Hyperaldosteronism & Conn's Disease email@example.comA support group for anyone who has or is being tested for Conn's Syndrome or Conn's Disease. Dr Conn himself always referred to it as Primary Aldosteronism(PA). I trained with Dr Conn at the University of Michigan and he changed my approach to all of Medicine. PA can be caused by one of several abnormalities in the adrenal gland(s).
If there are tumours causing the abnormality they are usually not malignant (not cancer) and may be in one or both adrenal glands. Surgery may cure the problem in 30-50% of patients who have been properly diagnosed before surgery.
However the majority of patients have a process that involves both adrenal glands called bilateral adrenal hyperplasia. We do not know the cause of this but it seems to be related to somatic genetic mutations in the adrenal that result in excess production of aldosterone from both glands. Surgery is rarely successful, but the majority of all patients with PA can have their BP and low K symptoms markedly improved in two weeks by changing their eating plan to the DASH diet (low sodium (Na) high potassium (K) and adding medications that block the effect of aldosterone in the body called Mineralocorticoid Blockers (MCBs). MCBs work by attaching to the aldosterone receptors in the kidney (and elsewhere) that are responsible for the urine Na retention and urine K wasting effects of aldosterone. Animal and human studies show that for aldosterone to increase BP and cause K wasting it must be accompanied by a high salt intake. Thus lowering your salt intake is a key part of taking care of your PA.
Conn's is the most common cause of difficult to control hypertension or drug resistant hypertension (DRH). It is likely the cause of high blood pressure in up to 20% of all with high blood pressure. This was predicted by Dr. Conn in 1964, but most doctors have failed to keep up with how to easily diagnose and manage Primary Aldosteronism since graduation from Medical School They learned it is very rare and always associated with a low K. This leads to many patients with PA suffering for years with all the problems seen in PA (mostly due to low blood (and body) K.and not being diagnosed and treated properly.
If you have Conn's Disease you are a very special person and you can benefit from the many on this site who have Conn's and from my long term experience in the diagnosis and management of these problems.
Our long term goal is to train you and your health care team how to diagnose and manage folks like you so they don't miss the next Conn's in their practice. Remember PA is likely 2 in every 10 patients your Dr is seeing with high blood pressure. It has been recommended for over 50 years that all patients with DRH be screened for PA. However, a recent study from the Veterans Administration Hospital System reported that, even in this usually excellent high blood pressure care environment, only 4% with 269,010 patients with DRH have been properly screened for PA. Most practitioners do even less testing.
As you learn here you will enter a new and better world of medical care knowledge and care and will likely return to feeling normal again with a normal BP and body K.
I recommend that the first thing you do is read my published articles in our files. The first reviews how PA progresses over time and is called "The Evolution of PA" in our files and take this to all your health care team. The second review why and how the DASH diet works in PA. "How to do the DASH" is the file name.
Then read our files that contain many patients "Conn's story" which encapsulates each persons journey to the diagnosis and management to get back to feeling normal again. I find it useful to the then give us your story in as much detail as you want. Because for the many issues that can be experienced due to excess aldosterone you cannot give us too much detail. We especially need your blood tests potassium, aldosterone and plasma renin and the ratio of aldo/renin called the ARR. Always include what is normal in the lab where they were done. Because some causes of Conn's are inherited (called GRA) and run in families give us as much of your family history (FHX) of high blood pressure and low K as you know. These families are at high risk of having strokes around age 50. Other families have what is called Liddle's syndrome but their aldosterone levels are very low. These families are at high risk of stroke before age 50 and may require different medications to get BP control. You will soon be an expert in all of these problems if you stick with us.
Again, we stress the role of diet in the management of PA and recommend you purchase and read the paperback book by Thomas Moore: The DASH Diet for Hypertension available in ebook. The DASH Diet for Hypertension- ISBN 9780743410076 . You will decrease your need for other BP meds by following this diet. However, always discuss this and any other things you read about at our Group site with your own health care team first. They know you the best. If they have never heard of the DASH now it the time for them to do that. You are how part of the cure!
We recommend you learn to take your own BP with a device you listen to and take these to your health care
team. Share with us as well. Your BP level is the best measure of how you are progressing in getting back to good health.
You will also benefit by joining the Primary Aldosteronism Foundation site at primaryaldosteronism.org. This foundation has recently been formed by members of the old Yahoo Group. Please contribute to their effort to increase awareness and research in PA around the world. Including your own Drs office!
May your pressure be low!
CE Grim MD and the old Yahoo Group and the new Groups.io group.
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