance to younger patients.  I could be wrong and want to know more.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited October 2011

    I've uploaded the document she emailed me on google docs. You can see it here

    https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B4PZOY2rJNlpNWZhZDBkODUtZjJkYS00YzM0LWI2YTctMGI2MDdkMjY0Mjhm&hl=en_US

    LtotheK, this is a study that was done on an aromatase inhibitor. Obviously on patients post-menopausal. Of course it would have no relevance on younger patients (unless they went into surgical menopause or chemo-pause).

    Also, it's the MEDIAN age. Means there were women younger than that and older than that.  The study started in 2005. There were way more things that were discovered in the meantime. And it is a full, detailed study on a large group of women, on an AI. I think it's the first that was done at this scale.

    The table on page 4 shows there was no difference in the bone density between the women who took Aromasin vs the women who took a placebo.

    Your doc doesn't necessarily have to suggest an AI. Many menopausal women tke first 2-3 years of Tamoxifen then go on an AI. Some doctors think it's more effective this way.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited October 2011

    Wonderful, Day, thank you for reposting!  I appreciate your time so much!

    Actually, we wouldn't really know if it has relevance for young patients, in part, that's my point.  They are learning these hormone modulators are quite nuanced.  Why Tamoxifen is a bone loss drug in pre menopausal patients, and a bone builder in post is not understood.  I doubt they've even considered tests on AIs in women thrown into chemopause, or those who chose Lupron suppression, for instance.

    I simply think there is going to be a ton more work on all these drugs in the upcoming years.  Unfortunately, I don't think solid answers will arise.  In the meantime, it is comforting that AIs may not mean rapid bone loss.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited October 2011

    Ooops, Day, sadly I can't access that link, it is "bad request".

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited October 2011

    I have no idea why. If I copy that link, and paste it in the browser, it works. It doesn't work clicking on it though.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited October 2011

    Day, this is an incredible study, and I'm so grateful.  I am printing it out for my next visit with the oncologist.

    Page 4 findings are baseline.  They are what the women had at the time of randomization.  Their bone mineral density was exactly the same.

    Table 3 side effects sadly indicate that in fact women on this AI got 37 new cases of osteoporosis.  Those on placebo got 30.

    That means women who are on the AI have approximately 25% more cases of osteoporosis.  I think we can conclude that unfortunately, AIs are associated with osteoporosis as a side effect listed under toxicity. Given the number of women in the study, it was declared statistically insignificant.  But, it is not equal.

    I also need to read more carefully, but being on a biophosphonate concurrently might have been in the mix.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited October 2011

    Sorry I sent you to the wrong page, chemo brain still jumps onboard sometimes.

    Actually that is not how you calculate, and I apologize, but you have it wrong. The 25% is far from reality. You can actually see the percentage there, it's 1,7% (the number in paranthesis after each number is the percentage)

    Out of the 2240 patients that took exemestane, 37 got new osteoporosis. That is 1,7%. 

    Out of 2248 patients who took placebo, 30 got new osteoporosis. That is 1.3%.

    The difference is 0.4% Considering that the life style and diet were not taken into consideration, this percentage practically makes doctors safely say that there is no significant bone loss caused by Exemestane.

     You can see that the only areas where there is a significant difference are sweating and joint pain, with a 3% more women who took exemestane having the symptoms compared to those taking placebo.

    As for the difference in recurrence rate, that speaks for itself.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited October 2011

    Thank you very much for the clarification. The good news is, this study seems to indicate there is minimal difference.

    This study does not seem to discuss oncotype. As for the difference in recurrence, my numbers only bear about a 2% improvement.  My oncotype chance of return is 8% with Tamoxifen.  AIs are supposed to give me a 25% benefit.  That's an additional 2%.  Not significant.

    I don't understand why this flies in the face of all the studies to-date indicating signficant bone loss.  It also contradicts the individual experiences of users here--many, many women report significant bone loss on the AIs.

    Another issue I'm sure someone much more schooled than I can answer:  is it reason for worry that the study was funded by Pfizer?  How does the FDA or neutral bodies make sure the numbers aren't spun?  It is interesting the studies tend to indicate what is best for the drug companies and increase their profits.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited October 2011

    I think it is because there werent' many studies of this magnitude. This one was started in 2005.

    We also know  that for the time being there is no study concluded yet regarding the efficiency of 5 years of Tamoxifen followed by 5 years of AI compared to AI alone for post-menopausal women. There is no study yet concluded about using AI's for more than 5 years.

    As for the previous studies concerning AIs and bone loss.... someone mentioned the fact that the study was done using patients with a median age of 62.

    Considering the fact that there is no study done yet for pre-menopausal women who were pushed into menopause by chemo/Lupron/oophorectomy right before the started the AI's, and the results this study shows us, and knowing the fact that most bone loss occurs in the first 5 years after menopause, to me it stands to logic that it's not the AI's that cause the bone loss in this case - it's just the menopause.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited October 2011

    Yes, I think that's a safe conclusion.  Chemo, on the other hand, is a disaster for bones.  One can lose up to 8% of density.  And, there are some questions about the acceleration of menopause in patients who enter it "too" early.  I can say one thing:  I'm really disappointed my oncologist didn't do a baseline BEFORE my chemo regimen.   With the history of osteo in my family it is possible she could have put me on Zometa concurrently, thus sparing me my latest bone diagnosis.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Hi JO, just thought about you earlier today.  Glad to see you are checking in occasionally.  I've actually been on 3000-5000 IU's fo D3 for at least 8 months and my recent test came in at 42 which is only about 10 points above where I placed last year.  Seems the numbers go up quicker for some people than others.  I will stay on 4000-5000 and test again in February when I go back to my MO.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited October 2011

    Make sure you take calcium too, not just Vit D3. I am now on only 3,000UI daily from 5k daily. they sad that 66 is just great and they want to keep it this way.

  • agada
    agada Member Posts: 452
    edited October 2011

    Thanks everyone for all the sites listed in the messages.  My Vitamin D was 9.  I Was on 50,000 units a day for a few weeks now am on about 3,000 units of Vitamin D and Calcium a day.  Perhaps one of the papers will mention this mess I am in.Thanks again.

  • carcharm
    carcharm Member Posts: 486
    edited October 2011

    I have GERD and just found out that the medication I take for it-protonix- decreases absorption of all vitamins. I just had another EGD and she said I need to double up on it. Not sure what to do. Need D3 but get esophagitis without protonix. My hital hernia causes it.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Day, yes, I need to be more on top of taking the Calcium regularly.  I was getting cramps and stopped taking lots of things to try and track the cause and just never got back to taking the Calcium regularly.  It's also why I had dropped to only about 3000 iu's of D3 as I thought maybe the higher dose (5000-6000 iu's) was part of the cramping. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    JO - oatmeal, fish (omega 3 fatty acids), walnuts, olive oil, pomegranate juice.  Can you increase how much of these you already use?  Check the Mayo Clinic website

    http://www.mayoclinic.com/health/cholesterol/CL00002

  • peggy_j
    peggy_j Member Posts: 1,700
    edited October 2011

    I'm new to this thread and playing catchup. This might already be here, but can anyone point me to studies that show benefits of having Vit D blood level >20?

    I saw a bone endocrinologist last week and he said 20 is the minimum but for bone health in healthy patients, there's no evidence that higher numbers are better (though I see some posts here that some specific conditions/symptoms might warrant a higher vit D level, so that might be a different situation).

    This doc also said there is no known toxicity at 3000-4000 IU/day max (including food and sun) but that larger doses can cause problems. We dis-recommended taking some of the mega-dose pills on the market. Again, your doc might have recommended a different dose for a short-term specific reason but just an FYI on another doc's opinion. BTW, I posted other notes in the Bones forum.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited October 2011

    Have not been on this thread in awhile.  In Feb my D was 42, in March was 47 in July was 57 and now in Oct it is down to 44.  I started 2,000IUs of D3 in Feb.  MO wants it up to 65.  What foods are high in Vit D? Think I will double my D3 to see if it helps as well.  Any suggestions.  I do walk outside several times a week for 3 miles.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited October 2011

    Thanks Jo will check out the sites when I have time to read more

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011
    JO, that's why I'm not married - probably end up in jail for murder of a man that practiced so many bad things and still stayed healthier than me!!!  At least introduce him to the legs of an ironing board.  (for those who are scratching their head, it's a private joke between me and my 'twin', JO)  BTW JO, how many "last show' is this for you now?  Laughing  Okay, I'll stop picking on you.
  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited October 2011

    I was supplementing last year, and took my levels from 31 to 70, but stopped supplementing over this summer, as I was out in the sun a lot with my exercising.

    Well, my levels dropped to 52!!!!Frown  I am back on supplements again, taking about 5,000 - 8,000 IU Vitamin D drops daily for the past week. I am hoping that my levels get back up into the 60-70 range again. I can tell an almost instanteous result from the drops-- energy levels increased significantly in the past week.

    I guess that's what I will have to do now.... just keep taking Vitamin D in the fall/winter/early spring months.  Too bad my levels dropped.... was hoping my body would "take over", and that I'd keep up the level on my own. Sigh. A little experiment that tells me that it won't happen!! 

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