The Truth About Adrenal Disorders

There’s a common saying in medicine: “When you hear hoof beats, think horses, not zebras.” It makes sense. After all, the obvious answer or the most common diagnosis will be correct most of the time. That is, if a young, generally healthy person has a mild cough, it makes sense to look for an upper respiratory infection or simple cold and not immediately jump to the possibility of lung cancer. But sometimes it is lung cancer, and that’s why, while the odds are that when you hear hooves it’s a horse, it’s important to remember that every once in a while, it’s a zebra.

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That’s the lesson Rene Kiser has learned over the last two years as she watched her body shrink from a size 16 to a size 8. “If I was trying and I lost that much weight, I’d be throwing a party,” says Kiser. “But when you’re not trying, it’s kind of scary. It seems like it’s leveling off at this point, but it’s scary.”

Kiser, at only 35, hasn’t worked in two years. “I have a long list of medical problems. I stopped working because of fibromyalgia. It was right around August of 2010 that I started having the really severe symptoms of nausea, vomiting, diarrhea, a lot of GI symptoms, and my blood pressure was horrid.” Rene explains that her blood pressure bottomed out when she changed positions, for example, going from sitting to standing. “They ended up diagnosing me with orthostatic hypotension. I also developed vertigo and had an incident when I ended up in the emergency room. My diastolic pressure dropped into the 30s.” Another time, Kiser reports, “I fainted in my living room. Thankfully, my husband was home that day.”

Doctors immediately started looking for those proverbial horses. “They tried to blame my thyroid,” recalls Kiser. “They tried to blame my medications.” But neither suggestion was helpful in obtaining Rene’s diagnosis and treatment, and the months passed with no real answers or help.

Fortunately, Rene is an active participant in her healthcare and a strong advocate for herself. She insisted on copies of her labs from her ER visit, and she took those with her to an endocrinologist who began running tests and considering adrenal disorders. For Rene, it was a scary time. “By the time they started talking about adrenal disorders, I’d been sick for a long time. You are all of the sudden hearing that this is something that your doctor thinks you have, and you find out what you can about it because you don’t know what’s happening with your body. It’s scary.”

Those initial tests at the endocrinologist didn’t show an adrenal disorder. But another six months passed, and Rene was still sick and losing weight. Her endocrinologist decided to retest Rene in the hopes that she had a developing adrenal disorder that would result in a difference between the first and second rounds of labs. She was right.

“Usually people hear adrenal disorder and they think Addison’s,” says Kiser, who, rather unusually, has no family history of adrenal disorders, making her diagnosis a real zebra in that field of horses. “Mine is not that. Mine is the pituitary. There’s no indication of why it’s not working, but the assumption is it’s autoimmune.” Rene explains that while her adrenal glands do function if and when they’re stimulated, her pituitary gland does not send the right signals to her adrenal glands to tell them to produce cortisol. Her doctor immediately put her on steroid replacement therapy.

Rene has been on steroid replacement therapy since April of 2012, and she’s found that life with an autoimmune adrenal disorder is truly difficult, particularly as a mom of school-aged children. “Having two kids makes it really hard. You can imagine what they bring home. If I get sick, they have to increase the steroids. If I get really sick, I have to go to the hospital.” Additionally, Rene lacks the typical “fight or flight” response now, and says, “My body can’t react to stress (the way) someone else who is relatively healthy would. I get sick because my body is unable to manage stress appropriately.”

With so much going on in her life, Rene is quick to credit her support system. “My family has been amazing through this entire journey. My husband has attended appointments with me to be supportive as I get test results and to help in taking notes on what the doctors are saying because by the time we leave, I can’t remember what they just said. My parents (who are both disabled) have also attended appointments with me, provided me with transportation when I do not feel able to drive myself, and my mom is a retired nurse so she has been a wonderful resource when I don’t understand the terminology of what a doctor tells me. My sister and brother have both been supportive long distance by telephone since they live in different states than me. For anyone who is going through any type of journey like this, trying to figure out what is going on, basically feeling like your body is betraying you, having a good support system is really important. I have been extremely lucky in that respect.”

It’s truly been a life-changing journey for Rene, who now carries her medical information with her everywhere she goes. “When (my doctor) told me I had to wear a bracelet, I was like, ‘Great.’ The first thought that I had was this image of those bulky metal bracelets that you used to see on the boards in the pharmacy windows that are just ugly, and I didn’t want to have to wear something like that. So, I did some research and I found Lauren’s Hope. Right away I ordered two bracelets and my tag, and then last summer … I bought a stainless steel one, and my daughter bought me one for Christmas. I’m getting quite a collection.”

Rene usually wears her Infinity medical ID bracelet, which lists her husband’s contact information, her adrenal insufficiency diagnosis, and her latex allergy. She also carries more information in her wallet (Purchase a wallet card here!), and encourages others with complex medical histories to do the same. “There’s only so much you can fit on the bracelet. To try to make sure that I have what I need to all the times, I actually have laminated index cards that I keep in my wallet. They have my most current medication list, a list of my physicians, and a list of my medical history because I have an extensive history.”

These days, Rene is far from worrying about unattractive, pharmacy window medical ID jewelry. She’s actually become quite a brand advocate for Lauren’s Hope! “I think having something that’s more stylish makes it easier to deal with,” says Kiser. “I talked my cousin into buying one. She should have had one a long time ago because she has a really bad allergy to tree nuts. I went online to walk her through it.” Rene also gave our brochures to her doctor, “…because she treats kids. What kid wants to wear one of those bulky ones? They want something cool and fun and more appropriate for a kid.”

Rene knows this first-hand as a parent herself. “You want your kid safe, and you want them to have what they need, but you want it to be what is appropriate for them,” says Kiser, who was happy to find our waterproof medical alert bands for her daughter, who now wears one all the time and carries an EpiPen for her many food allergies. “You have to get something that they’re going to want to wear and want to keep on,” Kiser says. “She wanted to show all her friends.”

Asked what advice she has for people with medical conditions who don’t wear medical ID jewelry, Rene pauses for a moment and then says, “I think it’s too scary not to do it. There are too many things that can happen that would create a situation where you are not able to communicate your needs. If you don’t have the jewelry and you don’t have the ability to communicate, you’re setting yourself up for a situation where your life is at risk. And I think you have to ask yourself what your life is worth. Literally, you’re talking about, ‘Is my life worth $50?’ I want to be around to see my kids graduate high school and have kids. That’s what it comes down to. What is it worth to you?”

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