A blog to share about Adrenal insufficiency, Addison's Disease, Aspergers Syndrome, Autism, Music, Inspiration, Scrapbooking and other elements viewed through the lens of my life. I'm hoping that others who are traveling this journey may find some commonality, and maybe some information and inspiration.

Tuesday, November 5, 2013

A New Twist in the Journey

You just never know what life will bring. I've had a few health challenges through the years, some of which made me miserable for quite some time until a diagnosis and treatment was found. Some have altered my life, most not much, not yet.

But the last few months have brought on a new challenge. Let me back up a bit to say that I have a couple of autoimmune diseases which is potentially very relevant.

Starting in September, I started a not-so-slow decline in my health. I finally got so bad last week, I had to miss work because I didn't have any energy to even get out of bed unless the need was urgent. So I finally went to the doctor. I had my suspicions about what was wrong with me, and after listing my symptoms (but not telling him my suspicion) my doctor came to the same conclusion. Adrenal insufficiency. This is a rare disease/disorder, but as my doctor said, rare means it does happen to some people, and if the doctor is unaware he won't see it when it happens. I was not overjoyed to have my suspicions validated, but hugely relieved that I just might start feeling better.

I had to go back to his office the next morning for an AM cortisol test, which we are waiting on the results. I just hope they are conclusive and not vague. I don't want to have to start a long expensive search as to why I have all these symptoms. He was convinced enough based on symptoms (I had every one of the classic symptoms over the last couple of months) to start treatment right after the blood test.

So what were my symptoms?

It all started with very strange leg cramps. At night or at rest, but unlike typical leg cramps. More like sudden tetany. Often preceded by "ripples" running up my calf. Then my muscle cramped so hard I couldn't get it to relax without standing on my toe and using body weight to counteract the spasm. Not fun, I'll tell you. I've rolled around on the living room floor moaning and crying more than once with repeated spasms. I realized that any time I used my muscles for exercise (as "strenuous" as an easy walk) I was pretty guaranteed to get a series of bad cramps. First sign something was amiss.

One day when I was walking (I'm pretty stubborn about getting my walk in in spite of the cramps), I had an odd "spell". I felt weak, shaky, and just not right. So I rested. It gradually went away.

Pretty soon I was too tired to walk my usual distance. This became shorter and shorter, until 5 minutes was too much. Pretty soon I was having to spend every moment I wasn't working in my bed resting and sleeping. Until I couldn't even get up to work.

Meanwhile I lost my appetite. Now, I normally love good food. I weighed a good 10 pounds above a healthy maximum for my height. But suddenly I just didn't have any interest in eating. I lost 11 pounds over the last two months without trying. That is definitely not me. Ever since I put on weight with my descent into hypothyroid, I have had a real struggle losing any weight at all, even with replacement medication. I have to say, I don't mind the weight loss at all. I'd be thrilled to lose another 20 pounds, down to my young adult weight, but not if I have to live with zero energy and zero life to do it.

My blood pressure dropped. For many people that would be an excellent thing, but not for me. I have orthostatic hypotension, which means that my blood pressure drops too much when I move from lying to sitting or sitting to standing. I've been on medication for it for a couple of years, and that normally puts it right in the BP sweet spot, around 120/80. Now it's variable. So not always low, but I've clocked it down to 90/60. And sometimes 140/90. Wonky.

Then I got a migraine headache, due to allergies. Normally I just have a headache for a few days. Nasty, but I know what to expect. Not this time. I felt sicker and sicker as the day wore on with nausea (not a normal thing for me with these headaches). Suddenly, overwhelmingly, I was vomiting. Sorry, TMI, but important information if you are developing adrenal insufficiency. This was on my birthday. I was just glad we had already celebrated, so I could just go to bed. I've only had this happen once before, a year ago, after a upper respiratory illness, without having a stomach bug of any kind. Normally I have an iron stomach.

I started getting a low level ache in my flank area. Not kidney stones (I know that pain all too well). Nagging but not painful. And I just kept getting weaker and weaker. And slower and slower, in body and in mind. Walking up the stairs became like climbing Mount Everest.

I started reading things online related to these issues, and adrenal insufficiency or Addison's disease kept cropping up. At this point I had all the symptoms except skin hyperpigmentation. This is a common symptom, but only in patients who have primary adrenal insufficiency, caused by failing adrenal glands. There are secondary causes (pituitary and hypothalamus) that don't get the pigmentation.

I kept reading, looking at pictures of hyperpigmentation, which are always extreme cases and often people with a lot more natural melanin than me. They weren't very helpful to me.

I finally stumbled on a photo of someone who had been diagnosed who looked as naturally pale as I am. I looked down at my own palm crease to compare and was shocked to see that my palm creases looked kind of yellow-ish brown, just like her photograph. They are normally quite pink. Yikes! Check off the last symptom.

I thought I'd just bring all this up the my doctor at my annual physical, which is in a few weeks. But then the insides of my wrist and my armpits started turning a muddy looking tan.

And I couldn't get out of bed. Finally my husband told me I had to get an appointment immediately. I'm so glad I did.

First of all, I have a great internist. I'm pretty sure he's been on the lookout for this due to my autoimmune and orthostatic hypotension issues, both of which make it somewhat more likely.

I'm happy to say I am beginning to feel a little bit better.

Here's my days so far on hydrocortisone, which is replacing what is missing in my body:

Day 1 - I was able to be out of bed in the evening for a few hours without longing, needing to lay down.

Day 2 - I was up a bit first thing in the morning, down again, forced myself to work a few hours (exhausting), down again, but rested enough to be up again in the evening

Day 3 - Upright a few hours in the morning, then resting but not as totally wiped out as last week. I do have to work today, though I wish I didn't. I'm self-employed and technically that means I can take off if I need to, but my income is nil when I don't work, which isn't good going into having to pay cash for tests because I'm uninsured. So I'm going to work. At least today. We'll see how it goes and if I think I can stand it another day or need to take off the rest of the week. My body says I need to heal and that means rest. Sigh.

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