info from the bone endocrinologist

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peggy_j
peggy_j Member Posts: 1,700

I had an appt. with my fancy bone endocrinologist and wanted to share some info. I think we've discussed most of this before, but wanted to share this info if it's helpful. As an FYI, he used to be the head of the osteoporosis clinic at a teaching med school and is now semi-retired with a consultation-only practice.

Main points:
1) SERMs and BMD for pre-meno women. He confirmed that SERMs do not build bone for pre-meno women. He said the estrogen "milieu" is different for post-meno women and SERMs. He said Evista shows the same phenomenon. (a non-BC SERM used for bone loss). He emphasized that any bone loss while on tamoxifen would be "subtle" and that my decision to take it should be made w/ my MO based on its cancer-fighting benefits not potential bone loss. In my case, I'm in my late 40s, so he said if I take tamoxifen for the next 5 yrs as I'm approaching meno, (avg. age 51, but could come earlier) my estrogen will drop off before my last period, so in this next five year period I could see some subtle bone loss followed some bone gain as my estrogen level changes.

2) calcium supplements: he said to shoot for 1000-1200 mg a day, including diet. There is no benefit in taking more; your body won't use it. Calcium is very insoluble (unlike water-soluble Vit Bs or Vit C) and can lead to other problems. He said the issue with hardening of the arteries (etc) is a relatively new theory and most of the research is coming from one doc in NZ. (so not widely accepted by everyone yet) Regardless, excess calcium is known to create kidney stones etc. He said to not discount the amount you get from your diet. Prior to the appt. I filled out a complicated grid about my eating habits and he calculated that I'm getting 700-800 mg. a day, so I should only take 500 mg/ day. (I had been taking 1400 mg/day) To simplify, he suggested I get a multi-vitamin for "mature women" that has 500 mg calcium and not take any extra calcium supplement.

3) Vit D. He said the general recommendation on Vit D supplements of 600-800 UI is probably too low and he thinks 1000 UI is probably better. He knows that some cancer researchers are recommending extra Vit D. That's not his expertise but he said there is no known toxicity when taking 3000-4000 IU day. (this should be the max including food and sun exposure). In my case, he recommended a supplement of about 500 IU day. However, some supplements are mega-doses (like 10,000 IU/day) and that's too much.

4) Exercise: He though my level of exercise was fine. I walk ½ hour day, gym 3x/week (including arm weights and ankle weights).

5) Bisphosphonates: the risk of jaw necrosis is around 1:10,000 to 1:100,000 patients. He doesn't think the risk is an issue for most patients. However, I have complicated dental issues (and he knows my oral surgeon's opinion on these drugs) so he agreed that it would be reasonable for me to avoid them.

6) Monitoring bone health. He reviewed my DEXA scan at length. As we've discussed, the T-scores are compared against young women and yes, my hips are classified as osteopenia. He said the Z-scores (age-rated scores) are more important. My spine is good but I'm lower-than-avg on my hips, but he said it's nothing to worry about today. Everyone's anatomy varies. (FWIW, I had my DEXA scan 2 wks after Dx and prior to any BC treatment, even surgery). He used the FRAX website to show the risk of breakage, which is minor. (FYI, FRAX has very little data for young women and it assumes everyone is post-meno). He said the prevailing attitude in the bone world is to look down the road 5-10 years. i.e. there's no benefit today in taking meds today (etc) since I'm "only" osteopenia. But monitoring is important. (get a scan every 2 years or even once/yr on tamoxifen if I'm worried about it). Good diet is important but it's not worth taking other action today to help my bones 40 yrs from now. He also said that the current research on new meds is very promising and expects they'll be new types of meds within the next 10 yrs. (I didn't press him for details)

7) DEXA scans. He said it's important to get scans done on the exact same machine each year (not just the same location). The serial number is listed on the printout (in my case on the lower-right hand side).

Your doc might have a different opinion for your case but FYI in case this is helpful. I was disappointed to hear about the SERMs (for example) but was glad to get an opinion from someone who's a bone expert.

Comments

  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2011

    Some interesting points (like always asking for the same DexaScan machine), but did he mention the need for magnesium and other minerals (like Boron, per the most recent research), to be sure you're absorbing the calcium you're ingesting?  And did he mention Calcium Citrate as being more bio-available than the calciums (like calcium carbonate) in some multiples?  

    I share your concern re. bone loss after seeing my osteopenia worsen by 4% in the past 2 years. After what I considered no real help from my conventional doctors, I finally went to a naturopathic doctor, and am extremely pleased with the indepth hormone testing she did to uncover some hormone deficiencies and antibody reactions (e.g. a high intolerance to wheat), all of which I now believe also play into calcium absorption.      Deanna

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

    Deanna, no he didn't discuss magnesium, boron or the diff. types of calcium.  (though he asked me to bring my current supplements and I'm currently taking calcium citrate). Afterward I wished I'd asked about that, but I went in with a long list of Qs and stretched my 1 hr meeting into 90 mins as it was. ;)

    I haven't talked to a naturopathic doc yet so it's possible they may have other information and opinions. I wanted to start with the top guy I could find in conventional medicine and to share his info/opinions. FWIW, he confirmed that bone loss is common as we age (I think he said a few % a yr is typical as we go through menopause and several years afterward). My DEXA scan includes a graph of typical bone loss (a decline during meno and afterwards, and then a tapering off, or reduced rate of bone loss, in our later years)  

  • otter
    otter Member Posts: 6,099
    edited October 2011

    peggy_j, THANK YOU!  That's a terrific summary that will be lots of help to us.

    I did ask about calcium citrate vs. calcium carbonate when I went to a nutrition conference at the osteoporosis clinic in my cancer center.  One person said calcium carbonate is cheaper than calcium citrate (which is true), so take the cheapest one because it really doesn't matter.  But, someone else pointed out that calcium carbonate is not absorbed very well if taken between meals, so it should be taken with food.  I think it had something to do with the need for gastric acid.  Calcium citrate, OTOH, can be absorbed equally well with or without food in the stomach, so it can be taken any time. 

    I was told by two other doctors (one of them an endocrinologist, the other a urologist) that calcium citrate is less likely than calcium carbonate to contribute to kidney stone formation.  I really don't know why that's true, but it was important to me because I have a history of calcium oxalate kidney stones.

    otter

  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    I too have a HX of kidney stones and I too have been told to take calcium citrate instead of calcium carbonate.

    Thanks, Peggy, for all that info! Much appreciated. I used the FRAX tool. In the next 10 years I have a 9% chance of a major osteoporotic fracture and 1.3% chance of a hip fracture. 

    I also really appreciate the recommendation that you get your DEXA scans on the same machine. I looked at my records and mine have so far all been on the same machine, so I'll keep going to the same place! 

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

    Great, glad this is helpful. And thanks everyone for the reminder about calcium citrate vs. calcium carbonate.  BTW, can anyone recommend a multi-vit with 500 mg of calcium citrate? I went to two stores yesterday and came home empty-handed. (regular drug store + a health food store)

  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    I sorta doubt there is such a thing. I just get Citrical.

  • susand
    susand Member Posts: 226
    edited October 2011

    peggy, thank you for taking the time to pass on the information that you got from the bone endocrinologist.  It is very appreciated.  I take my calcium citrate separate from my multivitamin.  I take it in a liquid form.  I was told it may absorb better this way.  A serving size is 2 tablespoons which I take at different times of the day for better absorption as well.  each tablespoon has 600mgs., so if you are only trying to get 500 you could probably just take I little less than a tablespoon a day.  It also has Vitamin D and Magnesium in it.  If you are interested, I buy it at the health food store (either nature's pantry or mother earth).  The brand is Bluebonnet. It tastes pretty good too. 

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

    FWIW, I met with my MO yesterday. She's still not convinced that SERMs reduce BMD for pre-meno women (says there have been no long term studies). FWIW, she said that DEXA scans do emit radiation (for some reason, I thought they didn't. Somehow I missed that big X in the middle of the name. duh). She doesn't recommend getting them more often than once every 2 yrs--says I won't see any changes before then. This is consistent. Every doc I've talked to has mentioned 2 yrs as a period for getting scans if we're monitoring BMD; the 1-yr idea was my idea and apparently a bad one.

  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    peggy, it's possible insurance will only pay for it every 2 years anyway.

  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited October 2011

    I had a bone resorption test come back in the "red zone" last year, i.e. my body was taking out calcium from my bones faster than I was replacing it.

     I have been on the magnesium protocol for about 1 year now, and added calcium citrate into my regime about 6 months ago. I was also told that it is very important to get Vitamin K, as Vitamin K ensures that you are absorbing your calcium. I did not know about Boron.  I also had a hair analysis done, and my copper levels were very high, so I took Molybdenum for about 4 months to get my copper levels down, which, in theory should help with calcium absorption. The magnesium protocol is magnesium glycinate, 3 times daily. Take as many as your body can handle, you will know when your stool gets loose. I now take magnesium 2X daily, with small dose of calcium in the a.m., and another dose in my multivitamin.

  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    Marianna, what about Vitamin D? Some docs believe the D is more important to take even than the calcium.

  • peggy_j
    peggy_j Member Posts: 1,700
    edited February 2012

    bump for annie. ;)

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