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tuska 01-30-2013 03:03 PM

25 years old just diagnosed with osteoporosis
 
Hi,

I am 25 years old, otherwise completely healthy, active elite rower, 125lbs and have just been diagnosed with osteoporosis. I had a DEXA due to re occurring rib stress fractures which came back as -2.47 in femoral neck and -2.68 in lumbar spine. I am in a bit of shock (as is the team doc) as we were not expecting this at all and just did the DEXA to rule low bone density out.

I don't really know what to do and am waiting on an appointment with an endocrinologist. Anybody else with premenopausal osteoporosis? Doctor says first step is to check for underlying causes -any idea what these could be? Get blood test results back tomorrow and x-ray of spine due to lower back pain. Is it possible to increase bone density from this point? Everything I have read so far talks about improving diet, lifting weights, getting more sun but as a rower with a team nutritionist and weight training program I already do all of this quite well I would think.

Sorry if this post is a bit vague, I don't really know what I hope to gain but I am kind of overwhelmed by this diagnosis and will be reading through the forum to try to get an idea of what I'm up against. Hello to you all :)

dembones 01-31-2013 05:05 PM

Re: 25 years old just diagnosed with osteoporosis
 
i wish you a lot of luck, none of us are doctors , so we can't tell you what or if something is going to work. I hope you are getting sunshine and taking calcium and vitamin D. I have heard of elite bicyclists being in your shoes too. But man, i always thought rowing was a weight bearing exercise!!

astonish 02-12-2013 09:26 AM

Re: 25 years old just diagnosed with osteoporosis
 
I wish you get normal again. And I hope you will. Do not lose heart sweety. Take exposure to sun for at least 20 minutes daily. eat soya food. eat green leaves, take calcium and vitamin D ( as suggested by doctor ). walk for 30 minutes daily.

dembones 02-12-2013 09:28 AM

Re: 25 years old just diagnosed with osteoporosis
 
it's not so easy to get 20 minutes of sun a day. We have weeks with no sunshine here!
i wish I could!!

PJVA2013 02-26-2013 05:02 PM

Re: 25 years old just diagnosed with osteoporosis
 
[QUOTE=tuska;5125426]Hi,

I am 25 years old, otherwise completely healthy, active elite rower, 125lbs and have just been diagnosed with osteoporosis. I had a DEXA due to re occurring rib stress fractures which came back as -2.47 in femoral neck and -2.68 in lumbar spine. I am in a bit of shock (as is the team doc) as we were not expecting this at all and just did the DEXA to rule low bone density out.

I don't really know what to do and am waiting on an appointment with an endocrinologist. Anybody else with premenopausal osteoporosis? Doctor says first step is to check for underlying causes -any idea what these could be? Get blood test results back tomorrow and x-ray of spine due to lower back pain. Is it possible to increase bone density from this point? Everything I have read so far talks about improving diet, lifting weights, getting more sun but as a rower with a team nutritionist and weight training program I already do all of this quite well I would think.

Sorry if this post is a bit vague, I don't really know what I hope to gain but I am kind of overwhelmed by this diagnosis and will be reading through the forum to try to get an idea of what I'm up against. Hello to you all :)[/QUOTE]


I was diagnosed with osteoporosis at age 40 when I got my first DEXA. I did see specialists and basically came to the conclusion that the low bone mass was what my peak bone mass was. In other words in youth all I achieved was something already in the osteoporosis range. I am short with a small bone frame which is one factor. I also assume I had low level of hormones in youth since I went into early menopause at age 40. I tried everything and basically costed a long OK up to now at age 55 when my BMD dipped even lower. I did try Forteo and it didn't help. I have tried Actonel too.

tuska 03-06-2013 11:07 PM

Re: 25 years old just diagnosed with osteoporosis
 
Thank you every one for your kind replies. I would struggle to improve my diet and sun exposure any further-especially in the amazing summer we are having at the moment here in NZ!

I saw the endocrinologist today and he is very keen to get me started on Fosamax. I have the prescription in my bag and he is applying for me to get an I.V. dose that lasts 2-3 years. I am a bit hesitant though, I am going to read up a bit more on these drugs and am definitely not going to opt for the I.V.

The endocrinologist seems very good, and open to discussing my options. We are going to work towards increasing my bone mass so that when I do hit menopause, and it naturally starts to drop, it has somewhere to go -this is not about any concern of fracture at the moment. I have had another 4 vials of blood taken today just to check a few more factors for underlying issues and if not then he advises me to start fosamax. If anybody wants to give me any advice towards fosamax that would be great, but I do understand this is quite a debatable topic so I will also start looking into it further myself before I pop the pill.

Thank you again!

ladybud 03-07-2013 02:13 AM

Re: 25 years old just diagnosed with osteoporosis
 
Osteoporosis at such an early age is often cause by either excess parathyroid hormone causing calcium to move from bones to blood, or an absorption problem in the GI tract where you are not absorbing calcium properly. Vit D deficincy, which causes poor calcium absorption, can be caused by malabsorption too. A common cause of this is celiac disease from gluten intolerance. I would ask to have blood tests for parathyroid hormone, antibody tests for celiac disease, and a Vit D level checked. I would think the endo may have already ordered some of these, but if you have hyperparathytoidism or celiac, Fosamax won't really help. Have you had anemia (another sign of celiac?) Have you avoided milk because of allergy or lactose intolerance? It is important to figure out the cause for this and not just try to treat it.

tuska 03-07-2013 02:12 PM

Re: 25 years old just diagnosed with osteoporosis
 
Thank you for your informed reply ladybug! I have had a few blood tests my GP ordered after the DEXA and radiologists report/suggestions. I believe these were just to cover general organ health markers, serum calcium, thyroid function and inflammatory markers. Everything thus far has come back fine -which is weirdly disappointing, I wish there was a problem to fix! After seeing the endo he requested some more tests to cover vit D, celiacs and I presume I few other things since it required 5 blood vials and 2 urine samples.

I have had no signs of celiacs and generally eat a very low gluten diet anyway as my partner cannot eat gluten. I had a short stage of avoiding milk when I was around 16-17 but drank "womens specific" fortified soy as an alternative.

The endo suspects I am just having an unluckily huge response to a very short period of anorexia diagnosed at 18 (in recovery by 20) which is why he has prescribed the Fosomax even though we will wait for these final blood results. I however am beginning to think I will opt to not take the drugs just yet. I have scaled back my training, resigned from elite sport, and am no longer exercising for 4+ hours a day. I am still active, but more like 1 hour a day. I figure that I have time on my side, and because of my age I am at low risk of fracturing despite some Z/T -score locations being -2.9. I will see if being even more careful about my diet and doing less endurance/intensive exercise will have any effect over the next couple of years when I get another bone scan. If the bone scan shows further loss, or I suffer any fractures etc I will re asses this decision. It seems best to save Fosomax/bisphosphonates for when I am actually at risk of fracture.

Still hopeful for celiacs or something to show in this final round of tests!

I am grateful for this board as it is difficult to discuss this sort of thing with my friends etc who are not at all concerned about osteo at this stage in their lives!

PJVA2013 03-07-2013 06:37 PM

Re: 25 years old just diagnosed with osteoporosis
 
Are you short with a thin frame? One thing to note is that what they consider to be normal is not based on short tiny women. Short tiny women will not attain the same peak bone mass as heavier taller women. It's possible their idea of normal is skewed.

I wonder if they have had you do a urine collection test to check what rate you are losing bone at. If you aren't losing bone at an abnormal rate then I would question why you should take Fosamax. Fosamax doesn't build bone it only stops bone loss. Just wondering if weight lifting, and a bone building formula and improved diet would be all you need?

I'm in the same boat as you.....just older. I'm also trying to figure out what to do.

tuska 03-07-2013 06:50 PM

Re: 25 years old just diagnosed with osteoporosis
 
I am average height and weight, 168 cm, 59 kg, with quite a bit of muscle.

I am getting more and more hesitant to take Fosamax, and think I will try alternatives and assess after my next bone scan in 2 years.

Unfortunately for the past 3 years I have been doing weight training 3x a week (on top of rowing-specific endurance training 9x a week) training under Olympic strength and conditioning coaches and have had a very healthy diet of whole grains, fruit, veg, meat and dairy to fuel my training and performance in sport (the odd treat every 2 weeks or so!). I think this is why they are considering Fosamax, my lifestyle is essentially what is typically prescribed to someone with low bone density (though obviously less intense exercise) and they see little potential for me to improve my situation through lifestyle alone.

I am still hopeful!

ladybud 03-08-2013 07:43 AM

Re: 25 years old just diagnosed with osteoporosis
 
The bisphosphonates (like Fosamax) can actually improve your bone mass, maybe not back to normal, but some improvement can occur. If you have had several rib fractures, you are prone to fractures elsewhere. One of the most painful and deforming fractures, compression fractures in the spine, occur insidiously over time and cause the "humpback" of osteoporosis. There is little to nothing that can be done about these fractures and often result in long term pain. I would reconsider your decision about taking medication. Your Z scores are really low, and besides finding out what is causing this and correcting it, I would be more concerned about further bone damage than taking a medicine to prevent further fractures. Just my opinion, of course, there is always a risk/reward to any decision.

PJVA2013 03-08-2013 08:44 AM

Re: 25 years old just diagnosed with osteoporosis
 
[QUOTE=tuska;5143524]I am average height and weight, 168 cm, 59 kg, with quite a bit of muscle.

I am getting more and more hesitant to take Fosamax, and think I will try alternatives and assess after my next bone scan in 2 years.

Unfortunately for the past 3 years I have been doing weight training 3x a week (on top of rowing-specific endurance training 9x a week) training under Olympic strength and conditioning coaches and have had a very healthy diet of whole grains, fruit, veg, meat and dairy to fuel my training and performance in sport (the odd treat every 2 weeks or so!). I think this is why they are considering Fosamax, my lifestyle is essentially what is typically prescribed to someone with low bone density (though obviously less intense exercise) and they see little potential for me to improve my situation through lifestyle alone.

I am still hopeful![/QUOTE]

The exercise you do sounds great. I wonder if all that might have resulted in a low body fat, and perhaps lower estrogen levels? Have you missed periods? When I was young I had low body fat and did miss periods.

As for your diet you'd have to make sure to eat dark leafy greens and dairy.

It does sound puzzling though. I would like to find out from others here if there have been success stories with Fosamax.

ladybud 03-08-2013 09:22 AM

Re: 25 years old just diagnosed with osteoporosis
 
I have been on Fosmax, Actonel and now Boniva for several years. These are PREVENTIVE drugs. They don't help once the fractures in spine etc have occurred, only to prevent further damage. So starting them early is the key. I have had no trouble with any of them and they have improved my bone mass from osteoporosis zone up to normal. Boniva, and I believe Fosamax, can be taken once a month so no big deal, in my view. Better that than fractures for no good reason. The lady before that posted about low body fat and low estrogen from over-exercising made a good point too. That can contribute to osteo because estrogen enhances calcium deposition in the bones. Thanks for your input!

tuska 03-08-2013 09:37 AM

Re: 25 years old just diagnosed with osteoporosis
 
I guess it is the emerging evidence that bisphosphonates in the longterm may have negative effects, at least after 5 years there is no positive effect, is part of my concern. Also is the fact the drug is not entirely FDA approved for use in premenopausal women, mostly as it has been shown to cause adverse effects in pregnancy (comes with a class C warning) and unlike most drugs stay in your body for a very long time -studies have shown 6 years with new drugs up to 10. I am not looking to have a baby right now, but at 25 years old this is a very scary idea, and definitely part of my "10-year plan!".

I am extremely concerned about this diagnosis and the potential for vertebral fractures. I have retired from elite sport and given up that dream. I am however, hesitant to go on drugs at this stage. I really do appreciate all your advice though. I just wonder if putting less strain on my body for a couple of years, taking "bone building" vitamin supplements, avoiding acidic foods and looking into alternatives like lactoferrin could be a good idea in my case as my bones are still young and my endocrinologist says my risk of fracture is still very low - he does not advise any lifestyle changes at this point, I am free to run etc.

Does anyone premenopausal have any experience with bisphosphonates? (Ladybug, you could well be, I just don't want to assume!!)

Oh also, regarding low body fat and estrogen; I have been on the pill the entire time I have been in this elite squad so never lost my period. I did have a short stage without it around 16-17 just from high school level training which was quite intense but have maintained a high enough BF since. I do think this training had to be part of the problem though. High intensity for on average 4 hours a day, up to 3-4 seperate sessions a day, requiring a wake up time of 4.30am. I put a lot of strain on my body and struggled to get enough sleep and was very stressed.

Thank you again to everyone who is contributing here, I am finding it unbelievably helpful in understanding what I am facing and my options. Really appreciated!!

PJVA2013 03-08-2013 11:15 AM

Re: 25 years old just diagnosed with osteoporosis
 
[QUOTE=tuska;5143800]
Does anyone premenopausal have any experience with bisphosphonates? (Ladybug, you could well be, I just don't want to assume!!)

Oh also, regarding low body fat and estrogen; I have been on the pill the entire time I have been in this elite squad so never lost my period. I did have a short stage without it around 16-17 just from high school level training which was quite intense but have maintained a high enough BF since. I do think this training had to be part of the problem though. High intensity for on average 4 hours a day, up to 3-4 seperate sessions a day, requiring a wake up time of 4.30am. I put a lot of strain on my body and struggled to get enough sleep and was very stressed.

[/QUOTE]

Stress is not good for bones. It releases Cortisol which deteriorates bones. When I was a teen I had a couple years when my period stopped. I also went through a time of exercising some 4 to 5 hours a day.

Maybe your answer is to try yoga and some weight lifting and walking....get sunshine, and bone building supplements and enough calcium rich foods? Since you are still young enough to produce estrogen naturally then I would wonder if you can't rebuild your own bone without the Fosamax?


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