Young woman diagnosed with osteoporosis

Posted by Sophie93 @sophie93, Aug 9, 2023

I'm in my 30s and I have been diagnosed with osteoporosis.
The scores are the worst in my spine but my hips are also bad.
Tried going the natural route but it just got worse on my next dexa scan. Luckily I'm not in pain and I live an active life, as well as follow a balanced diet, but I have a naturally small build and I'm underweight. Vitamin D, K2 and calcium supplements did nothing, I guess when the source of the problem is hormonal they are basically useless.
I have no family history with osteoporosis but I have gone through an early menopause.
My doctor prescribed ibandronic acid, oral tablet once a month.
Do you have any experience with this?
Thank you xx

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@fearfracture

When did you go through menopause? Are you currently using HRT?

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Hi @fearfracture

My last menstrual cycle was more than 5 years ago. The years beforehand, it started getting irregular and I had a lot of the usual symptoms (hot flashes, vaginal dryness, frequent urination, low libido, depression etc). Some of the symptoms are still present.
I'm not using HRT and I have never used. Maybe that was my mistake...

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@sophie93

Honestly, I have no idea, because I have never actually been at a ''normal weight'' at least when I look at the BMI chart. It seems as if being underweight is the ''normal range'' for my body. But then, I wonder why I have all these problems (early menopause and bone loss) at such a young age... I feel like something must be off...

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Based on your first post and your replies to the questions others have posted, my advice is you find a real doctor who knows what s/he is doing and donā€™t take any osteoporosis meds until you get more information.

Did the doctor who prescribed the bisphosphonates for your bones do ALL of the tests listed on Dr. Brownā€™s website? Here is a link to things you should have checked before you take any osteoporosis meds: https://www.betterbones.com/testing/whats-the-cause-of-your-osteoporosis/

Did s/he do bone turnover marker tests? Did s/he even bother to tell you what bone turnover markers are?

Did s/he advise you to get a DEXA w/ TBS (trabecular bone score)?

Did s/he ask you if you were on HRT or did s/he prescribe it for you?

If you are answering no to the questions Iā€™m asking, donā€™t feel bad, most doctors who claim to treat osteoporosis donā€™t do any of the things I listed above. Mine didnā€™t, which is highly annoying, and I had to figure it all out for myself, and by the way, I went through an extremely early menopause too. I was perimenopausal in my mid-20s and by my very early thirties, I was told I was in menopause. If Iā€™d been put on HRT in my early 30s, Iā€™m 100% confident that I would not have be diagnosed w/ osteoporosis at age 50 (my 1st DEXA, done at age 50, lumbar spine T-score was -3.9, hips were both around -3.1).

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@sophie93

Hi @fearfracture

My last menstrual cycle was more than 5 years ago. The years beforehand, it started getting irregular and I had a lot of the usual symptoms (hot flashes, vaginal dryness, frequent urination, low libido, depression etc). Some of the symptoms are still present.
I'm not using HRT and I have never used. Maybe that was my mistake...

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Go to your OB/GYN ASAP!!! DO NOT WAIT. Iā€™m not joking. Call them right now. GET ON HRT!!!! You should still get the other tests listed on the BetterBones website but starting HRT immediately might save your bones.

Osteoclasts breakdown bone, osteoblasts build bone. Bisphosphonates ā€œworkā€ by slowing bone turnover, they do NOT promote bone formation. Additionally, bisphosphonates interfere with osteoblasts (new bone formation). Like bisphosphonates, HRT reduces bone turnover but it does NOT interfere w/ bone formation (osteoblasts).

What type of doctor (gp, ob/gyn, endocrinologist) is ā€œtreatingā€ your osteoporosis?

The reason Iā€™m urging you to act quickly on starting HRT is that the rule of thumb is that you need to start it w/i 10 yrs of menopause.

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Hi @fearfracture

My doc did all the necessary tests, including everything that is listed in the link that you posted (which is really informative, so thank you for that šŸ™‚ )
I did bone markers tests twice actually: the first was just after the diagnosis, and the second after my follow-up dexa scan. The results showed that there is increased bone resoprtion..
My doctor knows that I have never been on HRT and as I mentioned in one of my post, he thinks that at this point there is no benefit (as far as the bone loss goes). My gynecologist, on the other hand, thinks that there are too much risks with HRT.

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@sophie93

Hi @fearfracture

My doc did all the necessary tests, including everything that is listed in the link that you posted (which is really informative, so thank you for that šŸ™‚ )
I did bone markers tests twice actually: the first was just after the diagnosis, and the second after my follow-up dexa scan. The results showed that there is increased bone resoprtion..
My doctor knows that I have never been on HRT and as I mentioned in one of my post, he thinks that at this point there is no benefit (as far as the bone loss goes). My gynecologist, on the other hand, thinks that there are too much risks with HRT.

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Happy that your doctors are being thorough, my endocrinologist was not, and so many women who post about osteoporosis seem to have doctors that donā€™t do enough, and when I saw that you were 30, was just really concerned.

Mostly because of the horrible US healthcare system (insurance system) 23 yrs ago, I didnā€™t receive HRT and really wish I had.

What type of doctor is the doctor who thinks ā€œthat at this point there is no benefit (as far as the bone loss goes).ā€ If HRT slows your bone loss and you take action to improve your bones, eat a healthy diet, add a few lbs so you reach a healthy weight, etc. you could potentially increase your bones in a semi-natural way.

Did your doctor who prescribed the bisphosphonates tell you that they canā€™t be taken indefinitely? And why does your gynecologist think HRT isnā€™t safe? Do you mean she thinks it isnā€™t safe for you because of your specific health conditions or she doesnā€™t think HRT is safe in general? Everything Iā€™ve read and the doctors Iā€™ve spoken with all seem to agree that HRT can help women maintain healthy bones.

If you think your only option to improve your bones is to take meds then that is your decision. Sounds like you are searching for answers. Hopefully, you find what works best for you.

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@sophie93 I was not suggesting hormonal treatment solely for bones. Women who have hysterectomies at your age have hormone replacement. The lack of estrogen affects a lot of things in the body. There is a slight risk of breast cancer with added estrogen but I wonder what the health effects might be of not doing hormone replacement if you have menopause so early.
Curious what your docs' reasoning is...maybe we could all learn from whatever they are telling you.

I have read Dr. McCormick's book Great Bones and met with him several times. You can do a consult with him. He also had osteopororis at a young age. I believe he will tell you that neither hormones nor bisphosphonates are potent enough to grow bones in your situation.

I wonder if you could do both hormone replacement and Tymlos to start.
If you do a bisphosphonate first, it may affect the effectiveness of bone builders in the future.

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so sorry you are going through this and grappling with the difficult decisions on medications. I agree with many who have posted that you might delve deeper into the option of going on bioidentical hormones, specifically a transdermal estrogen patch and oral progesterone. If you do that along with improving your diet, increasing your weight and including targeted weight bearing and strength training exercise, you *might* be able to increase your bone density at your age. That said, if your bones are already really bad, you might also need a bone builder. The doctors you have seen have told you that it's too late for HRT and that you need a bisphosphonate but most endocrinologists are just not nuanced in the intricacies of each person's situation. They reach for bisphosphonates as an automatic first option due to insurance restrictions. They really have a limited tool kit and generally a limited scope on the disease. Most gynecologists are not well versed in menopause and are still afraid to prescribe HRT as they are stuck in the misguided recommendations of the flawed Women's Health Initiative study. You might want to consult with an expert specifically on HRT as most doctors do not understand it enough to prescribe it. The North American Menopause Society has a database of practitioners that would be knowledgeable on HRT. You're certainly not too old to go on them though I don't know if there are any contraindications in your current health situation and family history. Worth exploring with a doctor who specializes in this area. I was 63 when I went on HRT after I did 2 years of Forteo. I was at the tail end of the acceptable window so it bears a little risk but that's true of all drugs (and of doing nothing as well, it's a complicated decision). If you go on HRT, it could potentially arrest the continuation of bone loss while you explore all of your other options.

Here are a couple of websites that might be helpful in finding a practitioner in your area. One is for menopause specialists and the other is for functional medicine practitioners who might help you dig a little deeper to find out root cause.
https://portal.menopause.org/NAMS/NAMS/Directory/Menopause-Practitioner.aspx
https://www.ifm.org/find-a-practitioner/
https://www.ifm.org/find-a-practitioner/

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@windyshores

@sophie93 I was not suggesting hormonal treatment solely for bones. Women who have hysterectomies at your age have hormone replacement. The lack of estrogen affects a lot of things in the body. There is a slight risk of breast cancer with added estrogen but I wonder what the health effects might be of not doing hormone replacement if you have menopause so early.
Curious what your docs' reasoning is...maybe we could all learn from whatever they are telling you.

I have read Dr. McCormick's book Great Bones and met with him several times. You can do a consult with him. He also had osteopororis at a young age. I believe he will tell you that neither hormones nor bisphosphonates are potent enough to grow bones in your situation.

I wonder if you could do both hormone replacement and Tymlos to start.
If you do a bisphosphonate first, it may affect the effectiveness of bone builders in the future.

Jump to this post

@windyshores

My gynecologist is mainly concerned because of the risk of breast cancer due to HRT. I don't know if that same risk applies to another types of cancer as well. I think that is the main reason why they don't prescribed HRT to me, but I have an appointment with them in a month, so I will ask again šŸ™‚

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@fearfracture

Happy that your doctors are being thorough, my endocrinologist was not, and so many women who post about osteoporosis seem to have doctors that donā€™t do enough, and when I saw that you were 30, was just really concerned.

Mostly because of the horrible US healthcare system (insurance system) 23 yrs ago, I didnā€™t receive HRT and really wish I had.

What type of doctor is the doctor who thinks ā€œthat at this point there is no benefit (as far as the bone loss goes).ā€ If HRT slows your bone loss and you take action to improve your bones, eat a healthy diet, add a few lbs so you reach a healthy weight, etc. you could potentially increase your bones in a semi-natural way.

Did your doctor who prescribed the bisphosphonates tell you that they canā€™t be taken indefinitely? And why does your gynecologist think HRT isnā€™t safe? Do you mean she thinks it isnā€™t safe for you because of your specific health conditions or she doesnā€™t think HRT is safe in general? Everything Iā€™ve read and the doctors Iā€™ve spoken with all seem to agree that HRT can help women maintain healthy bones.

If you think your only option to improve your bones is to take meds then that is your decision. Sounds like you are searching for answers. Hopefully, you find what works best for you.

Jump to this post

@fearfracture

My gynecologist is mainly concerned because of the risk of breast cancer. I have family history with it. I don't know how high that risk is with HRT, but just the word cancer in itself makes me fearful šŸ™
I don't know really... I'm confused. I will visit my gynecologist in a month and I will for sure mention HRT once again, so we can explore all the possibillities.

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@teb

so sorry you are going through this and grappling with the difficult decisions on medications. I agree with many who have posted that you might delve deeper into the option of going on bioidentical hormones, specifically a transdermal estrogen patch and oral progesterone. If you do that along with improving your diet, increasing your weight and including targeted weight bearing and strength training exercise, you *might* be able to increase your bone density at your age. That said, if your bones are already really bad, you might also need a bone builder. The doctors you have seen have told you that it's too late for HRT and that you need a bisphosphonate but most endocrinologists are just not nuanced in the intricacies of each person's situation. They reach for bisphosphonates as an automatic first option due to insurance restrictions. They really have a limited tool kit and generally a limited scope on the disease. Most gynecologists are not well versed in menopause and are still afraid to prescribe HRT as they are stuck in the misguided recommendations of the flawed Women's Health Initiative study. You might want to consult with an expert specifically on HRT as most doctors do not understand it enough to prescribe it. The North American Menopause Society has a database of practitioners that would be knowledgeable on HRT. You're certainly not too old to go on them though I don't know if there are any contraindications in your current health situation and family history. Worth exploring with a doctor who specializes in this area. I was 63 when I went on HRT after I did 2 years of Forteo. I was at the tail end of the acceptable window so it bears a little risk but that's true of all drugs (and of doing nothing as well, it's a complicated decision). If you go on HRT, it could potentially arrest the continuation of bone loss while you explore all of your other options.

Here are a couple of websites that might be helpful in finding a practitioner in your area. One is for menopause specialists and the other is for functional medicine practitioners who might help you dig a little deeper to find out root cause.
https://portal.menopause.org/NAMS/NAMS/Directory/Menopause-Practitioner.aspx
https://www.ifm.org/find-a-practitioner/
https://www.ifm.org/find-a-practitioner/

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@teb

Thank you for your elaborate reply! I will look into the links you posted.
I don't know if my scores are objectively "that bad", but my total spine is -3.6 and left and right hip both -2.8
I know those are "just numbers" but it's clearly in the osteoporosis territory and for sure not good for someone my age...

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