Note 1:You can read about the first time I had Cushing's here.
Note 2: Today is the day I see a new endocrinologist. I am terrified that I will find no help. That no one will listen to me, again. My husband is coming with, to help keep everyone on track and so I don't just give up and walk away, again. Good thoughts would be appreciated.
Note 3: The picture above is from my actual lab result. I am not super tech savvy so that's why it's so funky looking.(Also I wanted to crop out my name.)
The second time I had Cushings was slightly better than the first in that it was diagnosed. I must add, that the diagnosis came after much pushing on my part. I had finally done some reading and knew that something bad had happened to me as a result of the prednisone in the past. I had no desire to repeat history and was emphatic about being tested.
The blood work came back at 1. Normal cortisol levels start at something like 8.
For a year, we tapered prednisone and did 2 hour challenge tests (have no idea what the official medical term was for the test).
I felt like shit, but having gone through it before, I marshaled my resources. I watched what I ate. I exercised despite some pretty significant muscle pain. I didn't lose weight, but I didn't gain either. I might have lost if I'd known about low carb eating (which is actually recommended for Cushings FYI).
And when they gave me the thumbs up to stop the prednisone, everything went to hell.
I had less energy than a corpse. Actually had issues staying conscious at times. Slept 15 hours a day. Went to work, fought to stay awake (passed out once at work), came home and went to bed. If I laid down, I would essentially pass out. So I had to keep moving as much as possible in an effort to keep myself from falling asleep against my will.
This may seem like exaggeration or hyperbole, it is not. This was literally my life.
God, it was awful. Thankfully, at least I wasn't driving--the hubby took me to work as our jobs were in the same area for the same company.
Dutifully, I presented myself to the doctor and they could find nothing wrong.
By this time, I had also enrolled in some basic anatomy and physiology classes. Doctors practice defensive medicine,right? Well I needed to put together my own special brand of defense. I couldn't count on doctors anymore.
While studying the Krebs Cycle in my A&P textbook, I stumbled upon a chart that listed important vitamins/nutrients related to the Krebs Cycle and ATP production.
A light bulb went off in my head.
If prednisone interfered with nutrient absorption?
And I had been on it for a year?
And on it intermittently for years before that?
And I had no energy, ergo maybe there was something going on with ATP production?
And I wasn't a big vitamin taker?
Given all that, what could pantothenic acid do for me? (Link goes to an article on the Krebs Cycle.)
I bought some that night. Took five pills, beyond caring about an overdose and figuring more was better.
80% improvement overnight. No lie. It was more than a miracle.
It took another two years to recover the remaining 20%--something I attribute to still not fully understanding how nutritionally deficient the prednisone had left me. (And also the incredible lack of awareness within the medical community about how prednisone and Exogenous Cushings could affect someone even after the adrenal glands started working again.) So between the first episode of Cushings and the second, Cushings consumed my life from the age of 22 through 30.
What were you doing in your 20s? Probably off having a lot of fun that was not even an option for me. I hate that about my 20s. Then in my 30s, I got hit with PCOS and infertility. I feel gypped.
Anyway, not once had a doctor thought to check my B levels or assess me for any other nutritional deficiencies. Oh, they checked me for diabetes. They checked my adrenals again, but they missed the obvious. Again.
(Doctors don't seem to know much about nutrition and it is hurting patients like me. A book I highly recommend, that I've even seen in some physician offices is Prescription for Nutritional Healing.)
This was also the turning point that marked my enduring interest in nutritional/alternative therapies. I have had really good experiences with vitamins. Now, I don't know if that's because I was chronically deficient from the prednisone or what, but they work for me. I am more likely to try a vitamin, natural remedy or supplement than a prescription drug, often with great results.
In fact, right now, I'm eating celery every day for my blood pressure (which remains low with the occasional higher reading, but I'm still on prednisone too). I read about its impact on blood pressure and, since I currently eat a lot of celery due to prednisone munchies anyway, I thought, why not see what happens?
What the hell? It can't hurt me any more than a doctor would.
I'm categorized as a severe persistent asthmatic* and I have a history of HPA axis suppression due to steroids used to treat the asthma.
Doctors miss the HPA axis suppression every time and actively fight me on it. I've had am cortisols of 1 and 6 and ACTH of less than 5, yet the doctors still can't get on board. The medical myopia and general lack of adrenal knowledge is horrifying.
How did I ever get diagnosed? I took premed classes for 2 years (during a health upswing) and figured it out.
I thought since previous rounds of suppression have been so well documented, I wouldn't have a problem again. I was wrong.
I've been fighting the current round of Secondary Adrenal Insufficiency since March 2010. It has eviscerated my ability to work and to function as a normal human being. Which sucks since I have a toddler who just wants her momma to play with her.
*eh... I bet it'll go back to moderate persistent, once the excitement of last year's hospitalization dies down.
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