• 10 months ago

    re: low bone density...from Jane , age 65

    After BrCa treatments for estrogren + in 1997-98, I was treated with many drugs (fosamax, prolia to name a couple) to combat my osteopenia. I exercised, did wt lifts, walking, calcium supplements ...not much improvement. After a vacation from bone building prescription drugs for a couple of years, I was prescribed yet again a new oral drug Actavis-Risedronate Sodium to help my bones as I was 63. After about 5 months of faithfully taking this med, I started to have severe bone/joint pain and was limited in my exercise routine. So with medical oversight, I stopped taking the risedronate and improved somewhat in QOL. I was referred to a bone mineralist specialist who ran a new bunch of tests, 24 hour urine collection, Mg, calcium and parathyroid levels included. The whole 9 yards. Never had this done before. I followed the testing criteria to the T.

    That was the revelation I needed. I got the test results online before following up with my bone mineralist dr. I finally saw that my parathyroid level was elevated at the same time my blood calcium was elevated. I did a lot of research on the Internet and discovered I probably had hyperparathyroid DZ. So after more testing and medical HX reviewed, I was accepted as a pt at the Norman Parathyroid Center in Tampa, FL and they found and excised my parathyroid tumor and left the other 3 normal parathyroid glands intact as they were behaving and were normal in hormone production. Day surgery by very skilled doctors. The Norman Parathyroid Center does about 15 parathyroid surgeries a day. I flew there from Dallas, TX.

    So I expect my bone density test to be much improved one year after this neck surgery and I take vit D/Calcium supplements, work out, stay active. That is it. Of course, watch the alcohol, diet sodas...normal advice for anyone. When the parathyroid is stealing calcium from your bones, there is no amount of oral calcium or bone building drug that can over come that powerful hormone effect. There is some medical discussion (from a chemo nurse presenter at a Br Ca support group) that chemotherapy can have an effect on the endrocrine system and may have played a part in my one parathyroid tumor, but my Tampa, FL surgeon, Dr. Daniel Ruan, said it was just my bad luck and I could live my life w/o worrying about this problem recurring. Hyperparathyroidism is underdiagnosed, though relatively infrequent in the gen pop.

    So bottom line, go to a bone mineralist specialist and get all your labs and Look at them to see what is going on with your bones... Don't let the drs assume you are just old or just a Br Ca survivor and that is just a normal part of your situation. My bone mineralist dr did not agree with my lay person diagnosis and he wanted to put me back on Fosamax again for a year then check me again. With my bone density on the line, I said no, I need a 2nd opinion and that is how I finally got the right diagnosis for me. People, you need to know your lab results and take charge of your health. Good luck to you in your pursuit of good health and strong bones. Without the bones, life is not too rosy.

Responses

  • 10 months ago

    RE: re: low bone density...from Jane , age 65

    Oh, I forgot, my bone mineralist specialist said it is very hard to interpret bone density by going to one clinic to another. He said there is a lot of variance from one bone density machine to the next , so the best way to interpret is staying with one clinic (if possible) to look for improvement in bone density from one year or two to the next (Jane)
  • 2 months ago

    RE: re: low bone density...from Jane , age 65

    Yes, I agree. I was told to take Actonel. No way! A friend of mine was on that and developed swallowing problems and started drooling. Another friend developed jaw problems. I am just staying with increased walking, staying on a plant based diet and taking vitamin D.
  • 1 month ago

    RE: re: low bone density...from Jane , age 65

    Very good information. The parathryoid is very important in bone building (or loss.)

    One thing I'd add - just for your information - don't expect too much from this next test. Bone is very slow to respond to change. That's why testing is recommended at 2 year intervals. Also at our age (postmenopausal) bone recovery is not common. The aim is not to increase numbers, but to avoid fractures. This is done by strengthening existing bone. The medications do this.

    Also some information for you - sometimes when bone density appears to be greatly increased, it's a false positive. The reason being that arthritis in the spine and/or hip make the bone appear denser than it really is. We see this often when we do DXA scans. If the spine appears red flag better, we scan the forearm. That's because it has the same trabecular bone as the spine and can give us a better indication of your bone density. The forearm is not scanned at each visit as it doesn't really respond to medication It is what it is.

    Continue with your calcium intake (1200 mg/day. No more than 600 mg can be absorbed at a time). Exercise..we recommend at least 30 minutes a day, 3 days/week. No running (pounds the spine) and not bending or twisting of the spine.

    Good for you being proactive. So many aren't or just believe whatever they read on the internet. Also testing is really controlled by required certification of DXA technicians or clinical interpretation. It's important to find someone or some place that is Certified by the ISCD in order to get verifiable results. The clinic in the hospital where I worked for 21 years was one of the first (in 2009) to be accredited. We were one of 40 internationally accredited osteoporosis centers. To show you rare that is even now - there is not one in the state of NY, GA or SC. Just off the top of my head. There are 6 in NC where I live. The ISCD website can give you a list of technicians who are certified and doctors who are certified to interpret results.
    www.iscd.org. Play around with the site. Lots of info as well as the National Osteoporosis Foundation, www.nof.org.
      • 1 month ago
        To bonebabe: Thank you for your reply. And I see from the info you provided -you are somewhat of an authority in this field. I have not started taking any bone building meds like Actonel or Fosamax again since my successful surgery to remove the parathyroid gland that was out of control. I skipped a bone density scan in 2017, same year as my parathyroid surgery and my 2018 BMD scan was comparable to my 2016 BMD. I was VERY disappointed but then I reviewed the norman parathyroid center web site and they (MDs) said some bone matrix recovery can be slow @4% a year. So maybe I had improved. I have not broken any bones and my aches and pains have declined. I exercise on the elliptical and do weight lifting exercises, stretches. I will redo my BMD test in 2019 if the Dr will allow it. I am still in osteopenia/osteoporosis range. But my blood calcium level is in the 9's and my parathyroid level is much lower since my surgical correction. So I am hoping to make small bone recovery every year and not be expecting a quick return to normal levels. And I was asked by my GYN dr to consult with an endocrinologist after my BMD is still suboptimal which I tried to carry out, but UTSW /Dallas said they would contact me when they got the referral, and my Dr's office said they sent the referral, yada, yada, So I just dropped OUT of THAT loop. And I really don't think an ENDO dr consult is Necessary. I am doing fine, I just have to be more patient with my bone density improvement, 4%/year. And I am so grateful, someone like bonebabe, who apparently knows more @bones density testing than my GYN dr, agrees that bone matrix increase is a slow process and if you are not having any FXs, basically, that is the goal! Makes me happy. :) :) :) peace, out.
      • 1 month ago
        I'm glad I could help you out. And, yes, fracture is the goal. Also, please understand that there is no osteopenia/osteoporosis range. If you have one T-score that is -2.5 or greater or you've had a nonviolent fracture, you have osteoporosis. Also your bone density will never return to normal. That should not be an expectation. You can and should, expect your bones to strengthen due to medication, calcium and exercise, but don't be looking for a normal reading. If you do get one, it is either one of two things - arthritis or incompetent testing.

        I also agree, at this point, you probably don't need to see an endo. I would caution you about weight lifting though. Anything more than 10 lbs is not recommended. Also please, please keep your back straight. Weight lifting is not what we consider to be weight bearing. So many people get that confused. Weight bearing (recommended) is what you do while on your feet. Walking is optimal.

        I wish a healthy and fracture free new year for you!
      • 1 month ago
        Ok, thanks. and there are no nationally accredited DXA centers in TEXAS, wow. Good to know. I have been told by the drs from the Norman parathyroid center to my face as I was their patient in Tampa, FL in 2017, that my bone density can return to normal, so I will keep my hopes up. I was not warned to refrain from weight lifting and I have been doing it for years. I am not a weak person, my bones were weakened by my hyperparathyroid DZ, which I do not have any more. I will report my next BMD score / change in 2019 so truth will be tracked!