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.
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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.
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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.
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.
If you haven't seen an endocrinologist yet, maybe you should ask for a referral. It sounds like you might be helped by a more thorough investigation of the parathyroid. Just a thought for your consideration.
Will you keep in touch and let me know how you are doing?
Yes, I have dealt with elevated PTH. One of the parathyroid glands was enlarged and was causing the problem. I had surgery in September, 2018 to remove the gland which was 750mg as opposed to the normal 15-30mg. I developed osteopenia as a result of the parathyroid gland. I also had excruciating bone pain and fatigue which impacted my Fibromyalgia tremendously. When I awoke from the surgery the first thing I noticed was that the bone pain was gone. I recovered quickly overall but it did take me several weeks to regain my normal voice.
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?
So were you diagnosed with Secondary Hyperparathyroidism?
Who did your Parathyroid Surgery?
Dr. Villaret at Charlotte Eye Ear Nose and Throat in Charlotte, NC. He came highly recommended by my primary care doctor and my endocrinologist.
All of you: Go see a licensed holistic doctor, nutritionist, or health care practioner. Diet is behind osteopenia and osteoporosis, and only THEN consider surgery AFTER trying tuning up your fuel intake first!
My semi-vegetarian health nut (yoga, bicycling) sun-screen wearing sister in MN at 40 yrs old had her Vit D level at 8 & severe osteoporosis. She broke bones every time she fell or tripped. Her doctors gave her 50k IU D2 weekly. Surgeons removed 3-1/2 parathyroid glands. She still had issues.
Her doctor's medical practice finally added a nutritionist to their staff. My sister then found out it was all caused by a mineral and vitamin imbalance, and NOT her parathyroids suddenly going wonky.
Calcium: Magnesium: Phosphorous HAS to be in a 2:1:1 ratio to build bones, and my sister had too much phosphorous and too little magnesium.
Almost all Americans have high calcium (and excess belly fat) due to our love of cheese, milk, yogurt, and ice cream.
Eliminate all dairy for a few months and see what happens (….besides your post nasal drip and a few lbs going away). Use Avocodo or Olive Oil instead of butter whenever possible. It is worth a try.
Synthetic D2 is poorly converted in many older people (due to their low stomach acid), and so my sister switched to (natural) 5000 IU Vit D3 a.m &pm, got outside to garden more (and tan), then Vit D numbers started to climb. Now 57, she is not 100%, but doing a lot better than when she was 40.
If you have digestion issues (or a missing gallbladder), your absorption of fats, proteins, certain minerals, and fat-soluble vitamins (like A, E, D, etc.) will be poor. You may have acid reflux and burp a lot (SIBO). It is another good reason to consult a nutritionist, and increase your celery and cucumber intake (for their chloride and special electrolytes).
Vit D is actually a hormone complex with little known about it, so chemical precursors like D2 are a poor approximation. Keep a light natural tan, but no burning. Tan arms is not enough.
…Just remember our ancestors wore loin cloths (if that) all summer!
Vit K2 is what drives calcium into the bones and keeps it out of the soft tissues, causing osteoarthritis, cataracts, hardened heart valves, etc. K2 comes from fermented foods, which are eaten daily in most European and Asian cultures, but not in the U.S.
LifeExtension did a lot of research on K2, and won in court against the FDA after they got caught publishing 'health claims' for an essential vitamin. (Duh!).
Vit K2 is different than K1, which helps with blood clotting.
Statins block Vit K , and just look at all the listed side effects. Statins also increase all-cause mortality; just ask your prescribing doctor if they have ever read the actual original 3rd party research. Unless they are somehow medically necessary, any statins should be discontinued with your doctor's help.
Instead, keep triglyceride (fat globules in the blood) levels low (
Thank you for the information. It has been very informative.
I've just received the results of my follow-up tests for intact PTH and blood calcium. The initial tests were done in late November 2018. Calcium continues normal at 9.2 but my PTH decreased from 82 to 59. While 59 is within normal limits, I've read (bless you/curse you, internet) that wonky readings indicate abnormality, not just a one-off high reading. I see my doctor on Tuesday and will post again after that.
Another thing – does anyone else have bone/muscle/joint pain with your elevated PTH? For the last year I've had miscellaneous aches that I can't account for. I'm going to ask the doctor about these, but am curious about personal experience from this group. Thanks in advance.
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