A lot has changed since I wrote Attitude, part two . Actually, I guess in some ways much is still the same, but information I now know has changed.
Have you ever had one pivotal moment in your life which may seem fairly innocuous to others but was life-changing for you? Something that would wouldn't make most folks even raise an eyebrow, but you knew it meant something important for your future? Your now?
Yes, I had one of those moments this week. All because of a urinary free cortisol (UFC) test. It was high. Not just a teeny bit high. High. Heart-wrenching, gut-churning, stop-the-presses high.
Actually, I wasn't shocked. You see, I have had a heck of a time weaning off of hydrocortisone since my pititary surgery in 2006. Adrenal insufficiency followed me like a hound on the trail of racoon, sniffing my heels when I tried to wean. With a lot of effort I had managed to finally get down to 5 mg of cortef consistently by the time I posted Attitude, part two . Because of a change in growth hormone doses and thyroid replacement levels about that time, it was even tougher to stay that low. Both of those need sufficient cortisol to work well and will use what's available. But all of a sudden, I felt "Cushie" on the 5 mg. So I easily weaned to 2.5. Then, I felt Cushie on that, so I stopped it.
Sure, I had a few "tough" days. But I weathered through them. My body wanted what it was used to. But no adrenal insufficiency prevailed. My endo had ordered the UFC to check my levels while on cortef, but since I had managed to wean off prior to doing it, it showed my natural levels, not supplemented levels.
Typically I get results as soon as they are run, but we forgot to put that permission on this slip, so I had to wait on my endo's office to send them. The fact I didn't raise cain or have a conniption fit in order to get them myself is testament to the fact I knew in my heart what the result would be. I was in denial. I didn't want to see that. I wanted to stay in remission. I want to be cured.
I got a brief email with the results. I opened the email, clicked on the PDF attachment, and there it was in black-and-white.
High.
My world changed. I cannot change it back. I can't go on in blissful ignorance thinking I may still have a cure. That I may still be in remission. The question mark is now there. And it is a huge one.
So, what do I do now? I test. And test some more. Until we have a definitive answer. MRI's, midnight serums, midnight salivaries, more UFCs. I know those are coming. Wait, they are here. Now I do them.
Life changes.
Have you ever had one pivotal moment in your life which may seem fairly innocuous to others but was life-changing for you? Something that would wouldn't make most folks even raise an eyebrow, but you knew it meant something important for your future? Your now?
Yes, I had one of those moments this week. All because of a urinary free cortisol (UFC) test. It was high. Not just a teeny bit high. High. Heart-wrenching, gut-churning, stop-the-presses high.
Actually, I wasn't shocked. You see, I have had a heck of a time weaning off of hydrocortisone since my pititary surgery in 2006. Adrenal insufficiency followed me like a hound on the trail of racoon, sniffing my heels when I tried to wean. With a lot of effort I had managed to finally get down to 5 mg of cortef consistently by the time I posted Attitude, part two . Because of a change in growth hormone doses and thyroid replacement levels about that time, it was even tougher to stay that low. Both of those need sufficient cortisol to work well and will use what's available. But all of a sudden, I felt "Cushie" on the 5 mg. So I easily weaned to 2.5. Then, I felt Cushie on that, so I stopped it.
Sure, I had a few "tough" days. But I weathered through them. My body wanted what it was used to. But no adrenal insufficiency prevailed. My endo had ordered the UFC to check my levels while on cortef, but since I had managed to wean off prior to doing it, it showed my natural levels, not supplemented levels.
Typically I get results as soon as they are run, but we forgot to put that permission on this slip, so I had to wait on my endo's office to send them. The fact I didn't raise cain or have a conniption fit in order to get them myself is testament to the fact I knew in my heart what the result would be. I was in denial. I didn't want to see that. I wanted to stay in remission. I want to be cured.
I got a brief email with the results. I opened the email, clicked on the PDF attachment, and there it was in black-and-white.
High.
My world changed. I cannot change it back. I can't go on in blissful ignorance thinking I may still have a cure. That I may still be in remission. The question mark is now there. And it is a huge one.
So, what do I do now? I test. And test some more. Until we have a definitive answer. MRI's, midnight serums, midnight salivaries, more UFCs. I know those are coming. Wait, they are here. Now I do them.
Life changes.
Robin, If it's back I hope you get a lot of highs fast. Then you'll know where things stand.
ReplyDeleteI'm so sorry.
It's so weird how we just "know"! I still can't get high enough highs. They are high enough to know it's still there, but not high enough to get me to surgery. I feel awful, and wonder how in the world I can't prove it! I think our bodies are more sensitive than the tests! The Keto has given me some relief.
ReplyDeleteI hope your testing goes quickly, and you are back on the "cured" side of things!
Hugs,
Gracie
I'm so sorry, Robin. I know too, but denial is nice while you can keep it going. I'm really, really sorry (((((hug))))
ReplyDeleteThis disease is so unfair! I am so sorry Robin.
ReplyDelete(((Robin))) I'm so sorry to read this. Enough, already!
ReplyDelete