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Posted in: Adrenal Cancer.

Conns Disease

From: Kazza80 - 7 years 39 weeks ago

After ten years of high blood pressure, headaches and body cramps, I was finally diagnosed with a tumor in the left adrenal gland. It is producing too much aldosterone and therefore I have a very low potassium level. This process has been so slow and exausting. I have my first appointment with the surgeon on Thursday which is a bit scary. I have little children to take care of and my fears do get the better of me. Also, i have had some terrible moodswings and wonder if anyone out there understands what I am going through. Because I look fine, there's not a lot of understanding from those around me. By the way, i selected adrenal cancer as the topic because conns was not an option.

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6 Responses

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Believe me, I do Understand - I was looking for 30 - 35 years!

First to try and alievate your fears, most Adrenal Adnomas (turmors that cause Conn's Syndrome) are benign. I was diagnosed a couple of months ago so I have done quite a bit of research. I suggest you get started by checking out:
There is a lot of good information there and they have in excess of 500 confirmed sufferers of Conn's. It is led by a retired Dr., Dr.Grim, who has been involved with Conn's for over 45 yrs. and actually worked with Dr. Conn (he'll remind you many times!) I find he is real biased with treating it with medicine. A lot of times you can participate in good discussions and ask your own questions. My mind is about ready fo bed so I won't try to get into any depth but there is a lot of good info out there and you will find it is not as rare as once assumed. There appears to be a lot of research going on to try and determine EVERYTHING the excess aldostersone causes. Reduction in Potassuim and high BP have been known but now they are researching how it effects left ventrical thickening of the heart, diabeties, obesity and much more! There are 3 or 4 research projects at NIH (National Institute of Health) in Maryland and one list 7 different conditions they are looking at - I remember because I can address about 4 of them!(I think there is going to be a new syndrome that puts it all together. I came across it last night but need to do more research to be sure.) I don't know how you got to the surgeon but you should find a good Endrocologist if you haven't already.
Good Luck and I Have checked to subscribe to this dicussion so I'll know if you check back. I probably have other ideas when the brain is a little fresher!....John

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Thanks for the reply John. I am in Australia so there is a big void of info from most Doctors. I am lucky enough to live close by to a hospital that has a hypertention clinic. They have a professor that has a lot of knowledge of this condition, unlike most gp's that tend to hand out prescriptions rather then investigate the actual problem. The symptoms you listed describe me perfectly. Particually the headaches and the low potassium. Thanks again, it's nice to know i'm not so alone.

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Hello Kazza,
My situation is similar - 8 to 12 years of hypertension, regular headaches and many quite severe - and eyes very sensitive to direct light (so much so that I started wearing a cap both inside and outside to minimise my headaches etc; tiredness and loss of fitness (I am fortunately a quite fit person who regularly exercises - but over the past 9 months I could not keep up my normal amount of exercise and sport). I attended 2 or 3 GP's over the past 10 years and all treated me with different medications for hypertension.

Over the past 2 years I experienced concerning dizziness, a few falls and 3 episodes of loss of visual and hearing perspective, and ringing in my right ear for short periods (on one occasion I thought I may have been having a mild stroke). Later I noticed that my breasts appeared to be enlarging slightly but considered that it must have been my imagination.

Back to my GP and referrals for all types of scans and opinions which resulted in a diagnosis of Menieres Disease. More medication - but I continued to have high blood pressure, headaches etc. It was not Menieres.

In May last year I visited another GP (younger and female - the first time I had ever visited a female doctor. She was most thorough and I immediately felt great confidence in her. After detailed blood tests and a thorough review of my symptoms she diagnosed on my second visit that this was likely to be much more than hypertension - and that she and the cardiologist she later referred me to advised they would get to the bottom of it. My GP immedialely put me in hospital with a diagnosis of seriously low potassium levels and suspected heart attack (extraordinarily high blood pressure at the time and chest pains and other pains). It was not a heart attack but I had a very serious issue and complications with low potassium levels.

Continuing actions and various medications led me to a Cardiologist and CT and MRI scans etc and then referral to an endocrinologist (another youngish female - and what wonderful medicos they are). The diagnosis of a tumour/adenoma on my right adrenal gland was confirmed. After considering all options and discussions with my endocrinologist and a specialist surgeon I decided to have surgery.

Last Tuesday (1 week ago)I underwent surgery to have my right adrenal gland and tumour removed. I discovered today that during the surgery they discovered two tumours (Adrenal cortical adenomas - one 22mm and the other 8mm). They had only expected to find one. All went well but I am still experiencing some pain and now on pain killers to help. I had a follow up visit to my surgeon this morning and he is very happy with the result. He expects that after a few weeks there is a 90% chance that all my problems will be gone and I will be free of medication. Fantastic.

I have not taken any of my previous medications since before the surgery and my blood pressure has already dropped and I have not had any form of headache etc. I have my fingers crossed.


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Wayne, thanks for sharing your story. Amazingly similar to what has happened to me. I am finally on the waiting list for surgery. I'v been told to expect between a three and six month wait. I'm so happy that your blood pressure has returned to normal range and that the headaches have gone. It is quite scary to know that this can be missed for so long. The worst response from a doctor was being told that my high bp was caused by anxiety. At least now I know these symptoms are not all in my head. Thank you so much for sharing your story, hopefully I will have the positive results that you have described. Thanks, Kazza.

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It is so nice to know there are others with these problems. I have had endocrine problems for over 25 years. I was diagnosed with Graves disease after I had 2 second trimester miscarriages. That was prior to my 23 year olds birth. They have struggled for many years to control my thyroid levels correctly since I had a full thyroidectomy. Then I started having blood pressure issues about 10 years ago. My mom was in hospice at the time and so my Dr. put me on meds and sent me on my way. They worked for a while and then they crept up and I was put on more meds. Then 4 years ago I was diagnosed with an over active parathyroid. It had been let go for several years and my potassium and calcium levels were so bad that they said I was critical. After they finally got me to a surgeon and he removed the parathyroid, they warned me that I could have a calcium episode where it would drop some and to chew on some tums. Well by the day after my surgery I was on the way to the emergency room with what felt like a paralysis. What was happening was called 'hungry bone syndrome' and happens in rare cases when the parathyroid has gone on too long. I had two more of those episodes and was hooked up to calcium IV's for almost a month in the hospital. It was very scary. All of my hormone levels went crazy. I left the hospital on 5 times more meds than I had ever taken in my life. In the past 4 years, my blood pressure will level out for a few months, and then it chooses to creep up and they add soemthing or they increase what I am on. I am on 4 blood pressure meds at this time and they are pretty much maxed out. I am still taking 5 potassium pills and 5 calcium pills along with magnesium every day. I feel like a walking pharmacy. I have had 2 CT scans that are 2 years apart (one in 2009 and one recently) that both show something on my adrenal glands. My GP is a little nervous to claim a problem, but says she does not like that I am on all of these meds. The CT results are being forwarded to a cardiologist I saw earlier this year and all I can do is hope that he will decide it is time to stop all of this craziness and do something about whatever is going on. After reading this medical info and reading your comments it sounds like I most likely DO have a growth on my adrenal glands that is causing all of this blood pressure and potassium stuff. But I am getting tired of fighting so hard. It is exhausting! Thanks for your words to help me see that I am also not alone and there is possibly help out there. Laura

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