Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
Hi everyone! I've been having a lot of random health issues for several years, that I've been disregarding as just being over worked, getting older, etc. But earlier this year I had the stomach flu, followed by a massive level of stress because of missed work, and I just totally fell apart. All of my "random issues" became magnified and got a lot worse, and I finally realized I should see a doctor.
Initially we were looking into a possible thyroid cause, because thyroid disorders run in my family. They found that I do have Hashimoto's antibodies and an under active thyroid, but the endo doesn't feel it's all that bad and that there is something else going on with me. He asked me a couple of times about Addison's, which I didn't really know anything about, and they're doing a ton of lab work right now. But after looking into Addison's now I wonder if maybe I have something adrenal going on.
My symptoms include: constant fatigue, heart palpitations, my blood pressure plummets when I stand and I get dizzy, inability to handle stress (everything seems to be a crisis, even when it's only mildly stressful), I get shaky and weak and confused when stressed or over excited. I eat very healthy, but I have this shameful need for potato chips at times. Like I NEED them and eat half a bag and feel better. Some days I'm desperately thirsty. Some mornings I go from dead sleep to wide awake panic - some fight-or-flight switch is flipped and I shoot out of bed. I've become terribly sensitive to bright light and can't leave the house without my sun glasses. Some days I feel ok, and other days I feel very defensive for no reason. I don't even like being touched on those days. I get hot flashes at times, but most of the time I'm cold. Sometimes if I go too long without eating I get suddenly weak and shaky. My hair is falling out. Activities where there are a lot of people (like at Costco) or parties seem to overwhelm me. I feel like my mind gets really fuzzy and tunes out, and I need to go home and rest for a couple of hours afterwards.
I don't have hyper pigmentation, although I have noticed a ton of little faint freckles showing up. I don't really get nauseous unless I'm in panic mode, and even then I don't throw up. I haven't blacked out, but there are times that I "grey out", and my vision and hearing cut out and I feel like I'm about to faint but don't.
Just wondering what you guys think, if that sounds much like adrenal issues. I'm not sure what tests my doctor is running, but they took six vials of blood from me so I think he's running the gamut. I know he's testing cortisol.
Initially we were looking into a possible thyroid cause, because thyroid disorders run in my family. They found that I do have Hashimoto's antibodies and an under active thyroid, but the endo doesn't feel it's all that bad and that there is something else going on with me. He asked me a couple of times about Addison's, which I didn't really know anything about, and they're doing a ton of lab work right now. But after looking into Addison's now I wonder if maybe I have something adrenal going on.
My symptoms include: constant fatigue, heart palpitations, my blood pressure plummets when I stand and I get dizzy, inability to handle stress (everything seems to be a crisis, even when it's only mildly stressful), I get shaky and weak and confused when stressed or over excited. I eat very healthy, but I have this shameful need for potato chips at times. Like I NEED them and eat half a bag and feel better. Some days I'm desperately thirsty. Some mornings I go from dead sleep to wide awake panic - some fight-or-flight switch is flipped and I shoot out of bed. I've become terribly sensitive to bright light and can't leave the house without my sun glasses. Some days I feel ok, and other days I feel very defensive for no reason. I don't even like being touched on those days. I get hot flashes at times, but most of the time I'm cold. Sometimes if I go too long without eating I get suddenly weak and shaky. My hair is falling out. Activities where there are a lot of people (like at Costco) or parties seem to overwhelm me. I feel like my mind gets really fuzzy and tunes out, and I need to go home and rest for a couple of hours afterwards.
I don't have hyper pigmentation, although I have noticed a ton of little faint freckles showing up. I don't really get nauseous unless I'm in panic mode, and even then I don't throw up. I haven't blacked out, but there are times that I "grey out", and my vision and hearing cut out and I feel like I'm about to faint but don't.
Just wondering what you guys think, if that sounds much like adrenal issues. I'm not sure what tests my doctor is running, but they took six vials of blood from me so I think he's running the gamut. I know he's testing cortisol.
You definitely fit the profile for Addison's. I've had every symptom you mentioned in your post except the problem with bright lights. Until you have a diagnosis there are some things you can do. You need to really up your daily salt intake, that's why your craving the potato chips. If you have Addison's you dump the sodium in your system, then your blood pressure drops and you feel lightheaded or you might pass out. Chicken broth and cheese have a lot of salt too. If your blood pressure is under 90/60 you need to go to emergency and tell them you are being tested for Addison's. Also if you are throwing up and feel like you might pass out, go to the ER and tell them. Your shaky, weak, fatigued, and your brain gets what we call brain fog due to a lack of cortisol in your body. I still get this, but I up dose on my steroids and feel better pretty quickly. I also have anxiety, but the doctors say it is from both the thyroid and adrenals. I take Klonopin daily for that. Even emotional stress can cause your symptoms to be worse if you don't have cortisol to help you with the stress. I up dose when there is a major emotional problem, like a death in the family. I have nausea almost everyday, I have prescription drugs to help with that.
If you have Addison's the steroids should help most of your symptoms. Some people are able to take steroids and go back to living a normal life. Most of us live a more quiet life because of the illness.
Addison's is caused by many things. What you went through could cause the adrenal problems.
It is really important to treat the thyroid and the adrenals together. You don't say if you are on thyroid meds. If you do start steroids you do need to take thyroid meds too. Their both from the endocrine system.
If your adrenals are still working I wouldn't start the steroids. The steroids will shut down your adrenals completely. Only Naturopath doctors tend to do adrenal support trying to bring back your adrenal function. Most doctors don't believe in adrenal fatigue.
I would get the test that lifeis2short mentioned. Also the saliva test. I'm sorry that you are feeling so bad. I hope you get some answers from your tests. If you have any questions feel free to ask. Good luck.
Is there a type of blood pressure monitor that you recommend?
Your doctor should be worried about your BP. It's recommended to go to the emergency room if your BP goes below 90/60. You have a good chance of passing out at this point. If it goes lower, not brought up by IV fluids and IV steroids, you start to risk major organ damage. The doctor should have given you at least an IV of fluids. It's considered a crisis when your BP is that low. I give myself a shot of steroids from an emergency injection kit when I get that sick. If that doesn't work I call the paramedics. Not all ER's will take you seriously when you say you have Addison's, they aren't educated enough. Just a few times I had to wait over 6 hours to even get in a bed. We can die in that time period. So the paramedics always take me because of the blood pressure being low or not detectable. The emergency injection kit has kept me out of the hospital more times than I can count.
I hope you get your results soon.
Cortisol AM: 17.3 (4.0-22.0)
METANEPHRINE 41 less OR = 57 pg/mL
NORMETANEPHRINE 58 less OR = 148 pg/mL
TOTAL METANEPHRINE 99 less OR = 205
What did your doctor say? Did the doctor give you a copy of your labs from your thyroid? If you can get them, post them on the hypothyroidism site. A lot of people are very good at reading the labs. A lot of time your numbers will be in the lowest part of normal, but if that is where your numbers are you will continue to feel. You need your FreeT3 and Free T4 at the very least at 50% of the lab range if not over %75.
Let us know what happens. I'm sorry you don't have any answers yet.
I've had my thyroid checked twice in the last few months, and my free T3 and free T4 came back in the 20% and 30% of the range. Which I know is way too low, but the endo INSISTED that my thyroid is totally fine. Mainly because the TSH is normal. He and my GP are trying to find something else wrong with me, partly because some of my symptoms don't fit the hypo profile. Like the issues with my blood pressure, heart rate, constant anxiety, sleep problems, salt cravings... Every test they run comes back totally perfect, except for the thyroid one (and the endo thinks that one is fine too).
It's really frustrating.
The doctor just said that everything came back fine, except my vitamin B is a little low and I should double up on the supplement that I take. Then he called me a week later just to ask how I was feeling (he was worried about my heart and blood pressure). That was nice of him.
Your cortisol reading wasn't high. Sometimes you will get a high reading just before they are going to shut down. But that doesn't seem what is happening to you.
If I was you I would get my labs for my thyroid and post on the thyroid site. Ignore the "drop your doctor" that most will tell you. But list your labs and the range from the lab. They might be able to help you. Good luck.