I have results from the Dexa scan and they are... - Bone Health

Bone Health

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I have results from the Dexa scan and they are not good but…

MWZ3 profile image
MWZ3
21 Replies

This time my left arm was scanned as well as my back and hips. Results as follows:

Arm

-4.1 (worst measurement -5.1)

Hips

Neck -2.4 (total -1.9)

Back

L1 -1.8

L2 -3.1

L3-3.8

L4-5

L1 -L4 3.6

L2 -L4 -4

Interesting that the hips are still not too bad so my lowest reading if I accept that is not osteoporosis overall. My bones are tiny and I have broken no bones since childhood.

21 Replies
Killbill234 profile image
Killbill234

Never heard of dexa on arm

MWZ3 profile image
MWZ3 in reply to Killbill234

First time for me too. It was a new machine.

elaine2447 profile image
elaine2447 in reply to MWZ3

It is to test for primary hyperparathryoidism. It is supposed to be the non dominant forearm. Unfortunately I broke my wrist on the non dominant one so they did the right one which was -4.6. I dread to think what it is now. I did have a parathyroid operation almost two years ago so hoping that the deterioration in my bones has slowed down. Your scores are not good, depending on your age, mine are grim but I am old. If you haven't fractured anything, then you obviously have strong bones.

MWZ3 profile image
MWZ3 in reply to elaine2447

I’m 77. Yes, I have tiny but strong bones.

FearFracture profile image
FearFracture in reply to MWZ3

A number of doctors (Dr. Lani Simpson, Dr. Brown (betterbones.com) and Dr. Ott) seem to agree that DEXA scans can skew the results for smaller ppl. You can also check out Dr. Ott’s BMAD calculator at courses.washington.edu/bone... If you have or can get the ancillary data from your DEXA scan you can use the BMAD calculator to see if it returns different results.

MWZ3 profile image
MWZ3 in reply to FearFracture

I got -3.4 for the back and -1.9 for the hips using this one

FearFracture profile image
FearFracture in reply to MWZ3

Did you already have the ancillary data? I can’t get the facility that did my scans to give me the data. My t-scores aren’t good. Lumbar spine in 2019 was -3.9 and in 2021 it was -3.7, which is not a statistically significant change. My hip scores are a little better (off the top of my head, I think they are around -3.1 ish). I’m 4’11” and currently weigh around 108 lbs and have no fragility fractures. That’s why I really want to get my ancillary data and plug it in to the BMAD calculator to see if it shows better numbers.

The person on this website who told me about Dr. Ott’s BMAD calculator said that her t-scores improved by 1 full standard deviation when she entered the data in the BMAD calculator, which is huge. Note, she is around my height.

MWZ3 profile image
MWZ3 in reply to FearFracture

You have a right to your full results. I bet yours comes down if you looked at it another way. No fractures tells you your bones are strong. You are tiny and would have tiny bones.

FearFracture profile image
FearFracture in reply to MWZ3

I am working on getting it. As a matter of fact, earlier today, I looked up the website for GE Lunar, found a phone number, talked to 3 different ppl, and was then told I would get a call back. A few minutes later, the GE Lunar rep who services the DEXA machine that my scan was done on called me back and walked me through how to print the report with the ancillary data. Now I know that there is, in fact, a report that can easily be printed with the ancillary data.

Tomorrow, I will be calling the facility one LAST time and asking for the data. I know I will have to leave a message for the person who handles this so when I call I will also ask for the name of the highest level person at the facility and if I don't get a response regarding the ancillary data within one week, I'll send the person in charge a letter, telling them everything I have done to try to get my DEXA info (it's been a saga) and that I expect to receive the my ancillary data. Note, if none of that works I will take further action.

:-) I am really determined. It's pathetic that a so-called healthcare facility makes trying to get/stay healthy so difficult.

MWZ3 profile image
MWZ3 in reply to FearFracture

Good on you!

FearFracture profile image
FearFracture in reply to MWZ3

Ugh! They still refused. I found a form on Dr. Lani Simpson's website that you can fill out and take to the facility that did your scan to request the needed data. I did this. I printed it out and highlighted that I needed the ancillary data. The person at the front desk had no idea what I was talking about, so she got a technician. Then someone higher up approached us and said that they could not provide me with the ancillary data. I honestly don't understand why they are refusing.

The person who said that they wouldn't provide the data said that the DEXA machine used did not have the capabilities to print the needed info without creating a customized report which they refused to do. That is not what the GE LUNAR rep told me--the GE LUNAR rep was even able to walk me through the sequence of steps to get to the exact reports needed. I told the people at the facility that GE Lunar said otherwise but they said that wasn't true.

During the conversation with the two women at the facility, I mentioned the machine number that I had my scans done on, and the woman who is in charge told me they couldn't give me that info. I let her know that I already have the DEXA scanner number because it is printed on the bottom of my DEXA report--they had no idea that they provide that info on the report. LOL.

I left empty handed. Today, I sent an email to my primary care physician to see if her office can get the ancillary data for me. I'm going to give it a few days and if my primary care physician can't get them to give me/her the data, I only see a couple of options, write a letter to the CEO/president of the facility (or whatever his/her title is) and copy the Board of Directors or go to the media or pay a lawyer a few hundred bucks to get my freaking medical records.

MWZ3 profile image
MWZ3 in reply to FearFracture

They could write down the information by hand and give it to you if they cannot print which I doubt. It is not so much information that they can’t do that. It is very suspicious.

FearFracture profile image
FearFracture in reply to MWZ3

I agree with your comment, it is very suspicious.

They are unwilling to do anything to attempt to help me get the info I need, and I even explained why I need it. I was calm and respectful, so it has nothing to do with how I requested the data. The senior staff member I spoke to yesterday gave me her card and asked me to call her directly if I needed to speak with anyone again, but since she denied my request for the data, I really don't see any point in my calling her.

If my primary care physician is unable to get the ancillary data, I feel like my only option will be to escalate the matter.

MWZ3 profile image
MWZ3 in reply to FearFracture

Maybe ring her and say to her, “I have pen and paper so I need you to call out the information I need.” That should be doable and shows you have given them a way to provide the information. They will know you are not dropping it. You have a right to your results. If that fails, let them know you are taking it further. No one has the right to refuse you your own health information.

FearFracture profile image
FearFracture in reply to MWZ3

Honestly, at this point, I wouldn't trust getting the data from them verbally. Maybe I will call so, as you say, they will know I am not dropping it, and say that I would be happy to come by and snap a pic of the data or jot down the numbers myself if they will pull them up on a computer.

I did get a reply from my primary care physician. Basically, the office admin didn't understand my request and they sent me copies of my DEXA summaries, which I actually gave to them :-). I've since replied and provided a link to a sample GE Lunar ancillary report avoidboneloss.com/ge.htm (you have to scroll down to see the ancillary data) to show them what info I am looking for and I requested that they ask the facility that did my scans for my ancillary data. Also, I stated that if the facility refuses to provide them with the info, I will pursue other avenues to get my health data. People talk, so I'm hoping if my PCP reaches out to get the info and the facility gives them any grief, that my PCP's office might mention, "She's not going to let it go." LOL.

I was trying to decide if I was going to have my next DEXA in July 2022 or in November 2022. July 2022 would be 1 year after my last scan and November 2022 would be 1 year after my 1st zoledronic acid infusion. Whatever I decide, I will DEFINITELY not be going back to the same facility. I know that they recommend using the same machine for all of your DEXA scans, but having to beg for my health data isn't good for my well-being, so I'd rather move on, and before I pick a new facility, I will confirm with the facility what info they will provide to me.

Note, the group that did my DEXA scans also refused to give a printed version my full DEXA reports to me. They claimed that they had sent the full reports to my doctors but they never did. After asking for a copy of all the imaging the facility had done for me, I did get a CD copy, but they told me that I wouldn't be able to read the CD without specific software. When I called a different imaging center to ask questions, they told me that when they give out CD images that they include and executable file so anyone can read the data. My computer is a newer computer and doesn't have a CD drive, so I went to the local library, but their computers don't have CD drives either. To get a copy of my full DEXA report, I had to get a CD drive :-) and I now, 2 years and 7 months after my 1st DEXA scan have access to my original DEXA report. My point, dealing with this facility has been quite the ordeal.

MWZ3 profile image
MWZ3 in reply to FearFracture

Dreadful! But you are trying which is good.

FearFracture profile image
FearFracture in reply to MWZ3

I finally got my ancillary data. On March 18, after trying for close to 2 months, I rec'd the ancillary data for my 2021 DEXA scan and on March 21, I received the ancillary data for my 2019 DEXA scan. When I called the facility for the umpteenth time on March 18, the woman I have been speaking to was her usual curt self. I "threatened" getting the media involved and explained if they didn't know how to access the data they could just call the tech who services the machine. She said she would call me back. About 2 hours later I got call. The woman was now super-friendly, lol, "I think I have what you need" and shortly thereafter I rec'd an email with my 2021 ancillary data. AMEN!

I have plugged in my numbers and according to the BMAD calculator, it looks like I have osteopenia not osteoporosis. My endocrinologist told me that he would NOT prescribe the meds he prescribed for me to someone with osteopenia. I'm mad and happy all at the same time. Not sure what my next step is.

MWZ3 profile image
MWZ3 in reply to FearFracture

Well done!

JGBH profile image
JGBH in reply to Killbill234

Neither have I.

loreal profile image
loreal

Wow that’s very interesting as I never heard of testing arm’s separately. I would like to know my other DEX #s!

MWZ3 profile image
MWZ3 in reply to loreal

New to me too and not much purpose to it.

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