Originally posted: June 20, 2008 (see hyperaldosteronism blog for more postings...)
After all the blood work I've done, I'm starting to feel like a vampire victim. I have NO energy, I barely can make it up steps and I have the hardest time getting up in the morning....and I know it has to do with this thing growing inside me. I've been reading as much as I can about adrenal tumors. They are supposedly common, but not the kind I have. Endo # 2, after all was said and done, was pretty sure I have hyperaldosteronism (PH), one of the longest medical terms I've ever seen. He did say fatigue was not uncommon. I wish he told me more. He also called it Conn's syndrome. He did not however call it adrenal fatigue.
Now that I have become my own patient advocate, I am reading as much as I can on my condition. And I keep finding varying bits of information. But here is something interesting I ran across. I feel this best represents what I have been feeling for close to a year.
ADRENAL FATIGUE SYNDROME: * excessive fatigue and exhaustion * non-refreshing sleep (you get sufficient hours of sleep, but wake fatigued) * overwhelmed by or unable to cope with stressors * feeling rundown or overwhelmed * craving salty and sweet foods * you feel most energetic in the evening * a feeling of not being restored after a full night's sleep or having sleep disturbances * low stamina, slow to recover from exercise * slow to recover from injury, illness or stress * difficulty concentrating, brain fog * poor digestion * low immune function * food or environmental allergies * premenstrual syndrome or difficulties that develop during menopause * consistent low blood pressure * extreme sensitivity to cold
When I read this, I had one of those serious "a ha" moments. Most of these were me, except the low blood pressure... hyperaldosterone raises the pressure instead. But at least I was getting closer to the culprit of my exhaustion and physical misery. Why endo #2 didn't assist me more when I called him pleading for help after individually mentioning these symptoms as well as others, I'll never know.
But after some more digging around on the web, I see that perhaps there was a reason why he didn't acknowledge my complaints. According to most board certified endocrinologists (including an explanation provided by the Mayo clinic), "adrenal fatigue" is a term that the alternative medical community has created. It's found in health books and web sites, but still isn't an accepted medical diagnosis. But how can this be I ask? I know what I am feeling. Are they disputing that? Well, maybe they are or maybe there still just isn't a lot known about hyperaldosteronism/Conn's. I haven't found any sites that list adrenal fatigue as a symptom of Conn's, only the word "fatigue" shows up.
All I know is what I am feeling and the above list hits it pretty much on the mark, even if it is coming from the 'alternative' community. In my opinion, it sounds a bit like medical east meets west. I have always identified with the eastern doctrine, which has a mind-body connection. But here in the west, we don't do that...we need endless research and testing, concrete evidence, factual data, and sometimes drug company involvement for a condition to become a legitimized condition. As a patient, I still want and need that, but I also need a wellness approach with holistic ways of healing. I heal better when my condition is listened to and so am I. I wonder if we can ever have it both ways in medicine.
Perhaps I am getting way ahead of myself here... like I said these are my rantings and I'm writing this at 2:00 a.m....(just around the time I get the big cortisol energy burst, thanks to this disease). For me personally, I'd love to know more about the mind-body connection with Conn's syndrome. I'd be interested in hearing from others to see if there was a stressful event that occurred before the tumor. I know I had one, a very long drawn out event. Five years ago, I experienced serious stress when I was became involved with a mentally ill person who lived in a revolving state of paranoia and anger, which ultimately came out on me. I was walking on eggshells and dodging landmines the all the while I was trying to run a business. It put me in chronic fight/flight mode, which is a horrible way to live. I also survived a near fatal car accident last year which I am still recovering from. I cannot think my stress glands weren't on major overload from these events. After my mind had had enough, my body gave out, I got sick and the adrenal fatigue symptoms followed.
All I really want now is to feel better, like I did before 5 years ago, before all this weirdness started. And to have a good nights sleep, and not be so exhausted all the time. To not have to take horse pills 3x a day and to never have a migraine again or have hypertension at my age. That's what I really want. Well, that and a doctor who will listen seriously to all of my symptoms and maybe just for once, look me in the eye.
Adrenal fatigue is usually associated with low cortisol output, whereas Conn's syndrome is associated with excessive aldosterone output. I've suffered from both. Adrenal fatigue due to low cortisol output usually manifested with low blood pressure, whereas, my new adrenal ailment is marked by high blood pressure.
In my case, I believe that my adrenal gland, trying so hard for years to give me maximal cortisol output, eventually led to the adenoma on my adrenal gland which has led to Conn's.
My adrenal fatigue due to low cortisol output can be verified by the saliva tests I took over the years I suffered from coma-like fatigue. After menopause, however, the low cortisol output was somehow mitigated and I think the cessation of having to generate reproductive hormones allowed my adrenal gland to heal enough so that I now produce adequate levels of cortisol now. However, it left my bruised and beatup adrenal glands vulnerable to this Conn's syndrome, which has led to major muscle weakness in my legs due to low potassium levels, slightly enlarged heart due to the fibrosis aldosterone causes, BP levels so high the vessels in my eyes are affected. I feel like I'm dragging around 100 pound weights on my legs, and occasionally use a cane. I'm now on an aldosterone antagonist called Inspra. Hopefully, I'll soon regain full function of my legs and will be able to walk around the block or just stand without feeling so weighted down. I believe the low potassium has actually caused nerve damage. Occasionally, I'll feel weakness in my neck and shoulders.
For me, the kind of weakness I have now is very different from when I suffered from adrenal fatigue due to low cortisol output, but different Conn's sufferers have varied experiences. I've heard of some actually being paralyzed. Adrenal fatigue, also called non-Addison's disease, is not an acknowledged ailment, but for me was very real and there were times when I prayed for death, as my body had become a prison for me.