New to osteoporosis and overwhelmed
Hello, I am new to this forum. I was diagnosed with osteoporosis 2 weeks ago. Lumbar spine T-score -2.9; Left Total Hip T-score -3.2; Left Femoral Neck T-score -3.3. I am 58, female, technically met the criteria for menopause just this year (August 2023), 5'6", 125 lbs. I exercise regularly (mostly hiking and walking, some Pilates Reformers, bands, exercises from PT to strengthen my knees and butt), eat healthy (Ca level 9.4, Vit D level 25), get plenty of sun. Mom is 83 and still in osteopenia. She had a compression fracture at 78 when putting a 55 lb suitcase onto a scale. One maternal aunt broke her hip at 60 when she was transferring a pot of stew. She had leukemia and died at 65. Additional risk factors include small (wrist) bones and Asian. All preliminary blood tests to rule out other causes came back neg (TSH, PTH, some autoimmune markers, etc.). When I requested a bone density scan my primary doc at first said I'm not 65 and I'd just reached menopause, but after I shared my family history concerns she approved. So the T-scores really came as a huge shock. Had my first appt with my primary doc last week. After 5 questions, she decided to refer me to an endocrinologist who is also a bone specialist. I will be seeing her in 10 days. I'm trying to educated myself on osteoporosis and there is so much (conflicting) information out there I feel really overwhelmed. I am so glad to have stumbled across this forum and find the discussions very interesting and informational. At this moment, I have hundreds of questions but I would like to start with a few.
1. How common is someone with my profile getting the kind of T-scores I got? My primary doc said "not uncommon". My OB/GYN said "it's pretty rare" based on her patient panel. During the holiday get-togethers I saw many female friends and relatives who are much older +/- have been in menopause much much longer +/- very sedentary and they are not at my level of osteoporosis. What are your observations in your life circles?
2. Is it reasonable to request a repeat of the Dexa Scan before I embark on a life long journey of drug therapy? Anyone with flawed Dexa Scan results?
3. I'm told my T-scores are bad, but I'm having a hard time understanding how bad and what that translates into in real life. The only thing I could find was T-scores less than -2.5 you have osteoporosis. My daughter just got married in July. Does that mean I shouldn't bend over and pick up my future grandkids once they reach 10 lbs? 20lbs? 30lbs? Should I not pick up a 20 lb watermelon from the pit at Costco? Should I switch out all my cast iron pots and pans? I get the sense that I need to be mindful of my activities from now on to prevent fractures but how careful is careful enough? Thank you for any input.
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Was your cancer hormone-negative? @sallyj2
My cancer was estrogen positive it was feeding my cancer. Everyone is different
Hormones are used to treat some. Finding a good doctor is important. Balancing act. Glad science is ever evolving.
My breast cancer was hormone positive and treatment was the reverse of HRT: aromatase inhibitors remove the last estrogen in the body remaining after menopause (aside from fat), which is made in the adrenals.
Hi Sallyj2. Are you using the transdermal patch or are you getting a pharmacy to compound bio-identical hormones for you ? I haven’t started yet as I’m waiting for a CT scan to make sure I’m good to go from a heart perspective, but I opted for the patch as I wasn’t sure how reliable the compounding pharmacies are.
Is it better to use a weight vest for osteopenia or use weight training?
Welcome to the forum, Zinsong. I'm sorry that you are in a situation where you need to be here, as I think we all are! 😮 The most striking information that you provided is your Vitamin D level of 25. I would be concerned if mine were to drop that low again (I was once at 9 - yes, single digits - no wonder I have trouble now). On a recent visit with my integrative medicine practitioner, she was concerned that my D was only in the 40s. She said she wanted to see it in the 60s. She also recommended that I add K2, which Keith McCormick also discusses in his book, Great Bones (an amazing book - I wish I'd read five years ago). If you have access to an Asian food market, you might like to consider adding natto to your diet. It contains a unique type of Vitamin K that is very helpful with bone metabolism. Also consider the types of calcium you take and WHEN. I learned too late that taking my calcium with a delicious breakfast of oatmeal, blueberries, walnuts and flax seeds that was delicious and healthful, but the phytates found in whole grains, nuts and seeds latch onto the calcium and carry it out of the body before it has a chance to get into your bones. I now have a strange breakfast of a cup of kefir, a half of a banana and 1 TBSP of extra-virgin olive oil (cold pressed and unfiltered) along with 600 mg of calcium citrate. It seems that calcium needs fats to get to where we need it. I take a second 400 - 500 mg dose of calcium carbonate later in the day, usually with dinner, but I'm looking into AlgaeCal, which is supposed to be a very good form of calcium. Dr. McCormick suggests taking different types of calcium. Your body can only absorb about 500 - 600 mg at a time, so you need to take a second dose at least four hours after the first one. Also make certain that you are taking magnesium (glycinate is easiest to absorb by my understanding) and zinc, but don't take either of these when you take the calcium - apparently minerals compete with each other. Do be certain to take the other minerals with food, esp. zinc, which will make you nauseous if you take it on an empty stomach. If you're not keen on taking zinc as a pill, then choose to eat plenty of nuts and other foods that contain zinc (oysters, anyone?) Also consider taking a fish oil supplement. My IM practitioner suggested Nordic Naturals to me for that (and the K2 + Vitamin D). The kind I get from them is 'burpless' (my word). In the past, I've had fish oil that revisits me with gnarly fishy flavor. They also filter the fish oil, so it shouldn't contain any mercury (my sister developed a rash on her leg years ago from taking unfiltered fish oil. Her doctor told her she had mercury poisoning!)
When you look at Great Bones, take a look on p. 98 where he discusses the trabecular bone score (TBS). He says "...bone density by itself is not a reliable indicator for fracture risk. A combination of density and quality are what give bone its strength." One of the most important things you can do for your bone quality is to take exceptionally good care of your health, especially your digestive system, and to exercise. Ask your doctor for a referral to a physical therapist who can help you to learn how to do resistance exercises to build strength, and balance exercises to stay upright! You are still very young and, in my opinion, have a very good chance of rebuilding your bones with a diet that intentionally provides your bones what they need to rebuild. If you haven't had a CTX test (C-telopeptide), that one can give you good information on how actively your bones are working on that task (or if they're not).
CAVEAT: I'm not a medical practitioner. If anyone sees anything in this post that seems incorrect or inappropriate advice, I welcome your feedback. My goal is only to help by sharing what I've learned for myself.
Happy New Year everyone! May all of our health head in the right direction in 2024!!! Thank you so much for all the comments and support. I feel very very lucky to have found this forum. My 1st Endo appt is coming up soon. Unfortunately “Great Bones” is not available from Amazon or any library around me. I found it on Dr Keith McCormick’s website and ordered from there. It will take up to 10 business days to arrive. Meanwhile I’m reading his older book “The Total Body Approach to OP”. It’s very informational and complex. I have no clue if my Endo will be willing to order all those tests. I suppose I will find out soon enough.
Dr. McCormick (osteonaturals.com) was mentioned by another forum member. I have also consulted with Dr. McCormick and highly recommend his first book "The Whole Body Approach to Osteoporosis". My baseline T-score for my spine before starting Tymlos a year ago was -5.1. My T-score has improved dramatically, but I'm waiting for Dr. McCormick to assess other tests, to verify. It was almost too good to be true. Will post again once I believe it!
appreciate you sharing but just wanted to respond to a couple of things you mentioned. I think we can sometimes get overly concerned with food combinations, especially when it comes to phytates and oxylates. It is true that they can inhibit the absorption of calcium but they don't eliminate the absorption completely. We have to remember that all foods contain a multitude of nutrients and phytochemicals so our bodies are accustomed to processing and extracting what is needed provided digestion is optimal and that we don't rely exclusively on something like spinach as our high-calcium greens. Best to concentrate on consuming a wide variety of whole, nutritious foods and making sure we get enough calcium and the supportive nutrients throughout the day, supplementing only where we fall short so that the body doesn't continually pull calcium from the bones in an effort to regulate blood levels. We can't absorb more than 500 mg at one time so eating a serving of about 300 mg of calcium 3-4 times a day is optimal. Supplementation has possible negative consequences for the accumulation of arterial plaque so best to get your calcium sources from food wherever possible and supplement judiciously only when necessary. I would suggest that your breakfast that includes a cup of kefir provides you with enough calcium to start your day. By taking 600 mgs of calcium supplementation along with your kefir, you are getting approx 900 mg of calcium at one time which is way too much. Kefir is a great calcium source, particularly since it's fermented and easily digested so no need to supplement on top of that.