Osteoporosis, elevated calcium in urine, is a 2nd opinion in order?
October 15, 2014 7:56 AM Subscribe
I have on-going osteoporosis and a recent test showed I also have elevated calcium in my urine. My doctor didn't inform me about the calcium result or make any recommendations for further testing or treatment. Should I find a new doctor based on this, and if so, what specialty?
Hi all, first off I know YANMD, I guess I'm mostly trying to figure out who should be MD. I am a 55 y.o. menopausal woman whose bone mineral density has been decreasing steadily for the last 10 years. It went down 8% in the last 2 years, and is now -3.0 in the spine. -2.5 and below is the line for full blown osteoporosis so I am well into the osteoporotic range. At the urging of my gynecologist, I saw a well-regarded endocrinologist to figure out the best way to deal with this. She ordered a lot of blood work and a 24-hour urine calcium/creatinine test to rule out any cause other than low estrogen for the osteoporosis. She gave me a prescription for Evista to treat the osteoporosis because I have had bad reactions to bisphosphonates in the past.
So last week I received a form letter from her, indicating that all the blood work was normal -- for the urine test I couldn't understand her hand-written note, it was something like "24hr ur ca 466 > 250". There were no instructions for follow-up except to come back in a year. Yesterday I got my actual results from the lab and it shows that my urine calcium result is elevated at 466 where the normal range is 35-250. It also says the calcium/creatinine ratio is elevated at 428, where normal is 30-275. I called the doctor's office yesterday and they said they would ask her to give me a call to explain the urine results, but so far she has not called. I should also add here that in the past I have had mildly elevated blood calcium results and PTH results, although the most recent results were both within normal limits (barely).
My question is whether the fact that the endocrinologist did not bother to call to inform me of the hypercalciuria and discuss the implications of this result with me is an indicator that I should see a different doctor. And if so, what kind? Urologist? I'm afraid I may be at risk of having a kidney stone and I really would rather avoid that kind of pain if at all possible. It seems like something should be done to determine why I have so much calcium in my urine, especially since I don't take calcium supplements and don't eat an excessive amount of dairy products, but I have no idea what that might be. Obviously I will give the doctor another day or two to call me and if she doesn't I will make another attempt, but in the meantime I just wondered what the hivemind would do if in my shoes.
Hi all, first off I know YANMD, I guess I'm mostly trying to figure out who should be MD. I am a 55 y.o. menopausal woman whose bone mineral density has been decreasing steadily for the last 10 years. It went down 8% in the last 2 years, and is now -3.0 in the spine. -2.5 and below is the line for full blown osteoporosis so I am well into the osteoporotic range. At the urging of my gynecologist, I saw a well-regarded endocrinologist to figure out the best way to deal with this. She ordered a lot of blood work and a 24-hour urine calcium/creatinine test to rule out any cause other than low estrogen for the osteoporosis. She gave me a prescription for Evista to treat the osteoporosis because I have had bad reactions to bisphosphonates in the past.
So last week I received a form letter from her, indicating that all the blood work was normal -- for the urine test I couldn't understand her hand-written note, it was something like "24hr ur ca 466 > 250". There were no instructions for follow-up except to come back in a year. Yesterday I got my actual results from the lab and it shows that my urine calcium result is elevated at 466 where the normal range is 35-250. It also says the calcium/creatinine ratio is elevated at 428, where normal is 30-275. I called the doctor's office yesterday and they said they would ask her to give me a call to explain the urine results, but so far she has not called. I should also add here that in the past I have had mildly elevated blood calcium results and PTH results, although the most recent results were both within normal limits (barely).
My question is whether the fact that the endocrinologist did not bother to call to inform me of the hypercalciuria and discuss the implications of this result with me is an indicator that I should see a different doctor. And if so, what kind? Urologist? I'm afraid I may be at risk of having a kidney stone and I really would rather avoid that kind of pain if at all possible. It seems like something should be done to determine why I have so much calcium in my urine, especially since I don't take calcium supplements and don't eat an excessive amount of dairy products, but I have no idea what that might be. Obviously I will give the doctor another day or two to call me and if she doesn't I will make another attempt, but in the meantime I just wondered what the hivemind would do if in my shoes.
Best answer: I would wait to see what the doctor says when she returns your call. If she neglected to call you because she didn't think it was significant because of your normal-range blood levels or that it might resolve itself with use of the Evista, that's one thing. If she didn't call because missed it due to carelessness, that's another.
posted by eldiem at 8:56 AM on October 15, 2014 [1 favorite]
posted by eldiem at 8:56 AM on October 15, 2014 [1 favorite]
Anecdata: my mom had this, they blew it off like your MD is, and it turned out she had a problem with her parathyroid. She was a nutcase (seriously) for a whole year til they figured it out. Then she had a surgery for it, and she was better in about 3 days.
posted by small_ruminant at 9:11 AM on October 15, 2014 [1 favorite]
posted by small_ruminant at 9:11 AM on October 15, 2014 [1 favorite]
Best answer: Getting a second opinion is always an option, and that may lead you to a specialist who you can better trust. An endocrinologist is the person to see, and there are those who specialize in osteoporosis.
That said, I would also consider getting the paid tracking app Vitamin-D-Pro, or something like it (but there isn't much like it. other than Calcium Pro, an older app by the same group), since some of the things that you said sent me there when I was in a similar situation--I was extremely worried about getting kidney stones because of elevated calcium levels, and if I had not invested in that app and talked with the creators of it, the Norman Parathyroid Center, I would have had them by now. It calculates various risks for you and plots them on a chart for you (including osteoporosis, vitamin D deficiency and hyperparathyroidism, as well as PTH and blood calcium). At the very least, check out the link that small_ruminant posted and you'll be much better informed about whether that app is a good fit for you.
Advocate for yourself, make sure that you are comfortable with the answers that you get from whatever doctors you have. If you feel like your doctor is brushing you off, get another doctor.
posted by the letter at 9:33 AM on October 15, 2014 [3 favorites]
That said, I would also consider getting the paid tracking app Vitamin-D-Pro, or something like it (but there isn't much like it. other than Calcium Pro, an older app by the same group), since some of the things that you said sent me there when I was in a similar situation--I was extremely worried about getting kidney stones because of elevated calcium levels, and if I had not invested in that app and talked with the creators of it, the Norman Parathyroid Center, I would have had them by now. It calculates various risks for you and plots them on a chart for you (including osteoporosis, vitamin D deficiency and hyperparathyroidism, as well as PTH and blood calcium). At the very least, check out the link that small_ruminant posted and you'll be much better informed about whether that app is a good fit for you.
Advocate for yourself, make sure that you are comfortable with the answers that you get from whatever doctors you have. If you feel like your doctor is brushing you off, get another doctor.
posted by the letter at 9:33 AM on October 15, 2014 [3 favorites]
Best answer: I think I would discuss it with the endocrinologist before running for the door. It may for example be the case that you are already doing all the right things about this, and monitoring is the next most prudent step. Or maybe not. Hard to know. Incidentally, hypercalciuria in someone with a predisposition for hyperparathyroid may often still reflect inappropriately active parathyroid function even if the calcium and PTH levels are within normal limits (particularly if they are barely within normal limits). There are ways to confirm this... This falls into the overlapping territory of an endocrinologist, nephrologist, and (especially if you have stones) urologist.
posted by drpynchon at 10:00 AM on October 15, 2014 [1 favorite]
posted by drpynchon at 10:00 AM on October 15, 2014 [1 favorite]
Response by poster: Thank you for that link, the letter, I downloaded the Vitamin-D Pro app, plugged my numbers in from back to 2011 and the analysis shows I am squarely in the "likely to have primary hyperparathyroidism" group. If anyone's interested, my ionized calcium was high in 2012 at 5.64, my highest serum calcium was 10.6, and my highest PTH was 65. My vitamin D is normal currently at 44 but has been as low as 30 in the past (pre-supplementation). I also have some of the symptoms mentioned on the parathyroid.com site such as depression, fatigue, and musculoskeletal pain. This, combined with the hypercalciuria (there was nowhere to enter urine calcium results in the app) would seem to indicate the need for further investigation at least. I will wait and see what the endocrinologist says when she gets back to me.
posted by miaou at 10:35 AM on October 15, 2014 [1 favorite]
posted by miaou at 10:35 AM on October 15, 2014 [1 favorite]
My mother has a similar issue and recently was diagnosed with hyperparathyroidism and is seeing an endocrinologist as well. They did recommend surgery if the symptoms persist but in the mean time, she is on a monitoring schedule as well with labs every 6 months.
This may be something she will explain to you as not a huge concern for you, as of yet, but something they will keep track of.
posted by Sara_NOT_Sarah at 12:22 PM on October 15, 2014
This may be something she will explain to you as not a huge concern for you, as of yet, but something they will keep track of.
posted by Sara_NOT_Sarah at 12:22 PM on October 15, 2014
Response by poster: Well, she called me back and seemed completely unconcerned about the high urine calcium, saying that since my most recent PTH and serum calcium were within normal limits, there was nothing to indicate a parathyroid issue and that some people just have lots of calcium in their urine for no apparent reason. Also since I've never had a kidney stone she feels there's no action needed at this time. If I want I can try to avoid foods high in oxalates and of course make sure to drink plenty of water to decrease my kidney stone risk. Basically the answer was, all your other tests were normal therefore this is not an issue. I don't feel particularly comforted by that response but don't know enough about all this to argue with her so I accepted her explanation and will have to consider whether this is worth pursuing further with a different specialist. I'm open to any further advice or comments anyone may wish to offer.
posted by miaou at 12:47 PM on October 15, 2014 [1 favorite]
posted by miaou at 12:47 PM on October 15, 2014 [1 favorite]
A second opinion is definitely not a bad idea. Also, maybe even talking to your primary care provider about the physician and her findings and see if they recommend a second opinion as well.
posted by Sara_NOT_Sarah at 1:45 PM on October 15, 2014 [1 favorite]
posted by Sara_NOT_Sarah at 1:45 PM on October 15, 2014 [1 favorite]
Go get a second opinion. That's my advice based on your posting and my experience. Your doc's advice may be totally reasonable and you may still have a problem. So talk to your GP then go find a specialist you really like so if s/he says it's not a problem you'll believe it and relax. Peace of mind is a wonderful thing.
posted by Bella Donna at 2:06 PM on October 15, 2014 [1 favorite]
posted by Bella Donna at 2:06 PM on October 15, 2014 [1 favorite]
If it is hyperparathyroidism as a root cause, which it might not be, I would highly recommend getting it dealt with sooner, rather than later. The longer you have it, the more your bones will be sapped, and more. Monitoring, when you have been diagnosed, is, IMO, insane, and is something that needlessly prolongs suffering and increases health risks. Also, as was the case for me, and as drpynchon noted above, you may have this with many of your labs sitting within, well within, normal range!
As far as urine calcium levels go with hyperparathyroidism, they are not part of the current clinical diagnostic criteria, IIRC; it's known that they are all over the map, but since yours are so high, it does beg to reason that something is causing it. The apps, to my understanding, are based on data from tens of thousands of people that they, themselves, have treated surgically, the proof of hyperparathyroidism being tumorous parathyroid glands.
What I did was to read up on the topic. Again, I found NPC to be an amazing resource. They have videos there that are quite easy to follow. I would urge you to read their page on elevated calcium levels, since you say that you have one high reading already. Despite having a specialist endocrinologist myself, I got a second opinion from them (Dr. Norman's team), because I felt so terrible all the time, and I was unsure about how long "monitoring" was going to take, and what the toll would be on my body and mind in the meantime. Though it was expensive for me to do so, I found a consult with them to be worth every penny. If this is what you have, I would push as hard as you can to get it treated as soon as you can, in truth. Research surgeons, doctors, do what it takes. Look for minimally invasive surgeons. (memail me for further proselytizing and info)
Generally, I found The Whole Body Approach to Osteoporosis to be another great source of information, though it is quite detailed and can get technical. The reviews recommend against the Kindle version. It gives you a much better idea about what kinds of tests and treatments for osteo are useful, and why.
It is certainly possible that this is not what is causing your osteo, but when I was in your shoes, I wanted to make sure that this wasn't it, because hyperparathyroidism is treatable! In a similar situation to your own, I got a second opinion, and hearing this additional information, I would definitely hope that you would do so, too.
posted by the letter at 4:21 PM on October 15, 2014 [1 favorite]
As far as urine calcium levels go with hyperparathyroidism, they are not part of the current clinical diagnostic criteria, IIRC; it's known that they are all over the map, but since yours are so high, it does beg to reason that something is causing it. The apps, to my understanding, are based on data from tens of thousands of people that they, themselves, have treated surgically, the proof of hyperparathyroidism being tumorous parathyroid glands.
What I did was to read up on the topic. Again, I found NPC to be an amazing resource. They have videos there that are quite easy to follow. I would urge you to read their page on elevated calcium levels, since you say that you have one high reading already. Despite having a specialist endocrinologist myself, I got a second opinion from them (Dr. Norman's team), because I felt so terrible all the time, and I was unsure about how long "monitoring" was going to take, and what the toll would be on my body and mind in the meantime. Though it was expensive for me to do so, I found a consult with them to be worth every penny. If this is what you have, I would push as hard as you can to get it treated as soon as you can, in truth. Research surgeons, doctors, do what it takes. Look for minimally invasive surgeons. (memail me for further proselytizing and info)
Generally, I found The Whole Body Approach to Osteoporosis to be another great source of information, though it is quite detailed and can get technical. The reviews recommend against the Kindle version. It gives you a much better idea about what kinds of tests and treatments for osteo are useful, and why.
It is certainly possible that this is not what is causing your osteo, but when I was in your shoes, I wanted to make sure that this wasn't it, because hyperparathyroidism is treatable! In a similar situation to your own, I got a second opinion, and hearing this additional information, I would definitely hope that you would do so, too.
posted by the letter at 4:21 PM on October 15, 2014 [1 favorite]
Best answer: Assuming the serum calcium and parathyroid is normal, I would stop worrying about it.
Hypercalciuria is fairly common (up to 10% of the population) but under-diagnosed because it is not usually tested for except in certain conditions.
There is a specific reason that urine calcium was tested; to rule out famlial hypocalciuric hypercalcaemia (FHH) in the event that your serum calcium happened to be high. The clinical picture would then be that of high serum calcium and low urine calcium.
To put everything into perspective:
High serum calcium / high urine calcium = maybe pathological depending on other lab results
High serum calcium / low urine calcium = maybe FHH
Normal serum calcium / normal phosphate / normal PTH / high urine calcium = nothing to worry about other than slightly increased risk of stones
posted by ianK at 10:29 PM on October 17, 2014
Hypercalciuria is fairly common (up to 10% of the population) but under-diagnosed because it is not usually tested for except in certain conditions.
There is a specific reason that urine calcium was tested; to rule out famlial hypocalciuric hypercalcaemia (FHH) in the event that your serum calcium happened to be high. The clinical picture would then be that of high serum calcium and low urine calcium.
To put everything into perspective:
High serum calcium / high urine calcium = maybe pathological depending on other lab results
High serum calcium / low urine calcium = maybe FHH
Normal serum calcium / normal phosphate / normal PTH / high urine calcium = nothing to worry about other than slightly increased risk of stones
posted by ianK at 10:29 PM on October 17, 2014
This thread is closed to new comments.
posted by mysterious_stranger at 8:38 AM on October 15, 2014 [1 favorite]