dcdream9 months ago

Like you, I have refused to take the meds and have had osteoporosis for 10 years. I know there are women who take the meds and consider it successful. I also know women who refuse or took the meds and didn't like the side effects. This is a long journey you'll be on and I find research can be difficult to find that answers many of the questions I have regarding the drugs, long term effects of being on meds for bone remodeling as one ages, etc. Like many who refuse meds, I eat a balanced diet incorporating calcium through foods, do weight bearing strength training, walk and hike daily, etc. as one ages, the density continues to decline regardlessly. However, its always good to work out and keep oneself fit with this chronic disease and worthwhile to keep up with bone healthy lifestyle changes. Good luck with this. There are really no easy answers to your question.

Osteoequestrian9 months ago

Our stories are very similar. I’ll turn 63 the end of this month and my recent BMD scan showed osteoporosis in my arm and osteopenia in my hip and spine. My PCP visit to discuss options this week was focused on only one “option”…Fosamax…and nothing else. I’ve been doing plenty of reading, and graciously turned down his offer. I’m seeing so much information on adding vitamin K2 to the D and calcium regimen for it to truly be beneficial. There is also new research on the place that a healthy gut biome (essential probiotics) has in supporting bone health. Another great dietary support is using a quality bone broth to increase vital collagen into your system. Finally, look into the impact of other meds you may be taking on your bone health. For example, my doctor and I agreed to reduce my Crestor from 20mg to 10mg daily, which is a less impactful dose on bone health. I’m dedicating time to doing the research and staying as drug-free as possible by approaching this in a more natural way…sunshine, increasing weight bearing exercise, and making the best nutritional and dietary supplement choices possible that are supported by peer-reviewed medical research. Wishing you all the best as you determine the best path for your personal needs. 💕

IndyOkie in reply to Osteoequestrian9 months ago

Thank you for the response, I appreciate it. I guess I mainly wonder how much is enough exercise, walking, strength training….I still work full time

I’ve mainly been walking on my treadmill for about 30 minutes a day with some incline and 1-2 lb hand weights and doing some decompression stuff (I saw Sara Meeks on the internet and was impressed with that) some 5 lb hand weights, biceps, triceps, shoulder Stuff. Some therabands exercises, bridges, squats….I kinda to it here and there as I have time, not all at once.

I try to eat healthy, have added more protein and calcium.

Hope it’s enough or I can find more answers

I can get pretty discouraged.

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Osteoequestrian in reply to IndyOkie9 months ago

Exercise is only one component to building back your bones. It sounds like you are doing plenty of that. Are you getting outside in the sunlight for 15-30 minutes per day with bare skin and no sunblock? That’s essential for the best vitamin D intake. If you are interested, I can also share some of the research I found on probiotics and supplements that are good for bone health. I’ve also seen other websites that suggest too much protein and/or calcium is not good.

While you are walking on your treadmill, keep investigating all the research that is out there. Here’s one eye-opener that was reported by NPR…

npr.org/2009/12/21/12160981...

it definitely gave me a whole new perspective on Big Pharma’s influence on the whole “crisis” of osteopenia and osteoporosis. Whatever you do, please don’t live in fear of a fracture, as stress isn’t good for bone health either. 💕

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IndyOkie in reply to Osteoequestrian9 months ago

Sure I’d like to see that research.

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Osteoequestrian in reply to IndyOkie9 months ago

I’m in transit to my brother’s wedding, but I’ll share just as soon as I can!

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Lynnel17 in reply to Osteoequestrian9 months ago

osteoequestrian: My DXA technician said the doctors at her practice would think twice about recommending meds to someone who only had low bmd in her wrists. Thought you might be interested in knowing this. Take care.

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Osteoequestrian in reply to Lynnel179 months ago

Very interesting! Thanks for the insights!

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Lynnel17 in reply to Osteoequestrian9 months ago

I'm surprised Prolia's being recommend to you when you mostly have osteopenia. Not easy to go off Prolia; whereas, with bisphosphonates, you'd eventually get a drug holiday. Also, at any point, if you decide you want to, you can go off of bisphosphonates, so you have that sort of control. Not so with Prolia. I think the drug manufactures are pushing Prolix because it's lucrative. I suppose there are some special cases where it's a useful drug, but I'm shocked by how many people say they are being recommended this drug! And often people on the younger side, like yourself. Margret Martin, a physical therapist in Canada, has some good YouTube videos about the bone drugs. She interviews Janet Rubin, an endocrinologist. I believe you'll find a thoughtful discussion of when Prolia should be considered (a young person with the need to build up vey low density fast, or a very elderly person) in this episode: youtu.be/lfzc1ElHkKg(Not working as expected?). There is an earlier episode in which they discuss this, too.

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FearFracture9 months ago

I was diagnosed at age 50. 2019 DEXA lumbar t-score was -3.9 and my hips were both approximately-3.1. I too am a small person, 4’11” haven’t lost any height and although I way approximately 107lbs for most of my adult life my weight range from 92 to 100, so when I would have been building bones I was a bit lighter which does effect BMD.

I have no fragility fractures.

My endocrinologist scared me into taking meds simply based on my t-scores. If you are fracturing right now take a deep breath and give yourself time to do your own research so you can make an informed decision.

If you go to my bio there are 2 links you can cut and paste into your web browser. One is to a list of tests you should review with your doctor and possibly have done to rule out specific causes for your bone loss. The other link a pdf about bone turnover markers. You need to have your bone turnover markers tested to establish a baseline before you take any osteo-meds. You’ll notice that the list of tests specifically mentions bone marker turnover tests. If/when you have these tests done make sure you ask how exactly the tests should be done, meaning what you need to do to prepare (fasting, what supplements to avoid and for how long, etc). Note, I’m now a believer that unless a test specifically says DO NOT FAST, that one should have all blood work done while fasting (no food or beverages other than water 12 hours prior to blood work).

Also here are a couple of non-drug potential ways to improve bone density:

Osteostrong (I would join this program if there were an Osteostrong w/i 2 hours of my home. Unfortunately, the closet location is a 4.5 hour drive).

Marodyne LiV—It’s kind of pricey so I didn’t run out and buy it but I haven’t completely ruled it out.

Go to betterbones.com and on that website search for Cindi’s story. She was in her early 60s and was able to reverse her osteoporosis via weightlifting.

You might also consider searching for prunes and osteoporosis (As of mid-December 2021, I now eat 6 prunes daily).

IndyOkie in reply to FearFracture9 months ago

Thanks for responding. I have only had. Umbers for my hips, spine.

I did just buy some K2 to add to my supplements and gave taking collagen for a couple months. I notice my nails are better🤷‍♀️ Not sure about anything else. It is so hard to know which supplements are best and good and also affordable. I took a thyroid med for over 30 years, my PCP took me off about 3/4 years ago. I don’t take any prescriptions at this time. She suspects that contributed to bone loss and I stopped my monthly cycle 4 years ago. I also had problems conceiving and with period for years and took progesterone quite a bit.

I hope you continue in health and can see improvements.

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FearFracture in reply to IndyOkie9 months ago

Yes, too high of a dose of certain thyroid medications can cause low bone density and hyperthyroidism (over-active thyroid) can also cause bone loss.

We’re you taking levothyroxine for your thyroid and why did PCP take you off your thyroid meds?

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IndyOkie in reply to FearFracture9 months ago

Yes I was. She thought I didn’t need it by looking at bloodwork and slowly took me off. My thyroid numbers have stayed in range.

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FearFracture in reply to IndyOkie9 months ago

When you stopped taking it did you gain weight?

Weight gain was what made me get my thyroid checked. My mother and all of my siblings all have Hashimoto’s thyroiditis and I was the last to have it get triggered. When I 1st started putting on weight before being diagnosed, I joined a gym but my weight wouldn’t budge. Once I started taking levothyroxine my weight came down and I lost the puffy weight around my face that hypothyroidism causes.

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IndyOkie in reply to FearFracture9 months ago

No I did not gain any weight.

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violetangel1111 in reply to FearFracture9 months ago

I have been on thyroid meds for hashimoto's for 50 years (i am 70 now). My TSH is 1.3, but because i have osteoporosis my endo wants me to decrease meds to get TSH of 4. Just wondering if anyone else with hashimoto's has had this recommendation from a doctor.

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FearFracture in reply to violetangel11119 months ago

Also have Hashimoto’s. My August 2022 fasting blood work results are

- Free T4, 1.43

- TSH, 1.13

- T3, 88

- Free T3, 2.5

I’ve been taking 75mcg of levothyroxine daily since 2017. I was diagnosed w/ osteoporosis in July of 2019, lumbar T-score was -3.9 and in January 2020, my endocrinologist put me on osteo-meds.

After I started doing my own research on osteoporosis, I went back to my endocrinologist to see if it would be possible to reduce my dose of levothyroxine. He said absolutely not.

I would love to know if you get any other replies. I don’t really understand thyroid numbers. I was told that the acceptable range at least the higher end is actually “too high” meaning that ppl who hover at the higher end often need thyroid meds. The person who told me this is my endocrinologist and frankly I so unhappy with how he has “treated” my osteoporosis that I have started questioning if he really is “treating” my hypothyroidism correctly.

When I was diagnosed w/ osteoporosis as I was leaving his office back on January 2020, his nurse said to me, “I’m sorry he gave you this.” I’m not sure if she misspoke or what but I’ve never been able to get that comment out of my head.

I look forward to seeing the replies to your question to see if I can’t find answers also. The one thing I would say is maybe you can reduce your meds but definitely do it gradually. Thyroid/thyroid meds regulate things like weight and mood.

Often as ppl age they are able to lower the dose of levothyroxine that they take, but I have an older friend, whose endocrinologist reduced her levothyroxine from 125mcg to 75mcg and she became a little “depressed” and so her GP prescribed Paxil, which is very difficult to get off of.

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violetangel1111 in reply to FearFracture9 months ago

From my own experience on thyroid meds, I think that reducing levothyroxine from 125 mcg to 75 mcg is too extreme and results in side effects. I am reducing my meds very, very slowly so as not to experience side effects. I hope we hear from some knowledgeable members on this topic.

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Capan24 in reply to FearFracture9 months ago

I also have Hashimoto's. I know this is a big factor in my osteoporosis. I always thougt my bones would not get bad until I was much older. I feel best when my TSH is under 1.0. Whenever its higher, I start having symptoms. So I opted to try taking Fosamax because a lower dose of my Synthroid makes me feel horrible. I know so many here are against taking meds.

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violetangel1111 in reply to Capan248 months ago

Capan24, how are you doing on Fosamax? Did your doctor give you a choice, either decrease your Synthroid or take Fosamax? I have Hashimoto's and osteoporosis also.

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Capan24 in reply to violetangel11118 months ago

I was hesitant to take the Fosamax. I stopped taking it after 4 doses (1 month). The pill kept getting stuck in my throat. I felt nausea and was having more reflux. My doctor wanted me to try Prolia, but I declined. Once you start taking osteoporosis meds, you are on them for life. I stared taking Vitamin K2 100 mcg daily. I am having a thyroid med check in 2 weeks. My doctor didn't say anything about decreasing my med dose when I took the Fosamax. Lately I am having a tough time regulating my Synthroid dose. I don't know if I am having a Hashimotto flare up. I asked my doctor my to check my TPO antibodies with my thyroid med check.

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violetangel1111 in reply to Capan248 months ago

Capan24, my TSH is at a 1.95 (I feel fine now and I am afraid to mess that up) and doc wants me to decrease Synthroid to get TSH between a 4 and 6 due to osteoporosis. I have decided not to take Fosamax at this time even though it is recommended. I have endo appointment next week to get more info. What is your TSH? I truly hope you get your Synthroid dose regulated.

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Capan24 in reply to violetangel11118 months ago

That is way too high for TSH, 4 to 6. My last TSH was 3.16, which is too high for me. I felt more fatigued. When I was first diagnosed with Hashimoto's in 2006, my TSH was closer to 4.0, but TPO antibodies were very high, 850. I feel best when it under 2.0. I know you don't want it too low though. Good luck to you.

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wellness1 in reply to violetangel11119 months ago

Violetangel1111, I would personally be very sceptical of determining thyroid hormone replacement by targeting a TSH of 4. Is this independent of the thyroid hormone levels themselves, both FT4 and, especially, FT3, the active hormone? This will give you an idea of TSH levels in a healthy population.

web.archive.org/web/2004060...

Do you know your FT4 and FT3 levels with reference ranges? I would hope your endo wouldn't let them get so low that you become symptomatic in pursuit of an arbitrary TSH level. It's my understanding that any dose reductions should take place gradually, no more than 25 mcg at a time. After waiting a couple of months you can test and see how you feel and where levels are. Do you feel well now? It can be difficult to establish a dose at which you feel well and I, for one, would be reluctant to become symptomatic in order to establish a relatively high TSH. A rheumatologist once said to me, "If there is a role for TSH in bone metabolism, it is a small one. It is much more important to have adequate levels of the thyroid hormones, for quality of life and to give you the energy you need for the activity that we know will help bone density."

Very often the concern is with below-range TSH, although even that can be overstated. There was a large, long term study of patients on Levothyroxine, showing that risks for low TSH (0.04 - 0.4) were actually no greater than the risks for TSH withinin the reference interval (0.4 -4). Risks increase for TSH below 0.04, but most of them were still less than risks for TSH over 4. Patients with a low, but not suppressed TSH, had no greater risk of fracture.

academic.oup.com/jcem/artic...

Since this study shows increased risk with a TSH above 4, your endo targeting a TSH of 4 may flirt with that increased risk. You may wish to ask your endo how he or she arrived at that number and whether he or she is willing to test *both FT4 and FT3* to gain a more complete picture of your thyroid status.

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violetangel1111 in reply to wellness19 months ago

Wellness1, those articles were incredibly informative and thought provoking, especially the study showing an increased risk of fractures with a TSH over 4. Yes, I have had frequent FT4 and FT3 tests over the years, always in normal range. I feel well now, probably because i am decreasing meds extremely slowly, only 12 mcgs per week (not per day) every 6 weeks, so as to avoid/monitor any symptoms. Once I experience symptoms, i can then stop decreasing and increase by the 12 mcgs (if the endo doesn't agree i will find a new doc). i had a bad experience years ago decreasing meds too fast. I am very sensitive to thyroid meds and all meds and chemicals. The rheumatologist you quote is what I am trying to achieve, which is why i am questioning having a TSH at a 4. You are right, it is also flirting with being too high.

I love your idea of asking my endo how she arrived at that number!! That is a key question which I never thought to ask, but plan to ask at my next appointment. Your advice and insight was invaluable. Thank you so much!

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wellness1 in reply to violetangel11119 months ago

violetangel1111, you're very welcome. There's another forum on HealthUnlocked, Thyroid UK (TUK) and it's a terrific resource. There are some very knowledgable members there and the connection between thyroid and bones has come up many times.

For anyone interested in this topic, Tania Smith of Thyroid Patients Canada has written a lot about the relationship between TSH, thyroid hormone levels, and osteoporosis. Her blog posts can be quite dense and technical, with good citations to research. That can be helpful in conversations with endos. I'll put a couple of links here, in case anyone wants more information.

thyroidpatients.ca/2018/07/...

thyroidpatients.ca/2019/07/...

It sounds like you have a lot of experience with dosing and know how your body reacts. That's so important. Good luck discussing this with your endo.

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Osteoequestrian in reply to FearFracture9 months ago

I read that research on prunes just last night. Added some to my shopping list! Fortunately, the dates I’ve been eating were also found to be beneficial, just not to the same extent as prunes.

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IndyOkie in reply to Osteoequestrian9 months ago

I bought some a couple nights ago and ate six in the evening….yikes, not sure i can eat them. I was running to the bathroom 5-6 times the next morning.

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FearFracture in reply to IndyOkie9 months ago

Couple of options. Try just adding 1 or 2 prunes a day for a week or two and after two weeks make it 3 prunes, and after 3 weeks make it 4 prunes, and keep doing this until your up to 6 prunes a day. Also, don’t eat them all at once, so for the first 2 weeks have one prune with breakfast and one prune with dinner.

Also, many ppl think that the benefit that our bones get from prunes is boron. If you can’t manage eating the prunes, look into taking a boron supplement.

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IndyOkie in reply to FearFracture9 months ago

Ok thanks

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Met009 months ago

Would you be happy to share your t-scores and, if you have it, your fracture risk score? If you've only just been diagnosed, I'm wondering why you had the DEXA scan in the first place? Have you had one or more fragility fractures? Or was it just part of a general health check? I'm asking these questions, because Prolia shouldn't be recommended as a first line treatment unless your fracture risk is very severe (which would normally mean you've already fractured). You need to be aware that if you start Prolia then have to stop it, you need to go straight onto a bisphosphonate to reduce the very high risk of rebound vertebral fractures. For that reason I wouldn't personally agree to taking Prolia without first being certain that I can tolerate bisphosphonates, which are usually the first-line treatment anyway. If you haven't fractured, even if your t-scores are in the osteoporosis range, it's possible that you'll never fracture, as bone density and bone strength aren't necessarily the same thing. You might also be interested to read this, from the UK medication regulation board, which makes the limitations of bisphosphonates very clear: nice.org.uk/guidance/ta464/...

IndyOkie in reply to Met009 months ago

Thank you for you reply!My scan was a regular one. I think my first one was 12 years ago. From the beginning I’ve had osteopenia but it said very mild stable, was never really instructed at what to do other than the results paper said take calcium, vitamin and do weight bearing exercises. I wasn’t told what that meant and the real necessity and didn’t think much about it unfortunately 😒

I don’t see a Z score

I have -2.5 in right femur neck, and -2.4 in left, -1.6 in AP spine. Total mean of -2.0

I will look at your link. I live in small town USA

I haven’t had any fractures that I know of.

I will check out the link you shared.

Thanks so much

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Capan249 months ago

I am 62 and also recently diagnosed with osteoporosis on my last scan. This was my 3rd scan. With each scan my bones have gotton progressively worse. I eat healthy, exercise daily, take calcium, and recently added Vitamin K2. I decided to try weekly Fosamax. So far, I have had 3 doses and feel fine. For me, the decision to try Fosamax was because I am did not want any further decrease in bone. I am a young 62🙂 and want to continue to live an active heathy life. It is a personal decision and do what's right for you. I don't know how bad your osteoporosis is. Take time to make up your mind.