In January 2011 at age 55, I noticed the first strange symptoms, which would later turn out to be hyperparathyroidism. I had pain intermittently in my femurs. I had never had this before and it seemed like pain in the bone, not in the muscle. I also had pain in my right shinbone. I asked my husband, a research physician, and he had no idea what to make of those symptoms. I continued to have those pains, as well as joint pain in my knees, shoulders, and also lower backaches. (I was not too concerned or surprised about the knees and back, because I had been told I had mild to moderate osteoarthritis 5 years earlier)
In June 2011 our family went on a month long trip to Germany and Switzerland. I had been looking forward to the trip for a long time but had gotten quite depressed and anxious in May 2011 and had bouts of insomnia. The depression and insomnia were worse during the trip to Europe. I also had a severe bout of anxiety and a panic attack one night at Lake Constance.
On July 11, 2011. I had a physical exam with my PCP and routine blood tests. My serum calcium was above normal at 10.6 mg/dl (normal range: 8.7 to 10.1). I looked at previous calcium levels: January 2000, February 2003, September 2008, and July 2010 … all calcium levels were normal, in the 9s or low 10s. The serum calcium level in July 2010 was 9.2, so it had gone up quite a bit in a year’s time. I asked my husband what elevated calcium meant. He said it was connected with the parathyroid glands. However, his knowledge was limited, having had only one lecture on hyperparathyroidism in medical school in the early 1970s.
I googled “elevated calcium” and “hyperparathyroidism” and “parathyroid glands” and immediately found Dr. Norman’s website “Parathyroid.com”. I read the entire website in one evening and it was quite an education. Although I had heard of them and knew where they were located, I had no idea what parathyroid glands actually did. It was distressing to read that elevated calcium was most likely caused by a benign adenoma on one of the parathyroid glands and that the only cure for it was surgery. There was a list on the website of 21 symptoms of hyperparathyroidism, and I had 14 of them! Dr. Norman in Tampa had pioneered the MIRP (Minimally Invasive Radio-guided Parathyroidectomy) surgery. It was a quick, easy surgery to remove the adenoma in most cases, and then the patient was cured. Three things that were stressed over and over on the website: 1. Many doctors and endocrinologists do not make the diagnosis in a timely way, and the patients continue to suffer for years with all the symptoms. 2. It is very important to find an experienced surgeon who has done hundreds of these surgeries. Many surgeons only do 3 or 4 a year, and that is not enough experience. 3. It is very important that a surgeon looks at all 4 parathyroid glands during surgery to make sure there are no additional adenomas. It is much more difficult to do the surgery a second time because of scar tissue.
I asked my husband to read the website. He was a bit skeptical at first because finding a doctor on the Internet is not the normal way of doing things. How can one trust a surgeon who touts his method / technique above most other surgeons? But he also had an education from Dr. Norman’s website and was particularly struck by how many symptoms I had on the list of 21.
My PCP ordered a repeat serum calcium test, an ionized calcium test, and a PTH test, a 24-hour urine calcium test, and a DEXA scan. My serum calcium was 9.9 mg/dl (normal range: 8.7 to 10.1), ionized calcium 5.6 mg/dl (normal range: 4.5 to 5.6), and PTH 48 pg/ml (normal range: 15 to 65). I repeated these tests 4 days later and serum calcium was 10.3, ionized calcium was 5.4, and PTH was 27. The urine calcium test was normal, and the DEXA scan showed osteopenia. My PCP didn’t think I had hyperparathyroidism, but said I could consult an endocrinologist if I wanted to. We called a family friend who is an endocrinologist to ask his opinion. He thought that I had “mild” hyperparathyroidism and that I could watch and wait. He did think that the PTH of 48 and 27, although in the normal range, “was not suppressed” as it should be when calcium is above normal.
I saw an endocrinologist in mid-July 2011 and he ordered more tests: a chest x-ray to rule out lung cancer, a blood test to rule out multiple myeloma, and a blood test for parathyroid hormone-related protein, PTH-RP (which can be high if there is high calcium of malignancy). I had recently had a mammogram, which was negative. I hadn’t realized that breast cancer, lung cancer, and multiple myeloma were among the cancers that can cause high calcium in the blood. However, a patient is usually extremely ill with cancer before the calcium is elevated from the cancer. In fact, I have since learned that high blood calcium is virtually never caused by cancer unless the patient is near death from cancer and is in the hospital. People who are walking around and have high blood calcium do not have cancer. My endocrinologist also thought I had “mild” hyperparathyroidism but I didn’t need to have surgery urgently. I could go to UCSF and see a surgeon there for evaluation if I wanted to. I knew that a Sestamibi scan would often not find an adenoma and that scans were often false negative and false positive. The same was true of ultrasound scans and MRIs.
I continued to read parathyroid.com and realized that serum calcium often fluctuated in hyperparathyroidism, and one needed to have “trends over time”. Looking at all the graphs and charts on the website, I also realized that not everyone fell into a classic lab picture with both high calcium and high PTH. Some people had high calcium and normal PTH (normohormonal primary hyperarathyroidism); some had normal calcium and high PTH (normocalcemic primary hyperparathyroidism). In any case, calcium levels in the 10s in adults over 30 almost always indicated primary hyperparathyroidism, even if the PTH was normal. I found various Facebook support group pages and joined two of them. I started hearing about people’s experiences with diagnosis, surgery, and the outcome of surgery. My illness really was mild in comparison to so many people. I had no kidney stones, my bone pain wasn’t that extreme, I didn’t have a foggy brain, and I didn’t have heart disease. I began questioning whether I really even had “mild” hyperparathyroidism. I continued to have calcium and PTH tests every few months, and calcium continued to fluctuate around the mid 10s, and PTH was consistently low normal.
My symptoms, though mild, remained the same during that year, from July 2011 to August 2012: GERD, bone and joint pain, depression and anxiety. For a 2-month period I developed “trigger thumbs”, both thumbs locked into a bent position and they were very painful to straighten out. My doctors prescribed Prilosec for the GERD, antidepressants, and sleeping pills. These really didn’t do me much good, in retrospect, probably because of the elevated and fluctuating calcium levels.
In September 2012, I decided that with my “iffy” labs, I would submit my lab results to Norman Parathyroid Center in Tampa, Florida, and would see if they would consider me for surgery. I was very relieved when I had the telephone consultation with Dr. Douglas Politz at Norman Parathyroid Center in October 2012 and he told me that he was 95% certain that I had hyperparathyroidism and that I should schedule surgery. The waiting game was finally over and my continued doubts that I really had this condition were put to rest! I had various family commitments for the next few months so I scheduled surgery for February 22, 2013.
Why did I pursue surgery when my symptoms were still mild? I knew that my health would only deteriorate the longer I waited. I didn’t want to develop kidney stones, heart disease, or osteoporosis.
My surgery was a success. I had a parathyroid adenoma removed, another parathyroid gland removed which was slightly enlarged and was producing too much PTH, and a large thyroid nodule was taken out. The other two parathyroid glands were normal in size and were dormant. The surgery only took 20 minutes and was uneventful. Dr. Politz estimated that I had had the adenoma for at least 4 years. Dr. Politz also said that l had Hashimoto’s thyroiditis because of the way my thyroid gland looked and felt.
My recovery went smoothly and the one-inch scar healed very well and was hardly noticeable after 6 months. I only had symptoms of low calcium occasionally during my recovery: mild tingling in my face and in the extremities. I didn’t have a dramatic improvement of my symptoms because they were mild to begin with. The bone pain and back pain improved right away. It took longer for GERD, depression, and insomnia to get better, but now, almost two years later, all of those symptoms are better. I no longer am taking Prilosec, sleeping pills, or antidepressants.
I am very happy that I chose the Norman Parathyroid Center for my surgery. I am convinced that other surgeons wouldn’t have accepted me for surgery with my “non-classical” lab values, and I would have had to undergo many scans and tests which wouldn’t have shown anything. I doubt that other surgeons would have found my second bad parathyroid gland, and I would have had to have a second surgery down the road. I am very glad that I only had light anesthesia, no overnight hospital stay, and a minimal scar. I am grateful that Dr. Politz also diagnosed Hashimoto’s disease, because I am now taking replacement thyroxin to treat that condition.
This experience has taught me that it is vital to be one’s own advocate when it comes to one’s health and to do thorough research on all aspects of medical conditions one might have. Primary hyperparathyroidism is a common disease (at least 1% of all women will get it) and yet there is not much awareness about it among PCPs and endocrinologists. Diagnosis is especially difficult when it comes to normohormonal primary hyperparathyroidism (what I had) or normocalcemic primary hyperthyroidism, which are less common presentations.