Dr. Jerome Conn
If you have been following this blog, you know I have struggled just like you with the debilitating disease called Hyperaldosteronism, also known as Primary Aldosteronism and more commonly referred to as Conn's Syndrome. For seven years, I have chronicled my journey from the steps it took to get a diagnosis, to finding a good endocrinologist who understood the disease (no easy feat), to my ultimate choice of having surgery.
I receive questions from people all over the world, from the recently diagnosed to those who are waist deep in the murky waters of Conn's. And then there are the survivors who opted for surgery like me whose ultimate question remains steadfast: Are we going to be able to live a normal life with one adrenal gland?
Well, yes, I believe so, but it will be tricky at times.While a few people have written to say that they have their lives back with little repercussion, there are many more who continue to have issues--big ones-- that they directly attribute to losing an adrenal gland. I include myself in that group.
Many of us are experiencing similar issues: hypoglycemia; affects from severe stress that can result in adrenal hypofunction (symptoms similar to Addison's disease); hormone imbalances in women; and hyperinsulinism- the result of overtaxing the remaining adrenal.
Sadly, there is little to no post-surgical data on our disease to be found on the internet. We are left on our own, seeking out the help of each other, wondering why our endocrinologists don't have the answers to our questions and seem to break up with us after surgery. If only Dr. Jerome Conn was still alive.
While surgery can be a life saver, managing stress is crucial to the body and mind. Living with only one adrenal gland can seem like a see-saw ride, sometimes you're up and feeling free of ailments, the next you're on the ground wondering why you are having more health issues after the faulty glad has been removed.
Other glandular diseases like Addison's and Cushing's seem get most of the attention. From what I have learned from having this disease, Conn's patients need some more attention too. But even today, many sites like the National Adrenal Diseases Foundation (NADF), still don't merit the symptoms so many patients experience. I for one know they exist as I had them and countless people who read this blog have too. I contacted the NADF three years ago to get them to add the numerous other symptoms and was fortunate to get a response from Dr. Paul Margulies: http://hyperaldosteronism.blogspot.com/2012/01/change-in-nadf-conns-description.html. Yes, they added the other symptoms, but they still wrote:
"While most individuals have no specific symptoms, some may have fatigue, headaches, muscle weakness and numbness. The physical examination is usually normal except for the elevated blood pressure"
The three underlined words are disturbing to me as I have received many emails from patients suffering with debilitating symptoms that have affected their lives traumatically.
The Clinical Journal of the American Society of Nephrology state that 10% -15% of newly diagnosed hypertensive patients are due to primary aldosteronism. Considering the amount of Americans that have high blood pressure, this number translates into an alarmingly high percentage. If that alone isn't enough to get more research and attention, think about this: of those 10-15% of people, how many are getting the treatment they need for Conn's or are their doctor's simply passing out meds without looking further into other symptoms? I realize the potassium levels are usually the indicator and some patients with this disease have somewhat normal range levels. But if they are complaining about migraines, polyuria, tingling limbs, fatigue and brain fog, shouldn't doctors pay attention to these and delve a little deeper? I think so.
So what can be done for our misunderstood Conn's group? For starters, it would be great if our designer disease got some major media play, like on The Doctor's or Dr. Oz I've contacted the Dr. Oz show twice but received no response. Maybe if someone really famous got this disease it would help, which is a terrible thought, but has some truth.
At this point, I suggest we continue to help and support each other here and on other sites. But, if you are on a medical site and read that there are no known side effects of Conn's, I highly suggest you contact that site and tell them your story. The more people know about the reality of this disease, the more informed we can become to help the next guy who gets diagnosed with this strange adrenal condition with an awfully long name.
