Tim82
05-16-2008, 08:43 PM
Hi
I could use some support- I feel like my whole life is coming to a standstill
I am 26 and have just been diagnosed with osteoporosis. I have mild vitamin d deficiency, but doctors are still otherwise looking for a secondary cause (initial tests due next week)
I am very afraid.
Lumbar spine T score -1.9, hip t-score -2.6. never had a fracture, I go for brisk walk once per week and am overweight.
Will my children be able to hug me?
will i need a walking frame like an old man?
What is the chance of having a normal t score in the future with treatment?
I would appreciate any good recources you can offer
Tim
I could use some support- I feel like my whole life is coming to a standstill
I am 26 and have just been diagnosed with osteoporosis. I have mild vitamin d deficiency, but doctors are still otherwise looking for a secondary cause (initial tests due next week)
I am very afraid.
Lumbar spine T score -1.9, hip t-score -2.6. never had a fracture, I go for brisk walk once per week and am overweight.
Will my children be able to hug me?
will i need a walking frame like an old man?
What is the chance of having a normal t score in the future with treatment?
I would appreciate any good recources you can offer
Tim
Sponsor
taape
05-16-2008, 08:59 PM
Hi,
Sorry to hear that you've been diagnosed with osteoporosis. I was quite shocked when I got diagnosed also but that passes with time. You spine T Score doesn't look that bad, but it's the hip that has it. I hope they find a secondary cause so that can be treated.
I have much worse scores than you and I lead a pretty much normal life with this but I'm always afraid I might get a fracture. I'm twice your age and haven't had a fracture until 2 months ago when I got my foot caught in a pot hole and had an akle fracture. This is a good place for support. I worried that my fracture wouldn't heal but it did.
I wouldn't have your kids jump on your back or tackle you playing football but otherwise just be careful not to fall. It's possible to have a normal T score with treatment. Your young so you found out early and have lots of time for treatment if you want it. What has your doctor suggested so far? Just taking Vit D and calcium?
Sorry to hear that you've been diagnosed with osteoporosis. I was quite shocked when I got diagnosed also but that passes with time. You spine T Score doesn't look that bad, but it's the hip that has it. I hope they find a secondary cause so that can be treated.
I have much worse scores than you and I lead a pretty much normal life with this but I'm always afraid I might get a fracture. I'm twice your age and haven't had a fracture until 2 months ago when I got my foot caught in a pot hole and had an akle fracture. This is a good place for support. I worried that my fracture wouldn't heal but it did.
I wouldn't have your kids jump on your back or tackle you playing football but otherwise just be careful not to fall. It's possible to have a normal T score with treatment. Your young so you found out early and have lots of time for treatment if you want it. What has your doctor suggested so far? Just taking Vit D and calcium?
indersonu
05-16-2008, 09:06 PM
Hi there,
If I were you I would check your hormone levels, check if there is no gene link, check your potassium levels, vitamins, calcium, thyroid levels.
sincerely
Inde
If I were you I would check your hormone levels, check if there is no gene link, check your potassium levels, vitamins, calcium, thyroid levels.
sincerely
Inde
starfish81
05-16-2008, 10:55 PM
Hi Tim, and welcome to these boards. I'm curious: you're male, 26, overweight, and no history of fractures. What promped your doctor to do the bone density scan that led to this diagnosis?
I'm 51 and have a much worse spinal score than you, and I don't restrict my activities in any way. I just spent the weekend moving (translate: lugging furniture up & down stairs), plus I regularly twist and flex my spine doing private training in Pilates, and I'm a black-diamond downhill skiier. My naturopath and personal trainers know my T-scores and neither sees any reason to restrict anything in terms of movement. If anything, my posture is improved as a result of working out.
I'm 51 and have a much worse spinal score than you, and I don't restrict my activities in any way. I just spent the weekend moving (translate: lugging furniture up & down stairs), plus I regularly twist and flex my spine doing private training in Pilates, and I'm a black-diamond downhill skiier. My naturopath and personal trainers know my T-scores and neither sees any reason to restrict anything in terms of movement. If anything, my posture is improved as a result of working out.
Tim82
05-17-2008, 12:46 AM
Hi and thankyou for your encouragement!
I was tested for osteoporosis because I have been on rabeprazole for several years, in very high doses. this drug has been found to impair absorbtion of calcium. I also spend a lot of time indoors, and my GP noticed I have low vitamin D, so she suggested a DEXA would be a good idea.
I will see my doctor on monday to discuss the dexa scan, and probably have blood taken at that time to look for secondary causes (hypogonadism, hyperparathyroid) My potassium is normal and i think my calcium is too- although primary hyperparathyroidism seems like a possibility given I have had 5 years of unexplaned abdominal pains, reflux headaches, fatigue and mood disturbance
Do any of you have resources I can read about how to improve my t score, and the likelihood i can get it to be normal in a few years? I have started an over the counter calcium citrate and vitamin d supplement
many thanks again!
I was tested for osteoporosis because I have been on rabeprazole for several years, in very high doses. this drug has been found to impair absorbtion of calcium. I also spend a lot of time indoors, and my GP noticed I have low vitamin D, so she suggested a DEXA would be a good idea.
I will see my doctor on monday to discuss the dexa scan, and probably have blood taken at that time to look for secondary causes (hypogonadism, hyperparathyroid) My potassium is normal and i think my calcium is too- although primary hyperparathyroidism seems like a possibility given I have had 5 years of unexplaned abdominal pains, reflux headaches, fatigue and mood disturbance
Do any of you have resources I can read about how to improve my t score, and the likelihood i can get it to be normal in a few years? I have started an over the counter calcium citrate and vitamin d supplement
many thanks again!
DesertBloom
05-17-2008, 05:21 PM
Hi Tim Welcome.... I agree that your spine t-score is not too bad and that your hip score is worse, but since you are young there is plenty of time to reverse this. I don't think you need to make any major adjustments to your activities, but I would use common sense when it comes to doing things that put stress on your hip or spine. Weight bearing exercise, and vitamins should help, but if you have a secondary cause of osteo, treating that should help immensely.
Below is a link I like about osteoporosis and osteopenia, it explains the whole process in easy to understand language, and tells you about all the options for treatment etc. It will take some time to navigate through all the pages at this link, it's quite long. The link is from the Univ of WA Bone Physiology Course. Try to read as much as you can, because it answers most of the questions you can think of.
My scores started out at -3.6 and are now -2.5 (the lowest) and I've been on Forteo for 23 months. I finish taking it at the end of June and will start Evista then. I've had frax's, but the first was the result of a car accident, which resulted in a spinal fusion. I've had 7 fusions in all, but the 6 that occurred after the first were a result of failed fusions due to osteo, and early non-surgical meno. I was dx'd when I was 30 and now I'm 54. When I was first dx'd I only did the vitamins and exercise and that didn't improve my bone density, so since I've been on Forteo I've improved tremendously.
Normal bone density is any score better than -1
Osteopenia is -1 to -2.5 (Osteopenia is bone loss)
Osteoporosis is -2.5 and below (Osteoporosis is a bone disorder)
Don't hesitate to ask any of us questions, and being scared at first, is really normal.
Good Luck...
http://courses.washington.edu/bonephys/ophome.html
Below is a link I like about osteoporosis and osteopenia, it explains the whole process in easy to understand language, and tells you about all the options for treatment etc. It will take some time to navigate through all the pages at this link, it's quite long. The link is from the Univ of WA Bone Physiology Course. Try to read as much as you can, because it answers most of the questions you can think of.
My scores started out at -3.6 and are now -2.5 (the lowest) and I've been on Forteo for 23 months. I finish taking it at the end of June and will start Evista then. I've had frax's, but the first was the result of a car accident, which resulted in a spinal fusion. I've had 7 fusions in all, but the 6 that occurred after the first were a result of failed fusions due to osteo, and early non-surgical meno. I was dx'd when I was 30 and now I'm 54. When I was first dx'd I only did the vitamins and exercise and that didn't improve my bone density, so since I've been on Forteo I've improved tremendously.
Normal bone density is any score better than -1
Osteopenia is -1 to -2.5 (Osteopenia is bone loss)
Osteoporosis is -2.5 and below (Osteoporosis is a bone disorder)
Don't hesitate to ask any of us questions, and being scared at first, is really normal.
Good Luck...
http://courses.washington.edu/bonephys/ophome.html
Tim82
05-19-2008, 03:17 AM
Hi saw my doctor today.
he said "I have never seen this before in a young man". He didnt know what tests to do, and it looks like it will be several weeks until I can see a specialist.
I am very anxious- i want to be young and strong, and I am worried it is caused by something serious.
His advice was to avoid contact sports and "don't fall off a ladder"!
EDIT Got my final scores here if you guys can help me interpret: The final results are a bit better than I thought
L2-L4: T score -1.3 Z score -1.7 BMD 1.1
Left Femur T score -2.2 Z score -2.5 BMD 0.8
he said "I have never seen this before in a young man". He didnt know what tests to do, and it looks like it will be several weeks until I can see a specialist.
I am very anxious- i want to be young and strong, and I am worried it is caused by something serious.
His advice was to avoid contact sports and "don't fall off a ladder"!
EDIT Got my final scores here if you guys can help me interpret: The final results are a bit better than I thought
L2-L4: T score -1.3 Z score -1.7 BMD 1.1
Left Femur T score -2.2 Z score -2.5 BMD 0.8
phylwill1152
05-19-2008, 08:09 AM
HI Tim and welcome to the board...Sorry to hear you are facing this problem at such a yaoung age, but like the other have said you have time to make improvements. The scores you just posted don't look that bad. Its the initial shock that scares everyone, but with time you'll get used to the idea and get busy doing what needs to be done. You are the same person you have always been and can still do all the things you enjoy.
Like starfish, i haven't limited what i do because of the osteo. I don't take unnecessary risk, but i wouldn't shy away from new things either, well, maybe downhill sking, i've never wanted to try that. Having osteo means you have a higher risk of breaking something, but it doesn't mean you will or ever will. There are people with low bone density who've never broke a bone and some with good strongs one who have. Its all luck of the draw.
Not falling is the key so work on your balance. Talk to a trainer or physical therapist who can give you an exercise routine (weight training) that will strengthen your body. Good strong muscles support the bones and help with density. Walking is one of the best ways to help the bones..take your kids for daily walks, they'll enjoy it and so will your body. 30 minutes a day is better than once a week, if you can fit it into your schedule.
I reccommend reading the book The Myth of Osteoporosis by Gillian Sanson. It has lots of good info that will both educate and help aleviate some of the fear. take care...phyllis
Like starfish, i haven't limited what i do because of the osteo. I don't take unnecessary risk, but i wouldn't shy away from new things either, well, maybe downhill sking, i've never wanted to try that. Having osteo means you have a higher risk of breaking something, but it doesn't mean you will or ever will. There are people with low bone density who've never broke a bone and some with good strongs one who have. Its all luck of the draw.
Not falling is the key so work on your balance. Talk to a trainer or physical therapist who can give you an exercise routine (weight training) that will strengthen your body. Good strong muscles support the bones and help with density. Walking is one of the best ways to help the bones..take your kids for daily walks, they'll enjoy it and so will your body. 30 minutes a day is better than once a week, if you can fit it into your schedule.
I reccommend reading the book The Myth of Osteoporosis by Gillian Sanson. It has lots of good info that will both educate and help aleviate some of the fear. take care...phyllis
PT6
05-21-2008, 01:17 PM
Make sure that you have your parathyroid (PTH) and calcium levels checked. Sometimes a benign tumor developes on one or more of the parathryroid glands (Located within the thyroid gland), Overproduction of PTH leaches calcium from the bones causing your blood calcium level to be abnormally high. If the tumor is located it can be removed with a simple outpatient surgery. Good luck - keep us posted.
Tim82
05-22-2008, 01:16 AM
Hi- I had my levels for androgens, PTH taken earlier this week and I will get my results tomorrow.
I will let you know what happens. Still no luck getting an appointment with endocrinologist!
I will let you know what happens. Still no luck getting an appointment with endocrinologist!
Tim82
05-23-2008, 05:49 AM
Ok Got my tests back yet
still dont understand what they mean:
PTH is Normal
Testosterone normal
SHBG low
DHEA low
Prolactin normal
Vitamin D slightly low
Any ideas about the above?
still dont understand what they mean:
PTH is Normal
Testosterone normal
SHBG low
DHEA low
Prolactin normal
Vitamin D slightly low
Any ideas about the above?
lenormandista
05-24-2008, 04:41 AM
Do you have a calcium level, either serum or ionised?
Shot in the dark, but osteoporosis isn't common at your age, and can be caused by hyperparathyroidism. Now - a lot of folks who are hyperpara have low Vitamin D (it's a physical self-defence mechanism that kicks in to keep your blood calcium lower). About 20% of people with hPTH have 'abnormally normal' levels of parathyroid hormone. I did. I should have been producing almost no parathormone with an elevated calcium, but my PTH kept coming back in normal range - though suspiciously on the high side.
So there's a possibility and I'd want to see serum and/or ionised calcium as well as the PTH numbers. If the PTH is 40 or 50 and you're in your 20s, that's still high. Most labs in America don't seem to take age into consideration in the range - usually anything from 10-65 is 'normal'. Mine was flagged as suspiciously high at 34 (which looks like dead-centre normal if you don't take age into consideration), and I'm in my 40s. Nonetheless, it held up my diagnosis for over five years - doctors don't see a lot of hyperpara, and the med school texts say it's high calcium and high PTH (out of range) at the same time. Not always true.
Or it may be something in a different direction entirely. I do think it's worth checking your calcium though, especially with osteoporosis and low Vitamin D.
I hope you find an answer soon. If it's hyperpara it's curable with surgery, and your osteoporosis will reverse once the tumour is out. Your scores really don't look that scary, and if it's just osteoporosis then you'll likely be fine. Mine were similar, and the only fractures I got were when two tonnes of granite fell on me - but that'd do it to anybody.
Take care.
Shot in the dark, but osteoporosis isn't common at your age, and can be caused by hyperparathyroidism. Now - a lot of folks who are hyperpara have low Vitamin D (it's a physical self-defence mechanism that kicks in to keep your blood calcium lower). About 20% of people with hPTH have 'abnormally normal' levels of parathyroid hormone. I did. I should have been producing almost no parathormone with an elevated calcium, but my PTH kept coming back in normal range - though suspiciously on the high side.
So there's a possibility and I'd want to see serum and/or ionised calcium as well as the PTH numbers. If the PTH is 40 or 50 and you're in your 20s, that's still high. Most labs in America don't seem to take age into consideration in the range - usually anything from 10-65 is 'normal'. Mine was flagged as suspiciously high at 34 (which looks like dead-centre normal if you don't take age into consideration), and I'm in my 40s. Nonetheless, it held up my diagnosis for over five years - doctors don't see a lot of hyperpara, and the med school texts say it's high calcium and high PTH (out of range) at the same time. Not always true.
Or it may be something in a different direction entirely. I do think it's worth checking your calcium though, especially with osteoporosis and low Vitamin D.
I hope you find an answer soon. If it's hyperpara it's curable with surgery, and your osteoporosis will reverse once the tumour is out. Your scores really don't look that scary, and if it's just osteoporosis then you'll likely be fine. Mine were similar, and the only fractures I got were when two tonnes of granite fell on me - but that'd do it to anybody.
Take care.
Tim82
05-24-2008, 07:23 AM
Hi THanks for your reply
PTH and calcium are both normal. calcium has been repeated several times over the past 3 years.
PTH was 2.7 pmol/L with the REF range (1.5-7.1) so definately low-normal range- makes hyperpara look unlikely.
Low androgens however
PTH and calcium are both normal. calcium has been repeated several times over the past 3 years.
PTH was 2.7 pmol/L with the REF range (1.5-7.1) so definately low-normal range- makes hyperpara look unlikely.
Low androgens however