Here you can view other Addisonian's experiences.
Please feel free to share your personal experience as an Addisonian. Others will be interested in how you were diagnosed, your coping mechanisms, how you react to the drugs, daily living as an Addisonian, etc.
Whatever you have been through, others are going through it too, and seeing how you have dealt with matters will help them.
Remember, in dealing with this condition, staying in touch is what it's all about.
Not Your Average Expedition
A 50 Year Chronicle of Living with Addison’s Disease
Susan Thomas - January 2021
I have essentially lived my whole life with Addison’s Disease. But what the mind harbours the body manifests. I have never thought of myself as being sick, just feels like I live with different levels of the flu some of the time.
What is Addison’s Disease or adrenal insufficiency that is indicated on my medical alert bracelet. I have read that Addison’s Disease is a destructive atrophy caused by an overactive immune system. Was tested for tuberculosis upon diagnosis, was negative. I am no stranger to experiencing allergic reactions though.
Had a set of Encyclopedias from 1935 that describe it as such: A disease associated with diminution of the functions of the suprarenal glands. It is characterized by a general depression of the mobility, as evidenced by pronounced muscular weakness, by anaemia, lowered tone of the circulatory apparatus, irritability of the stomach and pigmentation of the skin. This last symptom is the most pronounced and was fully described by Thomas Addison in 1855. The disease is more common in men between 20-40. The heart muscle also suffers very markedly, there being frequent attacks of rapid and feeble pulse with vertigo and fainting, sometimes fatal. Headache is frequent. In the pronounced types there is usually a severe disease of the suprarenal structures, most often a tuberculosis, less frequently a malignant disease. In mild inflammatory states of the adrenals, recoverable hypoadrenalemias may occur. Sudden death is a not infrequent result in acute hemorrhagic disease of the adrenals. A number of irregular forms of suprarenal disease are known, Addison’s disease being but one of the more pronounced and terminal states.
The starting point contributing to our better understanding today, I am at least 50 years of current history.
My younger sister was born in 1963 and passed away in 1968 during an operation for appendix removal. Thought to be her cause of ongoing sickness. The morning after she passed my brother 9 and myself 7 were in the care of a neighbour who reported seeing a small, bright light asking “where is my mommy”?
After that I always had the feeling I was going to die young. Several years later, I started feeling unwell all the time but not wanting to distress my parents anymore, kept it to myself. I was weak, easily nauseated, fatigued and dizzy. Symptoms were not very debilitating at first but over the course of several years the insidious nature of onset were becoming more problematic to hide from anyone. Just before my 13th birthday I was staying with my Grandparents for a week during which time I was starting to experience distress. Every morning in private I was so sick and couldn’t stand until I vomited, then I felt not too bad. I came back home in December and between then and beginning February I was seen by physicians and ultimately hospitalized. Even experienced a striping pattern along my back. I remember finally someone coming to tell me that they knew why I was sick and the next day I would be better again. Because an intern was working late on a Friday night, I was saved from the fate of my sister.
What followed was almost as distressing as the disease itself. Suddenly I was a celebrity, I remember lying in my hospital bed unclothed and my curtained area full of medical staff, poking, questioning and staring. This event happened many times, I was very glad to finally go home. But before I left hospital I was photographed, unexplained, unclothed, in my still sickly state. These dramatic events never leave you.
Six months after my Addison’s diagnosis, I started experiencing numbness on the full left side of my body. Randomly, the tingling sensation would start in my small finger and work it’s way very systematically down the tip of my finger to the next one and gradually down my whole thumb then up my arm. Down my arm and my side, down my leg to the tip of my big toe and again through each toe until it all ended in my little toe. As the sensation progressed down from top to bottom on the left side then the initial tingling would go away. The whole side of my body was not numb at the same time but in segments and would fully disperse after maybe 20 minutes. Then Wham! The headache was to follow. Debilitating. Tried many different ways to overcome the pain, sometimes distorted vision and nausea. What worked best was going outside and diverting my thoughts.
Back to the hospital. Was tested for brain tumours. Negative. This same pattern of debilitating migraines lasted for 10 years, less frequent as the years went on. Very seldom get headaches now, after stressful situations or trauma might experience an aura for 25 minutes and very little headache. Did not rely on any medication for any of my migraine history.
At the time prior to diagnosis, I knew I was dying, the experience being very peaceful. But after Cortisone and Florinef treatment I started to see the symptoms of extreme fatigue, extreme dizziness, extreme weakness, difficulty standing, nausea/ gastrointestinal disturbance, sweating, and not feeling like I was in my body seem to subside somewhat. There were still traces of all symptoms but not as severe , I also came to the early conclusion I prefer no attention to myself anymore. At the time of diagnosis I weighed 69 pounds, several weeks before my 13th birthday.
So now I am approaching my 20’s have had several relapses, in and out of hospital but I am working full time in Oil and Gas in Calgary. In my mid 20’s I had my last hospital stay, was feeling stable enough to start college and got married. Never did expect to live to be 20 so had some living to do before I didn’t make 30. Very important to get a post secondary education before I died.
Prior and during diagnosis, half my hair fell out and never grew back. I was touched very inappropriately during a hospital stay by someone in authority. I was now learning this disease isn’t for the faint of heart or personality. I have seen more stars than an astronomer, I have a 4 poster bed to keep me from loss of balance when getting up. The morning sickness has followed me throughout, different degrees on different days, I always feel better after 10:00am and my second dose of steroids in the pm even better.
I will lick, eat, drink, dream about anything salty. I feel better after eating protein, meat protein especially. First treated my very painful, debilitating stomach with Gelusil antacids, they now travel with me everywhere. Mint chocolates also seem to work in a pinch and Perrier sparkling water. I still experience nausea, not wanting to eat or difficulty touching and preparing food so I go get my favourite takeout. Have experienced extreme nausea if I eat too much before 10:00 am.
Now, my older brother. In around his 40’s he started becoming continually sick to the point where one year he was taken to emergency 52 times in one year. BC government sent him to the Mayo clinic and as far as we know he produces too much adrenaline and has a sensitive stomach. My two younger siblings 8 and 10 years after me display no symptoms of chronic sickness.
I was told point blank as a teenager that I would die having children. But it didn’t matter, I wasn’t going to live long. How could I feel that sick all the time and live a long life but have since discovered my scrawny little body can endure a lot. I didn’t know anyone with Addison’s so just went about it by trial and error on my own. Some days I still prefer to be alone so I don’t have to pretend I am well. Determined at a young age I didn’t want to be treated differently and once you feel sorry for yourself, your ship will sink.
So when the Kennedy’s physician came to spend time with me at the Foothills hospital in Calgary during one of my stays he was just part of the long line of very interested members of the medical community. I have seen documentaries on JFK, and it isn’t long until they talk about his experience with the disease and how he always thought he would die young, had his last rights read 4 times and battled chronic fatigue. It all sounded so familiar and I felt comforted.
Once the physical ailments are more under control, this disease becomes a mental exercise. I find myself talking my way out of the very uncomfortable parts. Have gone by ambulance 2 times, once for the flu and once for food poisoning. I was also stung by a Portuguese-man-of war jellyfish but could limp my way to hospital. I have broken my arm but drove myself home in a sling and stolen hospital gown. Obviously I didn’t stay home much. Between 20 up until 60 I have traveled to many inspiring destinations. The only obstacle I had was a bit of nausea, no injection kit or emergency letter at that time. Did have the opportunity at 59 to travel to Columbia but upon further research into live vaccines, was a risk to Addison’s patients, there being case studies of the live, mutated virus going back to its original form becoming deadly. Other than Yellow fever vaccine, have tolerated every other vaccine available.
So, in between feeling faint when I am hot, faint and sweaty when hungry, sporadic nausea, faint when I stand up sometimes, or hot and cold at the same time, things are quite stable. I do get reminded that ordinary healthy people do feel unwell at times. I do go hiking but do limit my physical activities to every other day or if I feel well.
I have gone through medication reductions from 7.5mg Prednisone daily to 3.5 mg. I understand the need for drug rehabilitation centres, very painful experience lasting months. Originally started treatment with Cortisone and Florinef, then in my 20-30’s switched to Prednisone 7.5 mg daily. Any medication change was painful as well. Then in my 50’s tried switching out Prednisone to Cortef, because of the longer half life I did feel I had more energy but soon developed a very debilitating reaction/ rash. Went back to Prednisone. Benchmark replacement on Prednisone has been explained to me to be 2.5mg daily to protect bone density but was a bit too low for me and an active lifestyle so currently at 3.5 mg. Quality of years not quantity.
So now I am turning 60. Made the most of my 20‘s, did not expect to live to 30, shocked when I turned 40, amazed at 50, unfathomable at 60. I have outlived 2 endocrinologists and the third is contemplating retirement. They provided medical support but again, nothing after I walked out the door. Thankfully an Alberta Addison’s support group is in existence now for those who are in need of extended one on one. I have always had a tendency not to micro manage the chemistry or over engineer anything I have read. Only you know how you feel and have to find what makes you feel better. Need to change your connotation of feeling well.
What gets me through the hard days is being mentally occupied, hiking, protein, lots of rest and low stress which is difficult to manage. When I used to frequent the children’s hospital and going through life, I am inspired by others in more challenging circumstances than myself.
And the colour purple, have read it stimulates the adrenal glands. Obviously my favourite colour.
Have come across a Globe and Mail article that Addison’s disease affected the doomed Franklin expedition. A professor of dentistry and colleagues have published a theory that seeks to explain why Inuit who encountered members of the doomed Franklin Expedition in the 19th century noticed the men had hard, dry and black mouths. Have come across medical literature that indicates tuberculosis combined with scurvy or lead poisoning can promote Addison’s.
My heartfelt thanks to Bernard Corenblum who has put up with my complaining over the years and always tries to pound into me I am the healthiest person he knows. My tough love angel.
I was diagnosed at 14yrs shortly after we moved to Vancouver. I grew up in the Dominican Republic and remember having many late night rendezvous (plural?) with the toilet for a few months before we moved to Canada. Lots of diarrhea, the famous enviable all-over tan, fatigue, and wolfing down entire bottles of olives, bags of saltines, etc in one sitting. I had a bad throat infection with swollen glands that summer, not sure how that played into the picture. We took our time getting to Vancouver, driving from Montreal stopping for many visits along the way. The fatigue increased dramatically on that trip - the day we parked the car in front of the church, I sat on the curb saying, I don't think I can make it across the street - that was the day I realized my parents were really worried. I still have a family pic from somewhere in Wyoming where I'm stick-thin, stooped over, propping myself up with my hands on my knees. I remember thinking I was famished and looking greedily at piles of food on the table, and then realizing I had no appetite and couldn't eat. Arriving in Vancouver we found a family doc and lo and behold he got very excited that I might be his first Addison's diagnosis. Turns out, lucky for me, he had studied medicine in the UK at the hospital where Dr. Addison did his research, or something like that. Dr. Riggs, don't know if you're out there, bless you for saving my life! I certainly had a happier transition from being sick to finding treatment than so many stories I've read, a gift I don't take lightly.
Some 35 years later I'm married with 3 adult children, have lived in the Dominican Republic, North West Territories, DR Congo, and traveled extensively. I have most definitely struggled with fatigue. My kids are quite accustomed to the days when zombie mom drags around the house. I'm the first to admit that I pamper myself the moment I feel tired. I have the luxury of not needing to work for financial reasons, as well as having a doctor husband who I rely on heavily for health support. These days I only work part time and volunteer. The times in my life when I have been closest to crises were the 1st trimester of pregnancies and just this year for some unexplained reason. I'm feeling a little paranoid about looming menopause and how that will affect my hormone imbalance. I have one other immune disorder so far - Discoid Lupus, though I know life offers no guarantees.
A couple of things that helped me: when my kids were young I stumbled through the days from one thing to another and would discover mid-day or later that I'd forgotten to take my cortisone - my sister suggested I use velcro tape to stick my pill box to the top of the fridge door where I could be reminded but it would be out of reach from the kids. That was revolutionary for me as I couldn't keep meds in the bathroom or on the kitchen counter.
Second thing is more recent: I keep my morning med in my bathroom and my afternoon med in the kitchen. Took me this long to realize the huge difference it makes to take that cortisone as early as possible - I've started taking the first dose when I wake up to pee, anywhere from 4 to 6am. What a huge difference in both my energy and my ability to fall asleep at the end of the day. Goodbye (I hope!) vicious cycle of sleeping in, taking meds late in the morning and evening, lying wide awake for hours at night, going crazy to find a sleeping aid that helps. Again, revolutionary for me.
And I am finally realizing how critical it is to rehydrate when I exercise, hike or do anything strenuous. Never been good at dragging bottles of water everywhere, but I've discovered the huge difference it makes to my stamina.
Now that I'm menopausal I recently noticed my fatigue levels decreasing. I should note that I was 33 when I was diagnosed and in a state of crisis. Over a 2 year period I had seen 8 specialists who kept telling me that I was depressed. No one did a blood test. So I was diagnosed in emergency, bright orange,with tachycardia and I weighed 92 lbs. During a recent visit to my endocrinologist we were discussing whether or not I should start HRT's and the subject of DHEA came up. I've read enough medical journals to know of it's benefits to Addison's patients. I have to get the prescription filled at a compound pharmacy, but the benefits have been huge! No more muscle pain (particularly in my legs) and increase of energy, and I feel more alert. DHEA is not recommended to just anyone due to the links to cancer but this is not the case of Addison's patients It's a great supplement for us. I also take bio identical HRT's and which have been very beneficial to my overall health.
I am 73yrs old and have had Addisons disease for about 17 yrs. On NOV 1st last year I was admitted to Victoria Hospital here in London suffering from a severe reaction to an antibiotic, within 2 days of the first pill I was unable to swallow, could not get out of bed, constantly bringing up phlegm, the whole body was shutting down. At the Emergency I had a hard time relating that I had Addisons, but my wife later brought in the Hospital protocol papers and other info and I was later put on a hydrocortisone drip. They still had to find out what was going on with my body. I was in hospital 11 days, and 3 days at home on some intravenous fluid, but slowly recovered. Before leaving hospital I was back on my regular pills for Addisons, and came through the ordeal. Recently, I have been through a quadruple bi-pass of the heart, surgery on the 22nd of April, and released on the 26th. At the pre-op I told them of my Addisons and gave the team the hospital protocol papers and other info , and was satisfied that all would be dealt with. This surgery was done at the University Hospital here in London. Going into surgery a drip on hydrocotisone was ready, and things out well. After 2 days the drip was removed and I was put on my regular pills [cortisone acetate]. Things worked well in both cases as far as the Addisons was concerned, now 6 weeks of recovery success.
My story seems to be quite different then everything I have read online so far. In 2007 I was diagnosed with a disease called Lymphocytic Hypophycytis. But my problems started a couple of years before this. Lymphocytic Hypophycytis (LH) manifests during the 3rd trimester of pregnancy. In December of 2005 I had my 2nd son. I noticed I was not recovering as well as I did with my first, but I just figured I was tired and lethargic because I had 2 babies very close together, and my 2nd son was a very difficult baby. These issues continued to the point that I found it difficult to even move. My muscles were very weak and I could have slept all day every day if someone would have let me. I was getting very down and had very little interest in what was going on around me, and at that point, if I'm honest, I didn't care. I felt so awful. But everybody around me had a different opinion of what was wrong with me. Some thought I was just being lazy and kind of wrote me off, and my husband and parents decided I had postpartum psychosis. So in February of 2007, they had me admitted to the psych ward of the hospital. I spent 4 1/2 weeks there. And if they thought I was out of it before I went in the hospital, you should have seen me when I got out. They had me on so many meds, I could have started my own pharmacy. Unfortunately, not one of those meds was addressing the actual problem I was having. The hospital actually didn't do any bloodwork other than to check to see if I was on drugs. Finally at a follow up appointment with my OB (which I barely remember due to all the meds I was taking), he sent me for the right bloodwork and when he got the results, called me and got me right in to see an endocrinologist that worked in the same hospital as him. The way LH is supposed to work is during the 3rd trimester of pregnancy, the pituitary gland stops producing, or stops stimulating the production of all hormones. At this point, one would be put on replacement for the remainder of the pregnancy, if it's discovered. After birth, the hormones slowly start returning to normal. That's how "normal" LH works. It turns out I have a "variant" form of LH. All my hormones returned to normal except my cortisol, TSH & free t4, and estrogen. In my situation I don't produce any ACTH at all. So I have been taking Cortef since 2007 and Synthroid as well. I have tried every birth control on the market for the estrogen situation and have ended up with a whole other set of gynecological problems, but that's a whole other story! I wanted to note that as I was reading the newsletter, I noted the letter to Dr. Killinger about the person who had been diagnosed only 1 week prior. After I started taking Cortef and Synthroid, in the initial year or so, I felt better. Not normal, but better. Enough that I could have a quality of life. Since then things have been very difficult. My lab work has shown my levels are normal (for the most part), but I can honestly say, I feel crummy a lot of the time. I still get tired regularly and have to plan my days accordingly. I'm only 37 years old (I was diagnosed at 31) and I feel like I'm 90. It's very frustrating. I really appreciate reading other personal experiences and especially the symptoms others experience. It validates my feelings/symptoms and reminds me that I'm not crazy. It's very hard for the outside world to understand what you're going through when there is nothing visible. You end up being the lazy one because you're tired all the time. So thank you to everyone for being so open and honest. I have finally felt like I am not alone.
I was diagnosed with Addison's May 2012 after two years of suffering, seeing specialists, tests, etc. Like so many others I had no answers and was relieved to have a diagnosis. I am a teacher and took May and June off to recover and started back to work full-time in September. Since returning to work I have had good days and bad, and have been back in the ER twice. I am a mother of three young boys, (9, 6 and 4 years old) and think maybe, despite my diagnosis, treatment and positive attitude that Addison's is not who I am, I think, right now it is winning. I am taking another leave from work. Is this common? How long till I can manage life again? Will I ever work full-time, manage my family, etc? I know many think that it is just physical stress but I can not ignore the emotional stress and how it too is taking its toll on me! Can anyone else relate?? I also believed that now that I have a diagnosis, my arrival to the ER would result in immediate help and treatment. How naive was I!!! Both visits, I have had to FIGHT for steroids, been told I do not need them, I have a migraine like many others, etc. My BP is 78/36!!! I have contacted my local hospital and will write a letter of concern and hopefully will have a course of action on my file for next time I present!
Wow! There are so many of us! I'm sad that we have to be sick with this disease, but I'm learning that Addison's does not define me!! I was diagnosed Feb. 2012 at 33 years old. Same story as everyone else, excellent tan, nothing tasted good, big time craving for salt (couldn't get enough pickles!) I was lucky, the ER Doctor that diagnosed me was familiar with the disease and it's symptoms. I had seen other Doctors at this same ER several times within a 1 month period and they would send me home with no explanation. So, I believe there is still some educating needed for medical professionals. I read some where that Addison's is an insidious disease, and I'm not sure why, but that word "insidious" resonated with me. I remember being confused a lot. What the heck is happening to me! Was a common phrase. Why can't I walk up the steps without loosing my breath, why can't I stand long enough to blow dry my hair, what is happening to my skin, why am I so tired all the time. When I was diagnosed I threw a little bit of a pity party for myself, but that only lasted a week or two. Shortly after I felt lucky to alive, happy that Addison's is treatable and that if I pay attention to my body and stick to my medication, I can live a healthy, productive life. So that's where I'm at today, glad to be here. I've started an intense workout regiment, "crossfit", which is awesome and has helped me regain most of my strength back. I hit road bumps from time to time, but these last 6 months have been very revealing. Remember, you have Addison's, Addison's doesn't not have you!
As I type this I cannot help but find myself tearing up reading all of the articles. I always hear how strange this disease is, and at times find myself having to explain to the nurse what Addison's disease is or how to spell Florinef because they haven't heard of that, but I get sad at the thought of so many others suffering from this terrible disease. My story started when I was 14. It was a very hot summer and I spent most of the time outside riding my bike or playing with my friends, well until i would get tired and had to go inside to rest, I got a terrible tan that year, or so my mom thought. I was extremely dark but still fairly healthy. I soon started with an insatiable appetite yet i was losing weight, nausea, dizzy, weak and just getting more and more dark. My mom is Hispanic and my dad Anglo so I thought well it's just my color. I quickly became very ill and ended up in the hospital for 4 weeks. They had no idea what was wrong with me. When they finally figured it out the doctor's came to my room to share the "great" news with me, I had Addison's disease and would start feeling better soon, that is after taking the 14 pills I had to take a day :(. To help me feel better the doctor's told me that John F. Kennedy had this disease, my response.. "and he's dead!" I was being difficult and feeling confused. Seeing my parents agonize day in and day out without being able to help me was difficult to watch. Well that is how my story began. A "normal" life is possible with Addison's disease, you just need to listen to your body. If you are tired, rest. Sleepy then take a nap. I try to take my meds at the same time each day, expect the synthroid for my hypothyroidism(yes I got that too), I take that an hour after the other meds which include Florinef and Hydrocortisone. I am a mom of a 15 year old healthy daughter and healthy twin boys that are now 10. I had to see an infertility specialist to help me get pregnant because our ovaries are glands too and they needed some help too. My biggest issue is completely cosmetic, I hide from the sun so I won't get darker, I have some spots on my lips that i cover with a lip tint (works great) and my dentist is the only one that looks inside my mouth closely enough to notice the dark spots. I am constantly getting compliments on my great skin color, if they only knew... for now I'll keep that little secret all to myself! I have been a successful businesswomen for 25 years now, rarely miss work due to being ill and enjoy a full and complete life. Addison's disease is a disease I have but certainly not what defines me, don't let it define YOU! Good luck and stay healthy!
I felt very unwell for about ten years before being diagnosed with Addisons. My mouth was discoloured inside, my skin was darker, I had lost weight. My dentist thought that my I had black relatives and that was why the inside of my mouth was purple like. After being hospitalized twice two years in a row with what the doctors thought was the flu I finally was diagnosed wrongly only to have it changed after sending blood samples to Toronto and having steroids pumped into my thigh. I was put on prednisone but ended up in emergency after my muscles completely seized up in my body. The doctors in Emergency felt I was suffering from a panic attack and, as my potassium was extremely high, asked me what I ate to cause it. I was sent home with a couple of tranquilizers and a couple of days later my family doctor called me to come in and added Florinef. That controlled my blood pressure enabled me to get out of my chair and stand and walk again. I feel reasonably well now. Have been in hospital 4 times with a crisis since 1990. I have to try harder to control the way I react to stress as that is what can pull me down.
I was diagnosed 12 years ago though I most likely suffered from Addison's long before. Like most others, my diagnosis came at the eleventh hour. Two years ago my Addison s disease became unstabilized. I've been struggling since then and have been hospitalized five times in the last year. I was the executive director of an association for several years but I haven't been able to work. My LTD claim -strongly endorsed by my internist- was denied by The Co-operators Insurance Company (Canada). I have hired lawyers to file a lawsuit against the company. I take the time to write this because I want to know if others have had the same experience.
How do you write something when everything is so fresh and you feel sorry for yourself? Pity parties are not my usual self-talk. But there are those days when I want to hide away and run as far as I can from anyone and everyone.
In 2000 I had my large bowel removed and half my stomach. It was a rough go but the worst part was I developed Sepsis and was in Intensive Care for six weeks on life support fighting for my life. My heart rate was high and had I not been a long-distance runner I would not be sharing my experience with Addison’s today.
One of the problems I experienced after my surgery was chronic and explosive diarrhea at least ten times a day, I had to learn where every washroom was within a fifty mile radius. Well to say the least there were many other recovery problems. I ran on empty so I wouldn’t crap my shorts….however; this happened many times in spite of my best made plans. It took a few years to get things under control, my whole life changed. I lost weight, and had to learn to drink lots of Gatorade and eat everything I could to put weight on and keep it on. It was another struggle to say the least. There were many days when my body weight went down 8-10 pounds. Now most of that was fluid but never the less it was what it was. Through all of this I worked very hard at my running and developed really good butt muscles holding in everything that was liquid. I seemed to be getting better but there were those days that I wanted to tell the world to leave me alone.
In 2005 I moved from the Toronto Ontario area to Edmonton Alberta to be with the love of my life. My energy was good and my running was not great but it was okay. I felt like a new person. My wife and I renovated our house and did a lot of work to make it comfortable for both of us. During this period I began to get a lot of abdominal pain and developed some real nasty adhesion's from my previous surgery. I was given a choice of some real good feeling pain killers by mouth or a low dose of duragesic by patch. I found the patch to work the best and became normalized to it. I had no doubt that if I had taken the pills it would be a matter of time until I had to increase them and eventually my thinking and feeling would be down the drain. I found the duragesic allowed me to function and I didn’t have to keep popping pills. Part way through the renovations I found myself running out of energy. It was a real weird feeling and as much as I wanted to keep going I just didn’t have any energy what so ever. One of the things I started to crave and couldn’t get enough of was sugar and salt. My body craved salt and everyone said I was eating way too much salt. In 2010 I noticed that no matter how much I ate I could not keep my weight on and I lost about 30 pounds in six weeks. I went from 185 to the mid 150’s in no time at all. I was always tired and drained. I had no doubt that the cause was from not having a large bowel to absorb fluids. I increased my fluids, and kept up my food intake but to no avail. Finally after a long drawn out attempt to find out what was going on and after a variety of blood tests and ACTH tests I was diagnosed with Primary Addison’s. Can you believe it 59 years old a retired pilot and avid shark diver and low and behold another blessing to learn to live with.
My internist started me with Cortisol tablets 25mg per day. I took 10mg in the morning and 10 mg at lunch and 5 mg in the evening. I was also put on Cortef .01 mg twice weekly. The first week was heaven and then everything went downhill again. For the first month I was getting that crash that we all hate and no energy to do anything. During this period we found out my Iron was so low that I had to go through an Iron Infusion over three days with 48 hours in between each infusion. During this period I was only getting about 2-3 hours of sleep a night. After a month I found the cortisol to be so unpredictable that I had to see my internist and low and behold we came to the conclusion that I was just not absorbing the pills. So we started a new dosing routine, I found that if I took one 10mg. pill at 4:30 in the morning and went back to sleep it took and helped. The next dose was 10mg. at 8:30 in the morning and it was by injection. Then at 2:00 p.m. I took another 10mg. by injection and depending how I felt at 4:30 p.m. I took either 5mg. by pill or nothing. It has been two months since I started the injectable routine and I have had perhaps two crashes where I just had nothing to give. One month ago I started 200 mg. of Testosterone long acting which should also help with my iron. I also started a new medication DHEAS which has really helped with my sleeping. I take 25 mg in the morning and 25 mg in the evening. I will keep you posted on the DHEAS.
So there it is, who would have thought that just turning age 60 I would be learning to live with Addison’s. I am hopeful that I can return to my running and return to a quality of life I can be comfortable with. I carry my Alberta Addison’s protocol and my emergency kit everywhere I go. My family Doctor has been great and is a partner in my health care. I think my wife likes giving me the injection in the butt to a little too much but it is a small price to pay for everything she has gone through with me on my journey. Things are coming along slowly and I am sure there will be some ups and downs but it is getting there. I also found that my emotions are all over the place but I hope that the Testosterone will help to deal with the feelings. The other medication I take is the B12 injectable once a month.
I also found that reading everything I can and trying to learn as much as I can allows me some comfort that I am not alone on this journey.
I would like to thank all of you who took the time and courage to share your story with the Canadian Addison’s Society as I have found it very helpful and really supportive.
All the best.
I worked all day at my hospital as a lab technician on November 11, 2009. I felt absolutely fine all day. At about 5 pm, I felt a strange feeling in my stomach, one that I had never felt before. I had to lie down as my energy level suddenly dropped. After about an hour, I began vomiting and just felt done in. This was at the same time H1N1 patients were coming to the hospital so I thought maybe I had that. Four hours after initially feeling unwell, I decided to call an ambulance, something I had never done before. It took everything I had to pick up the phone to dial. After arriving at the hospital and being put into a trauma bed, which I knew was a bad sign, I was given lots of IV fluids and had many blood tests. My blood pressure was 60/40 so they were very concerned. Seven hours after my arrival, I was air lifted to Toronto hospital because I was very ill and they were unsure if I would survive. I was put on a Leviphed drip three times to try to increase my blood pressure and save my life. It finally worked and I began to feel better. All tests for H1N1 came back negative so doctors were unsure what was wrong. The next day I was taken back to my hospital to spend 7 days there, during which time an iternist, to whom I am very grateful, ordered a cortisol test. When that came back abnormal, he ordered others and determined I had Addisons.
Even now, I have a hard time writing this. The doctor told me that if I had stayed home, and not called 911, my husband likely would have found me dead on the couch the next morning - I have three little kids, who could not lose their mommy.
This is why I urge everyone to call an ambulance if you ever become really ill, really fast. A lot of people would stay home and hope to feel better in the morning but I am urging everyone to call an ambulance if in any doubt. Even if it turns out to be the flu, thats OK; this is why health care workers are there. I am so thankful that things went the way they did and I know Remembrance Day last year is a day I will never forget!!!
I was 12 in 2004 when first diagnosed with Addison's disease. I was always a rather small child, but that was attributed to my premature birth.
At the start of seventh grade I would wake up feeling like I was going to collapse, do my chores, eat breakfast and proceed to vomit it up. My mother believed that I wasn't bathing (which in fact was not true), because the skin on my joints was so dark I looked as if I were black, the rest of my skin had a yellowish cast to it. During my days of illness, I felt extremely dizzy, depressed and I couldn't interact with others because it sounded like they were yelling when I was talking to them. I began to faint and I was in a living hell (quite literally).
I went to a doctor due to a strange discoloration on my toenail which had been there over a month, and was then referred to an endocrinologist in Loma Linda, who gave me liquid cortisol and a bag of chips. I immediately felt better. In three months after starting to take cortisol and fludrocort. I gained thirty pounds. During this ordeal I had extreme salt cravings and difficulty breathing. I owe my life to my doctor and my mother.
Through this ordeal, I have learned to appreciate the simple joy of being able to walk and run and feel normal. I am so glad I am able to share my experience with others. I am now attending my senior year in high school, and I hope to be a fire fighter in my years to come.
I was diagnosed in 2002 when I was 8 years old.
The first time I went to the doctors before I was diagnosed, I had lost a lot of weight, was constantly tired, and was craving salty and sour things. My doctor sent me home suggesting I eat more red meat and have lemon and water with dinner.
3 weeks later I was still feeling sick, and had gotten much worse, feeling weak, vomiting, sleeping alot, continued to loose weight and had skin pigmentations. I was lying in bed, feeling feverish. My mum checked my feet and freaked out a bit when she saw they were very purple, as if my circulation had been cut off. She took me to the after hours medical centre where they immediately called an ambulance and I was taken to the hospital, an hour away. I was severely dehydrated so had a drip put in while in the ambulance. I stayed at hospital overnight and they diagnosed me with "a new Wellington flu" and sent me home with no instructions or medications except "bed rest".
2 or so months later, I started vomiting one morning on my way to my grandma. I stayed there the night, vomiting severely and feeling very weak and feverish. The next morning I could hardly walk and after collapsing several feet from my bed, my grandma called an ambulance. While in the ambulance, I fell unconscious this time and was taken straight to the emergency room where they put a drip in me (again severely dehydrated- so much so the doctors were shocked) and stayed there for a few hours before being taken to intensive care. I stayed in intensive care for a couple of days while they did various tests, none of which I remember. They tried to diagnose me with several conditions such as kidney failure and other organ issues. Still not getting better, I was being stuck with tubes, and they were taking blood from me nearly ten times a day. After 8'ish days, they finally diagnosed me with Addison's disease and after taking the medication, began to feel better. I stayed in hospital for a few more days while I recovered, leaving after 12 days (the very same day the twin towers were hit).
I don't remember much of my time in hospital because for the first week at least, I was mostly unaware of anything and too sick to notice much except some of the painful tests. They weren't sure I would recover and told my parents this in the first day or so. They later told me if I hadn't come in when I did, I could have developed brain damage,or worse I could easily have died. I also don't remember being told I had Addison's, but I do remember being given my pills for the first time. I also remember many doctors coming to see me after I was diagnosed, bringing their students along as I was a patient who had a condition none of them had seen before. They were all very interested and told me I was very special as they had never seen another case like mine. After I left, I didn't go back to school for another two weeks, and from then on began to gain back weight, energy and my natural skin colour returned.
I'm now 16 and haven't had another Addisonian crisis since.
I would like to share an experience I recently had, during an Addisonian crisis.
In the Capital Health Region of Edmonton, we were successful in having a Hospital Emergency Protocol developed for Addisonian's in crisis. Just recently, I became very sick in a very short time, (within 1/2 hour of feeling stomach upset).
I went by ambulance to the hospital (I gave them a copy of the hospital protocol), and they started an IV immediately. The appropriate treatment was started within a short time of my arrival, and I was admitted for 2 1/2 days.
Prior to having this protocol available, it was a very different story when arriving at emergency. Getting past the triage nurse was the first big hurdle to overcome (not really their fault - they are unaware of the urgency of an Addisonian crisis). I had also observed a doctor reading a book to see what this "Addison's" was all about! A little scary to say the least.
I urge all members of various support groups to endevour to have a protocol developed for your region. It makes a world of difference! Good luck!
I was diagnosed with Addison disease November 12th this year. In May, I was admitted to the hospital for three weeks. I had severe vomitting and diarrhea. We, and the doctors, thought it was food poisoning. I received 18 I.V. bags in a matter of two days. I didn't know the day or the year, and I was even told I started talking with a foreign accent (which I don't have). At first I was diagnosed with a thyroid gland problem.
Ever since then, my life, like all of yours, has changed. I was admitted to the hospital four weeks ago for a second time. I couldn't walk on my own, see straight, my stomach ached and I was dizzy. I felt like a train had hit me. Another two week stay, with scopes, blood tests, I.V.; the whole nine yards. I was probable for either Addison's or Celiac disease. The final outcome was Addison disease and I'm taking medication to hopefully balance my body's needs.
This last week and a half, I feel like a new person, like I've been given a second chance at life, for my wife and daughter. I love them for helping me. I'm a newby of sorts, I'm learning, but do not know everything yet about the disease.
Now that I'm menopausal I recently noticed my fatigue levels decreasing. I should note that I was 33 when I was diagnosed and in a state of crisis. Over a 2 year period I had seen 8 specialists who kept telling me that I was depressed. No one did a blood test. So I was diagnosed in emergency, bright orange,with tachycardia and I weighed 92 lbs. During a recent visit to my endocrinologist we were discussing whether or not I should start HRT's and the subject of DHEA came up. I've read enough medical journals to know of it's benefits to Addison's patients. I have to get the prescription filled at a compound pharmacy, but the benefits have been huge! No more muscle pain (particularly in my legs) and increase of energy, and I feel more alert. DHEA is not recommended to just anyone due to the links to cancer but this is not the case of Addison's patients. It's a great supplement for us. I also take bio identical HRT's and which have been very beneficial to my overall health.
I had been suffering from weakness, fatigue, vomiting, loss of appetite, dark tan, weight loss, pain in legs and shoulders, craving for anything salty and not being able to stand which made shopping impossible. This went on for four months. My Doctor thought I might have stomach cancer and made the necessary appointments. I must say at this stage, the doctor had carried out loads of tests, but could not find anything wrong.
One morning, I tried to get out of bed and it was very difficult. I managed to get to my computer and sat there most of the day trying to find out what was wrong with me. In the end, out of desperation, I typed in all of my symptoms and up came Addison's disease. I saw my doctor immediately and the first thing she did was look at the inside of my hands which had brown lines. I was admitted to hospital for 9 days after seeing an endocrinologist and I am taking hydrocortisone and florinef and things have improved greatly.
In 1979 I was diagnosed with hypothyroidism, followed by vitiligo in the mid-1980's, and finally with Addison's Disease in 1998 at the age of 32. Prior to my Addison's diagnosis, I had been feeling increasingly unwell for 8 years. It started with a strong craving for salt and feeling tired. By the end of the 8 years, I was extremely weak and exhausted, had trouble with stairs, vomited every day, was dizzy and itchy all over, and was very thin and in a lot of pain because every joint in my body was inflamed. My skin darkened significantly but because I had vitiligo, I had patches of very dark and very light skin. Overtop of this, I experienced an extremely high and unrelenting libido, which was anything but 'fun'. I cannot quite put into words what it was like to experience such exhaustion and intense libido simultaneously. I was too embarrassed to mention this symptom to any doctor, and silently endured it. I began to consider suicide to end my horrid existence.
I had been to a well-respected endocrinologist in Toronto and he warned that I might develop Addison's disease because of my other autoimmune problems. A few years later, when the strong salt cravings started, I told him that I thought I might be developing Addison's. He laughed and mocked me! He said "What are you doing? This?" as he pretended to shake salt into his mouth with an imaginary saltshaker. I was so upset and humiliated that I left his office for good. I went to my new GP, told her I was in danger of getting Addison's Disease, asked her to monitor me. In the end, it turned out she had no clue about the disease. I continued to request regular cortisol tests, until the point when she tersely told me that I had mental problems, was anorexic, and did not have Addison's Disease. She had put me on anti-depressants for 3 years and sent me to a psychiatrist (who determined I was not anorexic). I argued for one last cortisol test - and the results came back so low, that she said it must be a mistake and ran the test again. The results were even lower. By chance, she was talking to an endocrinologist (about another patient) and happened to mention my results. The endocrinologist sprang into action - and I was directed to go to her office immediately as I likely had only a matter of hours left to live. I started on the prednisone and florinef that day. But, because I was so far gone, it wasn't enough to turn me around and my heart began to beat erratically during the next two days. I ended up in emergency where the endocrinologist ran the hydrocortisone by intravenous, but I was still not recovering. She gently told me "we’re having trouble keeping you here" and asked for permission to triple dose me with steroids in an effort to shock my system back. I said 'sure'. At that point, I was welcoming the thought of death and being released from my suffering. But, I survived. And, over the next couple of days the pain, nausea, exhaustion and overactive libido started to dissolve away. I could not believe how wonderful it felt to be pain-free. It took about two years to fully recover from the whole experience. I gained 40-50 pounds during my recovery.
Since then, I have been very well. My daily meds include: 15-20 mg of hydrocortisone, 0.05 mg Florinef, 0.112 mg Synthroid and 1.5 mg Estradiol. I control my hypoglycemia through diet.
The support and understanding of my family has also played an important role in keeping me healthy.
I have thought about telling my story many times over. It is still hard to think about it now. I was 37 years old and up until that point hardly ever sick. I started feeling weak and dizzy. My legs and arms often felt very weak. I went to my G.P. He told me I probably had a virus or inner ear infection. I continued feeling poorly. I now had more nausea, which resulted in vomiting infrequently, as well as weight loss. I went back to the same doctor who did blood tests. He said if I could bottle and sell my good blood, I would be rich. It was just a virus and would take time. I waited to feel better, I got worse instead. I lost 20 lbs in one month. I went back to see another doctor at the clinic. He seemed to think there was nothing to worry about. I continued my downward spiral. I was so weak and tired all the time. I had two children to look after. I forced myself to be normal. I went to a third doctor who also seemed to think it was in my head or was this infamous virus.
We had a vacation camping coming up and I decided, since they said it was nothing to worry about, we would take the family camping. I camped, I hiked, and canoed, all the time feeling so ill. It was my son's birthday and we decided to go out for a fancy dinner nearby, I forced myself to be okay again. The minute we left, I was sick. I started vomiting. I talked with my husband and we decide to cut the vacation short. We got home, thank God. I woke up the next morning vomiting constantly. We went to the local ER. The last thing I remember was telling my husband to get someone fast. I had intense pain in my chest, like a heart attack. Nobody thought it was my heart - I was too young. They brought me to a room where I continued to tell them I could not breathe and I had severe pain. My heart stopped beating. I had to be shocked. I was in critical condition. Nobody had any idea what I had. I was sent to the Sacré Coeur hospital in Montreal. My heart stopped twice on the way there. I was unconscious. My chances were slim to none. My family was told to prepare. I swelled up with fluid all over my body until I was unrecognizable. My heart and lungs were full of fluid. I had toxic shock and septic shock. I had to have emergency surgery. I had a tampanade of the heart. The fluid was around the sac of my heart. I was critical and in intensive care for six weeks. I needed to have two more lung operations to drain fluid. My kidneys failed as well and I was put on a special dialysis machine. Every day was critical. They still could not find my problem. It was Addison's disease, but with a difference. It affected my heart. No other disease was quite the same as mine.
Through hard work and intensive internet searches, my doctor and the team finally found two other people in the world at the time who had what I had, or had been diagnosed with it. I started treatment with prednisone and florinef and salt. I had also had to have a tracheotomy. I was holding my own. I got taken off the dialysis. My long struggle to come back took lots of time. I had total muscle atrophy. It was like I was paralyzed; only I could feel. I just could not move anything. I had to have physio every day. I had to be lifted to a wheel chair or other bed in order to move; it was like I was in a crane. I had intense pain all the time from my chest - a crushing pain. I thought I would die every night as I lay there. I cried constantly, especially when my family had to go home. I couldn't. I stayed there for 4 1/2 months. I was starting to walk with a walker. I went to our local hospital for another two weeks. I was let out but would continue physio at home and at a rehab to get my muscles back for four more months and then on my own for a year. I still had lots on pain in my rib cage area and chest. I was told my heart was okay and I was now covered by the cortef I was now taking. This changed my life and how I looked at everything. I try to appreciate every little thing, especially family and nature. I now know life can be taken away in an instant, no matter how old you are. That we should do the things we want to do now, not later - we may not get it. To prove to myself and everyone else I was going to be okay, I went to work after being a stay-at-home Mom. I had to travel for an hour twice a day, then work eight hours. It felt so wonderful to be able to walk, and do what other people do everyday.
That was eleven years ago. I am now 48 years old. I work out at a gym three times a week and have built up my stamina. I have been doing this for three years. I just finished getting my certificate to become a personal trainer specialist. It is something I really want to do. I know what it is like to feel weak, and to have to start from nothing and work your way back. I have done this several times in my life. I want to help people get in good health, no matter where they are starting from. I need to learn a lot more but I have time.
I had Addison's cardiovascular. Extremely rare. It could have been caught earlier. It was four months seeing three different doctors. No one did tests. I did not show dark skin, as it was summer. I had a tan by the time I crashed. I was young and looked to be healthy. Why did they look no further? What would my life have been like had they found it (Addison's)? I still remember so many horrible days and nights. But have gotten on with my life. I have had episodes where I am low in cortisone when I am sick. But over all, I am in better shape than a lot of people, and I never take it for granted.
Thank you for giving me the chance to finally tell my story. There is a lot more I could tell, have forgotten or left out. I hope people reading this can learn from it. - doctors, people who live with Addison's and their families.
I am doing alright.
In the fall of 1968, I became very ill. I had 3 young children to look after, 7, 4 and 18 months.
I had to have my Mom come and look after them when my husband was at work. Every morning I was very sick to my stomach and extremely weak. I had trouble getting up and down stairs in my home, I also experienced great weight loss. Our Doctor finally admitted me to hospital; they thought I might have had a breakdown. While in hospital they discovered that my electrolytes were very low. They finally figured out why I would eat a whole lemon and jars of homemade pickles at home, my body needed salt. When I had been in hospital about a week, my Doctor (who was also my friend) came into my room and said he thought he had found out what the problem was and after consulting with my internist, said I had Addison's Disease. He started up the IV with the proper medication and within a few days I was feeling a lot better.
When I got home, my family was very happy. The diagnosis was confirmed with Dr. Volpe, a great endocrinologist in Toronto, who also found I had Hashimoto's thyroiditis. I take 25mg of cortisone in the am and 12 1/2 mg at night. I take 1/2 of 0.1mg of Florinef and .05mg of synthroid. As I had a mild heart attack in 1996, and take 40mg of Lovastin and 50mg acebutolol. I decided to write this personal experience because so many people seem to be having such problems. (I realize that everyone is different). I remember Dr. Volpe saying to me that if you are going to have any disease, it is better to have Addison's than to be a diabetic, as Addison's does not get worse with age.
I know nothing about the "kits" people talk about. I feel very fortunate as I feel quite well, although I do watch that I don't get overtired. I have developed Macular degeneration in the last few years and have had 5 treatments on one eye that went wet, but am able to see.....Thank God. My husband and I have travelled extensively for many years, our last trip being to China and Hong Kong to celebrate our 50th anniversary last September. I have never had any trouble while travelling. I also have osteoarthritis. My meds have stayed the same since the beginning. I live a very busy productive life. I feel very fortunate to have a good family Doctor and good endocrinologist. These things are very important.
REMEMBER.....ADDISON'S IS NOT A DEATH SENTENCE
I didn't find out that I had Addison's until after I left for basic training in San Antonio, TX. I felt so weak, I couldn't stop vomiting; it got so bad that I started fainting. Being in bootcamp, my instructors kept thinking I was dehydrated. So, I pushed on for 5 days. I felt like a chemo patient, I hit the point where I couldn't move my legs anymore, they were so heavy. The day of my addisonian crisis, I woke up dripping sweat and vomiting, extremely unusual for me. I began marching,collapsed,and actually went into something that imitated diabetic shock. An ambulance paramedic began evaluating me and realized at the time my blood sugar was only 7; I should be dead. A few days later, in the hospital of course, I was diagnosed with Addison's and released from the military a short time after. I now receive four cortef tablets a day. Today I live normally, and haven't had an episode since.
In 1998, after returning from a vacation in Quebec and Ontario, I began vomiting and having diarrhea daily; suffered from rapid weight loss because I had no appetite; low blood pressure; fatigue; memory loss; fevers, fainting and seizures.
My family physician diagnosed me with flue at that time and put me on an antibiotic. This condition continued for several months until I had a grand mal seizure and was hospitalized. The doctor attending me told me that I was on the verge of death for several days.
One of my physicians, who had been with Doctors without Borders, had seen my symptoms before, suspected Addison's, and immediately started me on a saline solution and prescribed cortisone-acetate. He saved my life because my weight at the time was below 90lbs and I was normally 130lbs. I was transferred to St. Paul's Hospital Vancouver; and began tests for several weeks. The results of blood tests, a CT scan of my pituitary gland, an ultra sound of my kidneys and a spinal tap confirmed that I had Addison's disease. A virologist informed me that I had some exotic virus that I may have picked up on my vacation to the east that had attacked my thyroid and diagnosed me with a viral thryoiditis. The CT scan on my pituitary revealed that I had Sheehan's Syndromes and that I've had this condition since the birth of my son in 1976. The spinal tap results showed that I had a tendency towards Anorexia; Osteoarthritis was discovered on my spine, primarily lower back and neck. I received four radioactive iodine treatments for a goitre, was prescribed cortisone-acetate and placed on a high protein diet with calories and sent home. About a year later, I requested a thyroid test from my family physician because I had not been placed on any thyroid medication and my weight and gone from below 90lbs to over 160lbs, plus I was suffering from some uncomfortable symptoms. As a result of this test, I was placed on Synthyroid. I not only have Addison's disease, but was born with Tuberous Sclerosis and combined with Osteoarthritis, when one problem acts up, they all do.
At 62, I have learned how to manage these conditions through diet with lots of fruits, vegetables and dairy products; thorough exercise with hiking, gardening and Yoga stretches, and I retired from a very stressful career as a Paralegal. Even though I take as many a seven prescribed medications a day, I live a very productive life. Now that I'm menopausal I recently noticed my fatigue levels decreasing. I should note that I was 33 when I was diagnosed and in a state of crisis. Over a 2 year period I had seen 8 specialists who kept telling me that I was depressed. No one did a blood test. So I was diagnosed in emergency, bright orange,with tachycardia and I weighed 92 lbs. During a recent visit to my endocrinologist we were discussing whether or not I should start HRT's and the subject of DHEA came up. I've read enough medical journals to know of it's benefits to Addison's patients. I have to get the prescription filled at a compound pharmacy, but the benefits have been huge! No more muscle pain (particularly in my legs) and increase of energy, and I feel more alert. DHEA is not recommended to just anyone due to the links to cancer but this is not the case of Addison's patients It's a great supplement for us. I also take bio identical HRT's and which have been very beneficial to my overall health.
I was 15, and had been weak for several months, sleeping all the time, no energy, etc..... I ate loads to try to get energy from food, and I craved broth, really salty broth, vegetable juice, anything salty. I also couldn't eat in the morning because I felt like vomitting. I was always more tanned than others, it's just my skin tone, but I remember a particular incident where my grandmother told me to go wash my hands because they were dirty...they weren't dirty, I'd just spent an hour in a swimming pool. My finger joints were almost black at this point. I've got a fairly golden skin tone, but not that dark. I had complained to my endocrinologist that I felt sleepy all the time, the nausea, etc. All the signs were there and he said not to worry, it was part of growing up!!! In December of that year, I came down with gastro and ended up unconscious in the hospital, where a few days later, I was diagnosed with Addison's.
I went to see my doctor, because I was throwing up all the time. But, because I was getting over a cold at the time the doctor thought it was acid reflux. He had a test run but everything came back clear. I called the nurse again and made another appointment because I continued to throw up all the time and had no energy. When I explained this to the doctor he then sent me to the hospital, and I was subsequently diagnosed with Addison's. I lost 53 pounds all together and looked very tanned. It's been two months since I left the hospital and I feel so much better. I am the only one in my family with this problem. Now that I'm menopausal I recently noticed my fatigue levels decreasing. I should note that I was 33 when I was diagnosed and in a state of crisis. Over a 2 year period I had seen 8 specialists who kept telling me that I was depressed. No one did a blood test. So I was diagnosed in emergency, bright orange,with tachycardia and I weighed 92 lbs. During a recent visit to my endocrinologist we were discussing whether or not I should start HRT's and the subject of DHEA came up. I've read enough medical journals to know of it's benefits to Addison's patients. I have to get the prescription filled at a compound pharmacy, but the benefits have been huge! No more muscle pain (particularly in my legs) and increase of energy, and I feel more alert. DHEA is not recommended to just anyone due to the links to cancer but this is not the case of Addison's patients It's a great supplement for us. I also take bio identical HRT's and which have been very beneficial to my overall health.
My son was diagnosed with Addison's at age 2. Our first indication that something was wrong was when he would vomit in the morning then crave salty foods afterwards and be fine for the rest of the day. Then the cycle would repeat again in the morning and did so for several days. It wasn't until the third day that he finally became very grey in his skin color and was almost non-responsive. This was our first Addison's crisis.
We immediately took him to the Childrens Outpatient Center where he was put on a saline drip. Blood tests were taken and he was found to have low sodium levels and high potassium levels. It wasn't until he was finally admitted to the pediatrics section of KGH where he stayed for several days that they started to figure out his condition and placed him on hydrocortisone and florinef.
Up until his first signs of Addison's, Ethan presented himself as a very active and normal 2 year old. It was believed that the onset was brought on by him being sick with Norwalk virus which he contracted at his daycare. Due to his body trying to fight off the virus, the adrenal gland started to show it's inability to function properly.
Shortly after the Norwalk incident, Ethan suffered from constant constipation which, upon retrospect, could have been due to the lack of hydration in his body. He was taken to after-hours clinics repeatedly but was always brushed off as just normal constipation and given instruction to drink prune juice and other natural laxatives.
The next incident occurred when finally, from all the constipation, Ethan was found to have a hernial tear and had to have surgery. At this point he was still not diagnosed with Addison's and had not yet had his first crisis. Therefore, he went through surgery with no extra medication.
It was shortly after surgery that Ethan had his first crisis and he was finally put on medication. Although Addison's was suspected, the final diagnosis took several months to confirm.
On a positive note, Ethan has an amazing pediatric endocrinologist that he sees every 4 months. She has provided us with a letter explaining Ethan's condition and the procedure to follow in case of crisis. She is very accessible and is always available to answer questions.
We have only had one crisis involving hospitalization since his first crisis and upon presenting the letter to the triage nurse in emergency, Ethan had a room in less than 10 minutes and an I.V. drip in less then 30 minutes.
Ethan is now 5 years old and is as active as any other child his age.
So what happened that day when I got Addison's? At the time I worked at a factory and started to feel very ill. I felt dizzy and started to throw up so I went home and got a high fever. Because of my diabetes, I had to goto the hospital to get energy in my blood. At the emergency ward I passed out and woke up 4 days after that. All I remember was that a doctor and a nurse tried to give me some injections in my upper back. Meanwhile, the doctors had no idea of what the problem could be. They were so concerned that they called my family and were not sure if I would survive the night. They had tried everything until they asked by girlfriend if I had wanted something special or done anything different from ordinary life. She said that I just had wanted salted candy the days before I went to hospital. That answer had probably saved my life. They started to give me salt in the blood and I did respond to that, the doctors made some tests which resulted in my second disease. Today I take cortisone pills for the Addison's and feel really good. I'm even out running three times a week.
When I got addisons disease it was difficult to find any information about the disease here in Sweden, so I started my own website to help others.
I had not been feeling "right" for some time, and since I didn't have a family physician, went to somebody I had never seen before. I told her that I was exhausted all the time and had no energy. I had no appetite and had been steadily losing weight. She ran the usual tests and I never heard back from her. "No news is good news."
Looking back, I had an unexplained "tan", but thought it might be residual colour from going to the tanning booths over five months before. In addition to the tan, my mom had commented on my purple gums on more than a few occasions.
I continued to get worse. By this time, I was showing up later and later for work every day. My employers thought I was out partying every night, but that was not the case. I had two alarm clocks set and wouldn't hear either of them go off. Arriving at work around 10am and barely making it through to the end of the day at 4pm, when I would walk home, have a large tin of tomato or Clamato juice and go to bed for the night. On my way to work one morning, I got off the bus and collapsed sideways against the building. Later that day I started experiencing severe abdominal pain. The pain woke me up at 6am (the earliest I had woken up in at least a month). I assumed I had appendicitis, and drove myself to the nearby ER.
Walking into the ER, I got into the line waiting to see the nurse. Before I got to the front, a nurse came running up to me with a wheelchair - she had me get in and took me right in. I looked like death.
The resident that spoke with me in the ER had an idea of what I had. After checking the colour of my crease lines (palms, elbows, and armpits), he asked whether I'd been having salt cravings. Besides the sodium-packed tomato and Clamato juice, I had been devouring salty Dutch licorice - the double - and the triple-salted varieties. I was admitted to the hospital.
Unfortunately, it took an entire week before any treatment was started. In the meantime, I was put through a battery of tests, including an internal (the OB-GYN found an ovarian cyst and was planning on operating), barium enema, and multiple blood tests. By this time, my energy level was non-existent. I couldn't make it to the bathroom on my own anymore and needed help with everything.
Blood tests started early every morning, but as the week progressed, my blood pressure dropped so much that they weren't able to draw more than a few drops. I thought I was going to die. At the end of a week-long stay, a physician provided me with Cortisone Acetate and told me to take one tablet in the morning and a half tablet in the evening. I started feeling better in a very short time.
About a year and a half ago, I got really sick. The doctors kept telling me it was the flu. After being sick for 3 weeks and losing lots of weight because I couldn't keep anything down, the doctors started saying that I was faking it, and was doing it for attention. After 6 weeks of missing school and throwing up, I had lost almost 50 pounds. My hometown doctor, who lives far away, called one day to ask how I was doing. When my mother talked to him, she mentioned a lot of symptoms of Addison's. He knew what it was right away but couldn't be sure. My mother and I drove 2 hours to see him and he confirmed that I did have Addison's. Today I am still very upset with most of the doctors at the university for just brushing me off and saying that I was faking it. When I do go to the hospital, doctors still ask me what Addison's is.
I was diagnosed in 1980, and suffered from childhood with stomach problems/pain, nauseousness, low blood pressure, darkening lips, gums and back, low weight, weakness, fatigue and finally menopause at 22 years of age. I have had 3 major crises with the flu over 26 years and 2 major surgeries, the last being 3 years ago. I have taken prednisone, cortisone and now cortef with additional florinef. I also use ESSIAC twice daily, which has helped my immune system immensely and provides me with energy that I don't normally have.
I was only 14 when I was diagnosed with Addison's Disease. Within a week and a half, I was fainting all the time and couldn't bear to sit up, let alone stand up, because of the pain in my stomach. The doctors at the hospital couldn't even get a blood pressure reading for me because it was so low. I was completely fine when I was lying down, which was what made it so weird. I hadn't heard anything about this disease and was told how weird it was that someone my age was diagnosed with it. I'm 19 now and still live normally. I haven't had an addisonian attack since I was diagnosed, and I alwears wear a medic-alert bracelet. It was a bit of a pain to carry around my injection kit everywhere I went, especially to sporting events, but I'm used to it now. Ah well, life's good!!!!!Now that I'm menopausal I recently noticed my fatigue levels decreasing. I should note that I was 33 when I was diagnosed and in a state of crisis. Over a 2 year period I had seen 8 specialists who kept telling me that I was depressed. No one did a blood test. So I was diagnosed in emergency, bright orange,with tachycardia and I weighed 92 lbs. During a recent visit to my endocrinologist we were discussing whether or not I should start HRT's and the subject of DHEA came up. I've read enough medical journals to know of it's benefits to Addison's patients. I have to get the prescription filled at a compound pharmacy, but the benefits have been huge! No more muscle pain (particularly in my legs) and increase of energy, and I feel more alert. DHEA is not recommended to just anyone due to the links to cancer but this is not the case of Addison's patients It's a great supplement for us. I also take bio identical HRT's and which have been very beneficial to my overall health.
I have a similar experience to share. I am a respiratory therapist, had gone to many doctors over a 6-month period, and was getting very frustrated. I was going into crisis and couldn't walk, breathe, etc. I had had test after test: MRI, MRA, EEG, ECG, carotid Doppler, and so much blood taken, I felt like a pin cushion. They had no idea what was going on. I went to a rheumatologist, neurologist, family doctor, emergency, and still had no answers. At my worst, I used a shower bench because I couldn't raise my arms to wash my hair while standing. I was falling asleep practically standing. I was having migraine after migraine. I would take 2-3 steps and have to bend over to be able to breathe. I really began to think I was dying.
Finally, on a Sunday, after having slept 19 hours straight, my husband told me that he was taking me to the ER. I fought him, telling him that I had an appointment at my neurologist that Thursday. He wouldn't take no for an answer and took me to the ER. We didn't get far there either. The ER doctor told me that I was psychotic and anorexic and needed to go to a psychiatrist for treatment. My unsband went a little crazy in the ER and the doctor never came back. We went home and waited until my Thursday neurology appointment. As I was practically lying in the chair in the waiting room, panting to get my breath from walking from the elevator to the office, a respiratory therapist came out. She told me that she thought she knew what was going on with me. She started telling me my symptoms without looking at my chart! I asked her how she knew this, and she told me that she had been diagnosed 3 weeks earlier with Addison's! I thought there was no way because she was practically bouncing off the walls! But I listened and ended up at an endocrinologist's office within an hour. I was diagnosed that day. The doctor prescribed Cortef 20 mg am and 10 mg pm, and by Sunday I went home and did 10 loads of laundry!!
It's amazing to have my life back! I can only thank my fellow respiratory therapist who diagnosed me!! I pray that she is doing as well as I am since being diagnosed. Now that I'm menopausal I recently noticed my fatigue levels decreasing. I should note that I was 33 when I was diagnosed and in a state of crisis. Over a 2 year period I had seen 8 specialists who kept telling me that I was depressed. No one did a blood test. So I was diagnosed in emergency, bright orange,with tachycardia and I weighed 92 lbs. During a recent visit to my endocrinologist we were discussing whether or not I should start HRT's and the subject of DHEA came up. I've read enough medical journals to know of it's benefits to Addison's patients. I have to get the prescription filled at a compound pharmacy, but the benefits have been huge! No more muscle pain (particularly in my legs) and increase of energy, and I feel more alert. DHEA is not recommended to just anyone due to the links to cancer but this is not the case of Addison's patients It's a great supplement for us. I also take bio identical HRT's and which have been very beneficial to my overall health.
Just wanted to stress how important it is for all Addisonians to always have a note or letter from their doctor with them at all times, in case of emergency. The note should indicate we have Addison's Disease, how serious it can be, and the type of treatment which should be administered.
In early March, I was admitted to Nanaimo Hospital for relatively minor surgery. With me, I had a letter from a physician from the Victoria, B.C., Hospital, explaining the symptoms and treatment of Addison's. I took extra Cortisone Acetate before, during my stay, and following release. Apparently, the dosage was not high enough for me at the time. I was still stressed from Christmas (horrid flight to Southern U.S., husband ill there with Norwalk Virus, etc, etc.) I ended up going into crisis, and a dandy one it was. An ambulance was called. Luckily, in ER, I was seen quickly by the on-staff physician who called an internist. IV was started immediately, but I went into shock, was rushed to ICU where my husband was told I was losing all my vital signs. Heart problems followed, pneumonia and another infection. Finally, two weeks later, I was released after mega-doses of antibiotics and Solucortef IVs.
A couple of days later, I felt weak, nauseous and dizzy. My husband again called an ambulance, fearing I would go into crisis on the short drive to the hospital. This time, I did not have a copy of the Doctor's letter. The triage nurse, when told her I had Addison's, asked, "What's that?". I waited over 4 hours without treatment, before being seen by a hospital physician. The IV was finally started and I began to feel a bit better.
Moral of the story: I really believe the doctor's letter was vital. It was distributed to us through the Chairperson for Vancouver Island (Victoria) Support Group. (A copy of this letter is attached to this Newsletter as Sample Letter Provided by a BC Specialist to the Vancouver Island Addison’s Disease Support Group.)Now that I'm menopausal I recently noticed my fatigue levels decreasing. I should note that I was 33 when I was diagnosed and in a state of crisis. Over a 2 year period I had seen 8 specialists who kept telling me that I was depressed. No one did a blood test. So I was diagnosed in emergency, bright orange,with tachycardia and I weighed 92 lbs. During a recent visit to my endocrinologist we were discussing whether or not I should start HRT's and the subject of DHEA came up. I've read enough medical journals to know of it's benefits to Addison's patients. I have to get the prescription filled at a compound pharmacy, but the benefits have been huge! No more muscle pain (particularly in my legs) and increase of energy, and I feel more alert. DHEA is not recommended to just anyone due to the links to cancer but this is not the case of Addison's patients It's a great supplement for us. I also take bio identical HRT's and which have been very beneficial to my overall health.
In November 2004, my husband suffered his first Addisonian crisis since diagnosis. As soon as we realized what was happening, I had used our emergency injection kit and called 911. However, I also remembered horror stories from fellow Addisonians about delays getting emergency treatment - both disbelief about the urgency and lack of information on what to do.
Luckily, I had received the Ottawa Hospital protocol a few days before. While I pulled out a copy, I was also concerned about the reaction I might receive - my experience has not always been that the medical community appreciates the patient (or family members) who want to influence medical care.
The paramedics were, as always, very comforting, but had never seen a case of Addison’s Disease. The senior person was more than interested when shown a copy of the protocol, and in accordance with it, started intravenous fluids even before reaching the hospital. He was so interested, he asked for a copy to keep permanently.
Once at the hospital, the paramedic passed the protocol to the triage nurse, who took it seriously, and had my husband in an emergency bed within minutes. And remember that the Ottawa Hospital has a typical overcrowded Emergency Room. Next was the question of how the doctors would react. The emergency doctor indicated that, although he knew of Addison’s Disease, he had never encountered a case, and that to be provided with the protocol was tremendously helpful. Again, within a few minutes, he had implemented the case management regime (Solu-cortef IV), and in little time, my husband was already feeling better. In fact, probably less than 15 minutes elapsed between the time we arrived at the Emergency Room and the time my husband had been treated.
All in all, we were out of the hospital within 3½ hours of calling the paramedics, and most of that period was due to the time rehydration took.
I was so relieved to have the protocol available and with me. We now have multiple copies with the emergency kit my husband carries with him, and the extra kit in our cupboard. We also have a copy of the Protocol in French, and have had a copy translated into Portuguese (to take with us on an upcoming vacation).
I cannot urge each of you strongly enough to make copies of this protocol and keep it handy. It was indeed a very powerful tool.