This is going to sound weird to people who just don't understand all about this disease. I got the radiologist's report back on my latest MRI. In short, they don't see any tumor. That doesn't mean I don't have Cushing's, it means they don't see any more tumor THERE to be taken out.
The nature of the beast is like this. You can have different types of tumors. There are ones they call ooey gooey tumors, that are similar to snot, and just kind of run everywhere. There are well formed tumors (mine was) but they are not always easy to get either. If one cell gets left behind, it begins to grow again. Some of these tumors have tentacles on them. They are very tiny, and not easily seen. My surgeon took extra tissue around the tumor, and thought he got all of it, but they can't see those tentacles, or how far they might go within the gland.
I was hoping they would not see any tumor regrowth. That would have meant that my endocrinologist would have wanted me to go back for another pituitary surgery. If they didn't get it all the first time, who's to say they will get it the second time? The second time around you have more chance for what is called a CSF leak. It's cerebral spinal fluid. No thanks! Since they are going in and just hacking away at the pituitary, hoping to get any tentacles they missed, you end up with hormone losses. That's a mess in my opinion. At this point, most of my hormones are fine, and I want to keep it that way. I don't want to balance every one of my hormones for the rest of my life!
So, since they don't see anything to go after, this means I can have a bilateral adrenalectomy, also called a BLA for short. With the BLA, they take out both of your adrenals. That cuts the feedback loop and stops the excess cortisol that is causing Cushing's. There are "complications" associated with this surgery as well, but they are more favorable to me. If you still have tumor on/in the pituitary, and you have a BLA, there is a chance that the tumor can start growing rapidly. If it does, then you have to either have another pituitary surgery to debulk the tumor, or have something like the gamma knife radiation. You can also develope Nelson's Syndrome. With that, your skin gets dark when your ACTH levels go high. Sometimes you just look tan. Other times, you look dirty and splotchy. Personally, I feel so bad, I don't care if I look like a spotted leopard! I just want to feel good again. Everyone has different feelings about our options and what is best for us. We are all different. This is what I think is best for me.
Once you have a BLA, that means without adrenals, you have NO cortisol. Everyone has to have cortisol to live. It's not an option to not take it. If you don't take it, you WILL die! You can't take it whenever you feel like it, you can't run out of it and pick it up when you get around to it. That means, you are one pill away from death at all times. That is drastic, but it still sounds better to me than to go through another pituitary surgery, end up with a CSF leak, lose a lot or all of my hormone function, and still not be cured (this happens a LOT)! So, I'd rather just skip to the BLA. I've lost too much of my life to this already. I don't want to spend more years of failed surgery, testing again, another surgery, etc. I just want to be done with it, and this is the best way to do that.
So, where does that leave me right now, at this moment? Well, I am testing again, and when I get some good highs, I can move on. My doctor made it sound like I won't have to do a lot of testing. He really wanted to get the MRI report. He would like to see some more highs (I think), but the ones I already had were high enough that he agreed that I still have Cushing's. I hope I don't have to test and test forever to get super high highs again. I've already went downhill so fast, it's not funny! I was feeling decent at the beginning of Dec. By the end, I was starting to feel pretty bad. When the new year hit, I hit rock bottom again! I feel like I'm back at square one. Everything that I'd seen progress on, is back to the same ole, same ole! Not good!
6 comments:
Onward & upward!!!
I'm curious about something, Gracie. I've been doing some research and I've come across some case studies where the dopamine agonist drugs, like cabergoline (usually used for prolactinomas,) have been effective in treating certain Cushing's tumors. I wonder if this would be something worth trying.
Hugs,
Melissa B.
Melissa, I don't know, but I doubt it. For many of us, the adrenals are involved too, and must go to get the cure. The adrenal involvement doesn't always show on scans. They only find out when they come out!
Hugs,
Gracie
Gracie! Thank you so much for your comments and help! I'm wondering how you know about the whole suppressing on the dex test thing. I would love to be able to bring that information to my doctor, because I'm afraid that one test is going to set me back for months, if not longer. I got an appointment at Mayo based solely on my MRI report, but if they see that dex suppression, I'm worried they're going to blow me off. How can I convince them that you're right, and they're wrong?
Also, I'm wondering about cortisol "highs". I've read in a couple of places that anything below 90 on a 24 hour UFC means it's not Cushing's (with a 4-50 normal range). What were your levels? How high is Cushing's diagnostic?
I've been lurking on the Cushing's help boards, and posted once on the guest board as "Mamy" and "Ready Go" (switched in the middle)...I'm thinking of posting to ask for some other people who suppressed on the dex but ended up having Cushing's to give me their story and test results. Do you know of somewhere I can find that already? Or should I just post?
Thanks! I really appreciate your support!
I found your post about the ACTH stim test on the Cushing's boards. You do have very conflicting results. Your very low response to the ACTH stim test would suggest you are adrenal insufficient, but we know you are not with the high levels of cortisol you have baseline. However, if you have taken or used some form of steroids for a long period of time, you should expect the same response on the ACTH stim test that you got. Are you on any inhalers or use any type of skin cream that has steroids in it? Anything for eczema or something similar? This can make a difference.
Many of us suppressed on both the low dose and high dose dex tests, and we had Cushing's. I suppressed on all of them. On one test, I was fairly close to not suppressing. If you are cyclical, that explains the ups and downs. That means, if you tested in a low cycle, with the dex test, you would have suppressed. That doesn't mean you don't have Cushing's. It can just mean that you are in a low cycle, or that it is a pituitary source. The people with Adrenal Cushing's, don't usually suppress (maybe some have, I can't remember). The low dose and high dose dex testing is suppose to differentiate between pituitary and adrenal sources. Again, if you are in a low cycle at the time of testing, the results will not be accurate.
As for the UFC's, I never had ONE HIGH CORTISOl! Many of us don't. I did get high 17-Hydroxycorticosteroids in my 24 hr. UFC's. Those are the remains of cortisol after it's been processed through the liver, it comes out as a 17-OHCS (shortened title for it). If those levels are elevated, they show that excess cortisol has been in the body, even when other tests are hard to tell, due to the cyclical nature.
Some doctors look for UFC's to be 2x, 3x, or 4x higher than the upper limit of normal (50 by your lab), but some doctors realize a high is a high. The higher it is, the more convincing it is. Most doctors are trained to be very conservative with the diagnosis, I think. Dr. Friedman counts anything over the limit as high.
Many of us don't get highs in at least one test or another, but get them in others. There are saliva tests, midnight serums, which are very good for telling what is going on late at night, the UFC's for cortisol and for 17-OHCS. Dr. Friedman also does 10 hr. UFC's. Most doctors don't do that test though. Most doctors don't test the 17-OHCS any more either. That use to be a "gold standard" test. It's a very important test most doctors have thrown by the way side.
Start posting on the boards more. I seen that you only had one reply to your previous post, and that is unusual. It was close to the holidays though, and some of us do miss new posts.
You definitely need more testing to find out exactly what the source is (providing that you know you don't use any form of steroids). Once you have posted on the boards a certain amount of times (I forget how many, maybe 8?), you will get more privileges and you can send private messages to members there as well. I'm not sure what all you have access to at this point. Stick with the boards though, and you will make new friends and you will find great help and support there. When some of us are feeling too bad to help, others pick up the slack.
There is a lot of information on the boards, and we can help point you in those directions by posting links and such. It's harder to do on here.
Hugs,
Gracie
Dear Gracie, sending you positive thoughts. Just reading your post about the message boards... initially when I was looking for info on what may be wrong with this ole body i spent several weeks on the boards, then holidays, some major setbacks, emotionally physically and I just have not had the energy to navigate through the boards nor be on the computer ... reading tires me so, mentally fogged so much of the time ... yet your suggestions to the others encourages me to do so. I hope you are doing okay. Love and healing prayers to you, Hazel
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