So, I’ve had an extensive list of questions for Dr. R every visit I’ve had since last July. At every appointment I never get around to asking all of them – too much to talk about!
One of those questions on my list was, “Do I need a bone density test?” I wrote about this back in December – Skeletal Survey, PET/CT, MRI, DEXA. A bone density was one test that I have never had since my diagnosis in 2009.
I finally inquired and he confirmed that a bone density would be a good test for me to have. I assumed, stupidly, that the test would be normal – how bad could my bones be, I’m only 29! I wanted to have a baseline as I know bone loss is a side affect in MGUS/SMM.
There was a bit of back and forth regarding whether I would have the test at DFCI or just have my PCP order it. I ended up just having the test ordered through my PCP and there was a little confusion on whether or not my insurance would cover the test due to my age. My PCP repeated over and over, “Please be assured that bone loss occurs over many years and even decades. There is no urgency for you to have this test at this present time.”
Boy, was she wrong. Long story short, I had the bone density test on Friday.
The test in itself was a piece of cake. By far the least invasive, shortest test I’ve had to date. I didn’t even have to change into a gown or take off jewelry.
I met Pedro, the hilarious technician who would be preforming the test. He was a hummer. Meaning, he hummed between every sentence he said.
“Sit right here. hmmmhmhmhmm. Lay your legs out straight. Hmmhmhmmmm. Move to your right slightly. Hmmhmmhmhmhmmmmmm.”
You get the idea. ;)
A few quick scans later I was done. I asked Pedro why not ALL bones are scanned (instead of just my femur, lumbar spine, and hip) and I was told that those bones give an indication of what bone density is throughout the body. Doesn’t really make sense to me, but whatever. It makes me think of bone marrow biopsies…how can a tiny 1-3cm piece of bone be enough to determine how many plasma cells are in the whole body? Crazy.
I was told that the results of the DEXA scan should be finalized by that afternoon. I decided around 4PM to call my PCP’s office to see if a nurse or someone could read me the results over the phone…again…assuming they would be normal.
I should have known it was bad news when my actual doctor called me back immediately.
My bone density was not normal. Far from it, in fact. All my T-scores were abnormally very low. My doctor is most concerned with the low density in my lumbar spine because it has a T score of -2.2. Osteoporosis is classified starting at -2.5. :( She said that if I were a postmenopausal woman (I am not) the -2.2 T score on my lumbar spine would be considered osteopenia.
(Fudge is not the actual word I repeated in my head after I heard these results but I’ll keep this post PG ;))
My PCP had no recommendations for me other than weight bearing exercise (which I already do) and calcium+D supplements (which I already take). She couldn’t give a recommendation regarding how to treat this low bone density in a 29 female as oral bisphosphonates are only typically given over 5-10 years. That’s really not going to help me at age 29. She let me know she had already faxed the reports to Dr. R and suggested I possibly see an endocrinologist who should help determine appropriate steps moving forward.
Interestingly, Dr. R referred me to an endocrinologist at BWH when I first started seeing him – one of the many specialists he’s referred me too. He thought my thyroid was slightly enlarged – but the ultrasound and all blood tests were normal. That was a little over three years ago.
Needless to say I’m really upset about this, especially since my PCP gave me a hard time about getting the test. Just makes me realize how important it is to advocate for yourself and fight for the tests that are needed. When I had asked Dr. R about a bone density test about a month ago he agreed that it would be an important test for me to have as a baseline.
I really thought my bone density would be normal. Can’t I catch a break? Just not in my bones which apparently have me confused for an old lady! Ugh. When it rains, it pours sometimes.
The importance of bone density/DEXA scans: Study Suggests MGUS Patients Receive Inadequate Evaluation, Follow-Up, And Treatment
Monitoring MGUS should include DEXA scans: Monoclonal gammopathy of undetermined significance: a consensus statement