Anybody out there have medication induced Osteoporosis?

Posted by osteocurious @osteocurious, Feb 8 11:51am

I do. 45 years on antiseizure meds. 60 years old and feeling it. I feel like I lost time. New diagnosis and know prevention AND sustaining bone density is of utmost importance. My question - if you take a med that actively reduces the body’s ability to absorb calcium - what then? Do the OP meds help with absorption or just bone turnover and building? My concern is I will always be fighting the lack of absorption. Vit D facilitates this “normally” but I am not normal (😊) Nothing I have read talks about how to help with Calcium absorption of a med is blocking it. Any help is appreciated. Insee my doc again in March.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for mcchesney @kathleen1314

@nycmusic
What a great link thank you.
I have shared the link on Inspire; I will gladly say that you provided the information if you don't mind your name being placed on this post:
https://www.inspire.com/m/Kathleen1314/journal/eb5c44-a-comprehensive-list-of-medicines-that-cause-bone-loss/

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@kathleen1314 thanks, great to post here, so easily accessed.

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Inspire looks interesting, if I can get past initial join up hurdles.

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Profile picture for osteocurious @osteocurious

@kathleen1314
Not a problem. I found it like anybody else can. 🙂

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@osteocurious
Thank you I have cited your "finding".

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Profile picture for mcchesney @kathleen1314

@nycmusic
Most of the concern was with higher TSH levels.
But....
There is at least one study of around 450 people with 81 euthyroid levothyroxine users done at John Hopkins.
The conclusion was this: “Our study suggests that even when following current guidelines, levothyroxine use appears to be associated with greater bone loss in older adults,” said Shadpour Demehri, M.D., co-senior author and professor of radiology at Johns Hopkins.
It seems there was more concern in older adults. (what else is new, ha)
https://www.rsna.org/media/press/i/2538
Interestingly, this study seems to be even more nuanced in that this research had a particular profile: 70 and older, T4 only no T3, normal tsh but free t4 was often high, normal free t3 was low normal, already declining bone density, taking no BHRT or HRT, no strontium therapy.
This profile was extracted by copilot from numerous different sources. If you want a list just put the question into copilot, and it will list them for you.

Whatever the situation it seems conservative for those of us on thyroid hormone to watch our bone health carefully and to observe best practices.

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@kathleen1314 WOW! I have been on levothyroxine since high school. I thought it was one of the few drugs I didn’t have to worry about hurting me. I don’t think there’s an alternative to me taking it and I do seem to need it. Today was the first time I ever heard of strontium.

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Profile picture for HomeAgainLA @llynch17056

@kathleen1314 WOW! I have been on levothyroxine since high school. I thought it was one of the few drugs I didn’t have to worry about hurting me. I don’t think there’s an alternative to me taking it and I do seem to need it. Today was the first time I ever heard of strontium.

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@llynch17056
Well personally, I am not seeing much to make me concerned about Levothyroxine research with bone health; seems as long as you follow good bone health and especially don't have high T4 levels and add in t3 then everything is ok.
I know that I have used levothyroxine for years and still have good bone density and good bone quality (TBS), and I started with osteoporosis.
So the strontium seems to be working plus all the usual bone "usual suspects" thank you Casablanca. 🙂

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Profile picture for mcchesney @kathleen1314

@llynch17056
Well personally, I am not seeing much to make me concerned about Levothyroxine research with bone health; seems as long as you follow good bone health and especially don't have high T4 levels and add in t3 then everything is ok.
I know that I have used levothyroxine for years and still have good bone density and good bone quality (TBS), and I started with osteoporosis.
So the strontium seems to be working plus all the usual bone "usual suspects" thank you Casablanca. 🙂

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@kathleen1314 thank you for that.

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@osteocurious yes, I am on Synthroid for the last 20 years! They say it affects bones if the dose is too high. How can they possibly determine that? What might be ok for one might be too high for another. My TSH has always been below 2.0 on Synthroid. Last checked it was 1.5. I find it almost impossible to relax ,although I do sleep fairly well and get at least 7 hours. I am 68. When I questioned it, I was told it was within range. I replied that it was not for a 68 year old with osteoporosis.

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Profile picture for HomeAgainLA @llynch17056

@kathleen1314 WOW! I have been on levothyroxine since high school. I thought it was one of the few drugs I didn’t have to worry about hurting me. I don’t think there’s an alternative to me taking it and I do seem to need it. Today was the first time I ever heard of strontium.

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@llynch17056 ideally docs don’t overprescribe levo. or any other med…thyroid levels should be checked regularly, so that the dosage can adjusted to exactly what’s needed-my doc does that-i even have to split one of the pills each week…..these days, people are more aware of side effects and info much easier to get, and we have groups like this Mayo pointing out useful info.,so we can take simple countermeasures to help our bones.

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Profile picture for blueberre @blueberre

@osteocurious yes, I am on Synthroid for the last 20 years! They say it affects bones if the dose is too high. How can they possibly determine that? What might be ok for one might be too high for another. My TSH has always been below 2.0 on Synthroid. Last checked it was 1.5. I find it almost impossible to relax ,although I do sleep fairly well and get at least 7 hours. I am 68. When I questioned it, I was told it was within range. I replied that it was not for a 68 year old with osteoporosis.

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@blueberre
We are learning so much. The hard way. Sounds like we are in similar boats. And you are starting to advocate more. I wish you all the best on your journey! I know I will be actively advocating for my bone health now. Maybe I will bring the list of meds that cause bone loss to my appointments with different providers and even give it to them!

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Profile picture for blueberre @blueberre

@osteocurious yes, I am on Synthroid for the last 20 years! They say it affects bones if the dose is too high. How can they possibly determine that? What might be ok for one might be too high for another. My TSH has always been below 2.0 on Synthroid. Last checked it was 1.5. I find it almost impossible to relax ,although I do sleep fairly well and get at least 7 hours. I am 68. When I questioned it, I was told it was within range. I replied that it was not for a 68 year old with osteoporosis.

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@blueberre
I think that what you are questioning is all the variables that exist among a population and over long term use and individual changes all through those years, 20 or more.
What I see from the research that a google search brings up of levothyroxine long term use are research studies that are basically large population studies to check for problems. There are large national data bases of patients, especially overseas which can be used for study. Data bases full of all medical information and new bone tests and scans.
Then....
Researchers find a "twin" for the patient—someone the same age, weight, and health status who isn't on the drug—to compare them directly. Filters are then used that remove the influence of factors like Vitamin D deficiency or physical activity levels, etc.
Plus....
They look at biochemical markers and bone tests that alert to problems with bone turnover.

Population studies usually are actually the beginning of research and sometimes they are not done well, but scientists are getting better are looking at large data bases of information. Plus, science is better at making these large data bases with lots of usuable information that can be used better for large population research.

Think of it similar to "ring door bells" and business and home cameras, all which are now everywhere. Because of this photo prevalence, crime and especially kidnapping is less likely to work without the perpetrators being caught because there is such a large amount of information gleaned from the photos etc. that people can be followed and physical characteristics found even if masked and gloved. The huge wealth of information allows a narrowing down to an exact person.
So does the large medical data bases, full of lots of information and the more information shared the better the conclusions which may occur.

So in this case government surveillance, may be helping us. And AI is capable of looking at an amazing amount of information and putting it into a usable format.
So that is how they have the ability to "possibly determine that a high dose affects bones".

As NYCmusic says this high dose is also less likely now because of better tests and better follow up by doctors which doesn't throw us into hyperthyroidism and the danger territory.

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