Saturday, November 8, 2008


I haven't done a "personal" post in a while, and debated about doing this one. However, I think it's important to document what honestly goes on in the life of a person who deals with the repercussions of Cushing's on a daily basis.

As a quick recap, I had transsphenoidal endoscopic surgery to remove a pituitary adenoma almost 2 years ago. Prior to the surgery, I had a very Cushie body with numerous symptoms, and had most of those for a very long time (over 20 years). I was already suffering from hypothyroidism, multiple low hormones, and was probably growth hormone deficient, but I didn't test for that prior to surgery.

Since surgery, I have been diagnosed with adult growth hormone deficiency along with my hypothyroidism, plus my anti-TPO keeps going up and up indicating an auto-immune problem with my thyroid. I have very low levels of estradiol, LH, FSH, and testosterone. Also low are potassium, vitamin D, and ferritin. After surgery I had a problem with diabetes insipidus, but that gradually decreased. I still have days when I think I may have a bit of that, but not often.

Right after surgery, I made so little cortisol on my own that it was next to nil. ACTH was also under the testing limits. I was on 20 mg of cortef in the a.m. and 5 in the p.m as a replacement. Gradually, my levels have come up and a few months ago I was able to wean down to 5 mg a day. I was able to maintain that for the most part. Except....

Yes, the big "EXCEPT".... except when stressed in any way physically, emotionally, or mentally. Normal folks (I'm speaking biologically) don't have to even worry about the body producing enough cortisol to handle stress. The pituitary and adrenal glands have a feedback loop that works with the hypothalamus to produce what is needed when it is needed. But those of us who deal with the aftereffects of Cushing's don't have that. In fact, those who have cyclical Cushing's don't have it, either. The body does not regulate itself well, and can go through major "high" and "low" swings in ACTH and/or cortisol. This can lead to adrenal insufficiency (AI).

What is AI? Basically, it is the body's inability to produce enough cortisol. The body can also go into "shock" with AI symptoms when a drastic reduction of cortisol happens. This can happen with someone who still has Cushing's and who cycles drastically. AI symptoms include being extremely cold, inability to reason/think, shivering/shaking or just being "out of it", nausea/vomiting, muscle weakness, and much more. I listed these because they are the ones which affect me the most.

Which leads me to my life lately. I'm playing a guessing game each day of how much cortef my body needs. I tend to the least amount because I really, really want off the stuff. And I've quit losing weight although I've done all I can to keep losing short of going on a starvation diet. I'm contemplating that next. My GH replacement has helped tremendously with muscle strength which allows me to do more walking when I'm not dealing with AI.

A few weeks ago I had a scare, thinking I was getting "Cushie" again. My face got rounder/fatter, I gained 7 pounds in one week, and I hadn't changed a thing. Now, a few weeks later, I'm again AI most of the time and guessing how much cortef I need to "get by" for the day. The 7 pounds are gone (thankfully), and I feel like ...ahem... crud. I wake up sometimes not able to get out of bed due to extreme muscle weakness. I have to take cortef (on my bedside table) in order to get up. Nausea is often my companion until the cortef works, and often even then. But the worst part is the "walking through mud" part. And the shivering. Everyone else is shedding jackets and I'm piling them on. My hands stay cold. I feel like ice is running through my veins.

Why? Now, that's a good question. I've been fighting sinus infections and pyelonephritis (kidney infection) for months. The sinuses seem to be clear now, but the kidneys are another story. I'm tired of taking antibiotics. I saw an urologist last week, had a CT scan done (I'm allergic to the IVP dye), and will see him again on Tuesday. Just the office visit with the procedures done there threw me into adrenal insufficiency. Naively, I didn't think it would stress me like it did (I wasn't expecting to be catheterized, either), and between the bladder spasms and the catheterization, my body rebelled. I guess it was good he got to see it first-hand, because he realized the implications of my problems beyond the norm. The bad thing is, I broke out in hives and a rash, again.

Oh, I forgot that part. It seems when I go extremely AI, I get hives and a rash. I spent two weeks miserably trying not to "dig" during the prior episode. (There ought to be a commercial in that somewhere!)

Thus, my life is a rollercoaster. And it is for most folks trying to figure out hormone replacements "manually" instead of being on autopilot like normal people. Just one hormone replacement is not so bad. But factor in several, and it's a different story. Both GH and thyroid replacements need enough cortisol to work correctly. They can cause an already "low" person to go into AI without sufficient cortisol replacement. Too much cortisol replacement, and one is back into being "Cushie". Working one-and-a-half jobs while riding it isn't easy.

Damned disease. I hate it. I used to love a good rollercoaster ride.


  1. I hear you. Smooth sailing sounds better.

  2. I'm right there with ya, my sista!
    All I can think is "enough is enough!" Let me off of this damned ride.

  3. I am so sorry, Robin. (((my sweet dear friend)))

    Do you have a medic-alert bracelet? Please, please tell me that you do. *head in hands*

    Do you have an emergency solucortef shot?

  4. Hi, y'all. You know the ride yourselves. Lisa, I do wear a medic-alert bracelet always and I do have the emergency solu-cortef. You'd think by now I wouldn't need it. Ha....



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