Mayo Clinic Connect
After I had a nonfasting blood test yesterday my doctor tells me that I have elevated PTH. Is anyone else dealing with PTH and if so would appreciate learning about their experience and how it was treated or is untreatable. Thank you for sharing.
Yes, I have elevated PTH as well. Here is a link to a Mayo website about elevated PTH, please click on the link to get more information,
As a result of the PTH being elevated, I also have osteopenia. Do you have bone density problems or kidney stones as well?
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Thank you for the information. I have had osteoporsis for many years which was once controlled by medication but it caused digestive problems so don't take anything to combat it.
The latest primary care doctor (I have had four different ones in the past ten years who either dropped out of the profession or left the clinic) who is treating me is also a geriatric specialist and at the first visit with him he ordered the first test I have ever had for PTH. The followup test a couple of months later showed the elevated parathyroid hormone.
I am now taking 1 weekly 50,000 IU vitamin D2 and 1 daily 2000 IU D3 vitamin as the latest test results shows a D reading of 21.8 ng/mi.
How is your doctor treating the PTH and what is the prognosis?
Liked by Teresa, Volunteer Mentor
I too have elevated PTH but my calcium levels are normal. Apparently this is called normocalcemic hyperparathyroidism. My primary care doc is an endocrinologist and after a bone density test showed that my bones were losing density (despite doing a lot of weight bearing exercise), he wanted to do the blood test and the 24 hour urine catch which showed the elevated (but not scary) PTH and normal calcium. That was at the end of November and I'm to have a retest early February. A parathyroidectomy may be in my future. I've been scouring the internet to find info about hyperparathyroidism and surgery seems not unusual, even with normal calcium. BTW my D3 is normal.
@ladybugmg It has been a while since you last posted. How are doing? I hope your Vitamin D levels have improved
I would like to welcome you to Mayo Connect. I found your story about normocalcemic hyperparathyroidism to be very interesting as it parallels a lot of my problems with elevated PTH, (sometimes) elevated calcium levels (sometimes) and continual low bone mass despite treatment with meds. My D3 is below normal and just doesn't go up no matter how much Vit D3 supplements that I take.
While I had never heard of normocalcemic hyperparathyroidism, I did a little investigation online and found this information from the National Institute of Health. I found it very interesting and I thought that you would as well. Here is the link, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564219/.
This seems to be a relatively new diagnosis in that it does not fit the primary hyperparathyroidism.
I would certainly be interested in hearing how you are following up on this matter. Will you post again?
The doctor is still experimenting using D2 and now D3 to see if this makes a difference. The D is now up to 27 and we are hoping for at least 30, the absolute minimum. My calcium is still a little high. I wonder if fatigue is associated with PTH.
I saw that nih piece. I've been collecting info since my diagnosis in early December. (I like to be as informed as possible when talking to my doctor, which may drive him nuts, but makes me feel like I'm a collaborator in my medical care.) I will post after my February retests and doctor visit.
I'm sure your doctors will get used to you being prepared. My doctors are now disappointed if I don't have a list of questions and a packet of research that I've done. I know that they are busy people and can't take time to research everything. So keep advocating for yourself. It is important to you and your medical team as well!
I look forward to your posting again with an update.
That is interesting that your doctor is experimenting with D2 and D3. I have just been using D3. I have an appointment with my endocrinologist later this month and I may ask about that. I cannot get my D level above 17, no matter how much D3 supplement I take.
I may ask for some more testing on the Parathyroid. Have you had any nuclear tests on the Parathyroid?
My tests have just been included in the overall blood testing that the primary care doctor has been doing every four momths. The mg/dl calcium is not signifigantly elevated at 10.4 By the way, he has had surgery for the condition and showed me the scar. I have had edema in my ankles recently and now have to wear compression socks during the day which seems to reduce the swelling.
High PTH is caused by your parathyroid gland releasing too much PTH. PTH and calcium work together to keep each other in balance. If the PTH is high, the calcium should be very low. Or vice versa. If both are high or even at the high normal, you need to get it checked out. You should get the both the PTH and calcium tested in the same blood draw. Sometimes if the Vit D is low, it will cause the calcium to be high. My calcium ranged from 9.9 – 11.2 over 5 years before I was diagnosed with Hyperparathyroidism. They didn't check my PTH until my calcium was finally flagged as high. The only "cure" for this is to have the parathyroid gland removed that has the adenoma (tumor) on it. You need a surgeon who performs at least 50 of these a year as it is highly specialized. There are many symptoms of Hyperparathyroidism but most can be blamed on something else. I had about half of them. I went to Mayo in Rochester for final diagnosis, surgery consult and surgery. I was VERY happy with the drs and treatment. They ran all the necessary tests within 24 hours that confirmed the diagnosis. They range from blood tests, 24 hour urine, bone density scan and a nuclear scan. It was an outpatient surgery. I was in the hospital for 6 hours total. They removed one adenoma. They use interoperative PTH testing and that is how they know that the correct parathyroid gland was removed. A person has 4 glands and they can all be affected. They have to leave 1/2 of one. In my case, my PTH dropped from 77 to 15 so they knew the one gland that showed up on the nuclear scan was the only one. I started to feel better immediately, my symptoms all went away within a week. I was lucky because I had very limited bone density loss and when I get it rechecked, they feel it will be normal again. I also did not have any kidney stones which are very common with this disease. Good luck.
Liked by Teresa, Volunteer Mentor, crankyyankee
I see that this is your first post on Mayo Connect and I would like to welcome you. I so appreciate all of the first-hand information you provided about your experience with hyperparathyroidism. It sounds like your surgery went well and that you are feeling much better now.
How did they know to remove just "one adenoma." Was that from the nuclear scan?
Very informative and helpful. Thanks.
In my case, the adenoma showed up on the nuclear scan. So they knew there was one minimum. When they checked the PTH at 15 minutes after it was removed and 30 minutes, it kept dropping so there was a high chance that there was only one. Some surgeons will look at all 4 to see if there are others that didn't show on the scan. The risk with that is causing unnecessary scar tissue. There are 2 schools of thought and I trusted my surgeon that he thought it was best to only check the one that showed on the scan. There are instances when they don't show up and then they operate and "go fishing".
If your calcium is high and your PTH is high, there is only one cause. Hyperparathyroidism. There is only one cure, surgery. There are no medications that will make you better. None.
When I talked to the Endo at Mayo, I expressed my frustration with my PCP at not catching it for many years. He said it is a common belief for PCPs to want to wait for the calcium to go higher. With hyperparathyroidism, there is no "higher". For women above 55, anything above 10.0 is considered high. The labs most times will have a 8.5 – 10.3 reference range. For sure, anything above the reference range is "High" and you need to have your PTH and Calcium tested in the same blood draw. That is also very important. In a 3 month period, my calcium ranged from 9.9 – 11.3.
When you have the adenoma removed, you are cured. You no longer have hyperparathyroidism. I felt SO bad before the surgery. I lost 40 pounds, I had no appetite, nausea, brain fog, extreme bone pain, was tired, thirsty, frequent urination, hair loss, really cranky, anxious, the symptoms just go on and on. My husband noticed a difference when I came up from the recovery room. I ate a full supper that night and it tasted good. I was back on the treadmill 4 days later and walked several miles. I was the energizer bunny.
My recommendation for others is to watch their calcium. If it is high, above 10, ask for the PTH and calcium to be tested in the same draw. Don't wait. They may want to check the Vit D. My PCP wanted to check that and have me on Vit D supplements if needed. When my Vit D was tested at Mayo, it was normal so that wasn't a factor. I did change to a younger PCP and he is very knowledgeable about this. Other younger doctors that I have encountered have been also. So I think the medical schools are doing a better job in educating their students. Hyperparathyroidism is actually pretty common and very much undiagnosed.
I have done tons of research on this. I am by no means an expert, but I have lived through the experience and am on the "Other side". Please ask any questions and I will do my best to answer them. Mayo Clinic does a very good job with their online explanation of it. It was the first place I looked at when I had my initial diagnosis.
Liked by Teresa, Volunteer Mentor, judyvv1936
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