An article from the August 1998 Newsletter:
Three weeks ago I had my first Addison Crisis. I have had Addison's Disease for 6 years now and believe I may have had a minor crises before the disease was diagnosed, but nothing like I experienced early Monday morning three weeks ago. Peter and I had been out to the movies late Sunday afternoon and I had talked to my friend about the new ABC show 'Sea Change' and the movie on that night 'Dead Man Walking'. After watching the movie and having read in bed for about an hour I started getting these creepy feelings in my stomach, thought nothing of it but about 12.30 am I had a terrible attack of diarrhoea and about an hour after that I started to vomit and couldn't stop.
Going through my mind at this stage was the fact that I had been told and had read in our newsletters that this kind of problem meant a visit to the hospital. I thought I would be OK and I kept checking the clock thinking, will I have got this far soon it will be morning and then we can call the Doctor . and then head off to the hospital!!! By 4 o'clock I knew I was in trouble, I was shivering so badly and was feeling very cold despite having the electric blanket on, a heater in the bathroom, dressing gown and warm winter pj's. After ringing my local General Practitioner , who didn't mind being woken up at 4am, we rang an ambulance. When the paramedics arrived I found out that they were not able to give me the Solu Cortef that I needed (which by the way I didn't have because what I had had, recently expired and I had only just thrown it out!).
As you can imagine my blood pressure was pretty much non existent, I was badly dehydrated and they needed to stop me from vomiting. Getting a line into my hand was difficult so another ambulance was called. I was feeling really terrible and just wanted to get to hospital as soon as possible. There was no way I could walk, so they had to carry me - drip and oxygen - up our very steep driveway, they couldn't get a bed down. All the way in the ambulance to Royal North Shore Hospital [a major teaching hospital in Sydney, Australia] I could hear them talking about Gosford - I thought surely they aren't going to take me there - I would never have made it! I got the last bed in Emergency, they were quite reluctant for me to have it, can you imagine that!!! (Emergency was then closed 'till 12 noon that day - unbelievable!).
I am not sure how long it was before they got the medication into me, it wasn't straight away, but it's amazing how much better a little fluid and not vomiting am more can make you feel. It takes a little gentle persuading before the Doctors believe you have Addison's and actually do something. Although, luckily for me, they had had another Addison's patient two days previously. The Interns have not heard of it so asked me lots of questions. After receiving a large dose of steroids, I began to feel better within a couple of hours. One of the Doctors tried to tell me that my 'crisis' hadn't been brought on by a gastric infection, that for some reason I had either forgotten to take my medication or something else had happened. She wasn't sure which and that this had been the consequence! I told her that I have had minor bouts of diarrhoea before because I have either been very 'low' or had had a cold and had not taken more medication, so I knew this was completely different. Anyway, bacteria was found in the urine and stool which confirmed that I was right.
I found the nursing staff in Emergency were very dedicated to their job, working under quite stressful conditions, but I can't say the same for the Doctors. One in particular, decided she needed to have blood gases, which means getting blood from an artery. After her fourth attempt - in the same arm - and after hitting a nerve which sent me through the roof, I said that was enough. At this stage my blood pressure was still very low and it would have been very difficult to find an artery. She knew that, or if she didn't she should have.. My arm is still swollen and sore. Maureen told me later that it's a good idea to tell them to wail 'till your blood pressure improves before taking blood gases (Do they need to take blood gases, and what's the reason for doing so?). I spent most of Monday in casualty and the word went around that they had an Addison's patient 'in-house so, every hour I would get a Doctor or two asking me if I could answer some of their questions. it got very tiring after a awhile. (I was the second Addison's patient at Royal North Shore within two days. Is this disease becoming. more common. and how can we let these people know about our group?) . About 4 o'clock in the afternoon I was moved up to a ward, managed to nibble on some food and that evening they took the drip out and I was able to go to sleep - if that is possible in a hospital! My sugar levels were checked on a regular basis, plus blood pressure. and by the morning I was feeling a whole lot better.
After seeing my endocrinologist he said I could go home, I thought I was fine but was feeling very teary. When I eventually got home after waiting for a cab for three quarters of an hour I walked in the door and immediately burst into tears. I struggled with these feelings and a very sore shoulder before ringing Maureen, knowing she has been through this many times before. How reassuring it was to talk to her and to know that what I was feeling was 'normal' after having had an Addison's Crisis.
I have been surprised just how much it drained out of me and it has taken a good two weeks to feel I have my energy levels somewhat back to normal. I have gone back to work three days per week. but have had to pace myself. I have felt quite depressed and have lost a lot of my confidence in terms of managing my disease. I had prided myself on not having had a Crisis before and I expect some of you are saying I was very lucky. Still, I can't believe just how quickly it all happened. but obviously it was something I needed to go through and now Peter and I know how important it is to get to a hospital in that situation.
For me, there are a few important issues I think need to be followed/answered:
l. Always have Solu Cortef and syringes so that you can inject needed medication as soon as possible. This does not mean you shouldn't go to the hospital - you do need to stop the vomiting - but it certainly stops you from reaching the critical stage like I did. (I would like to be shown how to use this equipment as I am not sure I would be able to do it myself if I had to, perhaps husbands etc. need to know how to do it too).
2. Nobody looks at your medical bracelet, maybe be they would have if my husband hadn't been there and I wasn't able to communicate - this surprised me because I thought they would automatically do so.
3. Paramedics won't readily give you the Solu Cortef dose you know you need. Why not?
4. Don't let Interns try to take blood gases from you so early after your arrival, I believe I may have nerve damage to my left arm. It is still swollen and Maureen tells me that the same procedure has led to permanent damage to her thumb.
5. The Interns are not sure what levels of medication to give you, and I had to monitor that in the hospital. They told me that after I went home the next day I was to continue on the same levels of medication I was on before coming to the hospital. I decided not to do as they said and continued at double my normal dose for another three days, slowly reducing it from there. I en glad I did, I just can't imagine how I would have gotten better especially as when I went to my local General Practitioner on the Friday, a week later, my blood pressure was 80/60!! And I know that for a few days after that my blood pressure was still low - my head was floating in the clouds.
(People just don't understand how you can stand up with low blood pressure, but you get used to it don't you!)
An article from the April 1998 Newsletter:
Recently, my daughter discovered the Addison’s Disease Support Group on the Internet, and after speaking to the President, Noreen Secomb, my husband, Bernard and myself were asked to comment on our family's Addison’s Disease history.
Previous to our children’s diagnosis with these polyglandular problems we had no family history of any of these illnesses.
We have had eight children, five boys and three girls presently between 37 and 15 years of age. Greg the eldest, has had Type 1 insulin dependent diabetes since he was 11. Catherine, our eldest daughter, died in 1977 aged 13 of Chronic active hepatitis, an autoimmune disease. Michael has had type 1 insulin dependent diabetes since he was 7. Elizabeth and Rebecca have no problems. Matthew, now 20 has Addison’s Disease and Coeliac disease. Damien, now 18, has type 1 insulin dependent diabetes, Addison’s disease and chronic sinusitis, Andrew, now 15, has Addison’s disease and sinus problems.
The three boys with diabetes are on a regime of four insulin injections per day ( with different insulins) special diet and three to six blood tests per day.
the youngest, Andrew, now fifteen years of age was the first to be diagnosed with Addison’s disease, but because he was so young, it was not identified quickly. He was nine years of age in grade 4 in 1992. He had been constantly ill since year 1. He had pains in the stomach, cramps, vomiting and headaches. His teacher, doctor and sometimes us thought that he may be adversely effected by school but he had no problems with his school work. He has always had a golden tan olive complexion. He would be free of symptoms for weeks and then become very ill once more. He was very active, good at sports and wiry in build. Over the next four years, he was tested for cystic fibrosis, guardia and coeliac disease. We noticed that school excursions always presented a problem. On an excursion, he had been supplied with a few drinks, but it was and exceptionally hot day and no extra fluids were available. He came home ill and delirious. The local doctor said he had been affected by the heat and was dehydrated. Andrew’s condition continued to deteriorate. He would only eat his meals and watch TV while sitting on the floor. Later we found out, that because he was dizzy, disorientated and "off balance" he felt more secure on the floor where he could not fall. He was constantly vomiting and nearly comatose. We took him to the endocrinologist who was treating other family members, who had him hospitalised where tests confirmed Addison’s disease. His blood pressure and pulse were very low. Andrew is now extremely sensitive to the slightest change to his blood pressure, probably because he was more ill before diagnosis. When injured, nauseous or vomiting, we give him 100mgs Solucortef by inter-muscular injection. He responds quickly, has a sleep and recovers completely in about four hours. Sometimes he needs to be admitted to hospital and given a drip. He is a competitive tennis player, a keen golfer, and plays indoor cricket. He needs to drink and eat responsibly to maintain hydration and energy levels.
Damien, now 18 years of age was diagnosed aged thirteen with type 1, insulin dependent diabetes mellitus, in 1992. He has a regime of four insulin injections, blood tests and diet each day. Damien had chronic vomiting since he was four. Whenever he had a vomiting attack, it could never be alleviated by injections or tablets but needed hospitalisation on a drip. He recovered fully in about one day. This happened about twice a year. In 1993, with routine tests conducted by his endocrinologist, he was diagnosed with Addison’s disease, aged thirteen. The double whammy in one year! This has complicated his diabetes as the replacement therapy of Hydrocortisone , Florinef and Dexamethasone sometime interferes with his blood sugar levels. Over the last three years, his health has been complicated by chronic sinusitis with many hospital stays needing general anaesthetic in the surgery. The pain and stress caused by these procedures have complicated his Addison’s disease and diabetes. Added to this, is the stress of the constant assessment procedures at school and the fact that he is absent from school often. Damien is accumulating at school, which means that he is allowed to study for his Higher School Certificate over two years instead of one. This has eased the strain by allowing him shorter school hours but unfortunately, has prolonged his period of stress.
Damien has been hospitalised on many occasions for Addison’s disease and for severe "hypo" attacks for diabetes. We give 250mgs Solucortef inter-muscular injections at home and prevent many trips to hospital. He experiences extreme weakness, fatigue, muscle weakness, nausea, lack of concentration, severe headaches (sometimes migraines), lowering of blood pressure and impaired short term memory. During exams and assessments Damien needs to increase his steroids because of stress.
Through all this complications, Damien is a happy and well balanced young man. He has played tennis and represented his school at cricket. He is looking forward to extra study next year with a future in the computer industry.
In 1994, Matthew then 16 years and in year 11 at school became very ill. The doctor thought he may have a brain tumour. He had severe headaches, was short tempered, experienced about 8kgs weight loss, lacked concentration, was unable to maintain body temperature , and bumping onto doorways and walls. He went to a neurosurgeon but after testing was diagnosed with Addison’s disease.
Not surprisingly, as parents, we now always look for complications to major illnesses so when Matthew once complained of stomach pains, nausea, vomiting, and disorientation we took him to the doctor for diagnosis as well as giving him the usual 250mgs Solucortef. The local doctor diagnosed appendicitis and he was operated on immediately for a gangrenous appendix. Hospitalisation for other illnesses causes complications for Addison’s disease. Matthew unfortunately has had recurring glandular during his HSC year and while at university has seriously interfered with his studies. He continues to be lethargic, underweight and lacks concentration. In 1996, he was diagnosed with Coeliac disease as he has a sensitivity to wheat, barley, oats and rye products. He is therefore on a strict gluten-free diet, which he finds difficult to maintain. He has a part time job and is presently studying at university for a Batchelor of commerce - Accounting Degree.
We encourage all of our children to be as active as possible and to participate in whatever sport they wish (within reason!). We accompanied them when they were younger to all sporting fixtures, to encourage, support, supply drinks and food and supervise medication and injections. They support one another and we have our own mini Addison’s disease support group at home.
Having three sons with diabetes and three sons with Addison’s disease certainly makes for a complicated, and sometimes stressful life but the effort is worthwhile when we experience the achievements that all family members maintain through their lives and their determination to live as normal a life as possible
An article from the April 1997 Newsletter:
I was 23 years old when I was diagnosed with Addison’s Disease in July of 1995. Prior to that I completed 3 out of a 4 years of a Physical Education Degree. Towards the end of that course I believe the initial signs of Addison’s began as at the time I was playing competitive cricket, golf, basketball and volley ball and had to cut back to just basketball and cricket. I didn’t have my usual endurance and thought it was because I wasn’t as fit as I should be. I dropped out of the course and went to Leeton where I got a job at the local rice mill as a labourer packing rice. I had held this job for a year, but towards the end of that period I had a particularly physically tough night, where I had to hand stack 30kg bags onto pallets for 2 hours straight. In the following week I started getting periods of diarrhoea and vomiting. Over the next 2 months I missed nearly 2 weeks of work with these complaints and as a result I was fired!
I was on my way to Ebor to live with my Dad when I managed to get food poisoning and after this, the other signs of Addison’s started. Surprisingly I had only very minimal change in my pigmentation but I had an ever increasing list of foods I could not eat, as I immediately threw up. I was extremely weak and not able to do simple tasks like put the clothes on the line or do the washing up. This continued for a month until one morning I got out of a hot bath and collapsed on the floor. Dad took me to the local doctor in Dorrigo but as he couldn’t find my blood pressure, pulse or temperature I was ferried to the Dorrigo hospital and then on to Coffs Harbour Base Hospital. After three days in Intensive Care and heaps of blood tests the doctors were still puzzled. I thank God for the young resident doctor fresh out of university who thought of Addison’s Disease. After a week I was released from hospital with absolutely no information about Addison’s Disease. I was just told to take the tablets. When I asked the physician for some information he said, "What do you need to know that for?"!
For the following couple of months I just got used to the disease, trying to accept I had it and learning when I needed to up the dose. I wanted to go back the university to finish the Physical Education Degree, but my doctor advised against it, because of the big increase in the cortisone that would be required to sustain the level of exercise involved in teaching P.E.. I considered my options and decided the Bachelor of Health Science (Rehabilitation Counselling) degree at Sydney University would be better for my health.
I have recently finished the first year of this degree, and got into trouble with Addison’s and the course only once, EXAMS!!! I walked into my first exam with a bottle of water and my tablets only to be stopped by the lady in charge of the exam who said, " You can’t take water inside". I explained I needed the water to take my cortisone tablets. She said, "I know nothing about you taking tablets . You will have to wait until I see the supervisor." I ended up starting the exam 15 minutes behind the rest of the class. From then on I took my tablets before I entered the exam or I carried a letter from my doctor explaining why I had to have the tablets.
The second instance occurred when I had a nose bleed which caused me to lose 15 minutes out of a one hour exam. I don’t know if the nose bleed was caused by the extra cortisone I was taking or the stress of exam time.
I played competition basketball in the main Sydney competition but found I needed to adjust my tablets to allow for the physical activity. The first few games I played I had to sub off early . I realised because of the physical effort involved I needed to prepare for the game before hand. This meant 1-2 nights before a game I would boost my nightly cortisone to a full tablet and on game day I took one tablet two hours before the game started. I still don’t play like I used to (pre-Addison’s), I jog up and down the court instead of sprinting but at least I now make it through the whole game. I also have 1-2 Florinef as well as Gatorade type drink after the game to help with the salt balance. If I don’t have the extra Florinef I have difficultly standing after the game. I am not saying this would work for everyone but it is what I did. At present, my exercise program includes regular walks as well as sit-ups and push-ups in the mornings.
More recently I have had two crisis’s (in February). There was a break in the basketball season and I was feeling so good that I thought "maybe I don’t have this disease". It took five days of not taking the tablets before my legs would not work properly. I got a friend to take me to the hospital where I was treated for an Addison’s crisis and given 100ml shots of hydrocortisone for 3 days. Obviously, I now know I need to take the tablets and have to deal with the disease day to day.
The second crisis was caused by not drinking enough water and as a result I dehydrated. I spent another 3 days in hospital with a catheter, on a drip and drinking lots of water.
I feel having Addison’s disease does change your life. You are not in the same condition you were in before. I think you have to change your goals sometimes if they are too stressful and in some cases, even change careers. I believe you can still do most of the things you want, just not to the same extent and intensity as before.
An article from the December 1997 Newsletter:
I am writing this brief medical history for our newsletter from my hotel room in Saigon, Vietnam. Why tell you where I am? Just to let everyone know you can do anything or go anywhere even if you have Addison’s disease or Schmidts disease. I have Schmidts.I will turned 39 in October and I was diagnosed with Hypothyroidism in 1989 ( after insisting for years for the test to be carried out even though the doctor disagreed). I have been on Oroxine ever since and even though I became sicker, and more mentally unstable the doctor referred me to a psychologist, ( I didn’t go) and suggested I take up meditation, try yoga, drink carrot juice, re-evaluate my relationship etc. etc. etc.!! As most of you can relate too, I became sicker and sicker, thinner and darker and my personality completely changed, as I became more irrational, aggressive, depressed, angry and plain just horrible to be around.As a last desperate chance I went to yet another doctor who took one look at me and said I either had Addison’s disease or Bronze Diabetes. I was so far advanced he had me photographed to show all his medical pals!! I take Florinef, Prednisone, Oroxine and Zoloft. I was diagnosed with depression in 1992 and take antidepressants most of the time. I have a constant battle with my weight, I weigh 75/80 kilos, about 10 kilos overweight.A few newsletter ago someone mentioned they get really hot, well me too, I feel like I’m burning up sometimes and it’s not early menopause! I also really feel the cold much more than I used too. When I was first diagnosed in winter and I couldn’t sleep without an electric blanket and a couple of doonas. Maybe my extra layers of padding keep me warmer these days, as I only have 2 doonas and a hot water bottle and 3 cats to keep me warm!!
I can be very vague sometimes and my mind just goes a completely blank. I’m also forgetful. Does this happen to anyone else? I wasn’t like that before and I don’t think it’s old age, then again!!!
I a team leader at Telstra working shiftwork.. I work nights and have been lucky enough so far to work the same time everyday. My body really goes crazy if I chop and change my sleeping patterns around.
I love to travel and live a fairly active life. I went on a moderate trek in Nepal last October. Needed a few shots of Cortisone on that holiday, the truth being I wasn’t quite fit enough.
I am no longer in a relationship and I’m much happier these days. I live with my sister and we are very close. We laugh lots. I have accepted that I have a disease and keep it pretty much under control but I don’t think I’d be game to stop the Zoloft.
I’d just like to say to everyone, you can do anything you want and be anything you want, don’t let this get you down, you’re not alone. JFK had Addison’s you know.
An article from the February 1998 Newsletter:
I was diagnosed with Addison’s disease in May 1996. Unlike many other my Addison’s was picked up relatively easy by a young Chinese doctor. I went to this particular G.P. for my annual pap smear in November 1995 and he commented about my dark skin and loss of weight to which I answered, "I’ve always been dark and my weight goes up and down". On this visit he sent me for a copper test which came back normal as I expected because I thought there wasn’t anything wrong with me. he asked me to come back if my weight dropped any more.
Although I had many of the symptoms of Addison’s disease, I had reasoned them away:
- My weight had dropped from 46kgs to 43kgs but was always fluctuating
- The fact I was often in tears I put down to grief over my mother who had recently died.
- My dark skin was caused by all the days I spent in the sun in my younger years
- The weakness and loss of muscle tone was because I didn’t go to the gym any more.
- The fact that my periods were virtually non existent was one of those things that came with age.
- Dizziness and feeling faint I put down to low sugar because I’d eat and feel better.
- Lying down at every opportunity was because I worked night shifts and didn’t get enough sleep.
- The dry reaching had been occurring for years so I just thought it was my make up.
- I was one who never went to doctors and when I did I never told them what was wrong with me! So I never mentioned any of these symptoms to my G.P.
I battled on working shift work, mainly nights in the hospitality industry. Many people would comment. " Are you heavy into exercise? You are much thinner from the last time I saw you." A local aboriginal once held my hand and compared his colour to mine. Yes he still calls me his sister! I was living on salads soaked in Balmaric vinegar, Chinese food and tomato soup. By May 1996 my weight had dropped to 41kgs, but I still did not act until a friend said, "I know you have had tests done but your skin is really orange." The next day I went back to the same G.P. and this time I told him I was weaker and thinner and he said, " And you are darker". He flicked a few pages in his medical book and said, "Addison’s Disease". He sent me for the necessary tests and I went to Sydney to see an Endocrinologist who commenced me on Pednisolone 5mgs in the morning and 2mgs in the evening and ½ a Florinef tablet a day. My health did not improve, I was still teary, bruised easily, still tired, very vague and still looking for vinegar but my colour did fade. I lasted on Prednisolone for 4 months then my G.P. changed me over to Hysone at the equivalent dose of 20mgs in the morning and 10mgs in the evening. I didn’t feel so teary, my appetite improved, my head was a lot clearer and I generally felt much better.
In November 1996 my hair started falling out by the handful. I did have really thick curly hair. My endocrinologist didn’t have an answer but felt it was unrelated to Addison’s disease and suggested I had my Cortisol levels checked. The results were extremely high so I have gradually cut my medication down. I am now on 24mgs Hysone daily (18mgs a.m. and 6mgs p.m.) My hair problem continued so I went to a Trichology Centre in Sydney and with permission from my endocrinologist I take Dong Quai. Now my hair is back to it’s lustrous and thick self. I still take Dong Quai which is available on a doctor’s prescription. You can get it from health shops but I have found the health shop variety does not work.
I have many more good days than bad. I have continued to work in club bar work 15-40 hours a week but have changed to day work. I find if I keep to a routine I cope much better. I maintain a weight of 43kgs. The only problem I haven’t been able to solve is I have a day when I cry uncontrollable. I have these days every 3 to 6 months apart. Does any other members have any suggestions about this?
My G.P. is very understanding but confesses he knows nothing about Addison’s disease! I learnt about the Addison’s Support Group by radio the same week I was diagnosed. What a relief to know I wasn’t alone. The group is a wonderful source of help and support for me.
To this day I thank my friend who commented about my orange skin, I didn’t realise just how sick I was at that time
An article from the February 1998 Newsletter:
My name is Leanne and I hail from Brisbane. I, like all Addison’s sufferers, know how vital it is to maintain an adequate intake of medication. However I’ve learnt that this level fluctuates with the degree of stress, both physical and emotional put upon us. In 1996, I was barely existing on 2 x 1mgs Prednisone tablets each day when I contracted a viral infection. This wore me out and within 24 hours. I was experiencing severe vomiting & diarrhoea , found it difficult to stand up and simply couldn’t think straight.
Even with the severity of these symptoms, I still thought I simply had a virus which would go away with bed rest. It was only when I fell down the stairs that Mark (my boyfriend) insisted on taking me to a doctor. Even so I forced him to detour to the local Social Security office to lodge a form. On the way I threw up three times in his car (NB always make sure that your plastic bag doesn’t have holes in it!!) Fortunately the G.P. ( who sadly has since left the area) was well versed in Addison’s and recognised the seriousness of my condition. My blood pressure was so low that it wouldn’t register and I was slipping in and out of consciousness (and saying a few choice phrases in between). I was rushed to hospital where a helpful endocrinologist hooked me up to a drip which fed me the much needed hydrocortisone and replaced my fluid sodium loss. I remember waking up the next day still in the soiled clothes (phew!) from the night before. The only spare bed was in the cancer ward and I stayed there for four days and realised that there are medical conditions far worse than Addison’s disease.
Since then I have had three more crisis’s, mainly because, at no time did any doctor suggest I increase my prednisone intake in response to stressful situations.
The summer months in Brisbane are hot and sultry. This climate, together with seemingly minimal exertion greatly depletes my energy levels. One hot day I was working a casual shift in the kitchen of a nursing home. Even before this shift was over, I felt the tell tale nausea of an impending crisis. Mark took me to a local medical centre where the duty doctor refused to administer hydrocortisone saying he was sure I simply had the virus that was going around. No amount of pleading from either of us would change his mind, but he consented to give me a shot of Maxilon to control the nausea. It was too late and I ended up in hospital again, spending the night on a trolley in a corridor.
Misdiagnosis (viral infection and sunstroke) has occurred enough times for me to make the following recommendations:-
Locate a sympathetic G.P. who is willing to learn about Addison’s Disease and treat it promptly and accurately.
Make sure your ambulance subscription is current (mine wasn’t and I had to pay off the cost of the trip!)
Learn to anticipate stressful situations and to increase your medication level accordingly
Be optimistic, treat your condition as an opportunity to grow as a person.
Resolve to educate as many doctors in Australia as possible and hopefully Addisonian crisis’s will one day be things of the past
An article from the October 2000 Newsletter:A glimpse into the onset of Addison’s Disease in a boy diagnosed at 10yrs age, and his unique life since then.I was 3yrs old, when we arrived in Perth, from Melbourne. My mother immediately took me to the Children’s Hospital for treatment for oral thrush and infected chicken pox. I was admitted for tests, which gave inconclusive results. There seemed no explanation for my poor health, but Mum was assured that “ I’d grow out of it”.
Several days later, the infection cleared. After this, several difficult years followed. I had a string of mouth and eye infections, little appetite, leg pains and general lassitude. In the Spring of 1967, aged 10, my condition deteriorated. I began vomiting and turned brown.
My mother took me back to the hospital, and after an examination that included a painful rectal exam, the doctor concluded that there was nothing wrong with me. It was, as you may have guessed “all in my mind”.
My blood pressure was never taken. The nurse exclaimed that I didn’t even have a temperature! ( it was only 34C). The doctor went on to pronounce that all Australian boys are skinny and have a tan. Mum insisted that I hadn’t seen the sun for months, and actively avoided the heat, because I couldn’t cope with it.
My condition further deteriorated, and by early January, 1968, I had been bedridden for over a week, unable to keep any food down. A visiting family friend saw me, and was horrified at my condition. She recommended a paediatrician, and urged my mother to obtain a referral. The local GP wrote one, without argument, and hoped the specialist could save me.
The next available appointment was in 10 days’ time. My Mum promptly broke down and said: “he will be dead by then”. I got an appointment the following day. I am in no doubt, that if it had been any other physician I would not be here today. As ill as I was, I clearly remember how quickly he made his diagnosis, telling Mum, if he was right, I could be saved. Less than an hour later, I was admitted to his ward at the Children’s Hospital. By this stage I was lapsing in and out of consciousness, and needed help to walk any distance.
I was weighed and tipped the scales at 17kg. I was skin on bone. Later we were told that I had been hours from becoming comatose. Repeatedly the hospital staff tried to insert an I.V., but my veins kept collapsing. My specialist tried, and finally found a vein in my ankle. From that moment on, as the fluids began, my condition improved.
Tests confirmed my doctor’s suspicions, (it was Addison’s Disease), and I was given Hydrocortisone and Florinef. Over the next 2 weeks, my recovery was dramatic. Subsequent tests revealed that my #parathyroid glands no longer functioned, so I began taking Calcitriol (* Rocaltrol), and a Calcium supplement (see * below).
All went well, until 1971, when I developed a severe infection in my left eye, which put me in hospital for 5 weeks. During this time, everything was done to save the sight in this eye, but even the experts couldn’t find the cause, or a suitable treatment. The extent of the corneal ulceration destroyed the vision in my left eye, and the infection then moved to the right eye. The 30 years since then , have been an ongoing battle to preserve the sight in my right eye. And still the experts don’t know the cause. My personal opinion is that it is an auto-immune process.
Since my late teens, I have been plagued with alopecia ( - hair loss). At times, I have had between 1-4 bald spots, each the size of a 50c piece. They can last for up to 2 yrs, regrowing eventually. Another spot will appear in a new area. My body also suffers similarly. I once had no eyebrows for 3 yrs.
About 20 yrs ago, I developed arthritis in my right thumb. Progressively painful arthritis has developed to varying degrees in almost every joint. This is partly alleviated by NSAIDS ( - Non Steroidal Anti-Inflammatory Drugs), but their efficacy is diminishing, as my symptoms increase.
I have quite low hormone levels, but am not on supplements for this. I feel quite strongly about this area of medicine, and have been frustrated at the lack of information, and availability of hormone-based treatments for endocrine disease processes.
Despite my low calcium level, my BMD ( Bone Mineral Density) is O.K. I have had high cholesterol for years, and take Jezil to control it. I am currently on 11/2 – 2 Florinef, 11/2 Cortate, 4 Rocaltrol, 4 Calsup, and numerous vitamins, minerals and herbal supplements per day. I suffer periodic bouts of cardiac arrhythmia, (rapid heart beat), which leave me short of breath and dizzy. I do tire easily, and seem to have little stamina, despite sleeping 10-11 hrs/night.
After working for 20yrs in a government office, ‘I called it a day’, when a doctor helped me realise that I wasn’t coping too well. I now live the life of a retired gent, albeit a little earlier than I had planned. It is a full life, looking after myself and my elderly mother. I cannot criticise the medical profession, as it was a doctor who saved my life. It must be remembered that our genetic instruction manual contains over 3 billion specifications. I only wish some medicos were more humbled by the overwhelming complexity that is the human body. Sometimes I imagine putting the mind of a normal, healthy person inside my body, and wonder how they would feel and think about being like this. I’m not even sure I would know what “normal” feels like any more. I think I have had Addison’s all my life. I have tried to be objective, and concise. It’s hard to compress 40 years of experience into about 1000 words. On reading this, it might seem somewhat depressing. But I am still the same cheeky 10 year old who, more than 30 years ago, recognised the doctor doing his hospital rounds, (as the one who told me nothing was wrong with me), and called out “ I really shouldn’t be in here doctor. It’s all in my mind!”
NB. Paul also has Hypoparathyroidism as well as Addison’s Disease. The parathyroid glands normally control the metabolism of calcium and phosphorus. His requirement for calcium is greater than someone with functioning parathyroid glands. * Normally one would not take a calcium supplement as well as Rocaltrol/Calcitriol.
An article from the December 2000 Newsletter:I was diagnosed as an Addisonian four years ago. My “case history” has been a long one, starting twenty-one years ago, when I was diagnosed with juvenile diabetes, at the age of seven. My life has been difficult, to say the least, and my Addison's showed “itself” frequently over the years.
My mother was always telling me to go and wash my face, because it always looked dirty. I would stand in the bathroom rubbing my chin and neck, until it was so sore and red that I couldn't rub any more. I'd come out of the bathroom, sure that I couldn't get any cleaner if I tried, only to be told to “ get back in there, stop mucking about, and clean that face!”
I was an outcast at school. I was called “ half-caste”, because even though I have the blackest hair ( - a bit greyer now), I had two blonde patches at the back. My eyes are hazel, but one has a strip of blue in it. Between the pigmentation and the diabetes, no kid in their right mind was going to hang around with me. So I became the classic “loner”. I won a scholarship in my final year in Primary School - so, even though I had no friends, I had brains and the money to pay my way through High School.
High School, was a low point. I'd manage to find a friend, only to have some strange mood swing, and consequently lose the friend. I fought a lot, physically. So, eventually, everyone left me alone, and whispered behind my back about how weird I was.
I met my husband, at the age of seventeen, in 1989. We were married in 1993. And he's still with me. I don't know that I could have “ put up with me “. He's been through so much.
In October, 1993, I discovered that I was pregnant. Everything was O.K., until the 30th week. I started to have contractions. I continued to have contractions for the next 6 weeks. Then, all of a sudden, it all stopped. I opted for a caesarian section, because my baby was breach, plus the complication of the diabetes. I have a beautiful little girl named Gabbie. I worry about heredity, with both diseases. At the moment she shows no symptoms of either condition.
The first “real” signs of the Addison's, was in January 1996. I noticed blue-black marks in my mouth, on my gums, and tongue. I was told I wasn't looking after my diabetes well enough, and that the marks “weren't there”. In fact, my doctor didn't want to hear any more about it. So, I went to another doctor, who told me the same thing. He also suggested that I was in a severe state of depression, and needed psychological help immediately. At this stage, I began losing weight. It was gradual at first. Everyone commented on how good I looked, and asked me for the secret diet I was on. When I answered that I wasn't on a diet, I was just inexplicably losing weight, the comments were: “Yeah, right, the fat fairy“, and, “Is Jenny Craig really that good?”.
I consistently lost weight, and became a “monster” to be around. So, I went back to the doctor. He told me to “get off the diet, and have another psychological report done”, and gave me a script for a tranquilliser. Then the vomiting started. It was cruel, because I was sooo hungry all the time, but no sooner did the food go down, than it came right back up again. I cried every time this happened. I started to look really bad. My eyes sunk into my head, my lips became black, and the pigmentation was obscene, to say the least. I became bed-ridden, doing crosswords, knitting, and watching T.V. That, was my life. I craved salt. I would pour it on everything, and even resorted to sucking on rock salt, to try to satiate the craving.
Eventually, the crosswords had to stop, because pens wouldn't work for me. (Has this happened to anyone else?). I found it strange, and frustrating, because in the end I was so weak that I couldn't speak. I had to write to “talk” to my husband. My heart beat so fast, I thought I would have a coronary any time. I had bed-sores, and I was so COLD!! I felt clammy all the time, and cold. And my moods swung from monster to delirious tyrant. My husband Shane did everything for me. He carried me to the bathroom, bathed me, and looked after Gabbie as well. If it wasn't for him, I wouldn't be alive. He is my angel. I was determined not to die in hospital, but a fall during the night, changed my plans.
The doctor we called for a home visit, took one look at me, and ordered me, kicking and screaming ( weakly ), to hospital. Before I became so ill, I had weighed 63kg in January. By November of that year, I was down to 45kg. In the two days it took to figure out what was wrong with me, I lost a further 2.5kg. I only had hours left. Before I was transferred to another hospital, a nurse came in, and told me how selfish I was, and asked how I could do such a thing to my husband and daughter. When I gasped that I wasn't doing anything, she said, “ You're anorexic. Fancy doing that! Have you looked in the mirror and seen how revolting you are?” I tried to reply that she didn't look that good herself, but what was the point? I did want to prove that everyone else was wrong in their assumptions, but was so weak in myself.
Finally, after a massive dose of cortisone, and umpteen drips, I was conscious enough to be told I had Addison's Disease. The doctor was laughing when he said this, which I didn't much appreciate - especially as at that time I thought he meant that I had terminal cancer. A few hours later, my appetite returned with a vengeance. I ate, and ate. My stomach hurt from eating, but I just couldn't stop. Five days later I weighted 58kg. I left hospital a new woman!!
My husband had a grin, from ear to ear. My little girl finally cuddled me without hurting me, and my mother was beside herself with joy. But… it's not the happy ending you might imagine. My old doctor has moved away, and the new doctor is as uneducated as the last one. I need help with my medications, and still feel that they are “not right”. I'm currently on: Cortisone Acetate, 25mg a.m., 12.5mg p.m.; Florinef, 1 tablet every second day. I have been put on another anti-depressant, but the combination of all these, has added weight around my middle. Juggling diabetes and Addison's is very difficult, especially without much help from my G.P.
P.S. Janene would like a pen pal. Contact her through Jim Sims.
An article from the February 2001 Newsletter:
One of the few male Addisonion members of our Association, Mike, has put pen to paper to tell us his story. For an unsual twist, Mike’s wife, Diane, has also written her side of the story.
Hi, my name is Michael, husband to one (Diane), and father to two (Jaimie 3 & Charley 5 mths - both girls!). It (Addison’s), all started for me back in about 1985, although I didn't realize it at the time. I had some pains that ran from my kidneys down to my, well - you know, ‘treasures’. The GP at the time fobbed them off (the pains) as growing pains or something - I wasn't listening too well, he had just mentioned RECTAL EXAMINATION!
It was soon after that I developed what was described as ‘Sinusitis’, my nose dripped all the time causing me to sneeze CONSTANTLY! I also developed a rash that looked like a heat\fungal rash. Naturally I saw an ENT who couldn't say conclusively what caused the Sinusitis (possibly a deviated Septum?). The skin specialist said, "You've got some sort of rash!" I take half an Actifed daily, for the nose thing and cover myself in Selsun every 6 months for the skin thing!
My general health slowly deteriorated for the next 4 years, but being a strong, young, immortal "Aussie Bloke", I soldiered on. I had a "nose job" in 1988 to fix the Sinusitis (which it didn't), and had a melanoma removed from my left forearm just in time for Christmas. The surgeon chastised me saying, "people with melanomas should stay out of the sun!" Such was the colour of my skin (ring any bells?).
At that time I was working for my parents-in-law in their Newsagency and my health was deteriorating fast. I couldn't sit still for a minute, couldn't eat enough salt or drink enough water, had trouble sleeping, always felt tired, ran out of breath quickly, my speech was slurred, I couldn't think straight, I took quite a long time to do the simplest of things and thought I was going crazy!
My father-in law was surprised when a simple job like collecting the "Returns" took me over an hour and I'd proudly netted only 7 magazines - he knew at that point there was something wrong!
But the crunch (literally), was when I didn't come home from the Sunday morning run. I was found sitting in the car, motor running, wondering why the hell I had backed it into a brick wall. I can't tell you how long I'd been there but apparently it had been a while! Fortunately there was little damage and I didn't get fired - in fact I still work for my parents-in-law, (though not in a newsagency, I hated "THE RUN").
Diane took me to our GP on the Monday and did what wives are pretty good at! I was referred to a Diagnostic Physician who booked me into hospital. I had some X-rays which showed some thickening around the Lung\Heart\Aorta. Naturally the Radiographer assumed the melanoma had "meta-whatevered", and told Diane to spoil me while there was still some time left - there was little hope for me. The Radiographer had obviously not met the Physician, Dr Hope! It turned out to be Sarcoidosis (sounds like a bad drink doesn't it!) And no, Di has never forgiven the Radiographer!
I had some (read: LOTS) of blood tests and when the tingling and paralysis started in my hands and feet I was moved to Nambour General and Intensive Care.
Interestingly, a nurse on duty had a shot at me for not taking my medication. She had nursed someone with Addison’s before and recognized the symptoms! Naturally she apologized when I explained that I had no idea of what was wrong with me.
A shot (or several) of Hydrocortisone, and I was well on the road to recovery, and back to the private Hospital and my television, in time for Sunday afternoon Motor Racing!
One of my questions to Doctor Hope was "Will I still be able to drink alcohol?" He replied "As long as you don't make yourself vomit!"
I am not an Addisonian, but the partner of a sufferer. Those of you in the same boat would have to agree, (at least I hope I'm not on my own), that that puts us in a unique situation. I find myself these days in the role of benevolent watchdog.
This role takes a million forms. Mike was diagnosed in March 1989. He was actually in Intensive Care when diagnosed, which is a story in itself. Up until this stage, I could not remember Mike having even one day off work. He was an extremely fit, very strong young man of 27. We had been together for eight years by then, so when things began to seriously fall apart, it was pretty obvious.
Looking back, we realise that things had been going wrong for about three years before Mike actually got sick. Great timing! - we had been married in October 1984. Maybe God wanted to make sure Mike 'legally' had to listen to me a few years later. We had arrived home from six months travelling in North America in May 1988 which was great timing yet again!
Mike had been doing some very strange things over the months leading up to his 'collapse'. We were both working for my parents in their Newsagency at the time. This was probably a good thing as Mike did not have the added worry of losing his job, which was nice. Mike had lost a lot of weight, mostly muscle bulk, as he did not have much fat to lose. He couldn't sit still and we'd send him to the bank to do the shop banking - anything to get him out of the shop. He got to the stage where he couldn't stand still in line to do it; he couldn't sit still to eat dinner, etc, etc. He sneezed constantly, had very low blood pressure, often didn't make a lot of sense, was generally pretty ‘agro’ (not at ALL like him), and so on.
Eventually I got him to the GP, who has been marvellous. He agreed that there was something wrong! In the meantime while waiting for blood results, he decided to get a mole checked (turned out to be a tiny melanoma - Merry Christmas 1988 Mike).
Even Mike could no longer convince himself that there was nothing wrong. He backed the Newsagency "run" car into the brick pillar at the front doors of the shopping centre and just sat there waiting for who knows what! That happened early one Sunday morning. Monday morning guess who was dragged to the GP! Thankfully he realised that the situation had gone beyond his expertise.
We were referred to a Physician by the name of Dr. Hope! I kid you not! Long story there too. By all accounts a clinically brilliant man, but very difficult person to talk to. Obviously very uncomfortable talking to patients. This made it really interesting trying to understand what was going on with Mike. After we saw him the first time, when we walked out, I turned to Mike and said: "what the heck did he just say? What was all that about?” Mike, of course couldn't remember a single thing!
His recollection of the sequence of events around that time is very different to mine.
He was almost totally 'out to it' in intensive care, but is convinced he can remember what went on! I have to admit I have found things like that terribly frustrating at times. Mike is SO sure of what he remembers - but my recollection is different. If I push it he tends to get pretty defensive, so I decided long ago that it really doesn't matter, and he can go on thinking he has it straight.
I must admit, I spent a while being quite angry at the whole situation. I was no longer married to the same fit, strong, patient, delightful man. Mike had a fair bit of denial to deal with, which of course had its tough times.
As many of you know, long hot days working on the car, or in the garden, etc had their sequence in a 'bad' day following. The worse part was that Mike’s usual response at that stage was "there is nothing wrong with me! Stop fussing, you're driving me crazy". Grump! Grump!
Not at all like the 'old' Mike.
Our very useful GP pointed out to me that there would at some stage, follow a period of grieving on my behalf. Sooner or later, I would have to mourn the 'lost' Mike. Initially, I thought " What a load of garbage". Well, the GP was right, and it happened about ten months later. Anyway, as with most things, it passed.
There was only one occasion in the early days, when Mike thought that maybe he could do without his medication. That experiment thankfully didn't last long. I know it really grieved Mike to know how much he needed it.
We found after a few months, that Mike was firing on about five cylinders, rather than eight. Whenever we spoke to any of the doctors about it, the response we got was: ‘that Mike was taking the recommended doses of medication, so therefore he was probably just expecting too much!’ - Rubbish!
We decided to do some research on our own, and discovered a lot about diet, exercise and so on. Mike is now a vegetarian (we all are), and has been for about five years with no ill effects at all. As long as Mike: eats regularly; has good protein and carbo intake; makes sure he drinks HEAPS of a variety of drinks when it's hot; eats an awful lot of salt; does regular, fairly high level exercise; gets preferably eight hours sleep; and tries to keep mental stress to a pretty low level, things go along pretty well.
The stress factor is a huge one for Mike, particularly mental stress. With a VERY demanding three year old and six month old, simple family life can be a real drain on him.
At times I find it a real challenge ‘running interference’. It can be pretty difficult at times if Mike has had a stressful day at work, or is tired from a couple of late nights. I understand that it is a result of the changes in brain chemistry that does all this, but as all of you in this situation will know, when your loved one cannot see what's happening, much as you love him/her, it can be SO frustrating!
For all this, I wouldn't trade Mike for anything. In some ways, it has made us far more aware of health and lifestyle issues. It certainly teaches you to appreciate and work towards the best health you can maintain. And that goes along with a great deal of respect for the human body. One thing that has helped me, though it may sound trite, is to remember that there are a lot of people FAR worse off than we are.
All in all, Mike has been very lucky. He has only had one crisis since diagnosis, and that was last Christmas when we had an early morning trip to the local hospital. We now have Solu-Cortef injections in the fridge - another reason to encourage Mike to be nice to me!
All in all, I think Mike manages his condition very, very well. He is extremely tough on himself, and doesn't admit to having a bad day very often. He really tries not to make any allowances for himself at all. Although that can be hard at times, I do believe that it is a big part of his ability to get on with life.
An article from the March 2001 Newsletter:
The one thing I hate about Addison’s, is the insidiously slow way it develops. You wonder why you feel weak, why you can’t shrug off that cold or flu. You blame yourself for getting so unfit and lazy. You get frustrated by the fact that every time you try to put extra effort into something, it gets harder and harder.In retrospect, I can see that it took about a year from the initial signs to diagnosis - a shorter time than some Addisonians endure. This occurred despite the fact that I was a 15/16 year old, with all the usual hormonal changes. There were school and peer group pressures. On top of that, I had been living with my aunt and uncle, since my mother had died, some years ago. My illness was developing when my uncle died quite suddenly. Not long after, my aunt was diagnosed with the same heart condition my mother suffered from. Understandably, my health status was not at the forefront of everyone’s concern. However, my struggles to keep up with school work and other things had not gone unnoticed.My health steadily worsened. I had recurring infections, and spent more time at home sick. I would faint on standing. Even a couple of times, when walking, I would suddenly realise I was lying on the ground and wondered what had happened. Eventually I was hospitalised a number of times. With rest, saline drip and antibiotics, I made a good recovery. The cause was passed off as a virus. But, it didn’t take long before I was so unwell I was back in hospital - again.Coping with my condition was difficult for everyone, so I was moved back to Adelaide, to live with my father. There my condition worsened. I could hardly stand at all, I was constantly vomiting, and could not hold food or drink down. I lost a great deal of weight, in fact I looked like some starving child from a third world country. Eventually, I was admitted to hospital where I spent some weeks having all sorts of tests done to try to find out what was wrong. I recall spending hours trying to keep down some Barium, long enough to take the X-rays! Of course, eventually I recovered somewhat, and went home. Within weeks, I’d be back in the hospital - AGAIN!The next visit to hospital can only be described as the most frustrating time I have ever spent. I was carried into Casualty by my cousin. The doctor on call, took a look at me and asked if I had been to the toilet recently. I replied that between vomiting and not eating for ages, that I had nothing left in me! He decided that I must be constipated and sent me home with a laxative. Strangely enough, that didn’t seem to help. I was intent on finding him to tell him so, but never got the chance.
The GP was called in again. He took one look at me, and couldn’t believe that the hospital had sent me home. He sent me by ambulance, with a request not to send me home like that again! So, I spent many days in hospital again. This time, the doctors were concerned. My blood pressure had dropped so low, that the staff couldn’t get a reading for three days! They had trouble finding a vein to put a drip in. One time they missed, and my arm blew up like a melon overnight! I was only conscious for a few minutes a day. People came to visit me, and I wasn’t aware of them. I happened to be in a cardiac ward, when another patient was telling a nurse that his blood pressure had reached 200. I chipped in that mine was 50/20. The nurse suggested that if it was that low I’d be dead. When she looked at my chart she was shocked. I was too. It was the first time I realised how close I was to death. All sorts of test were being taken to try to figure out what was going on. They were even talking about a bone marrow biopsy - I wasn’t too thrilled about that. I even had a psychiatrist ask me if I was taking any drugs. I told him I had trouble swallowing an aspirin, let alone illegal drugs. Then I promptly threw up on him….. That was the last time I saw him.
FINALLY an endocrinologist came and told me that he thought I had some rare condition called “Addison’s Disease”, and it was treatable with medication. Usually when a doctor tells you that you have a disease that will require lifelong treatment you would go into a state of depression, not so with an Addisonian. It was like a big weight was lifted from my shoulders, there was relief that I wasn’t going crazy! I recall telling people “ See! I told you I was sick!”. The doctors told me it was hard to diagnose because I didn’t show many of the symptoms, but from what I have read since then, I was displaying almost ALL of the classic symptoms!!
With the right treatment, I started to improve immediately. My appetite was ferocious!! I was making up for lost time. Not only would I order two meals at a time, but got my father to bring in take-away each night for supper. It took quite some time to regain full strength, but I finally felt alive again - and that was such a relief!! Looking back, it must have been a worrying time for my family.
Living with Addison’s has not been as easy as I was led to believe. Although the worst part of the disease always happens before diagnosis, an Addisonian must listen to what their body is trying to tell them. Being a teenager, I was totally ignorant of these messages, and failed to listen to the signals my body sent me. I would forget to take my medication, except when I started to feel sick, so I had numerous stays in hospital, with infections, particularly bronchitis. I also started to smoke - my one true regret.
When I was diagnosed, I was given very little information about my condition. There was even less to be found in libraries. Most of my knowledge came with the experience of living with Addison’s. I had been told that if I got sick I might need to increase my medication. Unfortunately I discovered that many doctors know little, or nothing about Addison’s disease. Their treatment options reflected this lack of information. One time, I had my appendix out. No-one increased my steroid medication, and I suffered a post-op infection and had to be re-hospitalised. Another memorable time, I had broken my leg in a motor cycle accident. When I asked the doctor if I should increase my medication, he said “ no. you are on the correct dose”. I became sick, and spent much longer in hospital than was necessary. The endocrinologist came to see me, and on hearing what had happened with my medication, told me to “tell the staff it needed to be increased. If they didn’t respond, he was to be called immediately!” I enjoyed hearing that. It was the best advice I have ever had regarding treatment. I applied it once too. I was admitted to hospital with an Addisonian Crisis. I told the casualty doctor that I would probably need an injection of cortisone. He didn’t think it would be necessary - until he spoke with the endocrinologist. To be fair, he came back, and apologised to me, with the endocrinologist close behind. My request was granted.
When I was younger, I was more resilient. As I have aged, I find I have to pace myself more, and suffer if I overdo things. I have also discovered what a terrible drug cortisone really is. I have suffered stomach ulcers and constant gastric discomfort. I also discovered, after many years that I was on a ‘higher than normal’ dose. My bone density has been seriously compromised. To be told at thirty seven years, that you have the bones of an eighty year old, is not what you want to hear. Now, I take as much medication to counter the side effects of cortisone, as I do the drug itself. Bone density is one issue I feel is not taken as seriously by doctors, as it should be. If there is one message you take from reading my story, I hope it is that you become aware of this potential side effect. Addisonians should be also aware that they are possibly at a greater risk of developing other endocrine and autoimmune disorders. All of us should have regular checks with our endocrinologist.
As diseases go, Addison’s is certainly easier to live with than many others. I decided long ago, that I would learn what I could of the condition, be prepared for what I needed to do, then ignore it as much as I could in my daily life.
Be thankful for what you have, it could always be worse.
An article from the April 2001 Newsletter:
I spent all my working life underground in the coal mining industry. I first struck trouble when I was 57years of age, (I’m now over 70). I had shocking leg pains and no “get up and go”. My shoulders completely locked up on me. It got that bad that I even had trouble driving the car. It meant that work was out of the question. My GP was at a loss, as to the cause. Bone cancer was initially thought to be the culprit. Then acute arthritis followed as a diagnosis. As time went on, the symptoms were getting worse every day. I had been off work for 13 months. We had a death in the family, and that very night I had my first crisis.I was put into hospital, and I went into a coma for four days. While I was in that condition, I was put onto a drip feed. Lucky for me, it contained cortisone. Little did the medical staff know that that was exactly what I needed! Two weeks later, I had another bad turn. This time, I had kidney failure. Until this event, no-one seemed to know the real cause of my troubles. I was under an arthritis doctor in Newcastle. He was treating me once a month with cortisone injections. Luck was with me again, as I showed him the large brown freckles on the palms of my hands, one day. He sent me for blood tests. The results took over a week to come back.In that week, I had yet another crisis. So, it was hospital again for me. This time I was in Royal Newcastle Hospital Intensive Care, on life support. After two and a half days like that, the result came back - it was “Addison’s Disease”. I started on cortisone treatment - 30mg Hysone, and 1 Florinef tablet/day. Three days later I was sent home.Not long after my treatment began, my blood pressure became too high. The Florinef was removed. I did not take that for sixteen years. In 1998, a very funny thing happened, regarding my medication. My health seemed to be slipping back to pre-diagnosis problems in more ways than one. I had chest pains, cramps in my arms and legs, low blood pressure, etc. For some reason, I decided to check my cortisone tablets. To my surprise, I found that a mistake had been made. Instead of 20mg tablets, I had been given 4mg tablets. In effect, I had been taking 6mg instead of 30mg of Hysone every day. It took three and a half weeks before this mistake was found. I am sure that even such a short time on a lower dose caused me trouble. Because of that experience, I have learned to check my tablets as I get them from the chemist.
William makes a VERY IMPORTANT POINT!
All of us should check every bottle and package of tablets we get from the chemist for:
- Use by date
- Any tampering or partially damaged packaging
- Correct dosage for tablets
- Correct size and appearance of tablets. Get to know the size, and depth of your steroid replacement tablet. Does it have an indent across the top? Is it thicker than the lower dose tablet? Does it have a design printed on it? What does the name brand look like? What does the generic brand look like? What colour is it usually? If it is Florinef, is it really pink enough? (Florinef have a fairly short shelf life)
- Never hesitate to go back to the chemist and query what they have given you. Much better to check than be on too much, too little, or a totally inappropriate medicine, as a result of someone’s mistake.
An article from the September 2001 Newsletter:So, here is my complicated medical history. And it IS quite complicated. I am under several specialists at RNSH, Sydney, NSW.
For years I have suffered from chronic urinary tract infections, and have been catheterised for quite some years.
I also have Addison's Disease. It was detected by my kidney specialist, about five years ago. A routine test showed evidence of ACTH deficiency. I had been feeling exceptionally tired, running out of energy by about 11am in the morning. I was reluctant to see 'another specialist', but if I hadn't, I would have died. The CAT scan of my brain, showed that, yes, I had a brain, and also a small tumor on the pituitary part of my brain.
Yet another specialist on pituitary tumours at RNSH was called in. He decided that this tumour was not the cause of the Addison's symptoms. There was much discussion, and the morphine, (from the infusion pump I use to control pain), was possibly the culprit. (*note: Chemist question issue before last, where morphine was discussed, as carrying a warning to people with adrenal suppression).The chronic back pain I have, is a result of extensive spinal surgery in the 1980's. Three operations attempted to deal with spinal damage. A morphine pump, situated just under the skin, feeds a constant supply of morphine slowly over the course of each day. This helps me cope with the extensive and chronic pain.
I am finding it increasingly hard to walk or stand for any length of time. Shopping is barely bearable, if I hold on to a trolley for a short time. Otherwise I can only manage a few steps, and get breathless and tired.
I also tend to get a lot of chest infections. I can develop bronchitis, which quickly changes to pneumonia. It is now a difficult choice, whether to go in to hospital or not, with such an infection. As a result of my weakened immune system, I have several times picked up hospital-derived golden staph infections, and MRSA (Methecillin Resistant Staph Aureus). Sometimes the treatment is better done at home!
I have recently undergone an anaesthetic procedure, to site a semi- permanent cannula in my jugular vein. This enables the direct delivery of antibiotics, when necessary. My veins are thin, and collapse easily, so the cannula provides 'easy-access'. It is a tricky procedure in itself, and cleanliness must be a priority.In the last few years particularly, my general health has deteriorated. The MRSA has remained, and lodged itself in one breast, causing a discharge. After many scans and antibiotic courses, a small tumour was detected. A biopsy was the next course of action, but a wise specialist (- yet another one!) felt that to fiddle, may actually spread the infection. I am happy to say that this part has cleared up considerably with his wise advice and cautious treatment.
My right toenail was the other site of infection from MRSA. Consequently, I'm getting to know my podiatrist quite well!
This infection is far reaching and persistent, and has also lodged itself in my bladder and urinary tract. The catheter (unfortunately) makes a perfect environment for infections like this to spread. Millions of red and white cells become infected and enter the urinary system, entrenching this infection in yet another site.My lungs are increasingly becoming a problem for me. I often only get about four hours sleep at night. Mucous collects and must be expelled. I really require oxygen full time, but find that difficult to tolerate. My brain seems 'fuzzy' with the extra oxygen. I also have to use a ventilator. The room air needs to be warm all year round. I have to sleep propped up, or sit in my favourite rocking chair. According to my respiratory specialist, I have Grade 2 respiratory failure. Grade 4 is the worst, and means death. I often wonder if my troubles began because my mother was a chronic heavy smoker, before her death, when I was 16. I had many bouts of bronchitis as a child, so perhaps already had a weakness there.I handle the chronic pain with the morphine pump, topped up by four-hourly pain killers. My back, hips and other areas cause severe pain. I have tried anti-inflammatory medication as well. We recently found out that the morphine pump was 'under-performing' by 20%. So this will be rectified soon, and generally pain management will improve.
My health is delicate. Medication is a constant thing to be dealt with. I take over 54 pills and potions per day! I constantly have to adjust the steroid replacement dose, to cope with acute infection and other complications. I take Cortisone Acetate in quite large doses, and have to cope with its side effects.
I seem to be developing something else 'auto-immune'. Antinuclear antibodies (ANA) keep showing up in my blood tests. They can be indicative of Lupus, and some other related conditions. It may even result from the inflammatory process in my lungs.
At all times in my life I have felt God close to me. I grew up as an orthodox Jew. I caused quite a stir when I married my Anglican husband. We have three fine sons. One travels extensively overseas, and lives with us, when 'at home'. The other two are married. One has a son, Harrison, the other a daughter Isabelle. The grandchildren were born 12 days apart.
At times of crisis, God has been with me. A Ugandan minister who was visiting, prayed over me, with some others, when I had the pituitary tumor. Later, it was not in evidence on the scans.My local church is very supportive. I am still able to share in Bible Study, church services, and some outings. I spend my time enjoying God's creation. The early morning sunrise. The call of birds. The blooms in the garden. All these things are very precious.
My life is not straight forward, nor easy. But I find ways to cope with my various problems. I have a trusted medical team, and a good hospital. We work together to maximise my health outlook. I take each day, and find good things in it. When I stop to think about it…
ADDISON'S IS THE LEAST OF MY WORRIES.
An article from the December 2001 Newsletter:
This is a true partnership, not just in marriage, but in living. Scott and Alison have had many trials to share, and have had to really work together as a team.
Scott was born in a small country town in New Zealand in 1967. He had a congenital heart defect, with an extra heart valve. As a young boy he was prone to bronchitis. His adopted family migrated to Queensland, seeking warmer climes.
For the last twelve years, he has been a skilled labourer with one of the biggest employers in Queensland. While on the job, he was rushed to hospital with a heart attack at the age of twenty-two. He had Wolff Parkinson’s Syndrome, and required open heart surgery to correct the problem. Scott’s recuperation time was lengthy, as he had collapsed lungs during surgery. Eventually he healed well, with no infections. Unusually, Scott reported seeing “squiggly little white lightening bolts” out of the corner of his eyes. This was put down to post-operative trauma of some kind.
Scott and Alison:
In 1991, I met Scott. We dated, and became engaged. Scott seemed tired all the time. One night he went to sleep while driving home from work, and rolled the car. It was “totalled”, but Scott walked away unharmed. He was lucky to have been asleep and therefore relaxed, when the impact happened, or he might have been a quadriplegic.
In 1993, we married. Scott’s health seemed just like that of an average normal Aussie bloke. He weighed about 75-80kgs.
But from 1995 onwards, I noticed Scott’s health start to decline. He seemed always to be sick with sinus, diarrhoea, flu, etc. Scott worked a rotating shift for two years, which included day (6am-2pm), afternoon (2pm-10pm) and night (10pm-6am) shifts. His health declined when he started these shifts.
We both had gastroenteritis in December 1996. Scott was badly affected, collapsed on the floor, and went to hospital.
During Addison’s Disease:
*January 1997, Scott presented with continuing tummy troubles, and generally feeling unwell. The doctor thought it was a flu bug. The symptoms persisted. Then it was decided Scott was suffering from stress or ulcers. Scott was quite disgusted, and wanted some immediate action. He felt that he wasn’t being taken seriously. Another medical opinion was sought. Meanwhile, Scott was using so much Mylanta® and Gelucil® that, if he had cut his arm, he would have bled white not red!! He was experiencing a lot of gastric reflux, when eating, and sweated profusely with physical exertion.
I was trying to do what I could for him too. We used Travel Well Ginger Capsules® for nausea.
Later, another doctor, thought Scott might have anything from an STD to Hepatitis. Scott insisted he didn’t have an STD! Blood tests were negative for hepatitis, but showed that Scott had had Ross River virus, sometime. Zantac® was prescribed for the stomach problems, blamed on stress.
We tried two aromatherapy oils: peppermint for the stomach, and Ylang Ylang® to relieve nervous tension, stress, mild anxiety and insomnia. Additionally, Scott experienced some stomach wind and bloating. He took charcoal tablets when necessary. He also had mouth ulcers to cope with.
Scott returned to the second doctor, still complaining.
* November 1997, he had an endoscopy. My father-in-law moved in to help me with Scott. Once home, Scott slept twelve hours straight. His whole body was quaking with tremors, from his toes to his head. I was very worried, and wouldn’t take my eyes off him for a second! More blood tests were taken, but they showed negative. The doctor advised Scott to learn to relax, and see a psychiatrist, as perhaps it was all in his mind. The doctor also enquired if mental illness was in Scott’s family. Scott naturally, never went back to THAT doctor again!!!
Scott was having particular food cravings during this time: spoonfuls of Vegemite® (Yuck!), prawns, popcorn, salt and vinegar chips, pig’s trotters, ox tongue and large deep- fried dim sims ( + heaps of salt), liver and pate. He experienced leg cramps and blurred vision.
* January 1998, Scott weighed 99kgs, was still doing shift work, and still feeling unwell. He had more days off work. He was tired, sick, and had had a “gutful of bloody doctors!”
* February 1998, was the same. Scott would feel hungry, eat and then throw up violently. Sometimes he’d feel panicky, with palpitations, like he was having a heart attack. At night he had to urinate often. I checked for diabetes, but the strip result was ‘normal’.
* March 1998, Scott strained his shoulder and neck at work, and had more time off. Work requested that Scott have a medical, and visit the Occupational Health Nurse. The report showed he was slightly overweight, and had a higher than normal result for alkaline phosphatase, alanine transaminase (ALT), Gamma Glutamyl Transferase (GGT) and cholesterol.
Socially we went to a family wedding, but during the meal Scott started to sweat profusely, felt very weak and couldn’t drive home.
I purchased an Omron® Automatic Digital Blood Pressure Monitor, and a Braun® Thermoscan Ear Thermometer, to keep a check on things.
* April was a better month, Scott went horse riding, and had one sick day.
* May was like having flu again. Scott’s skin looked “grubby”, especially on the forehead. I thought the sweat from his riding helmet was causing the “grime”. He still experienced heart palpitations.
I was wracking my brains for an answer, and generally going frantic in my efforts to help my husband in any way I could. The medical profession didn’t seem to be able to do much. I pride myself on finding out about Addison’s Disease before Scott was diagnosed. I had been reading an American health book: “Listen to Your Body”, ( edited by Prevention Magazine). It listed all the symptoms of Addison’s disease, and even mentioned John F. Kennedy managing to live a normal life with it.
* June 1998, Scott finally plucked up the courage to seek another doctor ( No. 3). Scott was tired, nauseous, and felt like he was dying. He was given Pepcidine®, and Zantac®, and asked to come back in two months, as the doctor was going overseas.
Scott couldn’t wait that long. He was having feelings of foreboding, nightmares, bad waking dreams, and had had his first migraine. He went for a brain Cat scan on 27th June. It was clear, no tumour. An ECG suggested the heart palpitations might be linked to the Wolff Parkinson’s White Syndrome.
Then things REALLY started happening – medically speaking.
* 6 July 1998 – full blood count, tests for hepatitis and diabetes.
* 10 July - Chest X-ray looking for tumours, and tuberculosis.
* 13 July – Cat scan of abdomen, and Barium X-ray.
* 14 July – ACTH Test for Addison’s Disease
* 16 July – Diagnosis of Primary Addison’s Disease.
* 21 July – Prescribed medication: Cortisone Acetate.
Scott was referred to a doctor who also put him on Florinef. He explained Scott’s body produced antibodies.
At 4.30pm, Scott took his first Cortisone tablet. Between 4.30 and 8.00pm, he felt tingling all over his body, then pins and needles on his tongue, lips, fingers, hands and feet. He had sweaty palms and was very uncomfortable. His jaw felt tight, he had a stinging sensation in his nose when breathing, experienced shortness of breath, and found his fingers and toes very cold. I was extremely worried, and rang the chemist. He advised that Scott was probably having a mild reaction to the medication, and to stop taking it immediately, and go to the doctor ASAP.
His specialist suggested a graduated dosage, increasing the Cortisone by half a tablet each day. We were to report on the side effects. By day 6, Scott was on 7x 25mg Cortisone. He was very moody, so it was too much. The dose was reduced down gradually back to one tablet twice a day. This way we found out the best dose for Scott.
Scott developed thrush and boils.
* August, had more blood tests. The dose was increased to one tablet 4 times a day for a week; then reduced to one tablet in the morning, and half in the evening with food. All August was off work.
* September was similar. He was referred to an endocrinologist who was very helpful. He explained about Addison’s disease, and did a full physical to rule out any other problems. He suggested Scott was suffering from a physical stress, and under medical supervision was advised to increase the Cortisone to treble the dose for two days, then drop to double for two days, and then back to his normal dose. He also mentioned that Scott could have died “any old tick”.
Another wedding in October, was the first outing we had been to in five months. After we got the wedding photos back, I noticed Scott seemed to have a marvelous tan, despite being home all the time.
More blood tests followed, and a visit to an eye specialist. Scott was very depressed. He was advised to exercise gradually, to increase fitness levels. The doctor also explained that people who lose their ‘health’ often grieve, and can become over-anxious about themselves.
* November, Scott went swimming and riding again. With the doctor’s consent, he started mowing the lawns and walking the dogs. By the 18th, he was back on “light duties” at work, doing a different job. He was told he couldn't continue his previous position, as the employer wouldn’t accept someone on medication. Going back to work was hard physically and emotionally for Scott. He just took one day at a time. The guys at work either treated him like a “bludger”, or thought he had AIDS, worried they would catch it too. So they avoided him like the plague.
* December, he worked day shifts. He weighed 106kgs, and had very itchy feet with red blotches. Scott was prescribed Diprosone® cream for a fungal infection.
* April 1999, Scott’s employer wanted him to “retire on medical grounds”. Scott’s specialist supported contesting this. The specialist wrote that Scott had had no problems since diagnosis and medication, he’d recovered energy, had no vomiting episodes, and had normal blood results. Scott had made it through a Queensland summer, and should remain a valued member of the workforce.
* July 1999, Scott had an abdominal ultrasound looking for gallstones. No stones, but his liver fats were quite high, and probably caused great discomfort, so he’s been on a low fat diet.
* May 2001, Scott weighs 102kgs. His health is good, or the best it has ever been. Liver fats still high, cholesterol, 4.7. He sees his specialist every four months, and is working full time on a seven-day rostered day shift. He still worries about his health.
25mg Cortisone Acetate 2x day with food, and 1x 100mcg Florinef am.
He functions better if he has his medication before 8am, and 8pm. He also tries to have a sleep-in on the weekends he’s not working. This routine seems to help. Scott carries spare medication for work, in the car, and I carry some in my handbag.
Scott knows himself, when an adrenal crisis is coming. He feels: irritable, over-tired, verbally cranky, physically aggressive, dizzy, nauseous, and has vision disturbances (those white squiggles). I know just by looking at him. I quickly whip up some instant noodles, and give him one cortisone tablet with a drink immediately. Five white blotches appear on his cheekbones, and the skin under his eyes gets dark and puffy.
Our doctors have warned us to be wary of being injected with ‘live viruses’, with regard to immunisation. Scott has had Hepatitis A and B injections, with few side effects. He did recently discover he also has an allergy to the antibiotic Cephalosporan, after being given Ceclor CD® for an infection.
Scott has Medic Alert® membership, but had to make a complaint recently, when paramedics didn’t take notice of the information on his necklace and card.
The Good news
My father-in-law agrees with me that Scott is now the healthiest he has ever been. So, to all those with life-threatening illnesses, and all the wonderful people who care for them….there is hope, we just have to take one day at a time.
Scott and Alison’s Tips and Tricks:
· For a ‘bad day’, Alison gives Scott one St. John’s Wort tablet with food. It has a sedative effect, and ‘knocks him out’ for a while.
· Lucas’ Pawpaw® ointment, and/or Comvita manuka® Honey for wound healing; Poke Root Herbal Ointment® for sinusitis and earache; Ylang Ylang Aromatherapy Oil®; Ego® Fungo cream & QV Wash®; Canesten® for thrush; and Staminade® sports drink.
· All our house windows are tinted, and we have whirly birds in the roof for cooling in the hot Queensland summers.
- Take medication on a regular basis
- Recognise when you need more rest
- Recognise the signs of a health downturn or an Adrenal Crisis, and respond to them quickly
- Be persistent, and work together