I now have 3 high tests: 38, 39 and 51 (range10-34). Of course, the one I did the day before that 51 was “cancelled” by the lab. It’s unclear why, other than they could not run the test.
Trying to summon the willpower to call the hospital during the day and arrange midnight serums. If I did a few of those over the next week, it would probably get me over the hump for re-diagnosis when I have my appointment in a couple weeks. Forward progress is always the goal.
It’s harder this time. Not because the symptoms are worse, but because it’s just harder to fight through it all again. In some ways, it’s easier because I know what I’m looking for and I know what’s going on, but it’s hard to do this a second time. It wasn’t supposed to be like this.
So far, my tests are pointing to a recurrence. Two of three 24 hour urines I did in December were high (not monstrously high, but out of range). I have two more at the lab, and I’m calling tomorrow to see if the results are done. I was supposed to have an appointment with the Good Doctor this coming weekend, but it turns out he has a conference and it’s going to be postponed a week.
I know I need to do more tests. But for whatever reason my lab cannot get the supplies I need for the saliva tests, which leaves me needing to do midnight blood work. And I just don’t want to do midnight blood work, I guess because I’m still sort of sleeping at night and I’m hesitant to mess with the sleep cycle (she says as she types this at 11:15 pm on a Sunday). Also, it’s a giant PITA to arrange midnight blood work. But I guess I may as well tackle getting that arranged this week. Hospitals tend to report results much faster so I would, in theory, have even more information for my appointment in two weeks.
At this point, the hardest thing for me is seeing how much stupid Earl has taken from me these last several years. I am trying to decorate my apartment, so I was going through photos looking for some from the my running days, and I found all these photos from right before and during law school. I was so thin. And to think I thought I was not as thin as I should be. I suppose everyone can relate to that feeling.
It’s not just my weight, but of course that’s a big part of what was taken from me. I’ve also lost my fitness and strength. I look at that 26.2 sticker on the back of my car and think if anyone saw me next to that, they’d never believe I ran that far. My energy levels have completely tanked, in spite of getting my thyroid tweaked upwards again. I spent most of this weekend on the couch, although I did managed to get my apartment cleaned.
Anyhow, I owed you all an update. I’m feeling a little weepy after the photo thing, but I’ll survive. Hey maybe the next time I post I’ll have a diagnosis and a plan. Wouldn’t that be great? It’s a sad, sick world when great = having a diagnosis for a serious illness, round 2. But that is my life.
Sadly, it appears that Earl has come back to me. Apparently he liked me so much he couldn’t stay away. I don’t have official confirmation yet, and I hold out a small ray of hope it’s just my thyroid, but I’m not optimistic. I’m swinging between nights of brutal insomnia and days of complete exhaustion. Today I came home from work and fell asleep at 5. Not how I wanted to spend my evening.
So what’s next, you ask? More tests, and once a recurrence is confirmed, then the Good Doctor and I will discuss a plan. My instinct tells me there’s not much to be gained from a second pituitary surgery. Seems like very few people get a cure from a second surgery, even when they have a clear and obvious target, something I didn’t have much of the first time.
My best guess right now is a period of months will be spent on a drug called ketoconazole, and then likely a bilateral adrenalectomy (BLA). I guess in a perfect world I’d have a BLA without spending a lot of time on keto, but surgery requires time off work and I don’t want to do that without a decent amount of money saved up. Fortunately my job is really low key and I’m pretty sure I could go back to work with only a month off after a BLA. No stress doing document review!
So that’s the Earl update. Sorry to disappoint you all. Believe me, no one is more disappointed than me!
I was finishing my midnight serum tests for Cushing’s. If these tests were high, I was going to be cleared for surgery. What a difference a year makes.
I know I haven’t posted much lately. I felt like there wasn’t anything to report. People have tried to point out that this assertion is not true, but I also just didn’t feel much like writing. But here I am, 10 months post-op, and I thought I should update.
I’m not 100% yet, by any stretch. My thyroid has had to be tweaked a few times, and I’ve also had to change when I take my thyroid meds (from morning to night). I have pretty frequent aches and pains in my legs, the doc says it’s inflammation and I should consider seeing a rheumatologist. I have no desire to see another specialist, so I’m putting it off for now. It’s not unmanageable.
I went back to work at the beginning of June. It’s definitely been a struggle to adjust. It’s just very tiring to be up and at them all day, and add to that a nasty commute. I usually come home on Friday and collapse on the couch for several hours, and try to spend some of Saturday and Sunday resting. But the fact that I don’t need a nap most days (although sometimes I do lie down in the dark for 5 minutes to refresh myself mid-day), and I’m able to go from 6 am to 10 pm is a real accomplishment.
I count myself fortunate to have seen no signs of a recurrence. I know this may not last forever (but I hope it will), so I’m trying to enjoy it while it lasts.
Dear Earl,
It wasn’t fun. Don’t come back.
Love, Me.
___________________________________
On that note, here is today’s good news: the six month labs are in and things look pretty dang good! I’m really feeling like I am back, and Earl is gone!
First things first: weight loss – down 21 pounds last Saturday!!!!!!!!!!!!!!!!!!!!!!!!!!
Second: the labs.
Cortisol – 18 (range 8-19)
ACTH – 18 (range 6-48) *** This was mishandled so it’s a meaningless number. It’s artificially low.
Thyroid – Dr. Smart started treating my thyroid with 125 mcg of Levoxyl after my 4 month labs showed very low normal Free T4. Turns out, 125 mcg is too much probably since this month’s labs show my thyroid as being too well treated. 
That’s ok. He’ll adjust it next time we talk.
Free T3: 4.3 (January: 2.9) (range 2.3-4.2)
Free T4: 2.22 (January: 0.96) (range .86-1.76)
Still more good news on the testosterone and insulin fronts…
Bioavailable Testosterone: 7.4 (January: 14; October: 13) (range 1.1-14.3)
SHBG: 54 (January: 31; October: 20) (range 40-120)
Insulin: 19.8 (January: 25.2, October: 35.4) (range 0 – 24.9)
See how much those numbers have changed since surgery?!?! This is very exciting!
So, in sum, I really couldn’t be happier with those results. Normal insulin and testosterone means things like my skin is clearing up, and my hump is (slowly) going away. I still have stretch marks, probably always will, but they aren’t purple.
I’m still on 5 mg hydro, but I’m going to try to get weaned completely by my birthday. My numbers are well within normal, so there’s no real reason to stay on it. On the other hand, I’m not averse to staying on it. It would mean I was not producing enough cortisol on my own and that would be a good thing in my book!
Yes, you read that correctly, the ER. That is where I spent last Tuesday morning. Let’s hope it’s not to be repeated anytime soon. Possibly ever.
You don’t really want to know the gory details. Let’s just leave it at a massive hormonal shift, possible adrenal insufficiency the day before, and being sent home (to my grandmother’s, since I was in California) with Vicodin and Zofran. And relying on those to got me through the next couple of days, where I finally arrived home and collapsed into bed for the better part of the weekend. I’m now starting to recover, but I still don’t feel anywhere near as good as before the ER visit.
Talked to the Good Doctor tonight, and he added a few tests on to next week’s 6 month lab work, to see where I’m at based on last week’s ER adventures. Also wants me to add a little hydro to my daily dose for a week or so, and then try to wean down again. We shall see.
So that’s this week’s update. Stay tuned for more adventures in life without Earl.
You know how on Groundhog’s Day the groundhog allegedly sees his shadow or doesn’t and it means more or less winter (I’m never really sure which is which and it doesn’t really matter), well, my post-Earl life is a little bit like that. Every month of tests is another round of “Is Earl really gone?” So far, the word is he is…. And because of that, I feel like there hasn’t been much to report. But some people disagree with me.
Actually February is a no test month. First time since surgery I haven’t had any blood drawn for any reason. I needed a break. I guess I didn’t have it drawn in December either, since my 3 month draw was at the end of November and then my 4 month draw at the beginning of January. Anyhow, January’s labs came back in mostly good places and I had a good chat with The Good Doctor about them.
My 8 am cortisol and ACTH are still normal, albeit high normal. That may be because I’m not fully weaned of my hydro yet, and also my thyroid has been sort of sputtering along. A properly functioning thyroid helps regulate cortisol production. My Free T4 numbers were at the lowest end of normal, so he went ahead and prescribed some thyroid meds to try to get things back into range.
My insulin is almost normal again, and I’ve lost almost 13 lbs. Doc was very happy about that. My SHBG is still below normal, but had doubled since my 2 month check, which is a good sign. Because it’s low, my testosterone is high. These numbers point to everyone’s favorite syndrome “Polycystic Ovarian Syndrome.” Normally he scrips metformin for that but I can’t take that stuff. It causes gastro-intestinal distress. He decided to give it a couple more months and if it hasn’t normalized on it’s own by my 6 month check in March, he said he’ll prescribe something else. I’m like a walking medicine cabinet.
He does want me to wean off my hydro, but I haven’t had a chance. There’s too much going on in my life. It takes several weeks to adjust to the thyroid meds and then I was travelling. Since I am still not at home, I’m not going to wean until I have a more regular schedule. I honestly feel like I still need it most days. Yesterday I even took a tiny bit more than usual because I was so worn out. Hopefully in the next week or two I can start to wean. As usual, everything in my life is somewhat up in the air.
That’s really everything there is to report right now. Like I said, I’m down almost 13 lbs. I’m exercising several times a week now, and sleeping pretty normally (as normally as one who does not have a set schedule can sleep). I don’t need a nap every day and I almost feel like (a fatter version) of myself again. It’s a good feeling. Let’s hope it lasts.
Coming soon…why we don’t use the word “cure” with Cushing’s. Maybe even in the next couple days, depending on how I’m feeling about sitting down and writing a dissertation on the subject.
The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:
The Blog-Health-o-Meter™ reads This blog is on fire!.
Did you see that? “On fire!” Thanks for all the love!
A helper monkey made this abstract painting, inspired by your stats.
A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 3,100 times in 2010. That’s about 7 full 747s.
In 2010, there were 54 new posts, not bad for the first year!
The busiest day of the year was July 28th with 129 views. The most popular post that day was Earl v. The Cure.
The top referring sites in 2010 were facebook.com, cushings.invisionzone.com, ow.ly, mail.yahoo.com, and mybattlewithcushings.com.
Some visitors came searching, mostly for sarah versus earl, two months post op still tired?, sarah and earl cushings, and is uc davis a good place to have pituitary surgery.
These are the posts and pages that got the most views in 2010.
Earl v. The Cure July 2010
2 comments
The Night Before… September 2010
2 comments
Sorry for the delay September 2010
2 comments
About February 2010
The 48 Hour Death Match March 2010
My mom asked if I was making any New Year’s Resolutions. Normally I make a few and they sort of fall by the wayside, so I said I wasn’t making any besides “Get rid of Cushing’s and stay rid of it.” But I’m amending that to include “practice a little more self-love.”
First, an update. I’ve been at 5 mg hydro for a month. This has been the hardest dose to adjust to, for me. I don’t know if I can go lower without being exhausted and non-functional all the time. I had planned to try to reduce my dose now that it’s past the holidays, but I actually had to increase my dose to 7.5 mg for most of my trip to FL, and then wean back down to 5 mg. And now it looks like I’m going to be driving to FL and back next week to retrieve my sister and her belongings, so I’ll probably be on the higher dose again for that week. So I don’t know if I’m going to wean at all. I have an appointment with the Good Doctor towards the end of January. I’ll ask him what he thinks.
The good news is that I’m continuing to lose weight. I’m down 6.4 lbs, and that includes those two weeks of Christmas and New Year’s which are the hardest weeks of the year to lose weight, IMO. I failed to track at all for the week between Christmas and New Year’s, and there was ice cream and dessert on multiple occasions that week. So, to still be down a little at the end of it was very encouraging.
So, onto my New Year’s resolution of loving my self a little more. I was talking to a friend about her New Year’s resolution to love herself a little more, and we agreed that everyone can probably make this a New Year’s resolution. I mean, who amongst us wakes up every day and spends all day thinking how awesome they are, and how they wouldn’t change a thing about their lives? Not very many people. We hypothesized than even Angelina Jolie probably has a little self-loathing. We think that loving yourself is the first step to making better choices and getting what you want. But it’s a process and I don’t doubt I’ll have days where I think I don’t deserve good things or that I’ll make a bad choice because I don’t put myself first. It’s a journey, right?
In other news, I’ve become a bit of a Cushing’s advocate at the Weight Watchers message boards. I have my suspicions that there may be a few undiagnosed Cushies over there and want to share my experience. Maybe one or two of them will see my story and end up getting diagnosed themselves, instead of suffering needlessly and wondering what the heck they are doing wrong!
Happy New Year!
So I lost slightly over 3 lbs this week at Weight Watchers, which, in and of itself, should be encouraging. But history tells me that I’ve lost those 3 lbs and that is all when I was really fighting my weight and not at all sure what was going on. I lost those 3 lbs one week and then gained them all back and more in very short time. While exercising. It was rough. So that is not the real reason I’m feeling more optimistic lately, although it is slight encouragement.
No, the real reason is that for the last several days, I have finally felt like “myself” again. I’m not sleeping during the day, I’m sleeping all night, my mood is good. I’ve weaned to 5 mg hydro a day, all in the morning. I’m able to be out and about during the day, without coming home so wiped I can’t function. Even during the holiday shopping season when I would normally probably consider shooting someone. I’m walking the dogs every night. And the best news yet is that last Friday I spaced and forgot my hydro completely. Fortunately, no adrenal crisis ensued but I noticed that afternoon and evening I felt really beat, and when I went to take my nighttime pills (vitamins and supplements), I realized why. I took my regular dose the next day and I am still noticing the effects of forgetting one day’s worth of hydro, three days later.
I was thinking about weaning completely this month, but I may not be able to if Friday is any indication. I’d be very happy with that. Honestly, I’d rather take 5 mg of hydro every day for the rest of my life than have another surgery!
That’s the current state of affairs. Keep your fingers crossed this means what I think it means (and that I can get some thyroid meds, because I’m pretty sure I’m hypothyroid now and while those symptoms don’t compare to Cushing’s symptoms, I want to be the picture of health, not some half-assed excuse for it).
