AI Awareness: Down & Up

Addison's Disease is considered by many to be in invisible illness ie you can't tell I'm sick just by looking at me. I suppose that is true, although my physical appearance has changed enormously since I got on this roller coaster ride called adrenal insufficiency. The weight gain and specifically where that weight is placed has lead to a number of people not even recognizing me. So for today's post for Adrenal Insufficiency Awareness month, I thought I'd describe and show the changes my body went through and continues to go through.

I'm reusing this from a previous post so that one picture wasn't last week...it was like 3 months ago when I was on a higher dose of Prednisone than I am now. I look soooo swollen.

The standard line from most doctors is that steroids taken at a replacement dosage will not cause excessive weight gain, "moon face", "buffalo hump"(fat deposit on the back of the neck), or other Cushing's symptoms (Cushing's Disease is basically the opposite of Addison's Disease; the overproduction of cortisol).

The problem is that there is no exact way to measure the ideal replacement dosage per person. The doctors can estimate based on weight and height but every body is different and every body responds differently to steroids. Plus there are a few different kinds of cortisol replacement steroids and people usually respond differently to each medication.

This was taken post-diagnosis, I remember thinking I was looking a lot better having gained some weight. In retrospect I look tiny!

When I was finally diagnosed I weighed about 85 lbs and many people and doctors thought I had an eating disorder. In fact, they wanted to send me to a rehab center for eating disorders and I was so sick and confused, I packed and agreed to go.

Note: I saw one website that listed "anorexia" as a side effect of untreated Addison's Disease. This is because cortisol plays a big part in digestion and if you are very low in cortisol, your weight will likely drop and drop. Many fellow Addison aliens I have connected with were also very thin pre-diagnosis and then gained, on average, 50 lbs when put on steroids. I don't think this is a correct usage of the term "anorexia" and believe eating disorders are very serious and am in no way trying to make light of them. 

I had these photos taken post-diagnosis, as I tried to re-gain weight. I promised myself I would love my body at any size. I think I was around 95 lbs when I had these photos taken.

At this point, I had found a few thyroid support groups online, as that was all I knew for sure I had an issue with at that time. Someone on one of those pages also had Addison's (if you have one auto-immune disease, you are much more likely to have another and thyroid and adrenals are especially linked) and sent me a graphic of what happens to people without treatment for Addison's Disease. It ended in organ failure and death. That person commented that they were worried that I was approaching that point and if I went to this rehab center in the middle of nowhere and did have Addison's, did they have cortisol on hand to treat me? Crying and confused and very scared, I called the rehab center to ask.

They didn't even know what cortisol was.

I was so thin, you could count my vertebrae from a mile away. And this was after gaining 10 lbs!

I remember calling my Dad then and telling him I felt like I was going to die and the doctors were just going to let me. That they didn't believe that there was anything really wrong with me (the "it's all in your head" bs that I heard for so long) and I didn't know what to do. I was too sick to think straight and it seemed everyone I was asking for answers didn't have any.

My Dad and that online poster saved my life. He started calling hospitals in my area until he found an endocrinologist who would see me right away. Since I was all packed up to go to rehab, I just threw my suitcase in the car, assuming a long hospital visit would follow.

The endo took one look at me and confirmed my hunch that I had Addison's Disease. He then took some time to look through my previous test results and medical history and only found further and further evidence of Addison's Disease. I was immediately put on Prednisone and a tranquilizer. I had lost so much calcium from my bones that they were worried even walking around would cause some kind of serious injury. I spent the next two months basically on bed rest and heavily drugged. My only job was to take my medications, eat, and weigh myself. I slowly but surely got back to 100 pounds.

I was super excited when I finally got back to 100 lbs. Little did I know the weight would keep coming!

I then made a very unfortunate choice in doctors and listened to a doctor who thought dexamethasone would be a better medication for me than prednisone. He claimed that it had some properties similar to a medication used to replace aldesterone (another steroid the adrenals create) called Florinef that is not available where I live.

Here's what I looked like when I started on dexa:

And this is what I looked like as time progressed. I'll let the pictures speak for themselves:

I don't dress like this, it was for a play and the only full body shot I could find. From then on it's only pics of my face.  

I just realized you can see my "buffalo hump" in this picture, it's so big!

After switching doctors yet again, I was able to transition back to prednisone and have been reducing the dose ever since. I am now on what we think will be lowest dose my body can handle: 5mgs/day.

In this first week on the lower dosage, I've already lost four pounds.

In this down and up journey, I am excited to be going back down.

Go ahead and google "prednisone face" and you'll see I'm not alone in this. Many, many people experience significant side effects from any dose of steroids.

But we'll take it to stay alive.

Love,

an Addison alien

who wants to thank every person who takes the time to read this: Thank you!