A change in N.A.D.F. Conn's description

When I was at my sickest, I was desperate for whatever information I could find. I went on every site that had the word Hyperaldosteronism in it. What I found was a lot of confusing sites that had brief symptoms listed, namely that this disease only causes high blood pressure and lowered potassium levels, for example on the National Adrenal Disease Foundation's site (N.A.D.F.). This frustrated me a lot as I had so many other symptoms like migraines, severe fatigue, brain fog, numbness in limbs and concentration difficulties. So why are these so-called professional, medical sites not better researched and written? And what's with the N.A.F.D.? Shouldn't they have the full picture on adrenal diseases?

Yes, I believe they should. And so I did something about it.

Last month, I contacted Dr. Paul Margulies, chief endocrinologist at the N.A.D.F. and asked him to please change the symptom description for Conn's to reflect the reality of the disease. The following is a response I received, January 5th:

Dear Ms. Langrall,

Thank you so much for contacting the National Adrenal Diseases Foundation (NADF); a non-profit organization dedicated to providing information, education and support to persons with adrenal disease.

Your e-mail was presented to Dr. Margulies, and at your urging, he reviewed NADF's 'Hyperaldosteronism: The Facts You Need To Know', and made some changes. The text file of the revised NADF hand-out is attached in PDF format.

If you would like NADF to have detailed informational items for hyperaldosteronism, feel free to author something, and after it's presentation and okay by Dr. Margulies, we feasibly might add it to the information we display on our website and distribute to patients. Thank you!

And thank you so much for your activism on hyperaldosteronism patients' behalfs!

Also attached to this e-mail, please find copy of our latest newsletter (membership application on the back page). If you choose to join NADF, you will automatically receive a copy of NADF News® quarterly.

Thank you again for contacting NADF with your concerns! Best of health and luck to you.

Melanie Wong
Executive Director
National Adrenal Diseases Foundation

While the N.A.D.F. did add the other symptoms, they stated "MOST" patients did not suffer from these. I intend to respond and ask for the word "most" to be replaced with "many". The number of people that contact me on this site have suffered too much not to be listened to.

While the new description is not perfect, it is an improvement. That they actually read my letter and responded to my complaint is encouraging.

One thing to take into consideration when visiting the N.A.D.F. site, is that it was started to help Addison's suffers. There is more information for them than the Cushings and Hyperaldosteronism (Conn's) folks. This is very common. I believe we will see more Conn's cases in the coming years and by then, hopefully, there will be better guidelines and information.

Some post-surgical questions and observations~

Although I am clinically "cured" of Conn's syndrome, I still have so many questions. I'm sure a lot of you that have taken this unexpected journey do too. It would be easy for me to walk away from the support sites and blogs in an effort to close that difficult chapter, but I don't think that would be the right thing to do. So, I will continue to write updates and post anything relevant to this disease I come across in hopes of helping others who deal with Conn's.

One question I have is fatigue-- I still have it here and there, and am wondering if it's authentic or depression related. I've had a lot on my plate with caring for an aged parent and the typical work/life issues, and so I wonder if it's simply stress related or due to having only one adrenal gland. The problem becomes convoluted in that for so long, fatigue was a part of my life, and I wonder if it is here to stay or just a lingering side-effect.

I seem to get more fatigued when it rains or the barometric temperature drops. Weird. If I do strenuous activity, I require much down time to recoup. I had anesthesia twice within four months which is also a concern. If anyone else has experienced this complaint after surgery, I'd love to hear about it.

A few other post-surgical observations are food/alcohol related. Sugar is a major problem--I can't process it well, same goes with alcohol. If I have a drink or two socially, it feels like three. This makes me wonder what role my mono-adrenal gland plays in this, if at all. Same with coffee, it can effect me badly with nausea and crazy jitters. As a coffee first thing in the morning girl, this one is the toughest, so I have limited it weekly to four cups down from seven.

As far as eating in general, this is weird, but I find I have to eat every 3 hours or I feel jittery or like I may pass out. These seem like good questions for my G.P. next week as I no longer have an endocrinologist.

To some, these concerns may seem mundane in comparison to the big pay-off that erased the larger, more life threatening symptoms. Before I was diagnosed, I could handle all of the above mentioned things far better, now I am expected to be super-woman according to my surgeon. But I'm not even close. I realize these are my personal, physical symptoms, I know not everyone who has been through surgery will relate. But, if you are reading this and can relate, please, please, please... let's talk.

As far as living with one adrenal gland, all I hear from doctors is it's ok, don't worry, your other one will take over. But no where can I find long-term outlooks with living with one adrenal. What will happen when we age? I would really like to be educated now and know what could be around the corner.

Lastly, I wonder what it's going to take to get this rare little disease more attention. In my heart and my head...there are thousands more Conn's sufferers who are being misdiagnosed daily (as most of us were initially). A friend who works at a hospital gave me a recent report on Conn's as an epidemic. And as usual, the final word is many doctors are unsure if it is or not. While there is a severe increase of sudden on-set hypertension in younger adults (ding, ding ding), doctors who are supposed to suspect and check for hyperaldosteronism are not. And since it's such a tricky disease that takes prolonged testing, many (read: most) doctors disregard this and just don't--like mine. So where does that leave all of the Conn's suffers in the world? To the internet to self-diagnose, and if they are lucky like me, they may find a doctor who will listen to them. It's unfathomable to me that it has to be this way.

In the meantime, Dr. Oz may be receiving a letter from this ex-Conn's sufferer. I find it unlikely he will do a segment on Conn's because it's so rare, and he seems to focus on popular illnesses and conditions (like obesity). Again it's the catch 22--we need exposure to get more people checked, but who will take the first step? Well, you have to have hope, and maybe just maybe, if more people start coming forward to openly talk about Conn's, perhaps the major players will finally listen. And do more research.

As always, I appreciate your comments and well-wishes. For all of you out there living with Conn's, please know the positive has vastly outweighed the negative regarding surgery. I feel tons better and no more high blood pressure-which is huge. These little annoyances are small things compared to the endless gratification I feel daily. Please know there is life after this insidious illness.

Evaluation and Management of Primary Hyperaldosteronism

Interesting write up about Primary hyperaldosteronism being recognized as an increasingly prevalent cause of hypertension by the NCBI for the US National Library of Medicine, National Institutes of Health.

https://www.ncbi.nlm.nih.gov/pubmed/31255203

New research on the surgical procedure to treat Conns : Thermal ablation

I just read an interesting article in Medical Xpress.com where researchers are looking into a new alternative way to surgically remove the adenoma that causes Conn's through the use of electromagnetic waves (the technique is called thermal ablation). It's worth the read even though it's in the nascent phase of research.

https://medicalxpress.com/news/2019-04-thermal-ablation-method-adenoma.html