Severe osteoporosis at age 29. Is Calcichew and D3 enough?

Posted by hmoon @hmoon, Jul 19 8:36pm

Hi there,

I am 29 years old and was recently diagnosed with severe osteoporosis at 28. My spine BMD is -4. I have hypogonadism and hypogonaclatrophic due to a malfunction of the pituary gland. My pituary gland doesnt have a tumour but it isnt functioning. I have had irregular periods and amenorrhoea since my teens.
The endocrinologist has put me on OVREENA pill and Calchichew D3 Forte daily plus 25,000 vita D per month. Blood tests show my calcium and D levels are good but I have no estrogen.
I am not coeliac I have cut out gluten. I drink a lot of fortified milk and have started taking things that promote healthy hormones such as flaxseed. My diet is rich in foods that promote good bone health. I exercise daily; a moderate walk.
I have just gotten my first period in 3 years. Has the OVREENA pill worked? Will my bone density improve? Or do I need a stronger medication for my osteoporosis such as Teriparatide or Forteo? I am really scared and don't know any other young people who have osteoporosis.
Any advice would be appreciated so much.

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@windyshores

@hmoon I am concerned for you, since you are relying on calcium, D3 and estrogen to try to reverse pretty severe bone density issues. I am unclear why an endocrinologist would not prescribe Evenity or, if your parathyroid is working, Forteo or Tymlos. I am wondering if only the latter two are available where you are and the endocrinologist is first making sure your parathyroid is working well. My spine was -3.7 when I fractured 3 lumbar vertebrae in one moment, which permanently altered my life in terms of pain and what I can do. You are only 29 and I don't want that for you! Please be careful until the doctor can explain this (or you have seen another doctor). I don't know how the medical system works in Ireland and if there are long waits but it seems fairly urgent.

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I give kudos ro the endo for treating her as a whole person and not just bones or some other part. That seems to be a rarity today. Possibly the endo has prioritized addressing her lack of hormones which is causing the bone loss among other consequences. She is addressing bone loss but seemingly keeping that in perspective. Once the hormones are stabilized, then it might be evaluation time.

Plus hmoon's body might appreciate a step approach rather than bring assaulted in too many directions at one time

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@babbsjoy

@windyshores
I will second your cautionary post. My spine dexa is -3.6. I asked PT about ankle weights or weighted vest and about heel drops and they said they absolutely would not recommend any of those measures. I have been given a variety of exercises that are very moderate (stretch bands and limited weight) to do, and walking for an hour a day (briskly). And like you said, no twisting, etc. PT was invaluable in demonstrating and practicing safe movements. (And I am Tymlos bound—waiting to see if insurance is going to cooperate)

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I want to add, though, that we all have to make the best decisions we can for ourselves given the information we gather from reliable sources and our docs. What works and is ok and even beneficial for some (like weights, etc) may not be appropriate for others (like I was advised for my case). That is one of my big take aways from this wonderful site! I really appreciate how freely people on here support each other and share what works, and doesn’t work, for them. (And I didn’t want to negate the fact that some things deemed too risky for me, have been helpful for someone else.)

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@normahorn

I give kudos ro the endo for treating her as a whole person and not just bones or some other part. That seems to be a rarity today. Possibly the endo has prioritized addressing her lack of hormones which is causing the bone loss among other consequences. She is addressing bone loss but seemingly keeping that in perspective. Once the hormones are stabilized, then it might be evaluation time.

Plus hmoon's body might appreciate a step approach rather than bring assaulted in too many directions at one time

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@normahorn I can see how a step approach would be appropriate but just cautioned to be careful! The parathyroid may need to function again before any attempt to grow bone. Her doctors can help with that and it is beyond this forum.

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Does anyone know what can be prescribed for someone my age? Or of anyone else that has osteoporosis? Diet wise and nutrition I am doing everything I can.

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@hmoon

Does anyone know what can be prescribed for someone my age? Or of anyone else that has osteoporosis? Diet wise and nutrition I am doing everything I can.

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I think all of us on the osteoporosis forum have osteoporosis, with the exception of a few spouses or kids here and there. I am not aware of age limitations for medications like Evenity, Tymlos or Forteo and for the latter two, but discuss with your doctor. I only wonder about your parathyroid function and its effect on those treatments. I hope you trust your endocrinologist and can explore plans for your treatment further.

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