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.
17 comments:
good for you for contacting them. When I got sick again after my surgery I spoke with Ms Wong who asked Dr Margolis if it were possible to suffer adrenal insufficiency after an andrenalectomy for Conn's. Answer was might be possible but highly unlikely.
We have a long way to go for Conn's and its aftermath to be recognized
Dear Anonymous,
This infuriates me that there is NO STUDY/RESEARCH on patients after an adrenalectomy. Highly unlikely? Really? While living with one gland? Did Dr. Margulies provide you any data regarding this? I doubt it.
Yes, we need to stick together and get these guidelines changed. Until an endocrinologist gets Conn's and experiences firsthand what MOST of us go through, we will undoubtedly continue to be looked upon as hormonal, over-reactive and unbased complainers.
Thanks for your email~Carole
Hi.
I'm new to this site. I am 46. I had an adrenalectomy (right side) when I was 39. I am very happy I had the surgery as I was sooooo sick! I feel so much better than I did but.....I still feel a little "off". I believe it's due to hormonal disruption that can't work itself out. I'm also menopausal which is just lovely. I absolutely believe there are long term consequences to having only 1 adrenal gland. Ex: handling stress is a real issue for me, sudden fatigue at times, very hard to get up and going in the morning, difficulty going to bed at a reasonable time, bouts of anxiety, racing heart, unsure of myself, some mild depression, not being able to get my words out quickly or correctly, inability to stay on task.
I believe the surgery "cured" my symptoms of Conn's disease but that there are "side effects" of having only 1 adrenal gland.
Hi Carole,
I sincerely thank you for creating this blog and getting your personal story out to other similar sufferers. After recent dealings with my new NM doctor (I'm from MD too, coincidentally) who was just all "deer in the headlights" when confronted with my many symptoms, I went looking for answers online and came to the conclusion that it is highly likely that I have Hyperaldosteronism. Also, I have a tendency to get sick when I get emotionally overwhelmed. I can be extremely happy and get sick. That's just wrong! But it's been happening since I was a small child. Anyway, just wanted to say thanks for doing what you do. I really appreciate it!
Jane in Rio Rancho
Thank you for advocating for us!! You should lead them to this site and all the blogs that have been left for you and have them tell you that there isn't "many"! As for me, I'm still struggling in AZ as the heat (even in the so called winter) has made it almost impossible for me to maintain my potassium levels. I'm plagued with constant chest pains (a common symptom in women with low potassium) and leg cramps. I'm on potassium sparing meds but with the heat, I'm drinking more trying not to be dehydrated and end up wasting all the potassium because I have to urinate all the time. So now they added a potassium pill! If you dont know, too little potassium or too much can cause a heart attack! I can't win for losing! Tell N.A.D.F to "most" that! Thanks again for all you do!
Hi, I'm new too to this site, I'm glad you are doing this because like all of you I'm suffering since I was a little girl!!!!! Drs. Had neglected my health, some of them were rude, ignorants and careless they try to make me believe that all my symptoms were in my head!!!!! Until now even months before they discovered my tumor they try to make me go on birth control pills for four months non stop!!!! One day I just culdn't take it no more and I went to the ER!!!! I was treated with medication for STD'S without having any of them just because Dr. Believes it. At my second time at ER, I had a CT scan that later proof my symptoms I was suffering from a tumor named Pheocromocytoma on my right adrenal gland!! The tumor was big enough to cause all the symptoms I was complaining thru the years, at surgery time Dr. Notice that my adrenal gland was surrended by the tumor that had stuck to my liver! Sad no one believe me !!!
Hi Flower Spy,
It has been a long time; good to see you are still kicking! I still haven't had surgery and am continuing to endure the side effects of large-dose spironolactone. The side effects are small compared to how conn's makes us feel, eh?
Hang in there!
TX Dave
Nice post, thanks for advocating us. although i am not good in these biological term. but I am feeling good to read your article.
Great Job Keep it up
Hi,
New here too. I have finally been diagnosed with Conn's via a CT scan (tumor on the right). I meet with an endo at he end of the week. I thank my GP who has been scratching his head for years, off and on trying to work this out. He finally spoke to a friend who is an endocronologist and he suggested Conn's. It was such a relief to put a name to it and having read sites like yours, makes me grateful for all the diligent people. This has been around since I was 5 years old. It has come and gone all my life (now 59) and has been constant for the last 10 years. Thank you for all your efforts, information and just being someone else who has this and is willing to share. I am fairly isolated and my husband's carer,so am gleaning everything I can. Thank you again.
Delphine
Hello All - Its been a long path to Conns. Years of massive migraines, hypertension on 4 meds, brain fog, fatigue, muscle paralysis. . blah blah. . 4 ER trips, who knows how many doctors visits and tests, 2 Adrenal Vein Samplings - (one thru the groin and the other thru the jugular) and one Right Adrenalectomy later. . I am now on no meds and my BP is low. I feel SO much better. Downside: If I overdo it. . I get quite fatigued and I still feel as though I experience brain fog. Keep the faith. I found outstanding care although it took too many years to diagnose. Thank God they finally did.
This is nice way to serve patients i am totally satisfy from your blog and I was treated with medication for STD'S without having any of them just because Dr. Believes it. At my second time at ER, I had a CT scan that later proof my symptoms I was suffering from a tumor named Pheocromocytoma on my right adrenal gland! but now every thing is fine because i have saved my weakness.
Thanks for sharing...
Priligy Medication
Thank you for advocating for us!! You should lead them to this site and all the blogs that have been left for you and have them tell you that there isn't "many"! As for me, I'm still struggling in AZ as the heat (even in the so called winter) has made it almost impossible for me to maintain my potassium levels. I'm plagued with constant chest pains (a common symptom in women with low potassium) and leg cramps. I'm on potassium sparing meds but with the heat, I'm drinking more trying not to be dehydrated and end up wasting all the potassium because I have to urinate all the time. So now they added a potassium pill! If you dont know, too little potassium or too much can cause a heart attack! I can't win for losing! Tell N.A.D.F to "most" that! Thanks again for all you do!
Cohiba Lancero
I love this! this is really very informative blog i have read your article and very impressed hope you will be keep updating your blog.
Thank you for post.
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 Cohiba Siglo VI.
Hello
Great information in this post.....
Dockland
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