I was just diagnosed last Friday with Osteoporosis and it really hit me hard. I eat well, have a healthy body weight, exercise, have a physical therapist, chiropractor, nutritionist and take care of myself. I am active in my life walking and hiking with my big dog, Hudson. I do have other neck and back disc issues that I've dealt with on and off my whole life and Hashimoto's thyroid. Yet nothing scares me as much as this diagnosis.
I am wholistic in my care and I know the Doctors are going to push meds. I think the idea of taking meds that have so many horrible side effects really scares me. I am researching everything else I can do first! Since Friday, I've cried, yelled, researched, felt alone, asked God Why and transitioned through tons of emotions. I don't trust anyone right now. I feel like my body is broken and turning on me.
Has anyone else struggled emotionally with this diagnosis and the best way to treat it? I just turned 60 and have worked the past 40 years to be as healthy as I can. I feel very isolated right now and could use some support.
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PuppyHudson
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Hello, I felt the same way (diagnosed a month ago, I am 61), and after some research on the medicines (Fosamax was recommended) (befor even discussing my diagnosis!), I asked to talk to the doctor. My T-scores are -2.9 spine, -2.2 & -1.7 hip, Vit D level 27 which is low. She put me totally at rest, it's not 'that bad' and it can be reversed with my comittment to eating right and exercise, and she was okay with putting off pres. meds, for now. She was no help with exactly what type of calcium suppliments is best (anything is better than nothing), so I am opting to take the expensive plant based calcium from algae with trace minerals, vit d & k's, magnesium and others. (the heath store said it's pre-digested and absorbs better with the other ingredients). I am exercising and considering a small rebonder/trampoline-with safety bar to add to my various weight bearing exercises as I have metatarsalgia in my feet, and back issues so low inpact is best for me. I committ to do this faithfully for 2 years and hoping my next DEXA scan will show improvement. It's so long to have to wait to see if what your are doing actually works but what choice do you have, you have to fight to keep strong and will only lead to overall better health. My risk fracture from a fall is 10% so that doesn't alarm me too much. Stay positive... you can do things to make it better, reverse, or arrest its progrogression, as it happens to everyone as we age. As you research what to do you will be frustrated as everyone has contradictory opinions of what to do and not do. Balance in life is best, don't overdo or underdo. I miss my coffee, and now can tolerate drinking milk. It's a new chapter in your life with new things to focus on, getting old isn't any fun, but don't worry, you just have a new challenge to deal with. Medicine doesn't have to be the first step, but, if nothing else works, I might be willing to take the meds if that will give me a better quality of life. Good luck with your search to find what is best...for you.
I compare osteoporosis to hypertension. It is a common condition, almost 27% of women over the age of 65 have osteoporosis. If it is not severe and one has never had a fracture it seems reasonable to first treat with lifestyle changes such as dietary changes, weight bearing exercises cutting back on ETOH and smoking cessation if one smokes. Mild hypertension is also treated with lifestyle changes when first diagnosed. If it is not effective or if blood pressure increases, medication is strongly recommended to prevent possible long term issues such as stroke, heart attack, kidney failure and heart failure. If lifestyle changes do not improve bone density or fractures occur, medication is a reasonable next step. Or if bone density scores are very low such as in my case, medication is a reasonable first step in spite of the fact that one has never had a fracture. Untreated osteoporosis can result in fractures, chronic pain and mobility issues. In my case, I have a strong family history and very low bone density scores so lifestyle changes have not enough. I take a parathyroid injection called Tymlos daily for 18 months which will hopeful build new bone. I am so thankful that this medication exists. Stay positive and learn everything you need to know. Just be careful, there are a lot people advocating snake oil out there and making claims that are not backed by research.
I am 78 and was recently diagnosed with high risk osteoporosis. My mother had it too starting in her late 30’s. It was horrible for her. I’ve also been active, never sick and eat well. Im not upset in the least fir som we reason. I’m going straight to the Tymlos starting today. Would you mind sharing with me your experience with Tymlos such as side effects. I have vestibular migraines and Meniere’s and have read that Tymlos can cause dizziness/vertigo. Thank you
I experienced some mild intermittent headaches for the first week I also experienced palpitations that lasted 5-15 minutes after the injection. I never experienced dizziness. I've been taking Tymlos for 6 weeks and am doing well, no side effects at all. I do keep checking my belly for the "puffy belly" that many seem to note but so far so good. Good luck with Tymlos. I am very thankful that my endocrinologist recommended this drug rather than an anti-resorptive medication such as Fosomax.
Thank you for your reply. Appreciate it. I experienced the same side effects as you with my first injection, plus pain on my lower left back that stopped after 15 minutes. I hope this keeps up. I too am grateful for my endo and the guidance and expertise I’ve received. Take care😊
It's a terrible shock when you're first diagnosed, isn't it? You're not alone in having all these desperate feelings, but it does get better with time. The first thing to reassure you is that for the vast majority of us it really is nothing to panic about, although none of us would have believed that initially. I was diagnosed almost 7 years ago, age 58 (so similar to you now) and so far no fractures. Like you I also have neck and disc problems. I'm in the UK and would recommend a Facebook group I belong to, which is very supportive and full of ideas for natural treatment and, though based in the UK, is open to people around the world. It's called Osteoporosis UK - Friendly Support & Natural Options.
Can I ask what led to your diagnosis? Have you fractured or did they give you a DEXA scan for other reasons? What are your t-scores and have you been given a FRAX score for risk of fracture in the next 10 years?
There's a lot to take in on first diagnosis, so I don't want to bombard you with suggestions, but as a starting point, make sure your blood D level is at least 30ng/ml (75nmol/litre), preferably 40ng/ml (100nmol/litre), and take Vitamin K2, which helps send calcium to the bones. I also hope your doctor has run tests for any possible causes, in particular any absorption issues (such as coeliac disease) and Vit D, calcium, parathyroid and thyroid blood levels.
I got my first bone density in 2017, then 2019 and now. I wanted them done to be proactive because I have had neck and back issues throughout my life. I was in a car accident at 21 which started all my structural issues. My spine T value is -2.4. My Femoral Bone is -2.7. My Femoral Neck is -2.5. Everything got lower by 1% in 2 years. I looked at the FRAX score and it says 18% overall, 4%hip which sounds really bad. I am taking high levels of Vit-D (5000iu) which doesn't seem to be working. My level is still only 30 on my blood work. I have a nutrition background and know quite a lot about supplements, testing, alternative testing etc. It's just a lot to navigate through. I have my first appt with my Endocrinologist tomorrow.
Unless you've had a fracture, those t-scores don't look bad to me, and a 1% change in 2 years is a below average rate of loss (average is about 1% per year, more than that for about 5 years around the menopause). I'm guessing you're on thyroid medication, which can raise your risk of fracture, although at the moment it looks like it isn't having a big impact on bone loss. I don't think a 4% hip fracture risk is bad, as that's 96% risk you won't fracture! I'm wondering how they reached the 18% fracture risk for any kind of osteoporotic fracture, as your spine t-score is similar to your total hip (femur) and neck of femur. I assume there are other factors that predispose you to higher fracture risk, as my risk is lower, despite having similar t-scores to you.
What other supplements do you take, apart from Vitamin D? Do you take D3 (I know in the US it's also possible to get D2, but D3 is the recommended form) and is it in tablet, drops, capsule, or spray form? I've read that the spray form is best absorbed, the tablet least well. As a nutritionist, I'm sure you already know this. Do you take boron? I've been told that helps your body to absorb Vitamin D. Your blood level isn't bad though, at least it's at the recommended level, though I can understand you wanting it to be a little higher.
My endocrinologist said not to take more than 4,000 iu of Vitamin D daily as this associated with stone formation in the urinary system because it raises calcium levels too high. A blood level of Vitamin D between 30 and 40 is good.
What measurement do you use? I have a feeling it is different in the US from the UK and Canada. In Canada it's nmol/L and a level of 30 or 40 would be much too low. It's considered between 100-150 is healthy. Possibly it is equivalent to the US measurement?
Vitamin K2 is also very important and helps with some of side effects of too much calcium as it directs the calcium into the bones - Vitamin D cannot do this.
Thanks everyone for taking the time to respond. It means a lot to me. I got my first bone density in 2017, then 2019 and now. I wanted them done to be proactive because I have had neck and back issues throughout my life. I was in a car accident at 21 which started all my structural issues. My spine T value is -2.4. My Femoral Bone is -2.7. My Femoral Neck is -2.5. Everything got lower by 1% in 2 years. I looked at the FRAX score and it says 18% overall, 4%hip which sounds really bad. I am taking high levels of Vit-D (5000iu) which doesn't seem to be working. My level is still only 30 on my blood work. I have a nutrition background and know quite a lot about supplements, testing, alternative testing etc. It's just a lot to navigate through. I have my first appt with my Endocrinologist tomorrow. I appreciate everyone's suggestions and feedback.
Hi PuppyHudson, thank you for sharing your experience. We wish you the best as you work with your health care providers to create a bone health plan. I would be interested to hear what your endo says -- 30 is considered "sufficient" vitamin D, so they might suggest your taper off the 5000 iu (I take 2000/daily, and that helped a lot). Please be sure to mention your Hashimoto's history; thyroid medicine can increase bone resorption and increase fracture risk (I suspect it might account for some of that 18% on the FRAX). Here is more info about thyroid medicine and its effects on bone ...
Patients who take medicine to treat an underactive thyroid need to be cautious that they don’t take too much. Most patients on thyroid medicine have Hashimoto’s thyroiditis and a smaller number take thyroid medicine because of thyroid cancer or Graves disease. Too much thyroid medicine increases the activity of the osteoclasts (the bone cells that break down bone) and put you at an increased risk for fracture. To find the correct dose, your health care provider will get a thyroid-stimulating hormone (TSH) blood test and once you are on the correct dose, monitor your levels at least once a year.
Thyroid hormone requirements decline with age, so a dose that was good for a patient at age 20 or 30, may be too high when they are in their 60s, 70s, 80s or 90s. Younger patients should target a level of TSH in the lower half of the normal range (especially those diagnosed because of weight gain), while patients in their mid-50s should target a TSH level in the upper half of the normal range. For older patients, studies have shown that a lower TSH level was associated with an increased risk of heart disease.
If you are taking a thyroid medicine, it is important to take thyroid medicine at the same time every day to avoid fluctuations in TSH, and some studies suggest taking it at bedtime works best. Finally, do not take your thyroid medicine with iron or calcium supplements or food because it can affect the absorption of the medicine.
Don't panic! Remember that while the diagnosis is worrisome, your focus should be less on improving bone density and more on preventing fractures. You are doing the right thing by seeing an endocrinologist, as they are best equipped to see the big picture of your bone metabolism. Good luck!
I was diagnosed at age 58 and was really upset also. I am now 73, have never had a broken bone ( I say that gingerly!) am very active. I have been treated with Fosomax, Reclast, and Prolia for the past 8 years. I no longer show Osteoporosis on my dexa scan. I do worry about being on Prolia for so long. I would avoid that. As you have just been diagnosed I would recommend ( I am not a doctor or expert - this is all from my experience and what I have read.) starting with calcium, Vitamin D, and lots of food that contains calcium as well as weight bearing exercise. Also I am thin, short, and small boned. I have read that Dexa scans tend to over diagnose short thin small boned women and under diagnose tall thin women. Not sure of your body type - but make sure that you actually have Osteoporosis. I question my initial diagnosis which was based solely on a dexa scan. Anyways since I have been diagnosed it has not stopped me from doing any activity from skiing to biking, hiking, dancing - basically whatever I wanted to do. It is not a death sentence and there are lots of treatment options as well as life style activities that can prevent further progression. Enjoy your life and don't worry about this!Copper23
Hi Copper 23. You stated you have been treated with medications only for the past 8 years. The years before treatment, was there an intention NOT to be treated with medicine? If so, what alternatives did you take and what happened that meds are now needed?
I am still on the prolia. I have been taking it for over 9 years and have had no side effects thus far. My docs recommend continuing it. However, I need to have a tooth extraction and dentists are reluctant to do it because of the Prolia. I am between a rock and hard place so to speak - as I am at risk for necrosis of the jaw from the extraction. I would like to go off the Prolia but there doesn't seem to be any other viable options. I was looking at Forteo but it is expensive even with medicare coverage and is also temporary. It is a difficult disease to deal with. Carol
Thank you for sharing! And I have gone through all of what you have as well. This diagnosis is unsettling to say the least. Since you have already gotten many great responses and sound advice, I'll try to be brief and tell you things I know now that I wish I knew 3 years ago.
I was diagnosed 3 years ago at age 56. I have no underlying conditions except menopause. I was devastated and refused the recommended Fosamax. I tried to manage through various diets and supplements and saw a Naturapathic Doctor for a while. Bottom line is, my osteoporosis is now worse and I have chosen to take the anabolic, Tymlos (out of fear!) I have been on it for about a month, and still get a little nauseous feeling in the morning about 1-2 hours after I take it. But otherwise I feel fine.
Some things I wished I knew early on:
1. Walking/hiking/running are not enough. You need to do weight bearing and resistance training and change it up as much as possible. Walking/hiking/running are great for cardiovascular health but may not help with bone building.
2. Try seeing an endocrinologist. They are very concerned with thyroid, adrenal function, as well as bones and how they are all interconnected.
3. Get a trabecular bone score (TBS) as part of your DEXA scan. Many places can do this, it is just a computer analysis of the DEXA result. It tells you more about your bone strength, not just the density.
4. There are several blood tests including CTx (C Telopeptide, serum) and P1NP (propeptide 1 collagen) that are markers for bone remodelling. Request that these tests are run to see if you are actively losing bone.
5. Get a 24-hour urine Calcium test and a thyroid and parathyroid workup. These can all be contributors to low bone density.
I'm not an expert, these are just things that I have learned through this forum, my new endocrinologist, and listening to podcasts. (I recommend listening to The Bone Coach, his story is very different, but he has a lot of detailed information regarding bone loss and recommended exercise.
First of all, I just want to say how grateful I am to have found this group. I appreciate everyone who has taken the time to respond with support and really good suggestions.
I went to my Endo on Friday and he is going to support me in trying to address this naturally. He said he totally understands my hesitancy to take the medication because of the side effects. He also said that my condition was not critical and we could re-evaluate in 2 years. We have a plan. I'm doing some traditional medical testing of my thyroid numbers, getting a Rheumatoid Arthritis evaluation etc to make sure there is nothing underlying on that end.
I'm also working with a Functional Medicine Nutritionist and Doctor to look at underlying causes like Leaky Gut and Micronutrient malabsorption. She'll evaluate my food, nutrients and supplements. My Physical Therapist is going to create a resistance and strength training program for me.
I feel hopeful and my fear level has gone down from 15+ to around 5! thanks again
I think most people have had that emotional response. I felt like that 3 years ago when I was first diagnosed at age 55. When I left the doctor's office I did not even want to move, thinking that any movement would cause my body to break in pieces! I cried all the way home and for days after that.... I blamed my Endocrinologist, (who was treating me for Hashimoto's) because I had asked him many times to do a Dexa scan because I had lower back pain, but he kept on saying "No, you're too young"... . I was started on Fosamax, which I could not tolerate because of reflux, then I tried Evista, which did not work either. My new endocrinologist is now doing lab tests before he puts me on Prolia. I have been refusing to go on this medication for so long, but now, like Oscarbuddy, out of fear, I am going to have to get the shot every six months. I only have Osteoporosis on my lumbar spine (-3.5), the hip scores are normal. I don't have any other risk factors and I didn't want to go on Prolia only for the spine, but I guess I have to, or it'll get worse according to the doc. Bottom line, it's okay to get emotional in the beginning, but then, you have to be proactive and do everything you can to stay healthy, like exercise, eat healthy, supplement, etc. Thank God, I'm able to do my normal activities and run, dance, etc. We're all in this together and at least we can support each other wit our messages and hope and prayers... Best wishes!!
Thank you for sharing your story. I am not an expert, but make sure that Prolia is the right choice. Maybe ask how long you need to be on it and if there will be a possibility that you can take a "drug holiday" in the future if your bone density improves. Best wishes to you!
Hi there; i was recently diagnosed w osteoporosis and have compact fracture L1. Yes it is really upsetting; i am 48 and healthy too. I need to figure out what med to take; the doctors are unhelpful; i am sorry you are finding the diagnosis upsetting
Yes!!! I was just given the same news 2weeks ago. I had a non-displaced fracture if my tibia. And my scan at 60, was not high alert. Now I am 62, and like you, very fit, my diet and blood tests are all good for not being as advanced as they tell me. Primarily my spine is -3. I am very afraid, losing sleep, wondering what 10 yrs from now will look like. Because I am also in a cast and have to heal, I’ve lost the ability to feel in control. I cannot physically do the things to help me calm down. I understand how you feel, and I am grateful to have found this site. I’m hoping I can help set me at ease, knowing I am not alone.
Hello, I am feeling the same way. I am 49 years old and was diagnosed on Thursday with Osteoporosis. I don't understand how this happened, I am a health freak, exercise regularly, don't drink or smoke. This is making me very depressed, anxious and unable to sleep. I don't know what to do?
Keep reading, asking questions. It sounds as though you need help relaxing in order to calm down and get the sleep you need. Please consider a calming activity like acupuncture, massage, or a meditation class. An other health practitioner would provide you w/ a sounding board, which is so important. Best wishes!
I felt knocked off kilter when I was diagnosed w/ mild osteoporosis. I had to ask the MD about the scores. She said it was not severe, but still suggested Rx. I then mentioned wanting to continue w/ the heathy lifestyle I lead, and increase my calcium. She agree w/ that, and I wondered why she hadn't mentioned that first. You may want to check out the book "Rebuild Your Bones" by Mira Calton, C.N. and Jayson Calton, P. HD. It goes into much detail about factors that influence bone strength and density, and that a DEXA scan score is not the only info to consider. Keep digging for info that can help. It seems like we are left on our own to find the best answers.
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