bone endocrinologists

peggy_j

Greetings my buddies in bone health

OK, I'm finally gearing up to see someone to talk about bone issues (I feel like I OD'd on doc appts. during treatment). My MO said that an endocrinologist would be the person to see, and today I learned that bone endocrinologists are somewhat rare--most endos do thyroid, diabetes, etc. Anyway, my question, if you've seen an endocrinologist, did you have a hard time finding one? I got one referral but the doc is 1.5 hrs away and semi-retired already. Not sure if I should keep looking or just tough it out and do the drive.

cycle-path

I think finding an endo who ONLY does bone is rare, but a lot of them do thyroid and bone or diabetes and bone. I think the guy I go to specializes more in diabetes than bone stuff, but I've been happy with his knowledge of bone issues.

ICanDoThis

Mine is a general, all-purpose endocrinologist who works in a large university setting.

However, we do fine. I think she likes working with someone who doesn't have diabetes. She can always answer my questions, or engage in a discussion of strontium (she's against it, because she doesn't feel the testing is adequate). I know there are bone specialists on staff, but I appear to be pretty run of the mill, just like I had dull breast cancer (you know, non-aggressive, no chemo, lumpectomy). I do believe that if things hadn't stabilized, she would have been happy to refer me up the food chain. 

However, the staff sometimes finds me confusing, they are always asking if I brought my meter.

peggy_j

Thanks cycle-path and ICanDoThis. I asked around for another referral and got the name of that same doc who's 1.5 hrs away. So I guess it's fate. I have a rare (1:million) bone condition and am at high risk for osteoporosis. This guy used to be the head of the osteoporosis clinic at a teaching university (and now has his part-time "boutique" practice. His first appt. is more than a month away) So I'm going to bite the bullet and be grateful that there's such an expert within a 1.5 hr drive. Thanks for your help. I feel OD'd on doctors appointments and was dragging my feet on this one, so thanks for your feedback and encouragement.

p.s. ICanDoThis, why is the staff asking if you brought your meter? Do they think you're asking for the radioactive strontium? ha!.

ICanDoThis

No, I think they are used to working with diabetics, who have to test their blood a lot.

They have a very aggressive program for managing diabetes at the center where I go - I am always being approached by grad students with clipboards who are doing surveys.

otter

Hi, peggy_j,

My med onco referred me to an "osteoporosis specialist" when she found I was osteopenic even before starting my 5 years of Arimidex.  I have had "hypercalciuria" for many decades (my kidneys excrete too much calcium into my urine), and my med onco wondered if that might be a treatable problem.  (It is.)

The "osteoporosis specialist" to whom she sent me is actually an endocrinologist; but she specalizes in bone disorders.  My cancer treatment is at a big university system (one of the NCI-designated Comprehensive Cancer Centers), so it's not hard to find other specialists there.  And, it's a 2-hour drive from my home... but I decided 3-1/2 years ago that I would do that drive if it meant I would be able to find docs who really knew the most up-to-date stuff.

I saw that osteoporosis doc for the first time 3 years ago.  She ran tests that quickly confirmed the hypercalciuria, and she put me on a cheap (generic) diuretic that happens to be a calcium-conserving type.  Voila!  I'm no longer excreting abnormal amounts of calcium, which helps my bones and also decreases the risk of making kidney stones.  She orders my DEXA bone scans, although my med onco would do that if there wasn't another doc involved.

I'm glad to have an extra set of eyes and brain cells keeping watch on me.  Neither my med onco nor this osteoporosis doc wanted to put me on a bisphosphonate (e.g., Zometa or one of the oral ones), because of questions that were coming out about long-term risks.  But, neither one is all that crazy about keeping me on Arimidex longer than 5 years, either.  They are both taking a "We'll see..." approach, which is fine with me.

So, if you're asking for advice, I say make the 90-minute drive to someone who knows more about bone health than other, general endocrinologists.  It worked for me.  (BTW, I did see a "general" endocrinologist for about 3 years, way before my BC dx.  That was for a weird endocrine problem, which he diagnosed and solved efficiently.  He's a jerk, though; so I'm not going to him anymore.)

otter

katsOK

Hi I am interested in what you had to say, Otter, about your bones.  I am also seeing a osteoporosis specialist as I also had osteopenia before starting Arimidex.   I started seeing her again this spring after I fell and now have a collapsed vertebrae and cracked sacrum.  I saw her several years ago when I was told I had  osteopenia caused by having a parathyroid problems for which I had surgery. She told me a couple of months  ago,  I still have calcium in my urine and she discussed putting me on a diuretic but in the end has had me lower my calcium intake to 800mg.  That has me worried as I already have bad bones.... trying to get good quality calcium and doing some exercise for it.  I took the bone building drugs when I had the parathyroid problem and she says I can't have any more.  Feel like I am between a rock and a hard spot on the whole thing.  I see my oncologist next month and am wondering what she will think about all this.  I assume she will keep me on the arimidex as I do not want to go on tamoxifen.

peggy_j

otter, thanks a lot for your note. I like your point about having an extra set of eyes. I like my MO but obviously bones aren't her speciality, and I already had two risk factors for osteoporosis before my BC Dx so I want to make sure I don't make it worse. (I won't take an AI). I also like the idea of having an expert look at my DEXA scan images; I had one done right after my Dx (unusual, but my request) and I think they were read by their technician and reviewed by my RO, so I'd love to get more expertise looking at those. Anyway, thanks for your encouragement. I like the idea of seeing one of the big guns, at least for this consultation/evaluation, so I can see where I stand and get his opinion going forward.  

LtotheK

I'll be heading to one on Monday, thanks to my new osteopenia/osteoporosis status.  I am so grateful I asked for a DEXA, even though I'm 40.  I noted women who go through chemotherapy have significant bone loss--a friend who went through treatment before me showed me her before and after numbers, and I've done some research.

My oncologist was pushing Reclast instantly.  The endocrinologist, who works with everything from diabetes to osteoporosis, told her to hold her horses.  He wants to do a full workup before he gets me on that junk.

It is a very weird time with the biophosphanates.  I don't see any doctors willing to allow Strontium, despite its wide use in Europe.  It doesn't leave us a lot of choice, but the new warnings on the these drugs really is cause for pause.  

My colleague told me she raised her numbers by a whole point by taking calcium supplements. There are natural ways to reverse at least some of the damage, and I think they are way too quick to push the drugs.

I will report back what I hear.

peggy_j

LtotheK, good luck at your appt on Monday. Hope it's helpful and yeah, I'd love to hear what you learn. Yeah, I had to ask for my DEXA scan too. (I'm 46). Not sure why they do them so rarely or late in the treatment process (I think typically they do them when starting an AI). Maybe not everyone's aware of the link between chemo and bone loss??? 

Have you done much research on Strontium? I haven't. (I'm OD'd on research). When I was talking to my husband about this yesterday he pointed out (unrelated to our issue here) that sometimes drugs result in better "numbers" but not better outcomes. His favorite example are the meds that reduce cholesterol but haven't been shown to improve actual outcomes. So just based on his knowledge of, ahem, the periodic table, he said that yes,strontium could definitely improve our BMD (because it's a heavier element) but it can displace some calcium and may not improve the outcome. (prior to my BC Dx, I heard one doc say that bisphosphonates can build bone but the quality of the bone in some patients is not very good; instead of oak, it's more like balsa wood). I'm solidly in speculation mode here, but if you've heard anything on long-term outcomes, I'd be curious. 

LtotheK

Hi Peggy,

I definitely have heard that biophosphanates build the wrong kind of bone.  I have heard it is brittle bone, and most know now that it is bone more prone to certain kinds of atypical fracture.  Even allopathic doctors were getting wary of doleing them out like candy as they did 15 years ago (so many barely osteopenic patients were given these drugs, and I think it's aggregious when it is so possible to build back bone!).

The kidney thing is what has me freaked.  My oncologist says, "We just don't know enough about these drugs."  

The thing that kind of gets me, though I understand every move can't be perfect:  as a young patient, they should have measured my bone before treatment, and had a baseline.  That one was really the responsibility of my oncologist, and I feel like she dropped the ball.  (I also feel lie those of us who do chemo really don't get away without some collateral damage on our bodies.)

Young patients on chemo clearly have bone loss challenges, and Tamoxifen may present as much of a challenge as AIs for them.  If my doc was so gung ho on Reclast, I would have rather had done it during treatment and saved some bone than start now.  And my other issue is, she was ignorant of the fact that Tamoxifen can be hard on the bones of young women.

I wouldn't be surprised about strontium.  The issue is, the body is on a cycle in, cycle out with bone, and the "sparing" drugs I have read save poor quality bone.

cycle-path

A couple of clarifications: bisphosphonates do not "build the wrong kind of bone." The way they work is this. The bones of all mammals are constantly under construction. There's something called osteoclasts that are always taking away bone, and there's something called osteoblasts that are always building bone. 

Osteoporosis is not merely a disease of porous bones -- what it really is an imbalance between the "clasts" and the "blasts." What the bisphosphonates do is fool the osteoclasts into taking their minerals away rather than taking away bone minerals.

Apparently there's some controversy about whether this works as well as they'd like it to. But to say it "builds the wrong kind of bone" is absolutely false.

The bisphosphonates are absolutely not junk. Do they give you the bones of a 20 year old who's never had cancer? No. Are they a magic potion from the Land of the Pink Powderpuffs? No. Do some/many people experience SEs? Yes. Do people taking them need to be monitored for kidney and liver function? Yes. But these drugs are successfully saving actual lives and improving quality of life for hundreds of thousands of people. 

To call these drugs junk and say they are building the wrong kind of bone is, IMO, doing a disservice to women who may be helped by them. 

LtotheK

I think you are right, cycle-path.  I hope you'll excuse me.  I think the simple fact is, I am terrified, angry that I have yet another problem, and feeling very vulnerable and that is why I am being a bit extreme.

Here are some excellent reports on the latest questions concerning these drugs:  

http://www.npr.org/2011/02/28/134064950/rare-fractures-linked-to-drugs-for-weak-bones

http://bisphosphonates.org/

http://www.nytimes.com/2011/09/06/health/06bone.html?_r=1&scp=1&sq=bisphosphonate&st=cse

Perhaps this is bunk, but here is a doctor's opinion on how these drugs build bone.

John Abramson is a family practice physician on the clinical faculty at Harvard Medical School. In his book, Overdosed America, he writes about osteoporosis, Fosamax, and the kind of bone it builds:

"The new bone, formed as a result of taking the osteoporosis drugs, is then formed primarily on the outer part of the bone, the cortical bone. This increases the score on the bone density test but does not necessarily contribute proportionately to fracture resistance."

 

A seemingly reasonable approach to questioning these drugs:

http://nwhn.org/bone-breaking-drugs

"Some researchers are concerned that bisphosphonates’ long-term inhibition of osteoclasts actually weakens bones. Without guidance from their osteoclast partners, osteoblasts may lay down bone in uncoordinated ways that create thicker, but less flexible bone. And, normal microfractures that are not repaired by osteoclasts can coalesce, causing actual fractures."

cycle-path

LtotheK: I don't at all disagree that there is some controversy surrounding bisphosphonates, and like so many drugs they have ended up not being the magic bullet they were originally thought to be. Clearly they're associated with some risk of abnormal fracture and some other SEs. And Tamoxifen is associated with some risk of fatal blood clots, and radiation can give you shingles or broken ribs, etc. etc.

But look at the points these articles you've listed are making. The NPR report is saying that they're not for women who simply have osteopenia. The NYT article talks about a "drug holiday" for those who've been on for 5 years or longer. The bisposphonates.org site doesn't say not to take biospsphonates, but rather points out the risks and advises not to rely on the drugs alone to treat your osteoporosis. Even the NHWN article, after railing against the horrors of bisphosphonates, doesn't say you shouldn't take them! It says they're not appropriate for women with osteopenia (the precise warning the "industry shills" make too, btw); and that if you've been on for 5 or more years it's a good time to take a break from them. (Once again, the same recommendation that the industry makes.)

So the point is this. If you actually have osteoporosis, like you and I, rather than just osteopenia, it's wise to take bisphosphonates. None of the sources you pointed to say otherwise. But do other things that are good for building bone also, and don't plan to take them forever, and keep a watchful eye out for SEs such as abnormal fracture. 

LtotheK

I know, cycle-path.  I really could cry a river, because the straight fact is, I know I have little-to-no choice in this matter.  I believe it reminds me of treatment a bit too much, and I just want the nightmare to end.  Oh, how I wish I were osteopenic.  I see my endocrinologist for the first time tomorrow.  Since last year, I have no desire to see my tests.  It's always worse news than I can deal with.

Besides that issue (which is huge), I am suspicious.  I don't think that's bad per se, it just means I do my homework and learn a lot here (prunes, strontium, weight lifting to name a few examples).  FRAX is another great one. The cool thing is, our risk of fracture even with osteoporosis isn't as bad as you might think.

You'll also note I don't lambast bios wholesale.  I think it's worth rigorously questioning Reclast side effects and getting a bigger picture of all the options. (And here is where age does matter--if I were 55, I really would feel differently about all of this stuff.) My oncologist pushes it on every osteopenic or osteoporotic patient she can.   It's her flavor of the month, one size fits all approach.  I get she's busy, and she's still a wonderful doctor, but that's why it's up to me to do my homework here and take it all in.

I'm not a close minded person.  I've listened a ton, changed my mind, and taken a lot from this board.  So I do appreciate being talked off the ledge.

cycle-path

Yep, I know you're not a closed-minded person. 

One of my own personal many faults is that when I "talk" to people on the internet, they all tend to run together to me. I might say the same thing over and over to the same person because I don't realize I'm writing to the same person. Most people just don't "stand out" to me on the internet.

However, for some reason I no longer recall, you're one of very few on BCO who has stood out in my mind. You seem sensible, mature, and non-neurotic. (I don't mean to imply that everyone else is the opposite.)

I agree that we must do our homework, and with doctors I tend to "trust but verify." I also agree that fracture risk is somewhat overstated. Furthermore, I hold the somewhat radical opinion that BMD doesn't tell the whole story.

I was started on bisphosphonates many moons ago, and though I believe I was already slightly osteoporotic I was probably marginal. (I don't remember the numbers.) I couldn't take calcium due to digestive trouble, and it was only recently that one of the docs suggested Vitamin D alone. Fortunately I can tolerate the pure Vit D, and apparently that's better for bones than the calcium is.

I had incredible difficulty with oral Fosamax, the first bisphosphonate I tried, and I'm still not sure it didn't give me permanent gastrointestinal damage. So I was switched to IV Boniva and eventually to IV Reclast.

Of course I don't know what the long-term good or bad effects may be, but I have no jaw problems, no abnormal fractures. My BMD scores are getting better. A couple of weeks ago I got my most recent Reclast treatment, and now I'm probably on a Reclast vacation, subject to new information coming out in the next year. I think I'm about 6 months away from my next DEXA scan.

I have to say I don't worry a lot about the BMD issues. I'm ultra fair-skinned and somewhat thin, and while I didn't have long-term steriod use I did have some in the past. I accept it, along with never-ending skin cancers, as being pretty normal for women of my heritage. But that's just me, and everybody looks at life differently.  

LtotheK

I appreciate that, cycle-path!  Very much.

You and I seem to be cut from the same cloth: super-fair, slim, and I, too, find calcium supplements very difficult.  And I am looking forward to all my future skin cancers, courtesy of my mother, grandmother, aunts, and uncles.  They are farms for skin cancer, seriously.

I know I was vitamin D deficient for probably my whole life.  I've gotten my numbers up in the past year, though a year out of a lifetime doesn't mean much I'm sure.

I also hear you on the BMD issue, there are a number of researchers out there who do not believe it aligns with fractures per se (sort of like the cholesterol issue, which I believe an earlier poster pointed to).

All this said, again I'm super-grateful to BC.org for helping me access smart people and lots of great things to look into.  I will report back on my endocrinologist in the hopes that my experience can guide the way for someone else!

LtotheK

Thought I would report back and let everyone know how things went.  I had an extremely thorough exam and intake with an endocrinologist who specializes in a wide variety of thyroid and bone issues.  He took a bunch of blood, but generally felt that chemo kicked me into menopause in the years when I wasn't even completed in my bone development.  In order to halt what may be active bone loss in process, he recommended Prolia.  Not a biophosphonate, I was surprised, He said it works much better to generate bone.  The issue is whether my insurance will cover the $800/2 x yr shots.  Hey, IMO that is what my credit card is for.

I will know next week a bit more about whether I'm in full menopause.  But, as per usual, I just love to break the mold : ((

cycle-path

I love the description of your relatives as skin cancer farms! In my case we were all just fine as long as we stayed way up in the north of Eastern Europe. But no, those silly ancestors of mine just had to get over to America. I've been very careful with my skin since childhood and the only skin cancers I've had have been on my hands and wrists. Hard to protect that area without gloves or daily sunscreen. Interestingly, about 20 years ago one dermatologist practically commanded me to start putting sunscreen on the backs of my hands Every Single Day. (I didn't.)

Do you also have tiny little veins that try to run away whenever they see a needle coming? I tell you, there are very few medical procedures I mind, except the part when an IV is inserted. Once that ordeal is over, which almost always takes about 20 minutes and requires that several veins be tried, often by 2 or 3 different personnel, everything goes fine. But I'm often unsure about whether I'll survive the IV insertion. 

I just feel in my gut that BMD is not telling the whole story. We have an enormous and very frisky dog who's caused me to stumble, fall, twist, and tumble many times. I've had lacerations, awful sprains, and enormous bruises. But never a broken bone. Last summer I had foot surgery in which a bone was sawn, remodeled, and pinned. Healing went very well. Maybe I'm living in a dream world, but I just feel there's ample real-world evidence that my bones are pretty strong.

Interestingly, I just happened to see an ad for Prolia this very day. And on one of the other BCO threads I saw someone talking about Xgeva quite recently.

I have a couple of very wise female friends who've gone through BC. Both are wonderfully calm and unflappable and I rely on them tremendously for advice. I had lunch with one of them today.

We talked a lot about the issue of "trust but verify" with regard to doctors. Until pretty recently I usually just went along with whatever a doctor suggested, but, as my friend and I concluded, the more one gets involved with the medical establishment the more one realizes that one needs to do one's own research.

Regarding the price of Prolia -- I think you'll find your insurance will probably cover it. I forget the price of my annual Reclast party, but it's not much less than your $800 x 2. And my insurance company has never made a peep. 

slousha

Hi cycle - path

After active healing I was going on with Femara althought having slightly osteopenia in my hips and beginning of osteoporosis on backbone. For a year being on D3, Calcium, exercising a lot eating healthy my bone straightness improved a little - withouth any medicine. Now my Onco ordered to the endocrinologist to put me on Prolia, it's a completely new drug at us and I'm afraid taking it.Who could give me any information about acting upon, Ev.SE's ...?

Thanking in advance

Greetings

LtotheK

Slousha, I'm in the exact same boat: ostopenia in hips, osteoporosis in back, and they want same thing: Prolia.  You should google SEs of Prolia.  They are not insignificant.  It lowers the immunity, and serious infection is possible.  It has all the same concerns for jaw necrosis as the bios (though my endocrinologist reports that is 3 - 5 people per million).  High cholesterol is another area of real concern for me.  My friend also found that "breast cancer and constipation are the two most common reasons for terminating the use of Prolia."  Excuse me?  My other major issue is the website says they do not understand the medical significance of the drug's effect on bone healing.  Huh.

Let's put it this way, even though this is a royal pain in the behind, I will be seeking a second opinion.  Lord, am I tired of second opinions.

My doctor says Reclast won't build as much bone as Prolia.  If you read around about Prolia, it has been a disappointment on the market, and now they are trying to launch it as a bone mets drug.  I'm no conspiracy theorist, but I really got an oogy vibe sitting in the endo's office with the pharma sales rep right next to me.  

slousha

Thanks ltotreK,

I will try to refuse Prolia and ask the Endo to postpone it till next summer  (will copy the SE's), don't know how  my Onco will react hearing this!

Greetings

LtotheK

I think before you refuse, you simply need to have a good conversation about the benefits and the risks.  The doctors really don't talk in this manner.  For instance, I was stupid not to ask, "Okay, what's my fracture risk right now compared to SEs on Prolia?"  I think these drugs can be appropriate, please don't misunderstand me.  Reclast might be a better choice.  You just have to weigh the benefits.

cycle-path

slousha, all I can tell you is my own history and what the docs have told me. I think the problem of osteonecrosis of the jaw while taking bisphosponates is insignificant. I realize there are concerns about whether the bone built by the bisphosphonates is high-quality bone. Some people suffer side-effects from the pills or infusions - I had horrible side effects from the pills but nothing at all from the infusions. 

I think it's worth the risk to take the bisphosphonates. Also, BTW, your oncologist can't order your endocrinologist to put you on bisphosphonates. The decision is made by you and the endocrinologist, not by the oncologist. In my case, my oncologist sent me to an endocrinologist to decide about it. 

slousha

Hi cycle-path,

Last year before taking Femara I was at endo first to see how my bones are doing. I  have had slightly osteopenia in my hips and beginning of osteoporosis on backbone. I got the prescription for bisphosfonate risendronat (Aktinel) tablets to take 2 times in the months  Have had so much difficulties and stopped on my own. For a year being on D3, Calcium, exercising a lot, eating healthy my bone straightness improved a little - withouth any medicine. And now I should take Prolia. I really don't like to burden my body, but you and LtotreK are right; I should be more diplomatic with my doctors.

Wi'll see!

Best Usha

Linda54

otter, I have recently been dx with hypercalciuria. I had my first bone density test and it showed osteoporosis. I was shocked by this because I do everything I need to do to keep my bones strong because I do fall in the high risk catagory.  My doctor had me do the 24-hr urine collection test and it showed high levels of calcium. My parathyroid levels were fine.  The doctor gave me a perscription for hydrochlorothiazide to decrease the urine calcium loss.  Is this what you are taking?  Now we have to make sure we do not let our potassium levels get low.

I was told that this kidney condition is what contributed to my osteo and it can only be detected by doing the 24-hr urine test.  It is a shame that we get checkups every year and they take our blood and we pee in a cup but something is pulling out our calcium and our bones are getting weaker by the minute but yet it cannot be detected in our yearly checkups.  I should have had a bone density 5 years ago because of being high risk and being menopausal and cannot take HRT. Nobody told me!!!!.....

5-10% of healthy people have hypercalciuria and it usually is genetic. My doc told me to inform my relatives of my dx.

otter

Hi, Linda --

Apparently, it's the "thiazide diuretics" (one of 3 different classes of diuretics) that help our situation because they prevent the kidneys from excreting so much calcium.

I was prescribed chlorthalidone.  That's the generic version of an old-fashioned thiazide diuretic.  My "bone endo" said she also uses indapamide (brand name Lozol), which is also a thiazide diuretic, but she thinks chlorthalidone lasts longer so the blood levels don't fluctuate as much as with indapamide.

She didn't offer me hydrochlorothiazide, but it works the same way as chlorthalidone and indapamide.  Yes, we do have to keep an eye on our potassium levels now; but that isn't a problem for me because I'm prone to high potassium due to the treatment I had for an unrelated endo problem.  We also need to keep watch on our calcium levels, because high blood calcium (hypercalcemia) is a common SE in people taking thiazide diuretics.  For that reason, my bone endo told me not to take more than about 1,000 mg of calcium per day.  That's quite a bit less than some women are taking.  Hypercalcemia can lead to all sorts of problems, like calcification (hardening) of arteries.

It's always something, eh?  I've known for a long time that I had hypercalciuria.  I had a problem with kidney stones when I was in my 20's, and it was diagnosed then.  It was confirmed about 10 years ago by a different endocrinologist, who did a 24-hr urine test out of curiosity when I told him I'd had a history of calcium-containing kidney stones.  He also did DEXA bone scans 2 years apart, to "show" me that my bones were thinning... but they weren't.  My bone density then was wonderful -- not even close to borderline osteopenia.  He was stunned.  He also forgot all about the hypercalciuria he'd just confirmed, so he didn't try to do anything about it.  'Course, I was pre-menopausal then, so my bones should have been great.

You are right in thinking there ought to be more attention paid to things like hypercalciuria as a cause of osteoporosis.  I got my med onco interested in it when I showed her a research article that said it was a common cause of "secondary osteoporosis," and was fairly common among menopausal women.

otter

sam52

I did take Fosamax for about 3 years while on aromasin, but I actually went from osteopenia to osteoporosis.Then a visit to an endocrinologist and lengthy testing determined that I had hyperparathyroidism - a common cause of osteoporosis ( and incidentally, seems to be linked in some way with bc).The parathyroid disease was corrected surgically; then a few months laterI went back to the original endocrinologist to discuss my latest DEXA scan. Despite the fact that it showed I had osteopenia of the hips and osteoporosis of the spine, she decided not to treat it.This was on the basis of FRAX  ( you can do your own research as to whether you fall into the 'treat' or 'don't treat' category by going to their website). 

The endo also advised me that bisphosphonates have been shown to cause spontaneous fractures of the femur, not to mention the possibility of osophegeal cancer and osteo-necrosis of the jaw - all rare, maybe, but enough to urge caution. Furthermore, she cited recent research which has shown that some post-menopausal women taking calcium supplements have got atherosclerosis, presumably because the calcium is then deposited elsewhere than in the bones.

So, finally, I am not taking any meds for my osteoporosis, but am trying to get calcium from my diet and exercise in order to ameliorate the situation.

peggy_j

sam52, do you know how much extra calcium you have to take to get atherosclerosis? When I asked my MO this question, she said as long at we stay close to the recommended daily amount (i.e. don't take 2x or more) we should be fine. Did your endo quote any numbers or refer you to the studies? thanks

leaf

With apologies to sam52, since she hasn't posted yet:

I took a huge amount of calcium for the last 20 years or so - 3.6gm of ELEMENTAL calcium/day because I had a low calcium blood level after half of my thyroid was removed.  My onc cut this in half last summer. I'm going for my first Dexa scan this week.  I'm just finishing 5 years of tamoxifen (for LCIS and nothing worse).

Sounds like the calcium supplement + heart attack risk issue is controversial though..

Some doctors think it's possible that taking calcium supplements may increase your risk of a heart attack. Other doctors believe that calcium supplements have little or no effect on your heart attack risk...More research is needed before doctors know the effect calcium supplements may have on your heart attack risk. The calcium supplements that some doctors are concerned about are those that contain only calcium — not supplements that combine calcium and vitamin D or multivitamin supplements...Current recommendations regarding calcium supplements for people who have, or have risk factors for, osteoporosis haven't changed. As with any health issue, it's important to talk to your doctor to determine what's best in your case.http://www.mayoclinic.com/health/calcium-supplements/AN01928

Dietary calcium has no effect on atherosclerosis. In fact, a moderate amount of calcium from non- and low-fat dairy products helps lower blood pressure, reducing cardiac risk (though a very high amount may increase a man's risk of prostate cancer; see HMHW, March 2001 and January 2004).http://www.health.harvard.edu/newsweek/Counting_coronary_calcium.htm

Further analysis suggested that calcium supplementation may reduce the risk of hospitalization and mortality in patients with preexisting atherosclerotic cardiovascular disease. This trial provides compelling evidence that calcium supplementation of 1200 mg daily does not significantly increase the risk of atherosclerotic vascular disease in elderly women.http://www.ncbi.nlm.nih.gov/pubmed/20614474