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The Genealogist - UK census, BMDs and more online
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Case Histories
If you find this site useful and would care to towards the continuing costs of maintaining ADNetwork, please click the button Thankyou, (MLW).
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The Genealogist - UK census, BMDs and more online
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Case Histories
One question that recurs constantly is 'Am I alone in struggling with Addison's?'
Whilst some symptoms vary from patient to patient, others are common to most. By publishing case histories we hope to show patients being tested for this condition that they are not alone in their (sometimes) struggle to obtain a satisfactory diagnosis. Whilst some have endured several years of symptoms before diagnosis, others have been lucky and have had their endocrine problems sorted out rapidly.
We are pleased to present a number of case histories, written by the patients, to show how their diagnoses were obtained.
We aim to gradually increase, and ultimately to rotate, case histories presented on this page and we would be pleased to receive copies of new case histories to consider for publication here. If you would like to submit your case history, please use the e-mail link on the 'contact us' page. Whilst we would like to credit you for your article, if you would prefer to remain anonymous please make it clear to us at the top of your article. However, so that we may contact you in case of any query, you must include your name and valid e-mail address with your article but the former would not be disclosed by us if you have requested anonymity.
It makes life a little more interesting to be able to picture the person who has taken the time to write an article for this web site. We will be pleased to consider including a small photograph of you alongside your article if you wish. Please send it together with the article. It must be in JPEG (.jpg) format and be identified with file name and size in KB in the body of your e-mail.
I am indebted to those caring Addison's patients who have already taken the trouble to send me their case histories and other articles for publication. My sincere thanks to every one of you.
Case histories currently listed in order as follows.
Subscribers' E-mail addresses will not be disclosed by us in any case.
This offer also applies to any other articles submitted to this web site for consideration for publication in other relevant pages within the site.
Please click on any name to select.
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CASE HISTORY [a]
ALISON M. HIRST
In June 1998, I contracted pneumonia. I had already had pneumonia on two previous occasions. At that time, I was working with the Ambulance Service and had been off work for two weeks. During this time, I was getting a lot of hassle from my Divisional Officer for "the operational difficulties" I was causing by being off sick and although I wasn't properly recovered, I went back to work against my GP's advice. On my return, I was basically forced into working night shift at "T in the Park" which is an open air weekend concert.
It was extremely wet and cold that night and I became very unwell, to the point of collapse and one of the doctors working at this event examined me and approached my boss and told him that I had to go off duty and go home because I was still showing signs of pneumonia. I went straight back to my GP who certified me unfit for work - again.
After another two weeks off, I had to go back to work because of the threat of disciplinary action. However, I didn't ever really feel like I had recovered from this illness and constantly felt tired and very run down. Strangely, not long after this, I suddenly started having problems wearing my contact lenses. I put them in and after only 10 minutes or so, they dried out so much that they actually would "drop" out of my eyes. I went to see my Contact Lens Specialist and he carried out a full examination of my eyes. He informed me that my tears did not have any oils in them and therefore were not lubricating my eyes properly, hence the reason my contact lenses were drying out. He reckoned that something had happened to my metabolism and that there was definitely a problem, but it wasn't purely ocular, but was systemic. He admitted that he didn't know what the problem was - he wasn't a doctor - but suggested trying supplements, including Cod Liver Oil, Omega-3 and Evening Primrose Oil to see if there was any improvement. Unfortunately, there was no improvement, I just suffered terrible vomiting. I went to my GP and explained what had happened and she referred me to the Eye Clinic at my local University Hospital. They could find nothing wrong apart from slightly opaque lenses, which they reckoned was congenital. I have not been able to wear contact lenses since.
January 1999 came, and with it brought a flu epidemic, and despite taking loads of precautions, it got me!! I took a long time, about 6 weeks, to start to get over it and again, I did not ever feel particularly well again.
I spent the rest of the year struggling with my health and work and took the initiative to approach my GP to ask for both flu and pneumonia vaccinations to try and beat my susceptibility to both these viruses.
I was working night shift at the Millennium and then on 2nd January 2000, I became quite ill. I had the most terrible abdominal pains, sickness and diarrhoea and was terribly run down. After two or three weeks, I was still suffering terribly with sickness and diarrhoea and had lost a terrible amount of weight. I went back to my GP who arranged a battery of tests, including those for food poisoning. On telephoning the surgery, the nurse told me that all were normal. It wasn't until I went back to see my GP some weeks later (still suffering from sickness and diarrhoea, and even thinner and weaker) that I was told that I had very raised levels of bilirubin in my blood.
My abdominal pains, diarrhoea and vomiting continued daily over the next few months and I had lost over 3 stones in weight. I was getting bad headaches every day, sometimes so bad that I had to lie down in a dark room and keep very still. My GP prescribed fairly strong opiate based painkillers for the abdominal pains and headaches, but these were not having any real effect on the pain. I ended up taking far more than I was meant to, and although I should have known better, ended up with a definite problem with them. So, as well as feeling so ill, I now had to contend with trying to wean myself off painkillers. I was really struggling with work and everyday life. I kept forgetting things, had to keep writing notes for myself, couldn't concentrate and felt so exhausted that when I wasn't vomiting, I was sleeping. I kept having dizzy turns and fainting - my blood pressure was regularly only 80/40. I kept having palpitations, felt agitated and seemed to be suffering extremes of temperatures - I was either shivering with cold (even though it wasn't cold) or absolutely sweating. There was no "happy medium". I was also terribly thirsty and drinking copious amounts of water, then promptly vomiting it back up. I had the most terrible cravings and was eating between 4 and 7 packets of Pickled Onion flavour crisps per day. My GP knew there was something wrong with me, but she couldn't pinpoint what. She referred me to Medical Out Patients at the hospital and after a battery of tests, they told me there was nothing wrong with me. After having fainted for the fourth time in my GP's surgery and the pain I was experiencing, she thought that maybe I had gall-stones, so she had me admitted to hospital as a surgical emergency. After yet more tests, I was told that my gall bladder was inflamed and infected and that they were going to remove it. Needless to say, I became very upset (something that had been happening a lot too) and weepy, so the doctors decided to try IV antibiotics for 10 days. I think I had every test known - scans, x-rays, Endoscopy and Flexible Sigmoidoscopy to name but a few.
My symptoms were still on-going and I was barely coping with day to day life and work. I was weepy, crying, fainting, and vomiting almost all the time. I seemed to be sore from head to toe and couldn't carry patients because I was so weak. I ended up falling asleep in the ambulance every day, my partner having to "give me a nudge" when I had to get out and actually work and when I was awake I was constantly sitting with a sick bowl. My Divisional Officer was giving me a really hard time and I just seemed to be getting worse and worse. He kept threatening me with disciplinary action and dismissal if I was off sick again. Eventually, he referred me to Occupational Health Service because he was so sure that I was "putting it on" and that the doctors there would confirm that. The day of my appointment, the consultant at OHS took one look at me, told me to go home and phoned the Divisional Officer to tell him that there was no way I should be working. The OHS doctor then began corresponding with my own GP to try and get answers to what was wrong with me.
I then started to produce breast milk and initially thought it was maybe something to do with contraceptive injections. I had mentioned it at the Family Planning Clinic and they did a blood test. My prolactin levels were through the roof. By sheer chance, I happened to mention it to my GP and she checked back on the test that the Family Planning Clinic had done. She immediately referred me to the Endocrinology Clinic and I was seen pretty quickly. I had various tests done - SynActhen test, Insulin Stress Test and umpteen others that the Consultant didn't bother telling me about. I knew that he thought I was imagining it all because he had read through my notes and seen what the other doctors had written. When I had to go back for my test results in August 2001, he looked at me as if to say I was wasting his time. He then looked at the test results and his chin nearly hit the floor. He told me I had Addison's Disease, told me that it was adrenal insufficiency and that I didn't produce steroid hormones and that I would have to take steroids for the rest of my life. He gave me a letter to take to my doctor for medication and really hasn't had any interest in me whatsoever since then. He sees me, now yearly, and isn't interested in anything I have to say. As far as he is concerned, he diagnosed me, gave me medication and I should be absolutely fine.
I did try and go back to work, but once I had got a diagnosis, my employers wouldn't let me return. I argued back and forth with them for over two years, but they would not let me work in any capacity.
Return to list of case histories CASE HISTORY [b]
JENNIFER WILSON
Part I: Hyperthyroidism
Dundee, Scotland
After further tests, including a genetic test, it was discovered that I had Gilbert's Syndrome. Although this is not meant to cause any problems, it can cause abdominal pain and nausea and an intolerance to anything vaguely "fatty". It's something to do with a liver enzyme and can make you become a bit jaundiced.
They then decided that they would leave my gall bladder alone (thank goodness!) and discharged me with a follow up appointment. When I went for this appointment, I met with the Surgical Registrar who informed me that every test was "perfectly normal" and I probably only had Irritable Bowel Syndrome and the rest of it "was in my head". I was to stop thinking about myself so much and just "get on with it".
He doesn't believe in crisis, has never warned me about them and wouldn't give me an emergency injection kit. In that time, I have had three crises and had a terrible time at the hospital with them not knowing what to do with me. By good luck on these occasions, I managed to take oral Hydrocortisone and although I was sick, took more and more until I thought I had managed to get a decent amount in my system. On my last Endo appointment, I told him about these crisis, only to be told that it was nothing whatsoever to do with my Addison's - that was under control. He still refused to give me an emergency injection kit and so I went to my GP and she prescribed Efcortisol (although I couldn't get the nurse to give me syringes and needles at first!! What did she think I was going to do with them??).
They eventually terminated my employment at the end of September 2003, saying that my health was "too unreliable" to continue my employment.
Austin, Texas, U.S.A.
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My endocrine system problems began with hyperthyroidism in my early 20s. I was under a lot of stress while trying to finish my undergraduate degree at the University of Texas. A female professor that I worked part-time for noticed that I had lost a lot of weight over the last few months. My eyes were bulging and my hands were very shaky.
She suggested that I go to the student health center and instruct them to draw blood and test the thyroid hormone levels because she had experienced the same problems. I did as she suggested and the blood test results came back with abnormal levels. The student health center referred me to an endocrinologist (Dr. Simona Scumpia) for further diagnosis and treatment.
I followed up with Dr. Scumpia immediately afterwards, was diagnosed with hyperthyroidism, and began taking medications to bring my body back to normal. I cannot remember what drugs I took, but I do know that my body responded well to the medication. After about 1.5 years of treatment, over which time my medication was gradually decreased, I no longer had to take any drugs to treat the condition. I was “cured” for about one year and then the hyperthyroidism returned. Again, I took medication for about 6 months, the condition subsided, and I went off the drugs.
By this time, I was in my mid-20s and trying to finish my graduate degree at the University of Texas.
Part II: Addison’s Disease and Hypothyroidism
In my late 20’s, I began to suffering from severe fatigue. I was taking days off from work to stay home and sleep all day. This made my active lifestyle very difficult - I was a competitive athlete in two sports, often worked for weeks at a time in the field as a hydrologist, got in about 2 hours at the gym (cardiovascular exercise and weight lifting) when not at practice for my teams, and was very social (out on the town almost every night). I also had very dark skin. I tan very easily and work many hours outside during the summer (always wear SPF 30), so the dark skin wasn’t unusual during the summer months. However, my skin remained dark into the winter, which was odd. My skincare specialist recommended several creams and treatments to lighten my skin, but none worked. At this same time, I had insane salt cravings.
I have never been one to enjoy sweets and grew up sucking on dill pickles and limes with salt. But, these cravings were becoming more and more intense to the point that I was consuming massive amounts of salt daily. When I worked out, I would get white salt deposits on my skin. I was experiencing lower abdominal pain, which made sexual intercourse uncomfortable on top of the fact that my libido had hit rock bottom. I also had frequent upper respiratory illnesses, always felt cold, and painful urinary tract-like infections.
The extreme fatigue was the main symptom that indicated to me that there was something wrong with my body. I made an appointment to see my general care doctor, my gynaecologist, and a urologist in my efforts to overcome my ailments. The general doctor ordered blood tests for diabetes and other common conditions and found nothing. My gynaecologist ordered an ultrasound and found nothing. The urologist found nothing as well. Luckily, I had an established relationship with an endocrinologist and made my next appointment with Dr. Scumpia. This appointment was in March 2003. I explained my condition to her and she immediately commented on my dark skin - it was really dark! She ordered the necessary blood tests and let me go home.
A few days later, the Dr. office called and told me that my thyroid was low and issued a prescription for Synthroid. After a few more days, Dr. Scumpia’s office called me and told me to come in immediately because I was suffering from severe adrenal deficiency - unfortunately, I was out of the state and unable to return for another week. Over that week, I proceeded to become ill with another respiratory type of sickness. When I returned to Texas and went into Dr. Scumpia’s office, another test was performed where I was injected with a substance and then had blood drawn at two time intervals after the injection (don’t remember the name of the test - sorry).
(Sounds much like a SynActhen Test........ Mike)
Part III: Post-Diagnosis
After being diagnosed with Addison’s Disease, I was prescribed cortisone (Cortef) and Florinef. The dosages of Synthroid, Cortef, and Florinef have been adjusted over the last year relative to my blood test results. I was relieved of fatigue within the first day of taking the Cortef. My skin has lightened to a normal shade over the last year. I have not had a respiratory illness in over a year, despite the horrible flus and colds that have passed through this region of the United States.
I no longer experience any pain in my abdomen or UTI-like feelings. I receive a bone density scan every six months and have normal bone density at this time. Unfortunately, I have gained a large amount of weight on the medications (about 25 lbs.). I still receive as much exercise as I did before diagnosis with Addison’s and I probably eat less and better now than then. The Cortef is what I believe is responsible for my body accumulating fat over the muscles throughout my body, but especially in the mid-section. The Florinef makes me extremely bloated and gives me horrible flatulence.
I have never gone to the hospital for an Addisonian crisis nor have I had an intramuscular injection of the steroid. Now that I’ve joined the Addison’s Yahoo group and read others’ experiences with the disease and drug, I feel like I will be better able to manage my condition. I have probably experienced crises two or three times over the last year, but didn’t recognize them. They occur when I’ve had too much to drink and so I think they’re bad hangovers. Now, I know to take extra medications when feeling ill. And I am going to begin reducing my Cortef as much as possible while keeping my energy level normal.
My prescribed dosages are:
My new self-prescribed dosages are:
I’ll see how it goes and take good care of myself. I see Dr. Scumpia about once every six months. At my appointment last week, she ordered a 24-hour urine collection, which I’ll do next weekend.
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CASE HISTORY [c]
MEG BLYTHE This is not a straightforward case history. It is the history of a 58-year-old woman, who has multiple illnesses, COPD and Emphysema being two of them. I was on a follow up appointment after having laser surgery for pre-cancerous cells of the vulva, when my Gynaecologist looked shocked. She asked me where my weight had gone? I said that I had been to my GP who had taken no notice of me. I had lost 28 pounds. She responded by telling me to go back to my GP and demand an investigation. I did this & was referred to a Gastro-Enterologist who tested me with everything under the sun but found nothing. He labelled me as the ‘Mystery Lady’ and referred me to a Haematologist at the same hospital. Bearing in mind, unknown to me, another Haematologist at a different hospital had been sending out letters to my GP, informing her that my blood platelets were extremely high, but I was not informed by my GP. I was then diagnosed with a Myeloproliferative disease, Essential Thrombocythaemia, which is rare. This is a blood malignancy, which isn’t considered as a cancer. I began chemo treatment, which made me very ill. I wasn’t happy with the attitude of the Haematologist so went back to my GP and asked for a second opinion. He didn’t argue with me, but referred me to another hospital. Thankfully, it was the same hospital and the same haematologist who had written to my GP since the late 90’s warning her of my blood platelets.
Even though I was receiving good treatment from a wonderful doctor, I was constantly ill. On one occasion, I was admitted to hospital, my hemo started investigating for an underlying cause for this illness that was always with me. He worked together with a biologist and finally came up with Addison’s disease. He performed a SynActhen test, which proved positive. I was then given lots of scans and ultra sounds ending with an MRI scan. For anyone who does not know what an MRI scan is; you are put into a cylindrical contraption where cross section pictures are taken of the adrenal system. They found that my pituitary gland was not working at all and my thyroid was very inactive. I was started on Hydrocortisone immediately, plus thyroxine.
Most importantly, my hemo checked all the drugs that I was currently taking, then he began to change them. I was then introduced to a senior consultant in Endocrinology. His continuous laughing put me off him right away. He told me that I may have a tumour, whilst laughing!!! I asked my hemo to get me another Endo. The laughing endo actually said he could cure me!!! Thankfully the hemo did arrange a second opinion. This endocrinologist doesn’t limit his time with me either.
I tried to learn everything there was to learn online about Addison’s disease. I was then told that I had Panhypopituitarism. I was totally confused then, and still am.
I have learned to recognise the threat of a crisis. I have 2 emergency injection kits and a spare Hydrocortisone course for when I have to double up dosage.
I joined the Addisons list site on Yahoo and have learned so much from the addisonions there.
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CASE HISTORY [d]
SANDY BRAWNER In 1989 we moved from Orlando to Texas. I really didn't want to move. It was our 18th move since we were married and I usually adjust quickly. This time I didn't adjust well at all and cried almost daily for months. I was just not myself. I got a job working at the middle school and tried to fit in but something was not right. I joined a group of quilters at the school and one March night we had a "pot luck" dinner. Nine of the eleven of us got food poisoning. It took me a week and a half to get over it and everyone else bounced back in a day or so.
I never did totally recover and soon started showing other symptoms of Addison's. Since then I have heard that a serious illness can bring on the Addison's faster. I began to have dizzy spells, my heart raced and you could actually see my heart beating! My skin started turning dark, including blue gums and also the palms of my hands. My appetite began to disappear. During this time I went to our GP several times and they decided that I was "going through the change" and gave me Premerin. That did no good so they decided that I was depressed and tried Prozac. That also did nothing. I think they thought I was a hypochondriac. By this time I was dizzy almost constantly, very lethargic, ate a small amount every 2-3 days, slept much more than normal, and my skin was so dark that I looked like I was from Sri Lanka. I had promised my mom that I would drink an Ensure at least once a day. That is what kept me going for about 6 weeks. I dropped weight like crazy, which was very odd because I have always been overweight. Finally, a friend told me to write down everything that was wrong with me. She said that it sounded like what was wrong with her nephew. That night she called to say she had spoken to her sister-in-law and her nephew had Addison's and it sounded like I did too. I called the GP and he said that I matched the symptoms perfectly. I went to an internist and he did several tests and I got the diagnosis of Addison's. I have been on Cortef/Hydrocortone and Florinef for almost fifteen years and lead a very normal life. I work everyday and own my own business with 24 employees.
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CASE HISTORY [e]
MIKE H. (Call me Big Mike)
North East England, UK
Texas, USA.
Colorado, USA.
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Hi Addison’s friends. When I first started to get sick, I was selling cars, which is a pretty stressful job. There was a guy there that used to say and do mean and hurtful things to all the other sales guys just so as to make them not be in the right mindset to sell a car that day. Whenever he would do this to me, I would get so upset, it would actually make me vomit. I would also feel bad for a couple of days – just kind of toxic in a strange way.
Then it got to the point where I quit selling and went back to painting houses – less money, but also less stress – or so I thought until my new partner started stealing from me. This job sent me to a point of being so physically tired that I had to lie down on the grass, then I would throw up, drink a lot of water and then force myself to go back to work.
This went on for about three months and then it started to be three and four times a day. I went to the doctor and he said that I must have an ulcer, or that I was just holding onto a food allergy or something. I got sicker and started to sleep a lot, my blood pressure started getting low and I was so tired, I could not work at all.
About two years pass and I am now vomiting 10 times a day. I had to go to a smarter doctor! He sent me to a Gastro doc after 3 months. I had an upper GI, a lower GI, took Prevacid, but nothing was helping. I started having severe pain behind my stomach and ended up finally getting blood work that came back with too high of potassium. I went to hospital with potassium levels of 8.3, (hyperkalaemia) and severe dehydration. This was in March of 2002. I got out of hospital feeling pretty good with being hydrated, but two weeks later, I got worse pain. Sleep, puke, sleep, puke, pick my one thing to do that day – like walk 60 yards to the mailbox and back (that feat would make me puke – we’re way past saying vomit any more!!!). Two more months of that, then back into hospital. Pain, puke and dehydration were my constant enemies, besides, of course, the constant fatigue. This time, I got a Kidney doc that listened to me telling him that I thought I might have Addison’s because I had all the symptoms. He was the one that ordered my ACTH stimulation test, which showed I had no adrenal function. Yea! Progress!
They put me on Prednisone and that made me feel better, but also made me gain a half a pound a day – and I’m already a 290 pound man!! Then they switched me to Hydrocortisone. At that time, my dose was 20mg in the morning and 5mg in the evening. I felt OK, but still not very good.
This lasted about 4 or 5 months and I ended up in the hospital again with severe pain in my abdomen. After about 10 days of severe pain, I finally talked myself into going to the doctor. They saw my condition and put me right back in the hospital. It took them about 5 hours to finally give me some pain medication – and then it was Dulaudin, with a machine I could give myself an extra 10mg every hour. They were also giving me 100mg per hour IV saline, dextrose and fructose. After several days of rehydration, I met a Kidney doctor who seemed like he knew what he was doing (more than my other doctors!). When he came into my room for a consult, after a brief discussion, I was able to tell him about the symptoms that I had and that they all pointed towards Addison’s Disease. I told him of my wife and my study of different medical books she had been acquiring to help fight my illness. It was during this conversation that I told my Kidney doctor that I needed an ACTH test. He agreed and scheduled me one for the following week. The date now, during our saga, is 15th November.
After my ACTH test, it was concluded that I have secondary Addison’s Disease. My meds prescribed to me were 20mg Hydrocortisone in the morning and 5mg in the afternoon.
This dosage went on for about three months, along with 0.15mg Fludrocortisone. After a while, I began to get dehydrated again. More severe pain!!! It got really bad after only a couple of days. Back to the hospital again to get rehydrated one more time!! This time, I got an Endocrinologist who had been in his field for 27 years and he said due to my body mass (at that time I weighed 300 pounds), I would probably need a lot more Hydrocortisone. That is when they upped my dose to 25mg in the morning, 20mg at noon and another 20mg at 5pm. This dose seems to be working pretty good as I am able to carry out a full 8 hour workday at a laborious type job. The steroids have made me gain weight at approximately 8 pounds per month for a year now. Also, because of the lack of adrenal function, there are also my hormonal abnormalities due to the fact that your adrenal glands help to regulate all of this function.
Well, that is about it. I have finished my story, true, but I haven’t mentioned how my day-to-day life is now. I had to buy a special alarm clock that has three settings on it – one at 5am, one at 5.30am and one at 5.50am. At 5am, I roll over and take 20mg of Hydrocortisone. I sleep till 5.30am and usually I get up. The third setting is for in case I fall asleep. I have a really hard time waking up. Once I get going, it’s OK because my meds have kicked in by then. I am in a lot of pain – the docs can’t pinpoint it.
I think my adrenals are sort of trying to atrophy, but I get this dull, constant severe pain in my abdomen. It’s not my stomach, but behind and to the right (looking out). I’ve been taking Vicodin, but now they don’t work. My Endo won’t give me anything stronger and the Vicodin constipate me so bad that my anus bleeds upon defecation. I have been trying to get off the Vicodin – four days without, but today, I had to take two.
I AM DEPRESSED all the time!!! I have gained 65 pounds in one year – now I weigh 360 pounds at 6 feet 1. Fatigue is my constant companion. After lunch, at about two, I fade, my mood sours and I have to force myself to move. Anytime I stop, I could fall asleep right there. It really sucks.
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CASE HISTORY [f]
MICHAEL G. Michael, since being a toddler, always took a long time to recover from viruses, especially anything that involved vomiting. After one particular episode when he was 4 years old he was seen at our local hospital, had bloods taken and an ultra sound scan which all came back normal.
During the year before his crisis he had a couple of episodes of bad stomach ache and vomiting which we put down to a rogue virus as no one else had been suffering from one. I noticed that I hadn’t had to buy him bigger shorts and t-shirts for the summer, which was unusual for a growing boy. Then in June 2001, when he was 6 years old, Michael caught a cough that was very persistent, but it was doing the rounds so we assumed that was all that it was. The doctors finally decided that he was suffering from asthma as the cough wouldn’t go, so they put him on a cocktail of inhalers. He was vomiting daily from the coughing throughout the summer holidays, but the inhalers did help alleviate his cough a little. He was back at school after the summer holidays in September, still coughing. Between going back to school in September and his crisis at the end of November I had to take him back to the GP’s surgery weekly. He had days of being completely exhausted, hardly being able to put one foot in front of the other, and another couple of episodes of stomach pain which ended with him vomiting.
At the end of November just after his 7th birthday, Michael was feeling unwell on the Friday but was able to go to school as usual. He was lethargic on the Saturday but wasn’t unduly unwell; he was able to eat lunch and just lay on the sofa watching TV all afternoon until about 3pm when he vomited. I felt that there was something wrong, more than just a virus, when on Sunday morning he appeared lethargic and dehydrated despite only vomiting a couple of times, so I rang the emergency doctor who told me just to get him to take more fluids. He couldn’t drink without being sick by then, and started to deteriorate alarmingly quickly. I noticed he was very cold and was turning blue around his mouth.
I rang the emergency doctor in a panic but he refused to come out and see him, insisting that we took him along to the surgery (in the opposite direction to the hospital).
We took him straight to the hospital where we were ushered into the isolation unit, which made a very frightening situation even worse. Once admitted to the hospital they assessed him; he was having so many blood tests he would scream with pain, but after X-rays, a Synacthen test, and lengthy consultations, they diagnosed Primary Addisons Disease. As soon as they put him on hydrocortisone and fludrocortisone his cough went completely. Michael is the first child with Addisons Disease that our Paediatrician has treated after 22 years of being a doctor.
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CASE HISTORY [g]
DEBBI SLATER
I was diagnosed 3 years ago after a long slow decline in health. It started in June 2000 with an attack of vertigo and continued from there. I began losing weight (I was originally 9 stones and I'm 5' 6" tall.) which I thought was great at first but when it continued I began to worry.I ended up at 7 stones on admission to hospital. I was working as a Teaching Assistant with behavioural kids at a large senior school so was busy all the time. I began to feel lethargic and got to the stage where I was not functioning properly at work so went off sick in the October. Had lots of bloods done by GP and he was worried about my sodium and potassium and decided to keep and eye on it. So I was having blood tests every 10 days or so. Then I saw another Dr as I was felling particularly poorly and he did a Coeliac screen. This came back positive so I then went for a biopsy of the stomach. That proved I was Coeliac. Hooray! we thought, a diagnosis! This was just before Christmas. I got better with the gluten free diet but took a major nose dive over New Year. It got so bad my mum was looking after me and my kids when my husband was at work. I could barely stand and my appetite was non existent. I was going back and forth to the docs with no real answers. Then one Saturday morning I went to see the emergency doc and he couldn't get my BP at all. He phoned the hospital to get me a bed but I didn't want to go. Good job I did go!! Mind you it took them 10 days plus numerous tests and injections before they hit the right diagnosis.They gave me the hydrocortone and it was magic.
They let me out of hospital the next day after I persuaded them that I would do better at home. I had 6 months off work in total.
Since diagnosis, I have lurched from one problem to another, having various attacks of vertigo and general illness. I have just re read the side effects of hydrocortone and discovered that I have most of them including osteoporosis. I am seeing my endo on 22nd Jan so will be discussing lots of things then. Namely, is there something else I can have that doesn't give me all these problems? They are having a knock on effect with my family and I am finding my life quite restricted which I do not like at all. I seem to be getting worse now. I thought we were supposed to be OK on meds. Ha! Ha!
Hope I haven't bored you with all this and that it is useful to you. Take care and keep well.
P.S. ---- Have seen my endo and had my hydro increased to 10/10/5mg instead of 10/5/5mg. and feel better. Have also started DHEA and am waiting to see if it improves anything at all. I think the DHEA is working as I feel more lively and have more stamina.
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CASE HISTORY [h]
VEE WALLER
I am aged 38 and was diagnosed with Secondary Adrenal Insufficiency in August 2001 after being ill for a year.
I suffer from a connective tissue disease called Ehlers-Danlos Syndrome which has resulted in me having numerous surgeries to my knees including Bilateral Total Knee Replacements. I had my first replacement in September 2000 and didn't really recover as well as I had after previous surgeries but I put it down to depression through the major surgery. At New Year I got a severe pain in my knee and my GP admitted me to hospital with a suspicion I may have fractured my leg as I have Osteopaenia - a pre-curser to Osteoporosis. The X-ray showed no fracture but a screw was working it's way out of my shin so I required another surgery to remove it.
After the op my Anaesthetist came to see me and I had such a terrible headache as I was dehydrating; I hadn't required IV Fluids as it was a minor op. I was also having a Hypoglycaemia attack. The anaesthetist wasn't happy at my condition and said my GP had to refer me to a Physician for investigation.
Unfortunately I didn't see my usual GP and the one I did see just said to "leave it for now and just to see how it goes". Over the next six months I was pretty much in a daze constantly and my memory was awful...
I would be in the middle of a telephone conversation and I'd have to stop and ask 'What were we talking about?' - I was so embarrassed. I began to have severe Hypo's to the extent that my Blood Sugar Levels were going to "Below 1.4mmol". I was also waking on a morning and having a bath and needing to sleep again as I was totally exhausted and having severe weakness to the point I was unable to stand without the use of my crutches. I was having diarrhoea which always subsided by early afternoon. I was so unwell I didn't realise I was...if that makes any sense!
By June I was so ill I saw my own GP about the Hypo's and she referred me to an Endocrinologist but couldn't get an appointment to see him until October. I called his secretary in desperation and she got me an appointment to see a nurse at the Diabetes Care Centre where I had numerous blood tests but they were all clear for Diabetes so there was nothing she could do so I just had to wait till October.
I then began to go into 'Pre-Coma's' on a daily basis as the Hypo's were so severe. One Friday I felt so desperate I called the nurse just as I had awoken from another 'collapse' and told her I was desperate and couldn't wait any longer. Ten minutes later I got a call from my Endo's secretary giving me an appointment to see him the next Tuesday. Whilst waiting to see him I sat in the waiting room in tears as I was certain he wouldn't find anything wrong with me as to me the obvious problem was diabetes. He took a long history and took blood samples for Glucose, Thyroid, FSH, Growth Hormone and some others I can't recall... oh and Cortisol!
A few days later I came home to a message on my answerphone from my Endo asking me to go into hospital for an ACTH Stimulation Test the next day.
All the staff were fussing over me... apparently there's quite a waiting list for their units testing but he had stressed I must be tested the next day. I was told by the Doctor the results would be back in 10 days; on this particular day I needed to go out so I called my Endo's secretary and left my mobile number. I hadn't even got out of the door and my mobile rang. It was my Endo who told me he was glad I had left the number as he needed to see me the next day.
After going through my blood results he told me I had Addison's and informed me of all the details and said he would like to see me the next week as he didn't want to overload me all at once and that I would have a lot of questions to ask. He gave me a script for 10mg Hydrocortisone - 1 tablet to be taken each morning - and told me to take one immediately. The transformation was unbelievable.....! No more severe hypo's, my memory improved, no total exhaustion. He also gave me an injection kit for emergencies. After a few weeks I began to feel exhausted after lunch so he added another 5mg at 5pm which helped a little. A couple of weeks later he added another 5mg at 1pm which made all the difference.
Three months after diagnosis he suspected my steroid inhaler for my Asthma was the cause of my Addison's so he reduced my dose and admitted me for 12 days when he performed several tests including a repeat ACTH Stim test after stopping my steroids for over 48 hours.
{Vee contacted me about details of the conversation regarding steroids in asthma inhalers, asking if I knew whether the inhaler HC might have caused her Addison's disease. I am not qualified to judge this, as my qualifications are scientific and not medical, but I was able to point out to her that the dose of HC, which she indicated is high at 1600microgrammes per day for lung aspirated steroid, only amounts to a minimal 1.6mg per day extra for a patient with Addison's Disease (slightly over a 5% increase for an AD patient on full replacement therapy of 30mg per day): Mike.
I was discharged on 10mg Hydrocortisone daily as he was certain my adrenal glands would have recovered after reducing my inhalers and oral steroids but I began to feel terrible. In desperation I added another 5mg HC to which I felt a little better. He called me a few days later and asked how I was so I told him I felt dreadful and had increased my dose. He apologised and told me to go back up to 20mg HC immediately. My Stim Test results were Cortisol baseline 41 and Stimulation 127.
One thing I have noticed since the repeat stim test is I just don't feel right. I can't really put my finger on what but I'm more tired and generally not as good as I was those first six months. I do know my DHEA levels are pretty much non-existent but my Endo doesn't know enough about it to prescribe it.
I have thankfully only had one crisis which was through mild gastroenteritis with which I had the runs but only vomited once but I quickly became dehydrated and was admitted. I was given IV HC and fluids. My Potassium dropped to 2.7 and after IV Potassium and tablets it still took 2 months to stabilise. I can tell when mine is low as my joints become very loose.
I've now been diagnosed 2 years and 8 months and have had several surgeries of which I always have a rough time coming back down to my maintenance dose of steroids. I had surgery 3 weeks ago and I didn't see my Endo as he was away. The doctors on the ward basically allowed me to control my own taper and I must admit it was the best taper I've had...
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CASE HISTORY [i]
Colleen MacLeod's son.
To tell my 20 year old son's story I will quote an excerpt from one of his university applications:-
"I want to tell of my personal triumph over the devious affliction called 'Addison's Disease'.
School work was always an energy drain. I was lucky to be able to do fairly well, by listening in class. This sly disease played its dirty tricks undetected, without taking any ownership, until I was 17. By then everyone, myself included, realized I wasn't just lazy or unmotivated, I was sick and getting sicker. Legions of doctors couldn't diagnose what was causing me to be beyond exhausted. Grade 12 was torture, for perception problems and extreme sensitivity to light and sound interfered with my ability to learn.
I wasn't able to graduate, for by June, I couldn't read, write or look at a computer screen. We flew to see doctors in the Yukon in June and Toronto in November, but no solution was found. By the end of March my quality of life was very poor, in bed all day, insomnia, tinnitus, sound and light sensitive, low blood pressure, twitching, walking with assistance, hyper-pigmented skin, couldn't eat on my own, craved ¼ cup of salt a day, kidney stones, weighed 137 lbs at 6 ft 5, heart rate 37, in short I was dying.
At that point my family finally found a doctor in the US (Dr Bruce Rind MD). This was the turning point and under his care I gradually began my journey back to the land of the living. I can identify with 'Rip Van Winkle' for I have reawakened and am catching up on the events I missed when incapacitated."
Dr Rind worked with us by phone through our own doctor, using blood tests and our anecdotal notes. He put him on nutritional supplements designed to build back his adrenals, with desiccated adrenal, bioidentical cortisol, Florinef and other medications. He also followed a diet free of dairy, all grains and refined sugar.
At this point he is working on two Grade twelve correspondence courses, pre-cal and English, able to go out with his friends, up all day, able to sleep at night, all his symptoms subsided except he is still not as strong as a well person for he needs to build back the muscle lost during the inactivity caused by his illness. He still does not have the stamina his friends have, and still has trouble concentrating. He has gained 20 lbs and his heart rate and blood pressure are now normal. He is skin is pink not brown etc etc.
He does not need to take desiccated adrenal, cortisol or Florinef any more.
I did the survey and he had about 95% of the listed symptoms. He is still working on returning to complete health. He anticipates going to university this fall with most likely a reduced course load. I don't want to give false hopes to anyone, but I hope there are individuals on this list who fall into the same category as my son.
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CASE HISTORY [j]
Dawn.
On July 16th 1999 I had surgery (a hysterectomy) to remove (benign) fibroids. One ovary was also removed for a benign cyst discovered at the time of the surgery. It was a procedure I had been fighting for seven years after having researched it and found that that a hysterectomy can cause health problems for many women. However, unable to find a doctor willing (and skilled enough) to do a less radical procedure, I finally had no choice but to have this type of surgery for what were benign growths.
The surgery went well and I was discharged after three days. I was elated to be rid of the fibroids, which had made me look five or six months pregnant, and the heavy bleeding they had caused. Despite what I knew about hysterectomies from my research, I determined to have a positive attitude about the surgery in the hope that I would be one of the women who had a positive hysterectomy outcome.
The first day home from the hospital I noticed a lack of feeling emotionally connected to people I had been close to for years and who meant a great deal to me. There were physical changes as well; my skin was unusually itchy (especially my back) and I had difficulty sleeping more than six hours a night no matter how tired I was. The nurse who was coming to the house to check on me once a week saw nothing wrong with this inability to sleep but I did. After all, I had just had major abdominal surgery and I knew I needed lots of rest. Besides, I had always been able to sleep pretty well, getting at least eight hours sleep a night. Now, no matter how much I wanted to sleep, I couldn’t get more than that six.
The second day home I began experiencing painful cramping and diarrhea after eating. This worsened over the next few weeks. Initially my doctor and I thought it was related to the emotional stress of a surgery I had not wanted but in the coming weeks the symptoms only intensified and nausea and vomiting developed. I came to dread meal time and going out was impossible if eating was involved. I couldn’t leave the house for at least 2 – 3 hours after a meal for fear I would lose my meal from one end of me or the other in public. On one occasion I spent the entire evening in a restaurant washroom vomiting and with cramping and uncontrollable diarrhea while my friends ate dinner.
My Dr. prescribed stool softeners to help with the irritable bowel (they dry up the excess moisture associated with diarrhea) and although it did help some, it was only when we started me on estrogen therapy that the problem diminished in any significant way. This wasn’t the only problems I was beginning to have though.
Libido began to fail within a few weeks of the surgery and eventually disappeared altogether. Due to the nature of the surgery, I wasn’t completely surprised at this, just disappointed and distressed by it.
Within a couple of months of the surgery, I was having trouble making decisions, thinking clearly and remembering things. I couldn’t spell ordinary words yet I had been an excellent speller and writer. I seemed to have lost my sense of balance which was first noticed when I resumed cycling. I had a very physical job; lawn cutting and snow shovelling which I had been doing for several years with no problems. In fact, it had left me in very good shape for the surgery and a quick recovery. Now I was finding my muscle strength and stamina were declining. I was tired a lot. My doctor and I attributed this to the loss of testosterone from the surgical castration (ovaries are the main source of testosterone in women). I started on testosterone pills in addition to the estrogen therapy I was now on.
This seemed to help a little with the stamina and muscle strength but the libido did not return and nor did my stamina fully recover. After a few months of the symptoms persisting, we increased the testosterone dose but this did nothing for the problems I was having so we reduced it back from three pills a day to just two.
I noticed that there was very little hair on my legs or armpits, which was very unusual for me but at least it meant I didn’t have to shave them as often. The soles of my feet began to hurt a lot, especially first thing in the morning when one wouldn’t expect to have sore feet.
Then there was the growing fatigue. It was a strange kind of fatigue that didn’t seem to improve with rest. I was so tired, even when I awoke in the morning, as if I had never been to bed. Of course, by now I was only getting most nights about three hours of sleep and that was very fragmented and light. Eventually, even doing very little could bring this strange fatigue on. Stressful events were particularly hard on me now. Like a light switch, they could drain my energy rapidly and I looked it. When I told my doctor, she insisted I was depressed because of my history of post traumatic stress disorder (PTSD) and the way I had felt about the hysterectomy. She offered one of the SSRI antidepressants.(Selective Seratonin Reuptake Inhibitors.) I knew it wasn’t the kind of fatigue that comes with depression. It felt so different from that. Yes, I was depressed because I couldn’t do any of the things I wanted to do; like working on my computer, cycling, and reading, not to mention all the ordinary household tasks that needed doing and committee responsibilities which were now piling up. I was becoming unreliable and late with everything; so unlike me.
After researching the SSRI antidepressants my doctor was offering me in response to the fatigue, I refused to take them. They were not the answer. The estrogen hormone therapy had lifted the depression I had started to experience with the decline in estrogen and I knew this was a different kind of fatigue from depression. Before the surgery I’d never experienced any of these problems. We attributed them all to the hysterectomy and the hormone loss it causes.
I struggled on at work but by the winter of 2002 I was having so much trouble with lack of muscle strength and stamina, I had to pay someone to do some of my work. I had been doing this kind of work for eight years, but I was now no longer up to it and I didn’t know why. My armpits were strangely devoid of sweat (which saved on deodorant), yet when I did any physical work my face and head would run with perspiration like I had just stepped out of a shower. This was new for me.
From the early days post surgically, I had noticed that my sense of smell had heightened. I attributed this to my history of PTSD and the trauma of the surgery for me. This increased smell sensitivity could be quite annoying at times. I would bring my car to my mechanic thinking there was something wrong with it as I was detecting quite easily the strong smell the antifreeze and the heat of the car engine when driving. There was nothing wrong with the car. I could often tell if someone had been recently around somewhere I was by the smell that lingered and that I was now able to pick up so easily. I began to appreciate a dog’s heightened sense of smell.
Another real problem was the cold. I live in Canada where winters are cold and long. My work involved being out in the cold for long periods of time. Although it had never been a problem for me, I was now extremely sensitive to the cold. I would shiver uncontrollably if exposed to the slightest cold temperatures. It was bizarre. One day the starter motor on my car went and I had to wait for a tow truck. It was April and not that cold by then, but not warm either. By the time the tow truck operator arrived to tow my car home, I was shivering so badly I could have made you a milkshake. It was embarrassing as it was no longer winter where I lived; temperature was about the freezing mark.
Sleep apnea developed; something else I had never had before. It contributed to sleep disturbances.
Heartburn developed along with flatulence. Although the estrogen therapy had dealt pretty well with the irritable bowel, I was having several bowel movements in a day compared to the once a day I had been having prior to surgery. There were a few occasions when my bowels were incontinent which was very distressing. This was especially so if I did not stay close to home for an hour after eating breakfast. It meant I had to start wearing protection of some kind to protect my clothes to avoid soiling them.
I developed strange headaches. They would start on the side of my neck and work their way up and around my head. They were unusual headaches for me. I had had migraines in the past but these were very strange in their symptoms and different from migraines. The unfortunate part was that when I told my doctor about them last January, at the time I couldn’t remember what they were like to describe them to her, just that they were different from headaches I had had. Later I remembered but this illustrated too the difficulties I was having with memory since the surgery.
I can’t emphasize enough how strange many of these symptoms were and how I had never experienced them before the surgery.
In February of 2003 my doctor died suddenly. It was a terrible loss as she was an incredible doctor, the kind of doctor who listened to her patients and who cared. I made an appointment with a doctor in Toronto who had women from all over Canada coming to see him for help with hormone therapy. At this point I still believed my problems were related to the loss of hormones brought on by the surgery. My problems had all started either immediately or within weeks of the surgery. I felt if I could find a hormone therapy that would work for me, I would be fine.
A couple of weeks before I left for Toronto to see this new doctor, I received an email from the woman who had put together a book of stories about women’s hysterectomy experiences; aptly titled Misinformed Consent. My own hysterectomy story had appeared in the second edition of the book. The e-mail she had received was from a Dr. Lam in Los Angeles who had read the book. He stated that many of the women in the book were suffering from adrenal fatigue and that was what was behind a lot of their symptoms described in their individual stories. I had never heard of adrenal fatigue. All I knew about the adrenals was that they were involved in the fight or flight response. I had no time to check into this any further before the trip to the Toronto doctor but Lise advised me to bring up the information in the e-mail to the doctor when I saw him.
The appointment with the Toronto doctor was not covered by my health plan so I had to pay $75 for 15 minutes. This doctor had never seen me before and there was a lot to cover in such a short period of time for a first meeting. It was impossible to cover everything that was relevant to my case so the matter of adrenal fatigue was never brought up due to time restraints. However, this doctor after looking over all my lab tests said that my thyroid was low and he said that he had to treat it before he could treat my estrogen, progesterone and testosterone problems. This caught me completely off guard as I was all geared up to deal with the hormone issues related to the hysterectomy. I was sent home with a prescription for desiccated thyroid pills.
I was leery of taking them and held off for a few weeks. I requested copies of all my thyroid tests from the past ten years from the clinic where I had been going for the past 12 yrs because I was still wondering whether I really had a low thyroid. When I got them, they all showed normal thyroid readings and were the same as the one the Toronto doctor had looked at. It is important to note that in those ten years I had no problems with fatigue! After talking it over with my pharmacist, I reluctantly decided to try the thyroid prescription but only for a short while. I would watch for side effects.
I was talking with a friend in Florida via MSN messenger one night and she asked me how I was feeling. Her question got me to thinking how I was. I had been feeling gradually worse and worse since returning from Toronto. By now I had been on the thyroid pills for about 3 weeks. I would be sitting at the computer working away and almost suddenly I would feel so tired; a severe, crashing type of fatigue, and thirsty; really thirsty and often ravenously hungry. At first I just drank more and ate whatever food I could get my hands on.(There had been several occasions where I noticed I would eat like someone who hadn’t seen food in weeks literally. It was kind of strange for me and I didn’t know what to make of it when it happened.) Sometimes the fuzzy thinking that accompanied these episodes of fatigue would cloud my ability to work and think clearly forcing me to shut the computer down.
One night, feeling super depressed about these new symptoms and the fact that I couldn’t even do things I wanted to do like work on my computer, I decided to have a piece of chocolate to cheer myself up a bit. Within ten minutes of eating that one square of chocolate, I began to feel clear headed, and the fatigue lifted. I didn’t know what was going on but when the symptoms came again a day or two later, I did the same thing; ate some chocolate and this time I noted the time I had it. It worked again!
I called the Toronto doctor to report the problems I was having with his thyroid prescription and to tell him I was discontinuing it. He insisted that the thyroid prescription could not do that to me. I stopped taking it immediately anyway and made an appointment with a doctor here to get help with the hypoglycaemia. Within a few days of stopping the thyroid pills my symptoms started to subside. The doctor tested my blood sugar and said I was diabetic. Intuitively that didn’t make sense. I refused to accept the diabetes diagnosis. I spent the next three months testing my blood sugar levels at home and I also asked for another fasting blood sugar test from the doctor. I also tried to explain to the doctor that I believed I had an adrenal problem and that one can have fluctuating blood sugars with adrenal fatigue. He was not anymore convinced about that than I was about now being a diabetic. But at my insistence he wrote a referral for me to an endocrinologist to have the issue investigated.
I saw the endocrinologist who spent all of 12 minutes with me taking down information, and conducting an orthostatic blood pressure test and looking for skin pigmentation
While waiting for these test results, my fatigue continued to worsen. It took five weeks before the results came back. Her letter to my referring doctor stated that “Clinically and by symptoms this lady does not have Addison’s disease.” She goes on to say that I have no family history of autoimmune diseases. Well I have no family medical history and no contact with my family so there is no way of knowing this. I don’t know where she got this idea from. She goes on to write that “Although she does have many symptoms that could fit with hypocortisolism the symptoms she does have are non-specific and do not relate to cortisol levels”. She had a handwritten comment at the end of the letter that said “...of course, the 24 hr urine result is just low. Plan – low dose ACTH test.”
At this point, the referring doctor dropped me as did the clinic where I was seeing him and had been going to for over 12 years. It came as a shock and at a most difficult time health wise. I was told I was not in their catchment area. The doctor I had first seen about the low blood sugar and who had diagnosed me with diabetes and referred me to the endocrinologist was only seeing me for three months to stabilize the diabetes (he had ten yrs experience with diabetes) and I knew that. I expected to be returning to the general practitioner I had seen only three months previously at the clinic, but I was told that wouldn’t be happening. Since I had lived in the same place for over 18 years and all of the time I had been going to the clinic, being dropped for living outside the clinic’s catchment area didn’t make sense as a reason for being dropped. Now, suddenly I had no doctor and I was very sick! The stress of this event and of suddenly trying to find a doctor when they are in short supply here worsened my existing symptoms and intensified the fatigue, nausea and vomiting.
I asked about being on the hormone therapy and whether I had to stop it for the test but was told not necessary to stop it. I had the ACTH test and gave a more comprehensive list of my symptoms to the lab technician so she could fax them to the endo’s office for me. (With no doctor anymore, I had no way of communicating with her office as they refused to talk with me on the phone when I called.) After the test was done (in the morning) I came home and ended up in bed for most of the afternoon due to extreme fatigue. My brain was foggy and I was just feeling poorly. I was confident that the ACTH test would show what I had been saying; that I had an adrenal fatigue problem.
I waited four or five more weeks for the ACTH test results. While I waited, I watched myself get sicker and sicker; many symptoms worsening. I noticed how thin my legs had become. I am a cyclist and always had such strong muscles in my legs. Now they seemed to be wasting away before my eyes. When the test results didn’t come after five weeks, I called the lab and found out from the lab technician that the results were normal. [Basal 455, 30 min 654, & 60 min 711 (Dr Wilson’s’ book says that, in response to an ACTH challenge, cortisol levels should double. Mine did not.)
The Endo’s letter arrived a couple of weeks later stating that I did not have a glandular problem. “It does not appear that all of the symptoms you have are, in any way, related to a glandular disease”. In her letter to the referring doctor I have found out she has said that “ … low dose ACTH test was absolutely normal.......she does not have even incipient Addison’s disease. Therefore, no further investigations would be done. It doesn’t seem that she has a hormonal cause for her continued complaints”. She has dropped my case.
Since returning from Toronto I had researched the symptoms of adrenal fatigue. I have compared adrenal fatigue, low thyroid and fibromyalgia and with chronic fatigue syndrome. I found that the majority of my symptoms fall in the adrenal fatigue column. I had more symptoms of adrenal fatigue than anything else. At present I am considering purchasing an adrenal hormone saliva testing kit but it is not covered by my health care plan so I will have to find the $200 myself. That will take a bit of time. I am hoping that since this test covers a twenty four hour period, it will more likely show that there is indeed a problem with my adrenal glands. For now, I am treating myself with supplements based on information primarily from Dr. Wilson’s book Adrenal Fatigue. I am glad that in his book he cautions the reader that most doctors will not believe there is an adrenal fatigue problem because they are not trained to diagnose anything but the most extreme forms of the disease, namely Addison’s. I have never said I had Addison’s but rather I have always referred to having Non-Addison’s Hypoadrenia or adrenal fatigue.
I suspect that the trauma of the surgery, the trauma to my body that the loss of hormones caused as well as it taking so long to find a hormone therapy that would work for me, have all contributed to my problems now. I believe without a doubt that I have some kind of adrenal fatigue problem. I am not saying it is Addison’s but it is adrenal in nature.
Although many of my symptoms are indicators of estrogen, testosterone and progesterone deficiencies, I now believe that there is also an adrenal component in all this. I am on estrogen, progesterone and testosterone therapy which, by lab tests, show I am in the normal range now.
By removing the body parts that they did, uterus and ovaries, the doctors have removed a part of the endocrine system which in turn affected / influenced other parts of my body. It is all interconnected. Doctors still don’t know all the functions of the female organs even though they remove them in staggering numbers for benign conditions mostly. Unfortunately, they are not listening to the women who have problems as a result. Just as they are not taking seriously my health problem now. Where I go from here, I do not know. I do know that I cannot last through another winter like the one I just came through. I was so sick! I can only do so much treating my symptoms myself. I have to find a doctor who will take me seriously and want to help me find a solution.
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CASE HISTORY [k]
Brent Cooper.
My name is Brent and I am now 39 years old. Life with medications started when I was 13. I was shorter than my peers although I had been taller than anyone until the age of 12. After bone scans to check if I was growing and numerous other tests, they figured out my thyroid was the problem and was not producing what it should so I began taking levothyroxine. I did not grow in to a giant but gained a few more inches!
When I was 17 going on 18, I was very active in all sports. I could down several litres of drink at one go, was in the washroom many, many times a day and losing weight. I come from a family where both sides of grandparents had diabetes and had an inkling that this might be my problem. I was down to just over 100 lbs. and my mother got me into the doctor to see what was happening. I went in the morning for a simple blood test and in the afternoon, my mother came home and told me I was off to hospital.
I was in there for a week where they put me on a 3,000 calorie per day diet, eating gravy on everything, gaining close to 20 pounds in that time and learning about insulin and giving myself the shots. I stayed on the same dose of insulin until November 2003 when I switched over to the novorapid insulin system.
I adjusted quickly and easily to having diabetes, not letting it consume my life or what I chose to do with it. I have diabetes and I do make the necessary adjustments and care so I can remain healthy. It is part of me but it does not consume my life and this is the way I treat my newest disease.
April 2003 was a rough month. I had been feeling tired and, according to my wife and children, was far more grumpy than usual. I was experiencing lows in my blood sugar, something of which I rarely had happen in the 20 years of dealing with diabetes.
Week one
Finally, my wife had had enough and sent me to the doctor. I went into walk-in as my doctor was away on holiday. The walk-in doctor felt that I probably had a flu or some such virus and was sent home. My wife did not accept that as she knew how I behaved when ill and went with me to the emergency department of the hospital that night. This was Friday. The hospital doctor on call felt we had wasted her time as I had already been in to see the walk-in that afternoon and would not call in the lab to do a blood test but made the script out for Monday morning. My wife was boiling mad but the doctor ignored her concerns that this was not my usual way of having a flu. I was inclined to agree with the doctor and just wanted to try and fix it with sleep and rest.
The weekend was a difficult one with more lows. I would drink a whole can of coca-cola and 15 minutes later, my sugars were still below 4, my legs ached horribly and my wife gave me a banana to see if I was low on potassium (she still feels horrible for giving me more of what I had too much of!). I felt faint and had a hard time sitting up let alone walking to the washroom. This was one heck of a flu I was dealing with!
Monday morning came and I went in at 0800 for my blood test which was different from other blood tests. They had a difficult time getting the blood where normally, it flows out in easy and large amounts. One half hour after I got home, the hospital called and I was to get in there immediately. My wife and I went there after finding someone to care for our children. I was admitted in the emergency ward and hooked up to a saline iv and given this god-awful stuff called k-lite (?) to drink. It was similar to being given river sand in a glass. We were told then that my sodium was low and my potassium was high, and the doctor (whom we had seen in the emergency Friday night) still thought it was just a virus I was dealing with and had become dehydrated because of it.
Once I was settled in the hallway on a stretcher with the iv, our friend brought my girls to see me as they had been very worried. My wife stayed the longest she could and then went home to deal with the girls and dog, and to research.
Tuesday, I was able to come home as I had been rehydrated and my levels had started to look better. I felt a bit better but by Tuesday evening, I started feeling weak again. Wednesday, I went back in and they did the iv thing again. Same thing happened on Friday and I was home on Saturday with orders to get more bloodwork done Monday morning.
Week two
Monday morning came after another rough weekend and I was, once again, admitted into emergency for the iv. This time, a different er doctor added a potassium solution to the iv. My wife, during this whole period of time, had been researching my symptoms with the help of her mum and the internet. They had it narrowed down to one of two things, renal tubular acidosis or Addison’s disease. She managed to get one of the night nurses to add a test for cortisol to my standing bloodwork tests as the doctors were still treating me as having a bad virus/flu.
Tuesday, my regular doctor came back from his holidays early and got me out of the hallway stretcher and into a regular room. He was checking thyroid, my A1C’s and made sure the cortisol test was rushed. He brought in the internal specialist to get more help and things were finally being investigated. I was still experiencing sugar lows, weakness and blood pressure crashing on any movement. My wife and girls visited with me for hours every day and my wife was on the nurses and doctors’ cases with many questions and requests for information. She had gone past the point of caring what anyone thought of her and was doing everything she could to try and get to the bottom of what was going on.
Wednesday, the internal specialist came in and by the end of the examination of myself and my records, felt it was likely Addison’s and was going to deal with the two doctors who, he felt, were negligent in their care of my case.
Thursday afternoon, the results of the cortisol test came back and I was started on hydrocortisone and fludrocortisone.
By Thursday evening, I felt much, much better than I had in a very long time. I was able to get up to the washroom on my own, to walk the hallway, to sit up, and my appetite returned. My wife had seen me in the day and brought the girls after supper and was amazed at the difference. They had me on 20mg of hydrocortisone and 0.5 of fludrocortisone in the morning and 10mg of hydrocortisone in the evening. (...and I am still at that dose one year later.)
Friday, my iv was taken off and I was eating normally and feeling anxious to get home.
Saturday, they released me and I walked the whole way home, something I had not felt like doing in many months.
Sunday, we all went to church and my wife spent the rest of the day making cookies and notes for the nurses and our family doctor. I took the next week off work, felt well enough to go back but there was no way my wife would let me go until a had a few days of the new meds under my belt.
I didn’t realize until it was all over just how much this had affected my family. My wife spent 2 weeks absolutely terrified she was losing me. The year previous, my father had passed away with cancer and the pallor of my skin reminded her of him during his last days. My children are young (now ages 12 and 8) and were having a hard time sleeping with nightmares and worries about me. My eldest almost fainted with the stress and they were very clingy each time they came in to visit me and when I was finally back home.
I am forever grateful we have such good friends who helped my family cope and were there to help at a moment’s notice.
Since the diagnosis, my sugar levels have been higher than usual but are getting into line slowly but surely. My previous A1C’s had always been in the excellent range
My cortisol tests are exactly where they should be and my doctor and endocrinologist believe I am on the correct replacement doses of those drugs.
While I was ill, I had lost weight, some of which I recovered once on the medications. I have not gained any excess. I keep active, making sure to do some cardiovascular every day, be it playing basketball, brisk walking or whatever else I can. I work full-time as a network specialist, with a fair amount of driving to and from involved, and come home to do some more work. My wife has secondary progressive multiple sclerosis so I chip in and help keep things under control.
I have not had another crisis, and hope never to have one, but carry extra hydro with me at all times. My medic-alert bracelet has been updated to include Addisons. I make sure to drink extra water each day to help reduce the chance of becoming dehydrated and throwing levels out of whack.
Living with Addisons has not been a difficult adjustment. The process by which I was diagnosed was horrible and very hard on the family. I take each day as they come, dealing with whatever is thrown at us and not concentrating solely on disease. There is a lot more to my life than having several health issues and I manage to enjoy life while also dealing with the ramifications of disease.
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CASE HISTORY [l]
Tabatha Martel.
I have no idea how long I was sick!
I was overjoyed! I was pregnant and expecting my 5th child! It was supposed to be a happy and exciting time in my life.
During my pregnancy I had many stresses. My dear friend and my youngest daughter's Godmother passed away somewhat suddenly with lung cancer. I had just recovered from losing another friend who died suddenly from an asthsma attack. My father became very ill, with retained fluid, and an enlarged heart, and countless other problems that left him fighting for his life for many months in the ICU. He was lucky and he is still with us, though life is very different for our family now that dad is in a wheelchair. My Grandfather became ill, and suffered a slow and painful death. His funeral was just two days before the birth of my son.
The pregnancy itself was hard. I was vomiting constantly, had headaches, and just plain could not stomach food. I did not have any energy, and could not even get through doing the groceries. Going up and down stairs was increasingly difficult, and we contemplated remodelling the downstairs living room into a bedroom.
I saw doctors. Nothing ever came up.....blame: pregnancy, and stress. I went to the emergency room when I was 6 months pregnant. Complaint: vomiting, migraine, double vision. All the tests came back normal.....nothing is wrong with me! I was prescribed tylenol #3 for the migraine; no blood tests were done; a brain scan was normal, and I was sent home.
I told my OB many times that I had no appetite, no energy, and severe vomiting. An abdominal ultrasound was ordered, everything was apparently perfect and the pregnancy was blamed. On my baby's due date, I begged my doctor to induce because the pregnancy was taking its toll on me, and I wanted my life back.
My son was born on November 4th. Labour went well. It was all over and done in 2½ hours! I enjoyed my new son, and he nursed happily.
I am finding it increasingly difficult to function. Night feedings, diapers..... mostly I sleep. I saw my family doctor, I told him that I had no energy, I cannot eat. He gave me some large yellow pills and told me they would increase my iron and stimulate my appetite..... to no avail. I was still vomiting; now I notice my pre-pregnant clothes are too big. I am always cold, I wear 2 or 3 pairs of socks and big fleece slippers but I still shiver and my feet feel like ice cubes. My hands are also always cold. I wear giant sweaters, and whenever my husband is not looking I crank up the heat! The cold that I have had for weeks just won't let up on me. I feel like there is a fog over my brain. I am unable to focus, and thoughts are difficult to string together. I also realize that I am dropping things and I have difficulty with fine motor skills. My feet always feel like pins and needles...what is going on?
At this point I did not seek further medical help because I was feeling like a hypochondriac. My husband is frustrated, and my children worry and just want their mommy back!
Mid April..I am really sick. I spend most of my days in bed and when I do get up I feel weak and dizzy, and my speech is slurred. People I am close to begin wondering if I have an addiction problem!
On April 15th, 2004, I awoke at aproximately 1 am, dizzy, and disorientated, but I knew I had to go pee. I tried to go downstairs, but I was unsure of my balance. I was able to manage going down on my bum just like a two year old! Upon leaving the bathroom I felt all the strength leaving my body. I had one good scream in me and I yelled for my husband. He ran to me and I was laying on the floor. He recalls that he did not think I was breathing, my skin-tone had lost all color, and taken on a deathly blue.....a color he never wants to see again! I was sweating and felt cold to the touch. He called 911 and soon the ambulance arrived.
By the time I arrived at the hospital my blood pressure was so low that a pulse could not be found. Potassium levels were at 7.5 [normal is 3.5-5.5 mmmol/L, over 6.5 is dangerous. Ed.] and I was severly dehydrated. I was fighting to stay alive. I don't recall the first 3 days I was hospitalized; it's like missing time. I wonder if this was a coma? I was so sick and so tired of being sick that I did not really care if I lived or died. My Endocrinologist now says that with the condition I was in, I was not expected to survive! I had decided it was all up to God. My grandmother and my aunt stayed by my side, and were tremendously supportive! The doctors were baffled, they could not understand why someone my age (31) was so sick! It took a group of physicians the better part of a week to determine that I have POLYGLANDULAR AUTOIMMUNE SYNDROME type II.
I now wear a medic alert bracelet, and I carry a card with my personal medical details, plus an instructional letter from my doctor in case of crisis, and a vial of injectible Solu-Cortef.
At the time of this writing I have been on my medication for just over a month and my recovery has been rapid. My oldest daughter commented that I am a much better mom now. She said this to me while we skipping rope together in the driveway, something I could never have done only a month ago! I am much easier to get along with. (Apparently I was quite difficult at times!)
You certainly learn the hard way who truly cares about you when you are not well! I continue to experience migraines, chills, tremors, and fatigue, but to a much lesser extent.
In the 'before Addisons' photo, you can clearly see that my skin was very pale, and my hair was soft, and full. The second was taken since I got Addisons photo, and is a recent picture, you can see the difference in my skin tone, which is definitely darker, and in my hair which has thinned, become dry, and receded at my hairline.
Tabatha Martel, finally diagnosed with Polyglandular Autoimmune Syndrome on April 18th 2004
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CASE HISTORY [m]
Amy.
Hello everyone!
My name is Amy, I'm 32 and I was just diagnosed 3 weeks ago with Addison's disease. I started feeling terrible in January 2006 with diarrhea and aching joints. I went to the doctor several times and he told me it was stress. Withing 2 months I had lost 25 pounds and had diarrhea several times a day.
By June I was so sick I was unable to cook dinner, stand in the shower, or walk from my car to the front desk of the doctors office without being very very winded and light-headed. Just to brush my teeth was a chore at this point. In early July before I could get the EGD and colonoscopy done, I was unable to eat and get out of bed and did nothing but vomit and have diarrhea. Just to switch positions in my bed made my heart race and made me feel out of breath. Also at this time, everytime I would stand up I would black out. I had my blood pressure checked and it was 84/54. I went to the ER and a doctor finally took me seriously.
After several different tests they found that I had all the symptoms of hyperthyroidism, but the blood test showed that I actually had hypothyroidism. I spent 3 days in the hospital and they told me that I would feel 100% better in 2 weeks. I started taking synthroid and within a week and a half I was back in bed unable to eat, drink, or get up. I went to the doctor on Friday July 21st barely able to walk around, very nauseated, very low blood pressure, a 55 pound weight loss, and all he wanted to do was the EGD and the colonoscopy.
After an injection and a few blood tests, they told me I had Addison's and that I would need to be on steroids the rest of my life. I left the hospital that day and was on 100mcg of synthroid, 10mg of prednisone, 40mg of nexium (the scopes were done in the hospital and an ulcer was found), and 10mg of lexapro for mild depression. I started feeling really good for a couple of weeks and then I went to the kidney specialist for a check up. Blood work was done and I thought everything was going great.
I got a call at 8:00 pm that night and it was the doctor telling me that my potassium was very high and that she was going to phone in lasix to try and get rid of the extra potassium. I took the lasix that night and the very next day I was in bed, vomiting nonstop, unable to keep just a sip of water down. That night(Aug.9) I was back in the hospital very dehydrated and my blood work was all messed up again. My potassium was still high at 6.9 so I was in the cardiac center for 3 days for fluids and monitoring. On the 3rd day they put me in a different room since my potassium had gone back to
normal at 3.8 (This is towards the bottom of normal range for potassium, which is 3.5-5.5mmol/L. Mike) I just left the hospital yesterday, Aug.13. My medications have changed and been added to and are as follows:
Everytime I leave the hospital I hope and pray it is the last.
Right now, I am taking this day by day. I am trying not to stress about the little things that I use to stress about. I've found it's just not worth it. Instead of cleaning the whole house in a day, I do a room a day.
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CASE HISTORY [n]
Liz.
Dear Mike and Margaret,
I have had Crohn's disease for 20 years, since I was seventeen and this had been mainly treated with steroids as I could not tolerate other drugs.I had my first surgery for this condition early on. After nearly another 12 years on prednisolone it was decided that I needed more surgery. Unfortunately there was complications after the surgery and I developed peritonitis after emergency repair surgery (a temporary stoma) I was taken rather abruptly off the steroids and told that I would not be able to go back on them again if I wanted corrective surgery on my bowel carried out. It was not long before I lost a lot of weight and was very sick, continuously dizzy, full of aches & pains and falling over a lot.
After being sent for an ACHT test and then a CRH test I was told I no longer produced steroids and that I would need to take hydrocortisone. It was not until about a year or so later at an out patient appointment that a Dr asked me how my Addison's was? I had never heard of this before!
It was only after that appointment that I was told that I had secondary Addison's I was told that it would make no real difference to me as all it meant was that long term steroid use had meant that I no longer produced steroids of my own. I would just need to keep taking steroids as I had done before.
I also have active Crohn's disease. Bile malabsorbtion of less then 1%, and arthritis problems. I currently take various medication including 30 mg hydrocortisone
for the Addison's and infliximab for the Crohn's.
Liz
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Copyright © 2004-2008 Mike Welch
Buckinghamshire, England: Aged 9
Once we got there he made a brief examination of Michael, who by this time was too weak to walk, and sent us immediately to the Children’s Ward at the local hospital, apologising profusely for not taking my concerns seriously enough during our telephone conversation.
Leuchars, Fife, Scotland
North Yorkshire, England
PS: Since then several patients have reported asthma steroid inhalers also appear to have had an influence on their Addison's status. If the asthma inhalers are similar in strength to Dexamethasone, which only requires a small prescribed dose to attain the same effect as full replacement with hydrocortisone, then this could account for the described situation.}
I changed over to Prednisolone a couple of months later as I was getting too many 'Dips' with the HC and I have now been on Pred for 2 years and much prefer it - It tastes much better too !
Canada
During my early years I was robust and healthy but as I grew Addison's stalked me. It lurked in the shadows, slowing me down physically and sabotaging my school and extracurricular activities. It prevented me from seeing any results when I persistently and faithfully followed a personal fitness program. Basket ball was simply too demanding on my body so I couldn't play on the school team. I played hockey until Grade 10 but my loose ligaments made me prone to injury. Two separated shoulders and no stamina were the deciding factor in not playing hockey after Grade 10.
We are so grateful to Dr Rind. We also had support from Dr Stephen Hotze at the Hotze Wellness Center in Texas.
Winnipeg, Canada
So I looked up my symptoms on the internet. (Thank God for the Internet!) I discovered I was hypoglycaemic. Then I started researching low thyroid and adrenal fatigue more seriously and found that often treating a low thyroid without checking to see if there is an existing adrenal problem can actually make the adrenal problem worse.
(In his referring letter he wrote “Dawn has strong opinions about doctors and her health care.” He never mentioned any of my symptoms except that I was refusing the diabetes diagnosis and was complaining of fatigue.)
changes. Fortunately I had come with a preliminary list of my symptoms to give to her. She ordered a 24 hour urine test to check my free cortisol and creatine levels. I asked her if the urine could be collected over four separate periods in a 24 hour time span so as to see the lows and highs of the cortisol for my body but she said that would not make any difference. Due to difficulties with my memory, I was unable to explain further why collecting four distinct urine collections was better and I was reluctant to tell her I had read about this in the book 'Adrenal Fatigue: The 21st Century Stress Syndrome' by Dr. Wilson. It had been put down by the referring doctor and I expected the same reaction with the endo. I also didn’t want to mention the internet as it too seems to have a bad reputation with doctors who don’t believe any relevant accurate information exists on it.
Manitoba, Canada
(around 5 – 6%) and have risen. The new meds do affect them so have been adjusting. I have also switched from using the regular/lente system to using novo-rapid system, which is similar to how a normal person’s insulin behaves. The levels are coming under control.
Tabatha before AD set in.
Tabatha with AD
Problem: I was not producing any breastmilk! My GP said that my pituitary was not signalling my body to produce breastmilk. My OB said after the birth of a 5th child it could be expected to not produce breast milk, so I accepted this. Looks like he will be a formula fed baby!
I quit my job to try and eliminate my stress and the symptoms only got worse. I started noticing skin discoloration on my joints, my lips, my elbows, and on my shins. The
weight kept falling off and the next time I went to the doctor in May I had lost 45 pounds. He still contributed this to stress and suggested I go to a gastroenterologist for an EGD and colonoscopy.
The very next day I was back to the ER. I was very dehydrated and my blood pressure would not even register when they first tried taking it. My heart rate was 135 beats per minute and I was unable to talk, walk or do anything without heaving uncontrolably. The ER dotor came in and she promised me that I would not be going home until they got to thebottom of what was wrong with me. After every test you can think of was given to me there was still no answers. My father who was 700 miles away had been up night and day reading and researching and trying to figure out what was wrong with me.
He mentioned to me that I had all the symptoms of Addison's disease. Naive me didn't mention this to the doctors because I thought they know what they are doing and what to test for. My dad insisted that he speak to the doctors about this. Finally he got ahold of the kidney specialist that was on my case and asked him to test me for Addison's. The doctor got a little perturbed with my dad but told him that they were already in the process of testing me for Addison's.
I finally saw an endocrinologist in the hospital and he stressed how important it is not to miss the steroids. I also found out that not only has this affected my adrenals and my thyroid, it has also destroyed my ovaries. My menstrual cycle ended 6 years ago when I was 26 years old. They could find nothing wrong back then and told me it was early menopause. The endocrinologist suggested that I get on hormone replacement since I am only 32 years old. He said this will help reduce the chances of uterine and cervical cancer, help with bone density, and with aging of my skin. I am seriously considering getting on them.
I hope that my story in some way helps someone out there who may be feeling like I did and has no idea what is wrong with them. I look forward to communicating with
anyone about addisons and learning all I can about this disease.
It was not until a year or so after this appointment that I had a number of severe dizzy spells where the entire room was spinning so fast I felt like I was on a roller coaster. I felt extremely sick and eventually would fall over and be unable to understand what was going on around me. Thankfully on the three occasions that this happened I increased my steroid intake and within 3-4 hours the symptoms would subside. My doctors put it down to an ear infection which was later ruled out.
After Internet research and a trip back to the doctor I was told it might have been a mini Addison's crisis and given an injection kit for emergency use.