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Addison’s disease—up and down

I was diagnosed with Addison’s disease eighteen months ago.  It’s not a very long period of time, and I feel as though it has been a constant learning curve.  But it hasn’t debilitated my life, by any stretch of the imagination.  I want to share a few bits and pieces that made up my experience, and what Addison’s has been like on the whole.  None of this is clinically observed or objectively confirmed, it’s just my experience.

Diagnosis

Firstly, it’s a tremendous relief.  “You mean, there’s a name for it? It’s a real thing? And we can treat it? Hooray!” (then I think I threw up again).  Secondly, it’s very big and new and scary.  You’re probably in hospital, on a drip, learning all this new stuff about how the inner parts of your body work (or, rather, don’t), and there is a lot, a lot, a lot to take in.  It took me a lot of reading, re-reading, phoning the hospital with more questions, and lots of explaining to other people before it really started to sink in.  Going home for the first time after diagnosis, with a bag of pills and rigourous instructions, is terrifying, even though after five uncomfortable nights in hospital, it’s all you want.  My mother compared it to going home with a new baby for the first time: you feel like you’re flying without a net, and even though you’re sure that other people have done it before and the hospital is only a phone call away, suddenly it’s your responsibility.  I felt brittle and jumpy: driving anywhere suddenly had a huge cloud of risk, and I spent a lot of time going over in my head all the steps I was supposed to take if I was in an accident (get the phials of emergency steroids out and inject directly into the muscle at the top outer thigh) and hoping I could remember it all.  The first time I went to a supermarket after getting out of hospital — and I should emphasise that I loathe supermarkets — made me feel nervous and over-stimulated.  However: all these responses subsided within a week.  By the end of my first week out of hospital, I felt more confident and well-informed.  I stopped worrying while driving, I remmebered to take my meds every day, and I was bored and restless.  All good signs: I was ready to go back to work and readjust my life to this new development.

Ongoing lifestyle

One of the nice things about Addison’s disease is that I didn’t have to undertake any major lifestyle changes after diagnosis.  I could keep up the wine, yoga, travelling, cheese, everything.  I had been very scared I would have to give up a lot and adopt a strict, funless lifestyle, but that wasn’t the case at all.  However, it lead me to a renewed appreciation for my body, and awoke a concern for how my health will develop as I age. There are a lot of conditions associated with Addison’s disease that will probably emerge over the course of my life.  Taking corticosteroids for the rest of my life pretty much paves the way for glaucoma and osteoporosis.  I’m on pretty high calcium supplements, despite only being 26, and try to get some weight-bearing exercise in a couple of times a week, in order to offset the increased risk of osteoporosis.  I’m not sure what I can do to offset the risk of glaucoma, but I do know it can be treated if caught early enough, and so regular eye tests (once every two years for now, increasing in frequency as I age) will be able to nab any early warning signs.  Being an endocrine disorder, Addison’s also means I’m more likely to develop other endocrine disorders, such as pernicious anaemia (an inability to absorb vitamin b12 from food), thyroid conditions, rheumatic arthritis, and a whole bevy of other delights. I’m not guaranteed to develop any of these, but they are definitely things to watch out for.  I have biannual consultations with the endocrinology staff at the local hospital, along with a standard series of blood tests.  This is an excellent system: it gives me a chance to touch base and ask for expert opinion, and the blood tests are regular checks for any potentially unnoticed problems that may be emerging.

There is one point I’d like to make about Addison’s disease and diet.  Salt and sugar cravings are Signs.  All being well, your hydrocortisone and fludrocortisone supplements will regulate the levels of sodium in your system, and salty things will taste salty to you; you’ll find your palate pretty normal.  However, if there are problems with the levels you are taking, you will notice your palate changes.  For me, when wine starts to taste funny, that’s a warning.  When crisps and crackers don’t taste salty enough, that’s a really bad sign.  And when I’m craving cake, that’s bad, too (I’m not much of a sweet tooth, and not really a cake person — craving cakes and muffins is a peculiarity for me.  Your results may vary). Pay attention to your cravings: your body will work out what it’s lacking and try to convey this to you through hunger and cravings.  If it’s sluggish, it’ll demand sugary things for an easy energy boost.  When I was first establishing my daily cortisol dose, I originally started with a bigger dose in the morning and then another, smaller one at 5pm: I found that the distance between those two doses was too long, and I was craving sugary things in the middle of the afternoon.  When I started to split that 5pm dose in two (half at noon, half at 5pm), I found the sugar cravings went away. A lot of people put on weight following their diagnosis, due partly to their sugar and salt cravings, and due partly to taking too much cortisol (which, in excess, encourages the body to retain fat and fluid).  This is, of course, reversible, but you need to be aware of what your body is up to.

Sick

It’s going to happen.  No matter how healthy and wholesome your lifestyle, you’re going to encounter a virus, an infection or an injury at something evenutally.  You will need to remember that the body needs extra Cortisol in such circumstances.  Usually, it’s enough to double, triple or quadruple your tablet dose of cortisol tablets, but it’s also important to get your arse to a doctor if the symptoms carry on a little longer, or if the quadruple dose isn’t enough to keep your Addison’s symptoms in line.  If taking more than four times your usual daily dose of cortisol is not enough to offset dizziness, light-headedness or any other Addisonian symptoms, then you probably need to get to a doctor, or even to the hospital for some intravenous cortisol.  It can be hard to know when a little extra Cortisol is needed, because viruses and things of that nasty nature can sneak up on you.  I wish I could give you a definitive list of symptoms, or a level that cortisol has to be at, that would prompt you to take extra, but honestly, it’s something you have to learn.  The first time I had a cold after diagnosis, I took double doses of Cortisol for a day or two, and then realised this was far too low: I needed a triple or quadruple dose, and at greater frequency through the day. Instead of tablets at waking, midday and in the evening, I needed a small dose every two to three hours or so.  The worst part is that low Cortisol levels are associated with vagueness and an inability to make decisions, so reminding yourself to take the extra can take some practice.  With time, of course, you’ll learn what your key warning signs are — and that is the most difficult part.

Stress and pressure

When I was first diagnosed, one of the things the endocrinologist emphasised is that taking extra Cortisol is reserved for physiological stress, rather than pyschological stress.  Fighting off a bug, broken fingers: take the extra. Job interviews, family funerals, not so much.  Having said that, I have learned that there are some circumstances in which pyschological and emotional stress, especially over an extended period, place enough of a strain on the body that a little extra Cortisol is warranted.

This September (2009), I underwent a series of stresses — a family member had to undergo extensive surgery and therapy; we moved house; and a few other personal issues came up that put a bit of strain on my little world — and found myself tired, cranky, and easily fatigued.  I was far more touchy and brittle than usual. I attributed it to general fatigue, until, one day at work, I began showing some vague Addisonian symptoms.  I became suddenly vague and weak, and dashed home.  Following a checkup with my GP, I concluded that I was fighting off a bug or infection, and increased my Cortisol levels.  However, I wildly over-increased my Cortisol levels, and ended up on a few days of emotional intensity that was both unsettling and uncomfortable. The fact is, following weeks of strain and fatigue, I should have increased my Cortisol levels very slightly — by only 2-4 miligrams — for a week or two while recovering.  Failing to do so led to a drop in my strength and energy, and then I overcompensated, by an order of magnitude.  I didn’t improve, but found myself touchy, strung-out and panicky.  My GP referred me to the hospital, and I saw my endocrinologist, who put me back on the right track.  Some time off work, and a moderate increase in my Cortisol dose, steadied my keel and settled things down. A valuable learning experience, however: I have now learned that there is a threshold over Cortisol tablets that, if reached, is a big red flag that I am either not correcting a problem or overcompensating and need to get some hospital assistance.

This incident lead to a review, between my endocrinologist and I, about how much Cortisol I had been taking as a daily ‘maintenance’ dose, and we decided I had grossly underestimated my body’s needs.  The average is between 20-30mg over the course of a day, and because I’m small, female, relatively sedentary, etc., I thought I could do fine on far less — I was taking 10mg upon waking, 2mg at midday and 2mg in the evening, giving me a total of 14mg over the day. I am slowly learning that this is much to little, and I will be taking significantly more for the next six months, in anticipation of my next appointment in March.

 

Update: The above paragraph turned out to be a huge mistake. See the page Addison’s Disease-Dem Bones for more details.  

Unfortunately, so much of Addison’s Disease maintenance is “guess and check”.  You keep your dose steady for a while, and then vary it based on symptoms of over- or under-dosing, and wait and see what symptoms emerge on the new dose level.  It’s a slow process, and one that really requires you to understand your condition and what its subtle effects on your mind and energy are.

Final comments

I want to emphasise that Addison’s Disease has not been a debilitating condition for me.  It’s true that it’s an extra consideration I have to take when I’m planning holidays, or when I’m unwell, or anything out of the ordinary that will have an impact on my lifestyle or routine.  But it is manageable: it’s far from crippling, and there is no reason to think that it should keep you tied to home or make you gain vast amounts of weight or take up caravanning.  (Of course, if you want to do any of those things, go nuts: but you can’t pin it on Addison’s.)

If you, or someone you know, has been diagnosed with Addison’s Disease, don’t worry.  It’s so far from being the end of the world that I feel silly for even trying to be reassuring. It takes time, it takes insight and it takes a few mistakes, but you will soon find your quality of life is as good as it has ever been — anything else is up to you.  Good luck!