Thursday, December 20, 2007

Wondering About the Why's, or Cushing's is not Cushy at All

For some time now, my mom has had various symptoms of something the doctors can never seem to define. They always chalk it up to the fact that she's heading further into her 50's, or that she's overweight, and it was only a matter of time.

Forgetfulness, sleep apnea, swelling in her legs (she's already got bad knees), the early onset of osteoporosis, depression/anxiety (as a divorcee with a lot of other family issues right now, this seems common), and her hair has been thinning for years.

But one day, it started sprouting up all over her body. Her back, her arms, her face, her toes were suddenly really hairy, but the hair was falling quickly out of her head. As this progressed, she realized it was probably some kind of hormonal issue, so since my mom is whip-smart, she called up my old endo in Williamsport and made an appointment for herself. In the meantime, she had an appointment with her regular doctor. He told her she really needed to lose weight if she wanted to be a candidate for a knee replacement. And she ESPECIALLY needed to lose weight because her fasting blood glucose was high, as were her blood pressure and cholesterol levels.

These things were NEVER problems for her before, and my mom stays up to date on her physical exams. It's not like it had been years since she'd seen her family doc. She described some problems she was having, and he sent her for a CAT scan.

About two weeks ago, my old endo's office calls my mom to ask her if she could come in earlier than her scheduled appointment in January. They'd had a cancellation. Mom took an early appointment.

Finally, after years of everybody overlooking her problems due to her age/weight, there was an answer. Dr. S (for SuperEndo, lol) broke the's Cushing's. Disease or Syndrome, it's not certain yet. She has to have more tests done. Mom and I are both holding our breath that once they treat this, some of her problems will finally disappear. I don't know if Cushing's is genetic or not, but reading over the list of symptoms, so many of them sound like me:

-Thin arms and legs, carrying weight in the body's midsection
-Loss of libido
-Rapid heartbeat/palpitations
-Oily Skin
-Below Normal Body Temperature
-Fatigue/Waking feeling unrefreshed
-Swelling in hands/feet (ankles and feet for me?)
-Hyperlipidemia (saw it on my chart at the endo's office)
-Insulin Resistance

I really feel for my mom, and I really wonder about myself. Sure, these are only a few symptoms, but I always feel like nobody takes the time to thoroughly investigate my health concerns because I have diabetes, and I'm definitely not an ideal weight. And every endocrine-related issue out there seems to have symptoms that overlap, so maybe it's my thyroid (which I'm always told it isn't), or maybe it's Cushing's, or maybe it's just diabetes. Someone even asked me once if I have PCOS, but when I said I'd never been checked, they just said I'd have irregular periods.

Someone who's been on birth control for 4 years shouldn't be having irregular periods, don't you think?

But diabetes doesn't explain my body, and how it's a smaller version of my mom's. And it's never quite explained the swelling in my legs and ankles; I've never been told I have poor circulation, and my sensation tests always come out normal. Diabetes doesn't explain my at times severe acne, or my body temperature that's usually hovering around 97.7 degrees F. If I'm "normal" at 98.6 degrees, I feel feverish sometimes.

You know what? I'm excited that I'll be seeing a new endo soon. I plan on venting all of this frustration to see what comes of it. Maybe I should print out this post and take it with me. It could be something other than diabetes. Perhaps it's ALL diabetes, and all my previous doctors were just being vague with me.

I want, hell, I deserve some answers here. This is my body. I live in it; it's my home. I just want it to stop feeling like a foreign entity.


  1. how frustrating to be dismissed like that becauase of diabetes or extra weight. That is how I felt here in Taiwan--the docs just telling me to exercise more, and completely ignoring my symptoms. I'm sorry to hear aobut this, but I hope the Endo gives you and your mom some well deserved answers.

    I think you rock and you have to advocate hard for yourself. I've learned that over the years.

    Let us know what comes of it all...

  2. That really sucks that your mom's issues were overlooked for so long. Medicine really needs to get a handle on not chalking so many things up to being fat and taking a more nuanced look at everything. And treating everyone like a human and completely. Argh. Hope now that they know what it is she can get some kind of relief?

    My endo has also mentioned that I might have PCOS. I have irregular periods and carry my weight around my belly (pants are so impossible). What she told me is that there wasn't any reason now to test for it since it's not really bothering me (except maybe a little insulin resistance) and the treatment would be the same as what I'm already doing: exercise, watching what I eat especially carbs, taking metformin, and keeping an eye on blood sugars (HA - think I got this one under control compared to non-diabetics with PCOS, 12 times a day baby). Also - I don't know if this is related or not, but I think my periods have been slighly more regular since I started taking the metformin. This could also be due to less stress or finally finishing puberty completely (8 years after I started my period...), but it may have been the metformin.

  3. (my comment got cut off)
    and you totally deserve answers... I hope your new endo is helpful. Thanks for articulating all of this.

  4. Hey Hannah - sounds encouraging that you both might get some answers...

    Best of luck to the both of you!

  5. It's good your mother finally got a diagnosis.
    Running a normal temperature a degree low isn't all that unusual, but you could be having a low grade fever when you hit normal temperatures. My father and I usually have temperatures around 97, so a degree and a half low. I asked the medical professionals how low it'd have to go for them to be concerned, and they said below 96 degrees.

  6. I know that being a doctor is not easy. There is so much to learn and know, but if we are going to pay them so much for their expertise, I expect quality. I hope that it all just ends up being Diabetes related. I will you all the best (and your mom too.)


Remember to use your commenting powers for good, not evil. Excelsior!