It is a terrible shock when we're first diagnosed, isn't it? I was the same age as you when I was diagnosed; 9 years later I haven't (yet) had any fractures. I don't take the meds. Like you I get a lot of back pain, but it's nothing to do with the osteoporosis, as that's only painful if you fracture. Mine is due to muscular pain and disc problems. One or two of the causes of osteoporosis can cause pain though, in particular Vitamin D deficiency and hyperparathyroidism, so I hope you're going to be tested for both. The parathyroid glands aren't the same as the thyroid. They regulate calcium levels in the blood, and if your level is raised it will result in not enough calcium reaching the bones.
You also need to know your fracture risk. One way of measuring this is using the FRAX calculator, something that's usually done automatically with a DEXA scan here in the UK, but I'm not sure if that's the case in the US. There's a link to it here, if you want to work it out for yourself: frax.shef.ac.uk/frax/. Click on Calculation Tool at the top, select your country and then complete the form. In the UK, medication is only supposed to be recommended if fracture risk is high, which means, with your scores, you would have to have other risk factors for that to be the case. If you work out your FRAX score, it's helpful to turn it round to put it in context - for example, if your fracture risk is 10%, that's a 90% chance you won't fracture!
Thanks for the link. I have a dexa score of 3.0. and report said that my fracture risk is high and treatment should be started. I just calculated my FRAX score and was so glad to see that my risk of fracture showed 5.5% and 1.8% for the hip respectively. I am wondering why my dexa report showed that I am at high risk. I did not have any fractures of spine or hip so far. Any input? I have no plans of taking (at least now) any meds even though my Endocronologist was keen on me taking Recast. I did not have any back pain or any kind of pain until I was diagnose but now do have lower back pain quite a bit. May be mental I guess as I was in total shock when I was diagnosed in April of this year. I will do my best to improve my diet, supplements, exercise etc. Lets see. Thanks again.😀
That doesn't sound like a high fracture risk! The dexa score you mention is a t-score for either your spine, total hip or neck of femur, but you need your t-scores for the remaining sites too. I would ask them to let you have the fracture risk they've calculated and see if it's the same as the FRAX score. If theirs is much higher, then I would ask them to do FRAX with you and double-check.
I had missed the machine to choose, which I did and filled all the other information it asked for and now I think the corrected one, major osteoporotic is 9.3% and hip fracture is 4.3%. 3.0 was the highest for left femur neck. The reamaing sites are between 2.1 to 2.8. Thanks again.
Hello! I was diagnosed earlier this year at 54. Similar scores to yours. It's always been in my mind that I might get osteo (due to family history), but I thought it would be at least 10 years out from now.
I am otherwise fairly healthy and always thought I'd be active in my older years. The diagnosis has definitely made me quite sad. I've seen how the disease affected my mom, grandmother and great aunt. My mom is 78 did fossamax, boniva, forteo, and prolia (I think there may have been another) and is still stooped, in chronic pain, has had kyphoplasty, and broke her shoulder last year due to a fall. She is anti-meds for me due to the side-affects and because she feels it didn't help her. I am not sure if the meds work for my family genetics.
I did not do hormone replacement therapy because my mom had breast cancer. My cousin did hrt and didn't get osteo until her 80's. So my cousin did hrt, held off the osteo for longer and did not have breast cancer. My mom did not do hrt, had osteo starting in her late 40's and did get breast cancer. It can all be so confusing.
A friends' mom strictly did fossamax on and off through the years and never fractured or stooped. None of the bad side affects.
I can definitely get the "blues" thinking about all that I cannot (or should not) do now. I do a lot of physical things at work. I garden and am used to hauling bags of dirt and mulch. My husband and I do our own painting and home projects. I like to ride roller coasters, bike and horseback ride with my kids.
I had my last child at 38. So I've been having lots of unhelpful regret surrounding that - wishing I would have had my kids younger. I always thought I would try to stay as healthy as possible so I could be active and do fun things with my kids and hypothetical grandkids. So there is a definite level of sadness there.
I keep trying to turn my attitude around, because although I have tailbone, back and hip pain, I feel otherwise fairly young and "normal." I am trying to not be so worried about the future that I don't enjoy the health I have now. My mom rolls her eyes at me and says "it's not a death sentence." And she keeps telling me our family has great genes. I need a dose of her optimism gene! : )
The good news is, we know early and can do whatever is in our control to not make matters worse. My GP told me to start meds asap, but I haven't. I'd prefer to be under the care of a specialist for this condition. I've found a few doctors that say they specialize in women's health/osteoporosis, but they are about an hour away. I might start there and then find someone a little closer to home.
I also have faith in our young scientists. So many young women are going into healthcare and science and I am sure they will have an active interest in solving this problem - as it largely affects women.
I was also slightly shocked when I got my diagnosis although thinking back, I guess I should not have been shocked. My primary care physician agreed to order my first DEXA scan when I turned 50 because in my late 20s I was on Depo Lupron for 6 months due to having endometriosis so I was at risk for developing osteoporosis. I did not want to go on Depo Lupron but after 2 surgeries and debilitating pain every month for almost 2 years that sent me to the hospital on multiple occasions, I felt it was my only option to try to get back to a normal life. It worked and I was pain free. The doctor did advise me that I might suffer some bone mineral density loss but he told me that he did not think it would be severe since I was only on the drug for 6 months and I was young. He advised me to start taking calcium supplements just in case which I started doing immediately. Well, fast forward to 50, and my DEXA scan showed osteopenia. I did not have my next DEXA scan until I was 54 and the results shows Osteoporosis. My scores are very close to yours. My next DEXA Scan when I was 55 actually showed a small improvement but after getting more information on the accuracy of DEXA scans, I realize that improvement may have been an error. I get my next DEXA scan next week (I am 56 now). I am just hoping that it does not show it has gotten any worse. My primary care physician has been pushing me for the last 6 years to start an osteoporosis medication, even when my DEXA scan only showed I had Osteopenia. I did not want to go on a medication then and still don’t want too after reading about all the possible side effects of the drugs. I decided to see a Rhuematologist a a month ago to discuss my condition with a doctor who specializes in osteoporosis. He was the first doctor to run a massive amount of bloodwork to rule out any secondary causes for my osteoporosis. All the tests came back normal. I’m sure being on Depo Lupron was definitely a contributing factor for me developing osteoporosis at such a “young” age. I also found out a few years ago that long term use of Prilosec can cause loss of bone mineral density. I took Prilosec for about 6 years continuously to treat interstitial cystitis which is a bladder condition where your bladder has sores in the inner lining and anything acidic that gets into your bladder causes extreme pain and flareups that can last weeks to months. My urologist assured me every year at my checkups that taking Prilosec long term was perfectly safe and would not cause me any later medical issues. He was wrong and this is why I don’t trust doctors much anymore and do my own research. I’ve stopped taking Prilosec several years ago but the damage was already done by then. My Rhuematologis pushed really hard to get me to agree to go on osteoporosis medication with statements like “you could snap a bone at any moment” and “if you fracture a bone, I won’t be able to help you anymore”. I still feel that the medication side effects are not worth the risk of fracturing a bone. My FRAX score does not put me at HIGH risk because other than being petite and having bad T-Scores I have no other risk factors. I have just started doing weight-bearing exercises and taking Vitamin K2 (MK-7) to hopefully help my condition not get any worse, and possibly improve a little. I am getting ready to retire in February and my husband and I are moving to Florida. I also worry about being a burden on my husband if I fracture my hip and end up in a wheelchair at some point. I’m trying not to worry too much but it is hard to keep from thinking about it. I have found this support group to be very helpful with information sharing and suggestions. I wish you the best in your decision on how to treat your osteoporosis.
I completely understand how you feel about the diagnosis . I wish it was standard practice for doctors to analyze the same studies we find that show promise with certain exercise or supplements instead of immediately deferring to medicine. At least your doctor did lots of blood work so you know there are no underlying reasons. You will have vitamin d covered with your move to sunny florida!
i am reading everyone’s replies but still feeling overwhelmed by osteoporosis diagnosis at age 57 even after thinking of myself as healthy and really active.‘ it seems general doctors don’t seem to know much beyond the basics and I’m afraid endocrinologists will only push medicine. So I’ve been researching and trying to determine the credible studies. So far I use d3 1000 iu and k2 m7 and try to eat healthy and use weights and run. Collagen seems promising but I’m worried about issues with breast cancer in dense breasts. I feel like I am a mess.
Hi Sch, Thank you for letting me know about the collagen. I have dense breasts too and was dx with stage 0 breast cancer (DCIS) in 2021. had lumpectomy and radiation. all is good afterwards... I have to get MRI/mammogram every six months.
Too many health problems.
Like you, I feel overwhelmed by this dx and don't trust the doctors and their knowledge about the meds!
That's great you are running and lifting weights.
I feel overwhelmed too.
I thought I was a healthy eater and very active as well.
But am petite... 5'4" 110.
Ate mostly vegan which is good for breast cancer prevention but not good for bones I find out now!
At the end of the article it discusses the unknown relationship between collagen and dense breasts- it’s the unknown that is scary.
My gynecology only suggested screening due to my mom having had osteoporosis and my frame is small 5’4 and 117 pounds
I’m so glad your lumpectomy is behind you and the mammograms and mri screenings must give you peace of mind .
I feel like all my healthy habits did not prevent osteoporosis so even though I’m still running etc it obviously isn’t enough to stop further damage. Do you feel like that? Maybe upping your protein is key. Have you considered K2 vitamin?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Medication
Newly diagnosed - mortality rate questions
P
New DEXA scores
Worried and confused
