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High-normal Ionized Ca, high PTH
Hi Dr. Lupo,
I am a 35 yr old female with osteoporosis (T-score is -3.8). I have many other symptoms of paraythyroid disease. I recently had a PTH test and it was 108 (range: 15-75). My serum ca was only 9.3 (range: 8.4-10.2), but my IONIZED calcium was 1.3 (range: 1.16-1.32). It was tested again the next week and it was 92 with an ionized ca of 1.28 and a serum ca of 9.7. I also have elevated ALP levels (132 with high range 120). My vit d 25 hydroxy is 23 (range: 30-80). My doc always tries to give Vit D because he says it is secondary HPT, but I cannot tolerate Vit D because my symptoms get worse (fatigue, etc) Since the Ionized ca was high normal and the PTH is so high, do you think this might be consistent with parathyroid disease? Is it possible to have PHPT with high normal ionized and normal ca? Any help is appreciated! Thanks!
I am a 35 yr old female with osteoporosis (T-score is -3.8). I have many other symptoms of paraythyroid disease. I recently had a PTH test and it was 108 (range: 15-75). My serum ca was only 9.3 (range: 8.4-10.2), but my IONIZED calcium was 1.3 (range: 1.16-1.32). It was tested again the next week and it was 92 with an ionized ca of 1.28 and a serum ca of 9.7. I also have elevated ALP levels (132 with high range 120). My vit d 25 hydroxy is 23 (range: 30-80). My doc always tries to give Vit D because he says it is secondary HPT, but I cannot tolerate Vit D because my symptoms get worse (fatigue, etc) Since the Ionized ca was high normal and the PTH is so high, do you think this might be consistent with parathyroid disease? Is it possible to have PHPT with high normal ionized and normal ca? Any help is appreciated! Thanks!
Best Answer
Hi, thanks for all the replies! Sorry for not updating sooner. I also had to bypass doctors and go straight to a surgeon. It is so frustrating that docs don't get it. I have seen lots of docs for various things over the years, and the docs I have seen about parathyroid disease have been the worst doctors I have every gone to. Two were really rude, abusive and every time I said anything about my history they just told me I was lying. So I did contact Dr. Norman (of parathyroid.com) in May 2011 and he feels I do have primary HPTH. I haven't gotten surgery yet though because I don't have the money to pay for my out of pocket max which is near $5000. I am hoping someday that I will be able to get it done. I am 37 now.
Good luck with your surgery AOLFAN! Let me know how it goes. There are some Facebook pages dedicated to patients talking about parathyroid stuff if you are all interested.
Good luck with your surgery AOLFAN! Let me know how it goes. There are some Facebook pages dedicated to patients talking about parathyroid stuff if you are all interested.
I have been going through the same thing for years and recently just decided enough was enough! I bypassed the endocrinologist and approached a surgeon. He is a bit overly cautious but is considering surgery. My GP's for the last few years just didn't seem to give a damn so I keep changing until I finally found one last week that knows about PHPT. If no one is going to help you - you have to fight until you find someone does, don't give up. As for the Men1, is it s a possibility so I would push for testing. I see this was posted a while ago, but I would really appreciate it if you could let me know what has happened since :)
Thank you so much Super Sally and Tamara for your replies. I as looking in the expert forum, and saw "post question" and I thought I posted there and then I saw it wasn't posted there. Oopsie!
But, thank you for taking the time to answer. It is frustrating because I have told all my current and past doctors about this, and they say it is totally fine except one who says it is secondary. One, is an NP and he thinks the pituitary gland regulates the parathyroid. So, he definitely isn't qualified. I have 2 recent ionized ca and PTH test that were a week apart. And, I have previous tests from other years, but they have not been diagnostic enough. But, I have struggled to get doctors to let me do more tests. I have Cushing's disease as well (diagnosed by an endo in LA which is out of state for me) and I had a tumor removed from my pit gland in August. So, I have even wondered if I have MEN 1 syndrome. I have been to Dr. Norman's site and it is very helpful. Do you think he would answer a email regarding this to see if he thinks I should get evaluated?
My case is so borderline because I only have high normal ionized and very normal serum Ca. That is what worries me in contacting Dr. Norman. One could argue that it is secondary hyperparathyroid because my intact PTH was 9.3, though my serum regular was 9.7 along with low vit D. I don't have absorption issues, but I do have some kidney symptoms like swelling in the morning in hands and face that doesn't go down for hours and water retention every day in my whole body for 2 years. And, changes in urination. But, Dr. Norman also says that if kidney function is off, it could be a symptoms of PHPT.
I do have thyroid problems, but it is due to central (pituitary) causes and my antibodies are fine. I have been on thyroid meds since 2002. And, I have tried to take only 1000 units of D3 per day and I still get the same side effects as I did with the larger doses. One of the side effects was fatigue so bad that I could barely function. Another strange thing that happened when I took Vit D, is my PTH did go down, but so did my calcium. A couple times it went below the range as a result of taking the vit d and I did have some tetany. I am pretty positive that it was from the D, b/c I stopped taking it and it went back up. Then, a few months later I tried taking D again and the same thing happened and I was able to prove the low calcium and pth with blood tests. In secondary HPT, I thought the goal was to raise the calcium. And, also I thought that the PTH levels should have an inverse relationship to calcium. So, that is strange, but doctors just tell me I am reading too much into it.
I have an appt with someone in May who is a parathyroid doc at a University. But, I wouldn't be surprised if he says I need vit D, and need Fosamax which I will never take. Sorry this was so long!
Thanks!!
But, thank you for taking the time to answer. It is frustrating because I have told all my current and past doctors about this, and they say it is totally fine except one who says it is secondary. One, is an NP and he thinks the pituitary gland regulates the parathyroid. So, he definitely isn't qualified. I have 2 recent ionized ca and PTH test that were a week apart. And, I have previous tests from other years, but they have not been diagnostic enough. But, I have struggled to get doctors to let me do more tests. I have Cushing's disease as well (diagnosed by an endo in LA which is out of state for me) and I had a tumor removed from my pit gland in August. So, I have even wondered if I have MEN 1 syndrome. I have been to Dr. Norman's site and it is very helpful. Do you think he would answer a email regarding this to see if he thinks I should get evaluated?
My case is so borderline because I only have high normal ionized and very normal serum Ca. That is what worries me in contacting Dr. Norman. One could argue that it is secondary hyperparathyroid because my intact PTH was 9.3, though my serum regular was 9.7 along with low vit D. I don't have absorption issues, but I do have some kidney symptoms like swelling in the morning in hands and face that doesn't go down for hours and water retention every day in my whole body for 2 years. And, changes in urination. But, Dr. Norman also says that if kidney function is off, it could be a symptoms of PHPT.
I do have thyroid problems, but it is due to central (pituitary) causes and my antibodies are fine. I have been on thyroid meds since 2002. And, I have tried to take only 1000 units of D3 per day and I still get the same side effects as I did with the larger doses. One of the side effects was fatigue so bad that I could barely function. Another strange thing that happened when I took Vit D, is my PTH did go down, but so did my calcium. A couple times it went below the range as a result of taking the vit d and I did have some tetany. I am pretty positive that it was from the D, b/c I stopped taking it and it went back up. Then, a few months later I tried taking D again and the same thing happened and I was able to prove the low calcium and pth with blood tests. In secondary HPT, I thought the goal was to raise the calcium. And, also I thought that the PTH levels should have an inverse relationship to calcium. So, that is strange, but doctors just tell me I am reading too much into it.
I have an appt with someone in May who is a parathyroid doc at a University. But, I wouldn't be surprised if he says I need vit D, and need Fosamax which I will never take. Sorry this was so long!
Thanks!!
Dr. Norman from www.parathyroid.com asked for me to get ionized/serum CA and PTH weekly for three weeks.
I consulted with him. It turns out I have Hashimoto's. My low D was causing my PTH and calcium to go up slightly. Hashimoto's symtpoms are VERY similar to hyperparathryoidism.
While you are getting your calcium tests, request the TPOab and Tgab to rule out Hashimoto's. I had a hard time with the super D gel pills, which had confirmed, to me, that I had parathyroid disease. Well, now I know that I just had a reaction to those pills and I do not have parathryoid disease. I do sunshine and liquid D now.
:) Tamra
I consulted with him. It turns out I have Hashimoto's. My low D was causing my PTH and calcium to go up slightly. Hashimoto's symtpoms are VERY similar to hyperparathryoidism.
While you are getting your calcium tests, request the TPOab and Tgab to rule out Hashimoto's. I had a hard time with the super D gel pills, which had confirmed, to me, that I had parathyroid disease. Well, now I know that I just had a reaction to those pills and I do not have parathryoid disease. I do sunshine and liquid D now.
:) Tamra
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this is not Dr. Lupo's forum. This is a patient forum.
From what you say you definitely need to be thoroughly investigated for primary hyperparathyroid. This is treatable with surgery to remove the affected parathryoid. Failure of your doctor to address this is serious.
Please get second and even third opinion if necessary.
Low vitamin D is your body's way to help balance the high PTH and to keep the calcium normal (though it is high normal).
Have they done a 24-hr urine calcium test? That should be done.
Your osteoporosis is likely resulted from the hyperparathryoid. IF the hyperparathyroid can be corrected most likely the osteoporosis can be reversed.
Go to parathyroid.com, which has information, including appropriate testing. If you are in the US maybe you should consider going to their clinic. Would definitely be worth it to get properly treated.
Don't give up on this. YOu are too young not to have this properly addressed.
Let me know how you go.