Patient Comments: Addison's Disease - Treatments


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Comment from: Confused, 55-64 Female (Patient) Published: October 28

I am a professional woman who is 65 and gave had Addison’s and Schmidt's disease since I was 35 years old. I am on hydrocortisone, Florinef, and thyroid medication. I cannot stress the importance of working with an endocrinologist. I recently spent four days in the hospital after a very stressful event in the hottest of summer days. I did not know where I was or what I was doing. My dehydration was also severe. Keeping hydrated is key. As I age my exhaustion has worsened and I gave no appetite.

Comment from: Confused, 55-64 Female (Patient) Published: October 26

I am a professional woman who is 65 and have had Addison’s disease and Schmidt's syndrome since I was 35 years old. I am on hydrocortisone, Florinef, and thyroid medication. I cannot stress the importance of working with an endocrinologist. I recently spent four days in the hospital after a very stressful event in the hottest of summer days. I did not know where I was or what I was doing. My dehydration was also severe. Keeping hydrated is key. As I age my exhaustion has worsened and I have no appetite.

Comment from: golfer-63, 55-64 Female (Patient) Published: January 26

I am a very keen golfer and play regularly. My coach was trying to get me to turn more on the follow through, and this involves greater hip rotation than my previous swing. I was enjoying the new movement and greater power but after practice my hip joint felt 'stretched' and slightly painful. It felt as though a ligament or muscle has been damaged. I went to my local hip specialist and he did an MRI and concluded that the pain was from early stages of arthritis in the labrum area. I was not convinced because the hip is only painful with certain movements, and often has no pain at all for several days. It seems more like soft tissue inflammation to me.

Comment from: Kathy, 25-34 Male (Caregiver) Published: April 23

My son is 34 now, but was 20 when he was diagnosed Addison’s disease. The symptoms that stand out the most were fatigue, and a very short temper. That went on for about a year. He had had surgery for a pilonidal cyst about a month before diagnosis, so we both assumed the fatigue, dizziness, lack of appetite, were due to the surgery. But, he wasn"t getting better. I made an appointment with the doctor and my son was put through many tests, to rule out anything else. So, that was almost 15 years ago. He takes cortisone acetate 25 mg twice a day, Eltroxin 50 mcg once a day, and Florinef 0.1 mg once a day. (Cortisone and Synthroid in the morning, and cortisone and Florinef around lunch). Obviously, the medications do their job very well, but, he still suffers from depression, about a 6 on a 1-10 scale. One more rather peculiar, yet interesting thing about his diet is, he likes drinking pickle juice/water, from a jar of pickles. And he can"t get enough Clamato Juice! Perhaps he needs his Florinef dosage adjusted.

Comment from: Tracey, 45-54 Female (Patient) Published: January 14

I was diagnosed with Addison’s disease 3 months ago after being unwell for months. I was not eating or drinking very much or sleeping. I couldn't think properly, lacked concentration and became very grey looking. My mother died in July and my doctor diagnosed depression as the cause for all my symptoms. When my symptoms worsened I could not even keep a sip of water down or stay sitting up or holding my head up. My whole body ached and I told my doctor I felt I was dying. I was admitted to the hospital where it took 10 days to diagnose Addison’s. I had many blood tests and scans during the 3 weeks I was there and began to improve when I was given hydrocortisone and fludrocortisone along with high doses of vitamin D. I have not been able to return to work yet due to extreme fatigue. Over the last two weeks I've been fighting a stomach bug and a very sore throat so they doubled my hydrocortisone which has helped. I'm hoping I will improve and be as well as the text books say Addisonians get after treatment! Either way it's good to know I am not suffering from depression and I am feeling better than I was prior to diagnosis.

Comment from: Hope, 0-2 Female (Caregiver) Published: May 30

I was diagnosed with Addison’s disease at 35 years of age. I was suffering from all the various symptoms I have read about and is typical for Addison’s. My symptoms got progressively worse as my ailment was a mystery to many doctors as it is a very rare disease requiring a very specific blood test to uncover. Let me get to the most important and valuable part of my story. After being diagnosed and having Addison’s for approximately 6 years, I am now free of the disease. In the summer of 2016 I decided to give up meat with the exception of fish. In addition I greatly reduced my dairy and egg consumption. Now I did this not with the idea of health at the forefront of my thoughts. I have always been a huge animal lover and I made this decision based on my love of animals. I started eating foods that had never really been a staple of my diet, such as lentils, beans, chickpeas, a plant based diet.

Comment from: Jules, 45-54 Female (Patient) Published: November 13

I was diagnosed 3 years ago with Addison’s disease. I frequently, every 3 to 4 weeks visit my local hospital for fluid, lots of fluid! I find even with all these medications I take daily, stomach pains, vomiting, nausea, and diarrhea are still very prevalent in my life. My weight goes mental, up and down constantly but never reaching my goal of 70 kg. I'm tired all the time, am very dark, and still not a good sleeper! I can honestly admit I don't want to live with this horrible disease for the rest of my life! I want to be 72 kg, fit healthy sporty woman I was 4 year ago!


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Comment from: Cindy, 45-54 Female (Patient) Published: March 17

I was diagnosed with Cushing Syndrome in 1997 - I was grossly overweight and felt miserable all of the time. After many doctors I had a CT scan and found benign tumors on my adrenals. I then had a bilateral laparoscopic adrenalectomy. That was in 2003. I have lost weight, have darkening of my skin and feel exhausted all of the time. I now have low blood pressure which causes the fainting, I have had a few Addisonian crisis that have scared my family. All in all I manage pretty well. We should start a support group.

Comment from: jacqui, Female (Patient) Published: March 21

I have been suffering from nausea, vomiting, very fatigued, paleness, kidney infections, sinus infections and just recently started swelling in my face hands and feet this has been going on for about 3 years I have not be diagnosed with anything but I am 40 years old and can no longer be told nothing is wrong, I also have not been having a menstrual period for six months then all of a sudden start bleeding but was told in the emergency that it was not my menstrual period so why am I bleeding they seem to think that I am a hypochondriac which I am not please what should I do and where should I look to begin to see if it is possible that I have Addison’s disease. I have been suffering since I was a child symptoms have been more prevalent for about three years now need answers need to know tired of doctors thinking I am making this up or that I am a drug addict thanks sincerely.

Comment from: Addisonsurvivor, 13-18 Male (Caregiver) Published: March 07

My 14 year old son got sick and was diagnosed with adenovirus. Doctors said it was like Mono. He was hospitalized and given fluids even though he had no diarrhea or vomiting. His condition worsened. He could not sit or stand for very long. His blood pressure would drop for no apparent reason. He was very weak, and he craved salty foods. He lost 29 pounds over 10 weeks. His blood pressure would drop for no apparent reason. His skin darkened, especially his freckles and moles, they turned black. His speech was slurred, and he at times was confused. They were testing him for brain tumors and cancers. My friend's daughter (Brandi) passed away a few years ago and she thinks it was undiagnosed Addison's. I informed the doctors, and my son has it! He has been taking hydrocortisone and fludrocortisone for the past week. He is doing great!!!!

Comment from: Kat Mac, 45-54 Female Published: February 13

I was in my early 30's when I couldn't keep a conversation while walking on the treadmill. I just wrote it off. During the next 6 months it was like I was dying a slow painful death. While I was getting ready in the mornings, I couldn't stand up straight as I was out of breath (orthostatic hypertension). I had to bend over while showering and sit in a chair putting my make up on and drying my hair. I just hoped I didn't "drop" any of my patients as I was still doing my physical therapy job. I went to the doctor weekly telling her, I am not right, something is wrong with me." My journal entries during those days were dark. Ie," God if this is living, take me Home." This went on from October of 1 year until April of the next year I went to the ER, my BP was 50/30; my hemoglobin was 5 ( it should be around 14). I was knocking on death's door. Medications gave me life back, but still I had to learn how to "self-manage" my Addisonian crisis's. No one teaches you this. That was 15 years ago and living a great life.

Comment from: Tricia19, 65-74 Female (Patient) Published: October 01

I was diagnosed with Addison's disease two years ago and even as a nurse, did not realize what was wrong with me. Apparently as I had TB as a child, this was the cause of Addison's. Last year I was in hospital five times, but this year I seem to be more in control. I am 5' 2' and keep my weight at 52/53 kg, it’s hard sometimes.

Comment from: TagMan49, (Caregiver) Published: September 17

If you are out of options with the medical fraternity then I suggest looking at homeopathy, or find someone who is using the Indigo biofeedback machine. Those things can be amazing at rooting out the real issues

Comment from: chancy, 25-34 Male (Patient) Published: January 31

I was diagnosed with Addison’s at age 20 after almost 6 years of significant signs, symptoms, and times of crisis. I was told by several doctors over the years that I was just dehydrated and depressed. I have even been called a hypochondriac. My mom actually found it online and had the doctor run an ACT test on me and my levels were 1400. I have since been diagnosed with polyendocrine failure: addison's, hypothyroidism, cardiomyopathy. I'm on an aldosterone replacement. Have your doctor check this level if you crave salt, and a testosterone injection as well. I take OTC DHEA and it seems to help with my testosterone level. It has been almost 5 years since I was diagnosed and I still to this day struggle frequently to do the things a normal person can do but it doesn't stop me from pushing my limits.


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