Today I am sharing another story of Adrenal Insufficiency. This post is written by Vera, a Doctor with Adrenal Insufficiency who lives in Finland.
Thank you Vera for sharing your story here on the Adrenal Diaries – Angela xx
New Rules Of Living And Lifting With Secondary Adrenal Insufficiency – My Story
Hi everyone! I’m Veera, a 32 years old M. D. and fitness enthusiast from Finland. I want to thank Angela for the opportunity to share my story with you, and for spreading the knowledge about a rare disease – adrenal insufficiency. You can follow my life and training in my blog: www.athleteonsteroids.wordpress.com.
As long as I remember, I’ve been interested in two things: exercise and medicine. Because of a very troublesome asthma I was a frequent visitor to our county’s children’s hospital since early childhood.
I also picked up back problems and hypothyroidism at a very young age and battled with depression as a teenager. My battles with several illnesses made me want to help other people get well and learn to take care of themselves at the same time.
My medical problems never stopped me from exercising – it is by far the best medicine, a medication I like to subscribe to all of my patients.
In 2014 I was specializing in geriatrics. I lifted weights and trained krav maga – an Israeli martial art – mostly on-and-off due to concurrent infections and other weird symptoms. I was tired all the time. I blamed my hypothyroidism, although the labs were always in normal range with medication.
Last year I passed out twice in the gym with no obvious reason. I had bacterial infections ranging from severe gastroenteritis taking me to hospital for an iv drip to sinusitis, otitides, UTIs and bi-monthly colds.
In the spring I got into such a bad shape I was on sick leave for over a month with strong peroral corticosteroids for my asthma. I had to take them for nearly 4 months before I was feeling normal again.
I was then diagnosed with IgG deficiency. IgG is an immunoglobulin class – they are antibodies that normally protect us against bacterial and viral infections.
That explained my recurrent infections, and I was started on a prophylactive antibiotic to prevent bacterial infections. Everything was supposed to be fine or so I thought.
After I stopped the peroral corticosteroids in August 2014, I started to have new, debilitating symptoms. My muscles cramped painfully. I had a constant headache and suffered from nausea.
My tiredness got so bad all I wanted to do was sleep after work. I felt weak, and had frightening dizzy spells. I couldn’t stand for a long time without feeling I’d faint. At work in a hospital’s geriatric ward, I had to do my rounds sitting – in a wheelchair, beside the patients in their beds or in a chair that a nurse had to carry with us on the rounds. I was terribly worried.
I had no clue what was wrong with me. I even thought I was imagining it all and probably had just a mild burn-out from my hectic work schedule.
My pulmonologist was my saviour. In September I had my follow-up appointment and complained to her that I had these strange symptoms that were driving me crazy and almost incapable of working.
Luckily for me an older colleague who had worked in a university hospital said she’d seen and treated patients with adrenal insufficiency and recognised the symptoms I was having.
That same week I got my blood drawn and it showed low cortisol, <130, when normal values were considered between 150-650. For a person who is sick a lot and stressed out, my values should have been in the high end of normal.
After a couple of weeks I had my ACTH stim test done. It is used to differentiate primary adrenal insufficiency – a failure of the adrenal cortex – from secondary, where the pituitary gland isn’t making ACTH and telling the adrenals to produce cortisol. The results were abnormal.
My cortisol had dropped to immeasurable levels in less than a month, but did rise a bit up to 170 in the stim test – suggesting a fault in my pituitary. My DHEA – a precursor sex steroid hormone also made by the adrenals – was also immeasurable.
It appeared that the corticosteroids I had taken perorally and inhaled daily that were used to treat my asthma for over ten years had caused me to develop secondary adrenal insufficiency.
Usually when a person takes corticosteroids the pituitary makes less ACTH to signal the adrenals that they don’t need to make that much cortisol.
Normally the adrenals awaken again to produce the normal amount needed when a person stops the medication, but sometimes when corticosteroids are taken for a long time, usually for months or years, and in big doses, in some people the adrenals don’t recover. They just stop producing cortisol. I had become one of those people.
I got the phone call about my stim results in the beginning of October. I was immediately started on hydrocortisone replacement by my pulmonologist – 10 mg in the morning and 5 mg in the afternoon – and then referred to endocrinologist. At the same time I was relieved that I now knew what the problem was, but also scared.
As a doctor I knew the risks involved in both adrenal insufficiency and a life-long corticosteroid treatment. Would I ever be healthy again?
Could I continue to work? Could I exercise?
I was still dead tired and barely coping with minimal daily activities. I had gotten a permanent vacancy in a new hospital and just started my job there. What would my superiors say?
To make matters worse, my first appointment at my local hospital’s endocrinologist didn’t exactly go well.
She blamed me for my disease and was unhappy with the amount of hydrocortisone I was taking. I’d had to increase the dosage to 25 mg per day as I couldn’t cope with my symptoms – the tiredness, headaches, muscle cramps, nausea and dizziness.
She said it was all in my head. I was still too weak to exercise like I used to. I hadn’t been to gym or practiced krav maga for over six months. The endocrinologist coldly told me she didn’t like exercise, nor deemed it necessary to be able to do so for others as well.
She suggested I’d find other, less taxing hobbies while I would also wean down from the steroids. I left her office in tears, my life and future shredded.
Luckily I’m not the type of woman to give up. I partly sweet-talked, partly coerced the assistant nurse of a well renowned professor emeritus of endocrinology to get me an appointment to his private practice.
We immediately hit it off and found a consensus regarding my treatment. He’s the type of rare –( unfortunately) – endocrinolofist who believes the patient knows best about his / her body and the cortisone replacement dose is adjusted so that we AI patients can lead as normal life as possible.
I got instructions on stress dosing as well as dosing for exercise. He ordered more lab work my other endocrinologist hadn’t: ACTH, aldosterone, renin etc. I got my diagnosis of secondary adrenal insufficiency confirmed and my national health insurance for hydrocortisone replacement approved. I was beginning to think I would handle my disease, after all.
Of course, as often in life, things never go smoothly. I was under a lot of stress from my new job – too much work and too many patients to take care of with no breaks during the day. I simply couldn’t handle it. I couldn’t sleep. I suffered from viral infections and exacerbations of asthma.
My AI symptoms got worse again. I was ordered to go on sick leave by my occupational health care physician in the beginning of January 2015. The next week, I got fired from my job.
My boss tried to fight against it, but the hospital’s chief administrator had decided I would be a liability because of my illness and most likely recurrent absences. I had yet again hit rock bottom in my life. I was without a job, without my health, and about to become homeless.
What did I do? This is the best advice I can give to anyone who struggles in life, let it be a chronic illness or any other difficulty. Reach out. Ask for help. I wouldn’t have survived without my loved ones’ assistance – my boyfriend, my parents, my other relatives and friends – they all helped. I was too proud for too long to admit I needed assistance.
You must be willing to fight, never to give up. But you must also be willing to admit you need help. Also, seek out others in the same situation.
Getting support and advice from people with the same condition was a life-saver on many occasions for me. Self-help groups and communities can be found on the internet. Join a patient organisation. Get help and information, and help others as well.
Now I’m in a much better place. I’m still learning to cope with adrenal insufficiency and adjusting my meds. But otherwise things have worked out. I am able to work part time doing medical phone consultation work at home.
I am able to exercise and have started a journey into the world of powerlifting.
I live happily with my boyfriend. I’ll never be as healthy or capable as a normal person but I can be the best me there is – and that’s good enough. Stay strong and love yourself!
Visit my blog and follow my journey: www.athleteonsteroids.wordpress.com
Thank you Vera for sharing your story. It is interesting that you have stress dosing rules for illness and for exercise. I’ve never been given any dosing rules for exercise which is probably why when I try to walk or do gentle exercise, I collapse.
Kimberly Lewis says
Sometimes your reading something and you stop & ask yourself is this me I’m reading about? Your story is uplifting and what a new, painful inside you now have for your patients w any type of dragging, life changing illness. I have only been diagnosed for about eight months. For a year I struggled w heart conditions, uncontrolled tachycardia,uncontrolled hypertension with tachycardia, pneumonia… it was complicated by the fact that my then GP decided to do nothing nor tell us of dangerous cortisol levels. So I went w/out treatment because of his stupidity. A hospital staff doctor just “seemed things didn’t add up” so he went through old test results and there it was one year to the date I was then in the hospital again for fatigue, pain,dangerously low bp, heart problems, fog kind of feeling. A 24 hour blood test was done and it was clear as a bell. Now I already have SLE, spinal stenosis,arthritis so the very same steroids that I had taken & been injected with to live had killed my glands. Now I have a wonderful endrconlogist and am considered in crisis mode because we have not gotten the dosage just so so. The doctor that did nothing is facing the SC LICENSING BOARD. LOOK UP scnow.com Front page article “In God’s Hands” Its an article about me and my struggle. Best wishes kimberly