Monday 24 November 2008

Adrenal Fatigue is REAL

June 20, 2008 (original excerpt from journal)

Otherwise known as my adrenal rantings...

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 stinking 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, 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. Hyperaldosteronism or not, I have adrenal fatigue.

All I really want 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.

14 comments:

Emmyme said...

I also have an aldosterone-producing tumor, diagnosed within the past year after living with high blood pressure and low potassium for several years and not being correctly diagnosed. I'm a bit confused about your entry, because "adrenal fatigue" is a term usually meaning symptoms of Cushing's, which is kind of like the opposite of Conn's. I wonder, have you had the full battery of tests to diagnose your hyperaldosteronism? Has your aldosterone and renin blood levels been measured after a 3-day oral salt load? Have you had a CT scan, or addrenal vein sampling? Are you on an aldosterone-blocking medication, like spironolactone or Inspra?

You should be on one of those aldosterone blockers!!!! Spiro has been a godsend for me. My potassium is now normal, and my blood pressure is in the acceptable range below 125/85. Some people on spiro with PA still have to take a low dose of a blood pressure med like the calcium channel blocker Norvasc (but many blood pressure meds, like beta blockers and ACE inhibitors are useless for PA-induced hypertension). You should also be rigorously following a low-salt diet. You should have no need for potassium supplements if you are on spiro or Inspra. And has your doctor told you that surgery is an option to remove the affected gland (but only after adrenal vein sampling to determine whether it is only one or both glands that are overproducing?)

There is a great Yahoo group for people with hyperaldosteronism/Conn's syndrome, which is run by Dr. Grim, who studied with Dr. Conn. I encourage you to join! Good luck, Emmy

Flower Spy said...

Hi Emmyme~

I understand what you are saying about adrenal fatigue being a symptom of Cushings. My problem is that personally, I have suffered from the same symptoms associated with Cushings. I have not however ever been diagnosed with Cushings, just Conn's. I also have joined the Yahoo group. FYI- There is also a support group for rare diseases http://www.inspire.com/groups/rare-disease/discussion/conns-syndrome-hyperaldosteronism/
and many of my fellow Conn's sufferers have complained about the very same symptoms. It would be very difficult for me to believe Conn's sufferers do not have adrenal fatigue. This is after all an adrenal condition that creates fatigue and muscle weakness, among other things.

Testing for me thus far has included: being diagnosed through a routine CT scan, an MRI, the saline suppression test (salt load), and the adrenal vein sampling. My endo has not at this point put me on spironolactone, primarily because she said it can screw up the test results. After my final results come in from the vein sampling, I probably will have that option given to me. I have improved my blood pressure through cardio/aerobic exercise and diet. My pressure has been normal for 3 months.

In terms of surgery-it's has been discussed continuously for 7 months, but will be determined this week when I get my final aldosterone levels from the vein test. My surgeon also studied with Dr. Jerome Conn, which is very reassuring.

I'm so glad the spiro has worked for you. I know a woman who took it but still had to take potassium supplements- so consider yourself lucky that you do not. BTW-Do you know of any reports on the long term side affects of it? I'd be very interested.

Thanks for the tip on the low sodium diet, no doctor has mentioned that, only the side effects of eating salty food. We can learn so much from supporting one another. As I mentioned, I started this blog to learn more about Conn's, and to provide support for others with it.

I wish you tremendous luck.

CINDY BUCKLEY said...

I have Conn's syndrome too, and am on Spironolactone. I started a little over a year ago. It was discovered due to blood pressure we could not get under control by diet, exercise or typical BP medications. I am googling tonight because I feel like I am at the end of my rope. This last year has gotten progressively more difficult for me. I identify with several of the symptoms you've listed. I have been wondering if they could be caused by too much spironolactone? That was what I was trying to research tonight. All I know is that it is awful. I feel like I can barely take care of my family or myself. There has to be some answer to this.

I am going to look into the yahoo group. I need some answers!

Anyway, thanks for writing this blog.

Welcome to Holtorf Medical Group said...

Adrenal fatigue causes many disorders in people.Adrenal fatigue medication is done after diagnosis of adrenal fatigue. I know of a wonderful website that offers excellent treatment and patient care for adrenal fatigue.

Unknown said...

A good collection of information here which I never seen. However most of them are found to take care of only the symptoms and not the root of the problem. So the chronic fatigue doctors analyse the cause for it.

DianaBol said...

You've got some great information stacked on your blog. Thanks for all the info.

Evelyn said...

I don't have Conn's but I have secundary hyperaldosteronism because of bilateral stenoses of the kidney arteries (fibromuscular dysplasia). I have high blood pressure and low potassium levels, there is no kidney failure.
I do recognise the symptoms of adrenal fatigue, which I believed to be caused bij low potassium levels. But in Holland, where I live, only potassium levels under 3 are cause for alarm. Mostly I test between 3 and 3.6. I have never heard of adrenal fatigue. I so recognise the forgetfullness and the brainfog!!! Have you recovered from this? Were they ever explained to you by your doctors?

Womens Natural Energy Supplement said...

Interesting how you wrote caffeine may be one of the factors associated with adrenal fatigue due to artificial stimulation in short bursts. Thanks for posting this.

Unknown said...

I can't seem to get doctors to take me seriously. I have had high blood pressure and consistantly low potassium levels for years and I get a lot of "Just eat a banana" type of answers. Last spring I had a blood test come back with a 2.9 potassium level. The nurse practitioner I was seeing made me go to the hospital. The young intern there kind of poo-pooed the whole thing until he tested me and it dropped to 2.1. The real problem is that I don't have insurance so I have to go to cheap urgent care type clincs. So in the mean time here what I do is load up with potassium. I bought potassium salt-substitute and put some in some V-8 everyday. It seems to help, but next year I hope to have insurance and can maybe see an endocrinologist. It's tough because I know of the seriousness of hypocalemia and it scares me to know how close to death I could actually get. Thanks for this blog and really I think this is more common than they think. I actually read a study that soda can decrease potassium levels. I don't drink it anymore but sometimes wonder if that did some irreversible damage. Well, we'll see.

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