Recently a follower posed a very interesting question that many patients cured of primary hyperparathyroid disease may not necessarily articulate but perhaps struggle with after being cured.
“How can I move on and be happy that the problem is fixed and not focus on the past? I just can’t let the past go. “
No doubt there are a broad range of emotions – anger, disbelief and/or fear, to name a few, that we may experience as we recover if we have gone undiagnosed for many years and/or have experienced a previous failed surgery.
First, it is important to understand that it is normal to experience a full range of emotions. It can be very unsettling to come to the realization that the health care system we rely upon and in which we may have had complete faith, failed us on many levels.
It can also be difficult to wrap ones head around the fact that far too many healthcare professionals do not know enough about this disease to make a swift diagnosis. In many cases, they do not properly rule out primary hyperparathyroid when their patients present with high calcium and/or blatant symptoms and often do not think to check parathyroid hormone levels early on.
Here are some thoughts we’ve had that have been helpful to us and have enabled us to let go of the past…
1. Focus on the important lessons learned that may one day serve us or a family member. What are these important lessons? That we cannot blindly trust our Doctors! They are only human and are doing the best they can but at times their knowledge (and time they have to spend with us) is limited. It is important to always do our own research and be our own health advocate. With the information that is available on the internet and a bit of discernment it is possible to make informed decisions.
For example, when my husband needed a hip replacement this past year, from experience we knew we needed to research the various surgical options available. Then we knew we needed to research the surgeons who perform the specific technique and found statistics on the number of surgeries performed and outcomes. By educating ourselves we felt confident that the surgeon we selected was the right one for the type of surgery my husband elected to have.
2. Realize that you are in good company if you went undiagnosed for many years. It is estimated by experts who have performed thousands of surgeries that the average patient goes undiagnosed for 8+ years. So, sadly, our circumstances are not unique. We have yet to meet anyone who hasn’t had this disease for many years prior to a diagnosis and surgery!
3. Think about the fact that if the diagnosis were made earlier (in many instances for patients this is perhaps 8 -10 years) the surgery might have been more barbaric and/or the outcome might have been worse. Surgeons continue to gain critical experience with each surgery performed. Progress is being made and techniques continue to improve over time. In my case, if I had gotten diagnosed at onset, I believe I would have had a very different surgical experience. The internet had not yet exploded and the information I needed to make an informed decision was not readily available. Given my adenoma was attached to my vocal cord I could have easily had a very traumatic surgical experience and might have even lost my voice. Yet in 2011 it was removed by highly experienced surgeons without incident.
4. If you are one who has had a failed surgery and are then subsequently cured by a second surgery, celebrate the fact that you are one of the fortunate ones who has been cured! Sometimes the scar tissue is so extensive from a previous surgery due to hours of surgical “exploration” trying to find the four glands, that the tissue becomes like cement and it becomes impossible to remove the embedded adenoma (s).
5. Reflect on the sage advice that “time heals all wounds”. Early in recovery patients in Facebook support groups often report experiencing mood swings as the body adjusts to its new normal. Patients who have gone undiagnosed for many years frequently share that, more often than not, it does take awhile for their bodies to fully heal while others experience more immediate improvement. Each patient is unique. Be kind to yourself and try to be patient, as difficult as that can be. It is OK to feel angry. I remember crying when I woke up from surgery. I felt betrayed by the system and was mourning lost time.
6. Take action to educate and advocate. While you cannot go back in time to change your own set of circumstances, each of us is in a unique position to help raise awareness and advocate for improvement in diagnosis and standards for surgical treatment so that hopefully someone else will not have to suffer.
7. Look at the process as a journey rather than a means to an end. There is no question that living with high blood calcium is bad. We felt blessed that we avoided the deadly consequence of living with high calcium. This does not however, mean that high calcium hasn’t wreaked havoc on our body! Anecdotally it seems that it isn’t all that unusual for there to be an unraveling process with further work to do to reap the full benefits of surgery. Perhaps there are thyroid issues that are discovered which need to be sorted out, work required to improve bone deterioration, a few more kidney stones still to pass and/or dietary changes to be made that can significantly improve health. Read about my own discoveries here. In other words, find delight in the opportunity to become the healthiest version of yourself.
We hope these tips are useful in some way. What has helped you overcome feelings of anger, fear, frustration and/or disbelief and has allowed you to let go of the past and disappointment of lost time? We would love to hear from you.
It took ten years of watching and recording my calcium slowly rise from 8.8 to 11.3. At that point, I had two failed PTH surgeries before I found a medical school, Anschutz Colorado University in Aurora CO, with the latest technology and testing equipment to locate the elusive adenoma. This 11.3 test result was my only symptom and I did not want to wait for the other symptoms to appear. I chose to have the surgery while I was healthy and fit to overcome any side effect such as pneumonia, infection, MERSA, etc.. After the adenoma was removed, my innovative surgeon plucked a section of good PTH, sent it to be frozen and available from the bank to be transplanted into my arm, where it could easily be located, should a future need arise. One year later, calcium 8.5, PTH 47………..a winning combination.
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Hello Peeps! I ran into a friend after an absence of several months and after all the usual “how have you been” greetings, I related my PTH surgery experience and urged her to be sure to have her calcium and PTH checked on her next routine PCP visit. My friend stunned me by saying she has no thyroid, therefore she has no parathyroids. Unable to conceal my fright at this statement, I quickly changed the subject. This bothers me. I now see her frequently but feel guilty that I avoid the subject. What would you do? Avis Yvonne Grant Boulder CO
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What would we do? Hmmmm
First- We would express concern and sympathy over the difficult health issues the person has likely faced. It is no small matter to have ones thyroid removed and work to find the right balance of synthetically replaced hormones.
Second – Sometimes people are not aware of the function and location of their parathyroid glands–they hear the word thyroid and immediately presume they are related, so we would be inclined to clarify. Just because a person has had their thyroid removed does not necessarily mean that their parathyroid glands have been removed as well. We would be curious to learn more about why their parathyroid glands were removed at the same time. Unfortunately, as in the case of parathyroidectomies (removing one or more parathyroid glands that have become a non-cancerous tumor), some surgeons are more skilled than others. Sadly, as we understand, some surgeons DO remove all of the parathyroid glands inadvertently or purposefully when perfomring a thyroidectomy and thus the person becomes HYPOparathyroid as a result. If all four parathyroid glands are removed, then your friend would be familiar with managing HYPOparathyroidism and we might inquire about what that is like for our friend.
Finally, and perhaps most importantly, we would take cues from our friend to determine both how many questions to ask them about their health struggles and how much of our own story to share.
We hope this answer is helpful in some way in determining how to move forward with your friend.