Meet Guest Blogger Sandi Putnam – Sandi was born and raised in Michigan, became a medical technologist in 1960 and worked at that for 35 years. She is married with a daughter and a grandson in Texas and lives with her husband in Tucson, Arizona. During her husband’s 25 year career with Eastman Kodak in professional markets, the family relocated around the USA which provided the couple and their daughter, many enriching experiences. In a twenty year time frame that she was able to do so, Sandi kept horses, enjoyed horseback riding and served as a mounted patrol volunteer in a nearby national park for a number of years. She continues to enjoy swimming, walking, yoga, Curves training, sewing and gardening as well as managing a household and an active life of retirement with her husband, Doug.
On April 4, 2017, four Tucson women who had been to Tampa in a ten month time frame went out for lunch to celebrate my one year surgery anniversary. I was the first of us four to have surgery at Norman Parathyroid Center exactly one year to the day. Through my friendships with two of them for a number of years, I was able to help affirm their decisions to choose NPC. Three of us are retired medical professionals and the last, Betty who was tenaciously looking for answers to her health problems.
This fourth person came on board when she heard about the Parathyroid Peeps meet up in Tucson in November 2016, a courtesy event hosted by Barbara, Joyce and Sophie at their hotel, which preceded their second annual workshop at Miraval with Dr. Deva Boone, who arrived a few days later. Later that same week, I was privileged to be on the program with Dr Boone as a presenter from a patient’s perspective.
Here is our overview. All four of us had surgery in Tampa between April 2016 and February 2017. Our cumulative years of going undiagnosed are about 50 years. None of our primary doctors or specialists were as convinced as we were of having pHPT, after each of us independently, had spent a good deal of time on the NPC web site. For the most part, doctors around the world do not understand that anyone over age 30 should not have a calcium over 10.0. This is because of their reliance on our laboratories which report a reference range that goes into the mid 10’s, so we were all lumped together and considered ‘normal.’ Even those of us whose calcium levels were in the 11’s, apparently didn’t raise any red flags.
One woman was refused a referral to an endocrinologist for a workup, so like the rest of us, she downloaded the Calcium Pro app to help move her forward. We are only a few of the countless who are self-diagnosed and ultimately confirmed through consults with NPC. Only one of us had the classic elevated serum calcium and elevated PTH, the others had only elevated calcium. This made it all the more difficult to prove that we needed surgery. Between us, we had ALL of the symptoms on the NPC chart. We all had osteoporosis for which bone drugs were indicated, at least to our doctors. Between us, we believe we interacted with all 7 of the NPC surgeons on our cases. Our experiences with the rest of the highly professional and skilled staff at NPC were exceptional and courteous at every step. Each one of us had a procedure that lasted 30 minutes or less with incisions no longer than 1.5 inches. We were back at our hotels within a few hours of arriving at the center for our operations. Today, our scars are all remarkably minimal and continue to fade away.
Early on, each gave consideration to having procedures done locally, but independently we earnestly believed that the most successful outcomes would be at the hands of the surgical team at NPC. Our convictions rang true, as each one, in turn, returned home. No facility does as many surgeries on a daily basis. At NPC we had minimally invasive radio-guided surgeries. However, the probe was not used to locate the adenoma or glands like a “metal detector”. Instead, the probe was used only to measure parathyroid hormone output of our adenomas and the biopsies of our remaining healthy parathyroid glands (generally three) to help ensure that we were cured. It is not clear to us whether surgeons elsewhere locate and check PTH output of all adenomas and remaining health glands using the radio guided probe in this way. Nor did these experienced surgeons have to “explore”. Instead they use their expert understanding of the neck’s anatomy to locate all four glands in short order.
Had we chosen other surgeons and facilities, we were almost certain to face a longer time in surgery, which could also mean a longer recovery. Likewise, it might have meant a less certain outcome because frequently, if surgeons are not as experienced, all four parathyroid glands are not checked. Nobody complained about pain afterward. Most of us had a meal shortly after being back at our hotels.
It is important to note that the post-surgery calcium protocol differs by quite a bit among other practices. Two of us were pretty much the text book NPC post-surgery calcium supplement intake, but two of us needed LOTS of extra calcium that was recommended by each one’s surgeon initially and subsequently coached along by the diligent and easily accessible staff in Tampa. These needs, early on, were determined by our surgeons before we took our first calcium pill. None of us ended up in the ER with a calcium IV due to the sudden drop to normal of our serum levels. Anyone who felt she needed other questions answered, found that being in touch personally with one of the nurses or her lead surgeon was easy.
While each of our stories is somewhat unique and each of our travel and lodging experiences vary somewhat, our procedures were all done in an expeditious manner, our recoveries were well underway in short order and we are collectively rid of our pre surgery symptoms and feel fantastic. Everyone’s labs in the following months are back to normal. Meanwhile, each of us knows at least one or two other people with this disease, whose doctors are not doing proper workup, diagnoses, or least of all, recommending surgery. They are victims of the ‘wait and see’ treatment plan. Each of us has become an advocate within our own circle of friends.
We are looking forward to having Parathyroid Peep Sophie Freedman, as a brand new resident of Arizona. This will afford us a unique opportunity to schedule regular meet ups in the state of Arizona, so that we can share our stories and take an active part in ongoing awareness and support of parathyroid disease.
I love reading about the experiences of other’s who have been undiagnosed for so long. It amazes me. I was a patient at NPC 1 year ago and had an a tumor removed. I felt much better after the surgery for several months. While doing follow lab work for other thing such a my thyroid levels, my PTH came back very elevated. My calcium was fine. I do not understand why my PTH would be so high 106. Any ideas what might be happening?
We are not medical professionals so will not try and guess why that is happening. We suggest that you get back in contact with the surgical group to discuss your specific situation with them. Patients are given their surgeons phone numbers so that they can ask follow-up question if necessary or you can contact the office and ask them what is your best course of action.