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Possible hyperparathyroidism
A couple of weeks ago, I went to the ER for something else, and they discovered my calcium level was 12.5. This seemed to have everyone very concerned. My ionized calcium was 6.11. They gave me Lasix in the ER, and admitted me.
The next day, my PTH was 70 and my calcium was 9.4. The day after that, my ionized calcium was 5.26. On the fourth day it was 5.22, my total calcium was 9.3, and my vitamin D, 1,25 was 48. I was discharged and told to see an endocrinologist. The first appt. I can get is Oct. 3rd.
I am also an MS patient, with Gastroparesis and numerous other issues. I have been having a terrible time with nausea for the past several days that does not act like when my Gastroparesis flares up. Phenergan is very little help. The fatigue is off the charts.
I was also was diagnosed with severe osteoporosis in 2010, but nobody could figure out why, since I was on estrogen to PREVENT that. My Dexa scan at the time was -2.8 for the AP spine, -2.8 for total left and -2.5 for total right - worse than my mothers bones, and I was only 46 at that time. I have been taking Reclast since then.
My family physician did new labs this week. My calcium was 11.3, my PTH had gone up to 76, and my vitamin D 1, 25 was 114. My family phys. Is concerned about the calcium being this high still, so he put me on Lasix and potassium supplements for a week, with labs to be repeated at that time.
Is the Lasix a workable option until I see the endocrinologist, or is this something more concerning? Could the calcium level of 11.3 be causing or worsening the nausea and fatigue?
Any insight you may have would be greatly appreciated. Thank you for your time.....
The next day, my PTH was 70 and my calcium was 9.4. The day after that, my ionized calcium was 5.26. On the fourth day it was 5.22, my total calcium was 9.3, and my vitamin D, 1,25 was 48. I was discharged and told to see an endocrinologist. The first appt. I can get is Oct. 3rd.
I am also an MS patient, with Gastroparesis and numerous other issues. I have been having a terrible time with nausea for the past several days that does not act like when my Gastroparesis flares up. Phenergan is very little help. The fatigue is off the charts.
I was also was diagnosed with severe osteoporosis in 2010, but nobody could figure out why, since I was on estrogen to PREVENT that. My Dexa scan at the time was -2.8 for the AP spine, -2.8 for total left and -2.5 for total right - worse than my mothers bones, and I was only 46 at that time. I have been taking Reclast since then.
My family physician did new labs this week. My calcium was 11.3, my PTH had gone up to 76, and my vitamin D 1, 25 was 114. My family phys. Is concerned about the calcium being this high still, so he put me on Lasix and potassium supplements for a week, with labs to be repeated at that time.
Is the Lasix a workable option until I see the endocrinologist, or is this something more concerning? Could the calcium level of 11.3 be causing or worsening the nausea and fatigue?
Any insight you may have would be greatly appreciated. Thank you for your time.....
What can I do if the diseased parathyroid is located near the heart. Dont know of any doctor that has experience with this. Does anyone out there know?
The Grant Medical Center in Ohio performs minimally invasive parathyroid surgery. Grant Medical Center contact number listed: (614) 4-HEALTH (443-2584). You could ring to find the names of the surgeons who perform this surgery and check to see if they are on the American Association of Endocrine Surgeons list.
From the UCLA health system website article "Finding an Expert Parathyroid Surgeon"...
"Within the endocrine surgery community, a surgeon who performs 50 or more parathyroid operations per year is considered an expert parathyroid surgeon. These surgeons can be found through the American Association of Endocrine Surgeons (AAES)."
From the UCLA health system website article "Finding an Expert Parathyroid Surgeon"...
"Within the endocrine surgery community, a surgeon who performs 50 or more parathyroid operations per year is considered an expert parathyroid surgeon. These surgeons can be found through the American Association of Endocrine Surgeons (AAES)."
Thank you for responding so quickly! I began reading as much as I could about all of this as soon as I got out of the hospital, because this is all something I was totally unfamiliar with. I have had many issues due to the MS, but this came out of left field.
The first site I found was Dr. Norman's site :-). I have learned so much already, and I still have a lot more to explore. I am also reading info from other sites as well.
I know Dr. Norman and his team are very experienced and do the minimally invasive surgery, but I'm a long way from Florida. If it turns out that I would need surgery, do you know of a way to find good surgeons in other areas?
Thanks for any help.....
The first site I found was Dr. Norman's site :-). I have learned so much already, and I still have a lot more to explore. I am also reading info from other sites as well.
I know Dr. Norman and his team are very experienced and do the minimally invasive surgery, but I'm a long way from Florida. If it turns out that I would need surgery, do you know of a way to find good surgeons in other areas?
Thanks for any help.....
An excellent website to check out is the parathyroid website by the Norman Parathyroid Centre. Dr Norman is the most experienced parathyroid surgeon in the world.
Excerpts from the parathyroid website...
"You must be diagnosed with parathyroid disease (hyperparathyroidism) if your parathyroid hormone level is high and your calcium level is also high. The excess parathyroid hormone is the CAUSE of the high calcium. The high calcium is caused by a parathyroid tumor--nothing else will cause this."
"The 10 Parathyroid Rules of Norman"
1. There are no drugs that will make parathyroid disease better….None.
2. Nearly all parathyroid patients have symptoms; 95% know it--and feel bad. Most of the rest just don’t know it until the disease is fixed.
3. Symptoms of parathyroid disease do NOT correlate with the level of calcium in the blood. Many patients with only slightly elevated calcium and parathyroid hormone will have BAD symptoms and develop severe osteoporosis.
4. All patients with parathyroid disease have calcium levels and PTH levels that go up and down. Fluctuating levels of calcium are typical of parathyroid disease.
5. All patients with hyperparathyroidism will develop osteoporosis. ALL.
6. Taking Fosamax, Actonel, Boniva, or Reclast (etc) will NOT help bones that are being attacked by a bad parathyroid. These osteoporosis drugs have no place in the treatment of parathyroid disease.
7. Parathyroid disease will get worse with time in all patients. It will not stay the same, nor will it get better on its own.
8. There is only one treatment for parathyroid disease (hyperparathyroidism): Surgery
9. Nearly all parathyroid patients can be cured with a minimal operation. The days of big dangerous parathyroid surgery are gone (so don't let your surgeon perform one on you!).
10. The success rate and complication rate for parathyroid surgery is VERY dependent upon the surgeon’s experience."
Excerpts from the parathyroid website...
"You must be diagnosed with parathyroid disease (hyperparathyroidism) if your parathyroid hormone level is high and your calcium level is also high. The excess parathyroid hormone is the CAUSE of the high calcium. The high calcium is caused by a parathyroid tumor--nothing else will cause this."
"The 10 Parathyroid Rules of Norman"
1. There are no drugs that will make parathyroid disease better….None.
2. Nearly all parathyroid patients have symptoms; 95% know it--and feel bad. Most of the rest just don’t know it until the disease is fixed.
3. Symptoms of parathyroid disease do NOT correlate with the level of calcium in the blood. Many patients with only slightly elevated calcium and parathyroid hormone will have BAD symptoms and develop severe osteoporosis.
4. All patients with parathyroid disease have calcium levels and PTH levels that go up and down. Fluctuating levels of calcium are typical of parathyroid disease.
5. All patients with hyperparathyroidism will develop osteoporosis. ALL.
6. Taking Fosamax, Actonel, Boniva, or Reclast (etc) will NOT help bones that are being attacked by a bad parathyroid. These osteoporosis drugs have no place in the treatment of parathyroid disease.
7. Parathyroid disease will get worse with time in all patients. It will not stay the same, nor will it get better on its own.
8. There is only one treatment for parathyroid disease (hyperparathyroidism): Surgery
9. Nearly all parathyroid patients can be cured with a minimal operation. The days of big dangerous parathyroid surgery are gone (so don't let your surgeon perform one on you!).
10. The success rate and complication rate for parathyroid surgery is VERY dependent upon the surgeon’s experience."
I apologize, I thought I was posting in a capacity where I could ask a doctor. If anyone has information they would like to add though, please feel free. I'm just looking for answers or any other insights.
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