Starting in 1985, I had one medical problem after another. Two babies, an ectopic pregnancy, a miscarriage, 9 surgeries for gallbladder, cysts, hysterectomy, a bowel resection…but nothing could have prepared me for what happened to me in 2001.
I was so sick I couldn’t get out of bed. I was exhausted, weak, I couldn’t eat, I was confused all the time, and all I did was sleep. I had debilitating fatigue, muscle weakness, cramping, low potassium, and nausea. The doctors kept attributing all my problems to my Crohn’s Disease. But I knew it was something else.
After several ER visits due to extreme weakness, I was finally admitted to the hospital by my Gastroenterologist. You know those doctors that tell you they ran every test in the book and didn’t find anything? Well this guy DID run EVERY test in the book, and he solved the big mystery: SECONDARY ADDISON’S DISEASE
I had never heard of it. Adrenal insufficiency? What does that mean? Where are your adrenal glands and what the heck do they do? What does the pituitary gland have to do with all of this? What is cortisol? ACTH? DHEA? And the biggest question “why didn’t someone figure out sooner what the hell was wrong with me?”
Addison’s Disease is failure of the adrenal glands. Lifelong treatment with steroids is necessary. Until the development of steroid meds like Hydrocortisone, Prednisone and Solu-medrol, adrenal disease was ultimately fatal. I saw my Sister’s endocrinologist, I went to the University of Chicago Hospital, and I took a trip to Mayo Clinic in Minnesota. None of these doctors could make me well. I was told to take my meds and I should feel better. How many of us have heard that line? It’s bullshit!
Because my endocrine system is shot ( pituitary, adrenals, thyroid and ovaries) I am a hot mess. The most important hormone the adrenals release is cortisol. Cortisol is the “flight or fight” hormone, it helps you handle stress. Major stress, such as injury or illness, dehydration, low potassium levels, vomiting, fever or an infection can throw you into an Addisonian crisis, which requires immediate medical attention.
I have had many trips to the ER in an ambulance and too many hospital stays to remember. When a person goes into crisis, IV steroids must be given to keep the patient from going into shock. This can all happen very fast. I keep a supply of steroid injections on hand so, if needed, I can give myself a shot before I head to the hospital. Because I take steroids everyday, infection or illness can be easily masked. Just as people take steroids to help with inflammation from allergies, asthma or rashes, my steroids can hide a problem until you are very sick or in pain. In 2005 I had a severe diverticulitis attack without even knowing what was going on. The steroids kept the inflammation at bay and the infection hidden so I didn’t have pain. One morning I woke up in terrible pain and I ended up in the ER. An MRI showed a mass in my colon and I needed emergency surgery to remove and repair the damage.
There are so many side effects for a person on daily steroid therapy. It damages bones, the lining of the stomach, weakens your immune system, can cause cataracts, depression and insomnia. Even GOOD stress can land me in the ER. It doesn’t have to be something bad to affect your stress level, and with no cortisol, an Addisonian is in big trouble. Many times my family noticed I was in trouble and got me to the ER. Confusion is one of the first symptoms for me, and then I just get stupid. I don’t even realize what’s happening to me.
I have to wear a medic alert bracelet and I keep a list of all my meds in my wallet, as does each of my family members.
Addison’s is my major illness. I rarely think about the others: Crohns, Seizure Disorder, Hypopituitary, Hypothyroid, Endometriosis, Hypertension and Fibromyalgia (I think that’s it). All of my siblings have some type of auto immune problems. Spread among us is Hashimoto’s, Raynaud’s, thrombocytopenia, Endometriosis, and pernicious anemia.
I do not suffer with daily pain as so many of my “blog friends” do, and I am thankful for that. But, my life has been forever altered by this disease. Days, weeks, months and years have been robbed from me because of my inability to function. From one day to the next I never know how I am going to feel. Sadly, I have more bad days than good. My family has been there for me always and for that I am thankful. Addison’s Disease has attempted to take my life….but it hasn’t! I fight this S.O.B. everyday…and I fight like a GIRL!
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
God bless you girl. You are a very brave woman having to deal with all of this everyday. My thoughts and prayers are with you
Thank you Kathy, somedays I don’t feel very brave, but the support I get from people like you help alot.
Hey….hang in there…I have to let you know…You have taught me more than I had ever known about addisons disease (I don’t think it deserves a capitol). Addisons robbed me from my best friend who rescued me when I was diagnosed with end stage 3 breast cancer. I was told at recovery group to resue an animal…because anyone who thought they were gonna die …would not rescue an animal….so I did! I rescued my Westie…Murray…He gave me reason to wake up…then in my fourth year of remission…he got really…really sick….when it was too late…they decided it was addisons disease…I know what pain he went through in the two weeks he was sick. I pray for your happiness…for a cure…..and for strength for you and all who love you….I really didn’t know it was something that a person could get….Ignorance is abundant on my part…and for that I am sorry. I will always keep you in my prayers…I hope you are feeling better and stronger knowing people really care….
Annie, Thanks for your comment, I appreciate it more than you think. I’m so sorry about your dog, and yes it is seen in dogs often. I think I have met more people that know about dogs having it than people! Praying that you are in good health now.
I have elevated ACTH, but my doctor can’t tell me why. I’ve asked about Addison’s and Cushing’s, but he doesn’t “think” that’s it — he just can’t tell me WHY it’s elevated — it just is. I have RA and Lymphedema, but neither of those explains the elevated ACTH, either. I’m sorry it took you so long for the docs to figure out what was wrong with you — it’s SO frustrating!
Keep fighting like a girl, sweetie! I wish you all the best!
Mandy, Have you asked you doctor to check your cortisol levels? Simple blood test or 24 hour urine collection would give you so much information. I hate it when doctors won’t listen to their patients. Elevated ACTH should be looked at further to find the cause. Hope you can get your doctor to do something.
Your story makes me feel sad that you are going through so much. It makes my breast cacer fight seem insignificant. I will keep you in my prayers.GOD BLESS YOU & YOUR FAMILY
Debra, Thanks for your comment and your prayers. No one with a illness is insignificant, I’m sure you are an inspiration to everyone who knows you! Keep up the good fight.
Mo, I was diagnosed several years ago with Addison’s disease. I too, had been ill for years. After four Drs. took me in a room and told me I was just depressed and needed medicated one more Dr. came along and said lets take one more look. He introduced me to another Dr. who would be scoping me to look around. Lucky for me this Dr. was new to our town, on call that weekend, and a smart man! He asked to take my chart and look at it to try and find some answers. He called me three times that Sunday. He organized my chart and when he was done he said it was all right there if someone would have just looked. He asked me what had happened 17 yrs ago, I told him, and he said bingo. He ordered the test and I guess I “passed” with flying colors…I had a strong case of Addison’s disease. Since then I do feel better with the meds. It is an on going game with many new problems. Everyday I never know how I will feel and what I have to do to get through. Most people don’t understand .
I was diagnosed with Addisons disease a year and 1/2 ago, after many years of wondering why I was different than everyone else. I was fine , I thought, and if I was under stress, I wou;ld have to curl up in a ball for 4 days with a lot of stomach pain . If I got the flu- I would get so dehydrated ,I wound up in the hospital. , for years, I had , hypo- thyroid problems, low salt, anemia and horrible leg pain. Weird- Doctors just kept ordering endoscopy’s and Colonoscopy’s. and then told me I needed a shrink. No kidding!
all this went on at 2 of Chicago areas best and brightest hospitals. Slightly over 1 yr. ago, I got the flu ( again) at the lake and my Husband dragged me to the ER of Laporte Hospital, who promptly threw me in the ICU, and said I was almost in a Coma. HUH? I had been losing weight for a long time ( hence the Colonoscopy’s) I feel I was just fine– unless I was sick, which wasn’t often. now Iv’e gained 20 lbs. and am miserable. the more exercise I get the hungrier I am. , I now have cataracts, and might have a gallbladder problem. I know I’m getting older- but this is rediculous. The medical community tells me I’ll be fine, just keep taking the steroids– I’m wondering what the long term effects are– I seem to be aging rapidly.. Is this what I have to look forward to? never thought there might be a support group. Alone in Michigan.
I am looking for someone to interview regarding Addisons. I am a nursing student and need to present this as a topic with a guest speaker or interview as part of the assignment. Can anyone help me?
HI, I have had Addison’s Disease since 2000. It’s primary and was diagnosed after I passed out on a vacation. It’s rare and doctor’s don’t look for it. When I presented my symptoms, they gave me an oral inhalor to carry around. For the first four to five years I was bloated, gained weight until I could regulate the steriod and the florinef (for salt). I had three or four instances after being diagnosed where I had a crisis but really it was due to my lack of attention and self medicating. It was not easy but I carried on and remained successful in my business. You have to look at it like it could be worse, not walking, talking, etc. Exercise is crutial, as is anti-depressant for me.
With regard to the bones, eye sight and other issues caused by taking steroids, I think it’s important to see a holistic doctor who can advise on vitamins and hormone supplements.