Wednesday, April 8, 2015
Tuesday, April 7, 2015
Pituitary MRI -Review
I was PM'd today on Facebook by someone asking questions about the MRI's. So, I figured I'd revisit some pituitary MRI info in today's post since I've pretty much already typed it all up!
Pituitary MRI's (Magnetic Resonance Imaging) for Cushing's Disease are almost universally ordered as 3T Dynamic MRI's now. They are basically super-finely sliced pictures of your pituitary (and brain, etc), quite different from a standard brain MRI. The 3T is the strength of the MRI machine (It's magnet -3 Teslas). Dynamic refers to the protocol's contrast dye timing. They will do the full MRI scan, then inject dye through an IV and scan AS it is going into your body, then a bit more after the dye is fully injected. This is usually accomplished by either an infusion machine that can be triggered or set to inject while the technician starts the MRI scan, or it can be done with a second technician helping briefly and a countdown between the person pushing the injection and the person starting the MRI scan to be sure they time it just right.
As these are often tiny tumors, roughly half the size of a pencil eraser, and usually only visible (or more obvious) during the dynamic portion of the scan, when the dye is being absorbed by the pituitary tissues, reading these MRI's is usually more of an art than a science. The tumor tissues do absorb the dye, they just don't absorb the dye as quickly as the rest of the pituitary. So, if the MRI tech injects the medication, walks to the other room, sits down, then starts the scan, it might never show a tumor even if one is present. It takes someone with a lot of pituitary-specific experience to be able to see them. Most radiologists miss these tiny slightly-darker dots, but some well-Cushing's-experienced Endocrinologists and Neurosurgeons can see them readily.
The longest part is the beginning, before the dye is injected. It takes maybe 45-60 minutes, depending. It is a good idea to get yourself as comfortable as possible before you start (back/leg support if needed) because you won't be able to move for a decent amount of time. Make sure you also get copies of your MRI disc for your records and if you are traveling to the neurosurgeon of your choice, they'll want a copy for their records too.
Pituitary MRI's (Magnetic Resonance Imaging) for Cushing's Disease are almost universally ordered as 3T Dynamic MRI's now. They are basically super-finely sliced pictures of your pituitary (and brain, etc), quite different from a standard brain MRI. The 3T is the strength of the MRI machine (It's magnet -3 Teslas). Dynamic refers to the protocol's contrast dye timing. They will do the full MRI scan, then inject dye through an IV and scan AS it is going into your body, then a bit more after the dye is fully injected. This is usually accomplished by either an infusion machine that can be triggered or set to inject while the technician starts the MRI scan, or it can be done with a second technician helping briefly and a countdown between the person pushing the injection and the person starting the MRI scan to be sure they time it just right.
As these are often tiny tumors, roughly half the size of a pencil eraser, and usually only visible (or more obvious) during the dynamic portion of the scan, when the dye is being absorbed by the pituitary tissues, reading these MRI's is usually more of an art than a science. The tumor tissues do absorb the dye, they just don't absorb the dye as quickly as the rest of the pituitary. So, if the MRI tech injects the medication, walks to the other room, sits down, then starts the scan, it might never show a tumor even if one is present. It takes someone with a lot of pituitary-specific experience to be able to see them. Most radiologists miss these tiny slightly-darker dots, but some well-Cushing's-experienced Endocrinologists and Neurosurgeons can see them readily.
The longest part is the beginning, before the dye is injected. It takes maybe 45-60 minutes, depending. It is a good idea to get yourself as comfortable as possible before you start (back/leg support if needed) because you won't be able to move for a decent amount of time. Make sure you also get copies of your MRI disc for your records and if you are traveling to the neurosurgeon of your choice, they'll want a copy for their records too.
Monday, April 6, 2015
Cushing's Jeopardy:
Cushing's Disease for 600, Alex!
What is the worst disease you've never heard of?Which illness is diagnosed through serial 24 hour urinary free cortisol tests, midnight salivary cortisol tests, midnight serum cortisol tests, 24 hour 17 hydroxycorticosteroid tests, a few adrenalcorticotropic hormone tests and a very specialized pituitary MRI?
What was called "the most morbid of diseases?"
Which condition is marked by a disruption in the diurnal rhythm (days and nights flipped)?
What illness can be debilitating and fatal if untreated?
Which disease is too rare for a patient have?
What has frequently been referred to as the ugly disease?
Which condition has a higher recurrence rate the longer you follow patients after remission?
What illness can cause stretch marks, uncontrollable weight gain, fatigue, insomnia, hair loss, infertility, acne, high blood sugar, brain fog, emotional instability, and high blood pressure?
Which type of Cushing's Syndrome is caused by tumors on the pituitary?
What disease has a common body shape of central obesity and moon facies with thinning arms and legs?
Which condition shrinks your brain due to excess stress hormone?
For what surgery do neurosurgeons enter your skull base through your nose?
What illness can cause osteoporosis, thinning skin, and muscle wasting in the young?
Which disease is found undiagnosed in 2-4% of the diabetic population?
What condition is not as rare as it is rarely diagnosed?
Sunday, April 5, 2015
Easter
Happy Easter to all! I'm not quite sure how to incorporate both the risen Lord and Cushing's Disease, except to say today is a beautiful, glorious day.
Yesterday I was overwhelmed with negative responses to something I posted online. I had already woken up feeling cold, with shaky muscles and zero appetite (all low cortisol symptoms). Since I'm on this tight-rope, I decided to see how things went and not react too early. Amazingly, my blood pressure stayed fairly stable (only dropped to 112/67) but my pulse skyrocketed to 127 and stayed there for hours. I tried to hold off taking hydrocortisone because for the most part I wasn't having other negative symptoms, and just drink more of my salty, half-strength lemonade while watching some old "the Voice" videos on hulu. It kind of worked, but only minimally.
Since increasing my GH dose back to .4/night a few days ago, I have again had some minor headaches and a kind of stiff-neck ache with tinnitus. It's worse at night/morning and when lying down. The pain actually wakes me up and feels like the pain when your neck is fully unsupported all night, even though I have a firm, foam contoured pillow giving me full support. So, I wake and roll over, adjust my pillows (because it FEELS like they're the issue) and I am back to not sleeping well enough and it being hard to get up in the morning. Blah. It eventually went away last time I increased my GH dose, but since my Endo said he thought the symptoms were of too-low cortisol and not intercranial hypertension, I decided to try a small dose of hc at bed time (2.5 mg, half of a small pill).
That 1/2 a pill did perk me up a bit, but I was able to sleep well and it really DID seem to help me sleep better and without all that pain. But the really cool thing that has happened probably all 3(or 4) times I've taken hc since being on GH? I woke up with a significant weight loss! WHAT?! At least twice now I've had that happen, not believed my eyes (or assumed my memory switched numbers from the time I got off my scale and went to write the note on my symptom-tracking card).
A little of that is water weight, but I track enough input/output to know that's not all it is. And this keeps happening, even when it's obviously not just water weight, and it's a significant amount! I know that both too high cortisol and too low can disrupt sleep. And I know both too high and too low cortisol can interfere (stop, reverse) weight loss, but...WOW! I'm so used to thinking of cortisol as the enemy, even now, and as causing my massive weight gain that it's hard to imagine it helping me lose now. I'm now at a 20lb loss, without effort. I hope we can figure out how much I need and when, or my body will start producing enough on it's own that I don't have to even worry about it, and that the loss can continue either way. I can't wait till my energy levels also increase, and I can start adding muscle mass and exercise to add to my weight loss. (Okay, I truly do care more about functionality and health rather than the "looks" side of weight loss, but lets be real...it's still nice!)
It was a great and surprising way to start my Easter morning!
Yesterday I was overwhelmed with negative responses to something I posted online. I had already woken up feeling cold, with shaky muscles and zero appetite (all low cortisol symptoms). Since I'm on this tight-rope, I decided to see how things went and not react too early. Amazingly, my blood pressure stayed fairly stable (only dropped to 112/67) but my pulse skyrocketed to 127 and stayed there for hours. I tried to hold off taking hydrocortisone because for the most part I wasn't having other negative symptoms, and just drink more of my salty, half-strength lemonade while watching some old "the Voice" videos on hulu. It kind of worked, but only minimally.
Since increasing my GH dose back to .4/night a few days ago, I have again had some minor headaches and a kind of stiff-neck ache with tinnitus. It's worse at night/morning and when lying down. The pain actually wakes me up and feels like the pain when your neck is fully unsupported all night, even though I have a firm, foam contoured pillow giving me full support. So, I wake and roll over, adjust my pillows (because it FEELS like they're the issue) and I am back to not sleeping well enough and it being hard to get up in the morning. Blah. It eventually went away last time I increased my GH dose, but since my Endo said he thought the symptoms were of too-low cortisol and not intercranial hypertension, I decided to try a small dose of hc at bed time (2.5 mg, half of a small pill).
That 1/2 a pill did perk me up a bit, but I was able to sleep well and it really DID seem to help me sleep better and without all that pain. But the really cool thing that has happened probably all 3(or 4) times I've taken hc since being on GH? I woke up with a significant weight loss! WHAT?! At least twice now I've had that happen, not believed my eyes (or assumed my memory switched numbers from the time I got off my scale and went to write the note on my symptom-tracking card).
A little of that is water weight, but I track enough input/output to know that's not all it is. And this keeps happening, even when it's obviously not just water weight, and it's a significant amount! I know that both too high cortisol and too low can disrupt sleep. And I know both too high and too low cortisol can interfere (stop, reverse) weight loss, but...WOW! I'm so used to thinking of cortisol as the enemy, even now, and as causing my massive weight gain that it's hard to imagine it helping me lose now. I'm now at a 20lb loss, without effort. I hope we can figure out how much I need and when, or my body will start producing enough on it's own that I don't have to even worry about it, and that the loss can continue either way. I can't wait till my energy levels also increase, and I can start adding muscle mass and exercise to add to my weight loss. (Okay, I truly do care more about functionality and health rather than the "looks" side of weight loss, but lets be real...it's still nice!)
It was a great and surprising way to start my Easter morning!
Saturday, April 4, 2015
Sleep
Did I tell you about my changes in sleep yet? Well, this change was almost more surprising than my change in appetite.
The high cortisol from Cushing's Disease made nighttime sleep almost impossible. It raises your cortisol level, the "fight or flight" hormone, usually at night. One of the signs of Cushing's is that it flips your diurnal rhythm, meaning your cortisol is high at night and lower during the day, the exact opposite of what it is supposed to be, so you are "wired" and awake at night and tired and sleepy during the day.
When my cortisol levels dropped last fall, I was still not sleeping well, though it was clear to me I wasn't "high" at night anymore, just having difficulty sleeping. It turned out that my body's growth hormone production was nonexistent. And guess what one of the typical symptoms of AGHD is? Difficulty sleeping and extreme, bone-crushing fatigue. My fatigue and exhaustion was actually worse at this point than with pure CD alone. When doctors and other patients saw my Growth Hormone Stim numbers (0 across the board) a common response was, "I can't believe you can get out of bed!" And that's how it felt. But even when THAT tired, I couldn't sleep well. See, hormones control sleep too.
When I started GH replacement shots, THE first night I slept soundly. I knew that was one of the first improvements to be seen, despite expert doctors in the field saying it takes 6 + months to see improvement after starting nightly injections, but it was almost too good to be true. I waited to see if it was a fluke, and sure enough, it was the real deal. But, it is STILL so surreal to me, and I've been on GH well over a month now.
What I noticed? I fell asleep that first night without remembering I had fallen asleep. Does that sound weird? It usually took me 20 minutes to 2 hours to actually get to sleep at night, and I remember the "trying" part well...laying there, thinking, trying not to think, rolling over, etc. This day? I fell asleep without any of that.
I woke up in the morning like a lightning bolt. I mean, it really wasn't THAT dramatic, but there was no slow transition from sleep to wakefulness, no half-dazed cognition, I was simply and suddenly awake. Weird! I'm guessing that's normal, but I wouldn't know since I haven't experienced it for more than a decade.
And when I woke up? I had no memory of the night I'd slept, either. Normal? I don't know? I was used to waking up to roll over in bed, waking up when my husband's alarm clock went off (and each time he hit the snooze button), when a kid went to the bathroom next door at night, etc. This time I woke up with zero memory of any of that AND I had obviously changed positions in the night. Creepy!
Those changes have continued. When I'm increasing my GH dose (and thus my cortisol drops lower), I can have some pain that keeps me up at night and reminds me of what my sleep has been like for years (too low or too high cortisol both mess up sleep), but that is short-lived. If it gets too low, I can take some replacement hc and sleep like a baby (maybe even dream!). I think I actually know what "real" sleep is supposed to be like now! It doesn't give me more energy in the day yet, but it certainly is more of an oblivion and there is more definition between awake and asleep, and that is cool and so unexpected.
The high cortisol from Cushing's Disease made nighttime sleep almost impossible. It raises your cortisol level, the "fight or flight" hormone, usually at night. One of the signs of Cushing's is that it flips your diurnal rhythm, meaning your cortisol is high at night and lower during the day, the exact opposite of what it is supposed to be, so you are "wired" and awake at night and tired and sleepy during the day.
When my cortisol levels dropped last fall, I was still not sleeping well, though it was clear to me I wasn't "high" at night anymore, just having difficulty sleeping. It turned out that my body's growth hormone production was nonexistent. And guess what one of the typical symptoms of AGHD is? Difficulty sleeping and extreme, bone-crushing fatigue. My fatigue and exhaustion was actually worse at this point than with pure CD alone. When doctors and other patients saw my Growth Hormone Stim numbers (0 across the board) a common response was, "I can't believe you can get out of bed!" And that's how it felt. But even when THAT tired, I couldn't sleep well. See, hormones control sleep too.
When I started GH replacement shots, THE first night I slept soundly. I knew that was one of the first improvements to be seen, despite expert doctors in the field saying it takes 6 + months to see improvement after starting nightly injections, but it was almost too good to be true. I waited to see if it was a fluke, and sure enough, it was the real deal. But, it is STILL so surreal to me, and I've been on GH well over a month now.
What I noticed? I fell asleep that first night without remembering I had fallen asleep. Does that sound weird? It usually took me 20 minutes to 2 hours to actually get to sleep at night, and I remember the "trying" part well...laying there, thinking, trying not to think, rolling over, etc. This day? I fell asleep without any of that.
I woke up in the morning like a lightning bolt. I mean, it really wasn't THAT dramatic, but there was no slow transition from sleep to wakefulness, no half-dazed cognition, I was simply and suddenly awake. Weird! I'm guessing that's normal, but I wouldn't know since I haven't experienced it for more than a decade.
And when I woke up? I had no memory of the night I'd slept, either. Normal? I don't know? I was used to waking up to roll over in bed, waking up when my husband's alarm clock went off (and each time he hit the snooze button), when a kid went to the bathroom next door at night, etc. This time I woke up with zero memory of any of that AND I had obviously changed positions in the night. Creepy!
Those changes have continued. When I'm increasing my GH dose (and thus my cortisol drops lower), I can have some pain that keeps me up at night and reminds me of what my sleep has been like for years (too low or too high cortisol both mess up sleep), but that is short-lived. If it gets too low, I can take some replacement hc and sleep like a baby (maybe even dream!). I think I actually know what "real" sleep is supposed to be like now! It doesn't give me more energy in the day yet, but it certainly is more of an oblivion and there is more definition between awake and asleep, and that is cool and so unexpected.
Friday, April 3, 2015
Appetite
Well, there are some things that have changed since my high cortisol appears to have gone away that are almost hard to fathom for me. I didn't think I had an excessive amount of hunger before, and I certainly didn't eat an unreasonable amount, but now that I have almost no appetite it just floors me what a difference cortisol makes.
I've lost approximately 15lbs in 3 months simply because the cortisol is gone and I've lost my appetite. I do deal with some food aversions and even anorexia (not that I will myself not to eat but that I have no appetite and have to mentally remind myself to eat more than one meal a day for my health's sake). And, that 15lb loss was WHILE just as immobile as before (worse than pre-op, even thanks to the AGHD's added exhaustion) and I still enjoy chocolate.
In fact, I crave salty, fatty cheese (melted only) in various forms and do eat it. And I crave chocolate, and allow myself to eat that too. When everything you enjoy doing is taken away from you, you have to keep something. I know food isn't the best choice, but right now I am okay with it. I only eat an enchilada, quesadilla, or some pizza a few meals in a month, and I figure that's not too bad. I probably eat chocolate most days, though I have lost all desire to eat desserts so figure that's not a horrible trade-off either.
But the appetite change is just unreal. I have no desire to eat till around 3pm, when I start to feel physically ill (probably my liver trying to compensate for the drop in blood sugar --something I am trying to avoid now that I recognize it's a problem) from not eating. I used to eat much larger portions, and Britton will dish up my food like usual and I have to send it back with him largely uneaten...he's figuring it out. The other night he made hamburgers (small ones, even) and I couldn't finish mine. I probably could have easily eaten two of those with sides before, or at least a large burger (like you'd get at a restaurant) with a side or two. On my birthday a couple weeks ago, Britton ordered in from a restaurant. A meal I used to be able to eat was suddenly the bulk of my food intake for two days' time. Crazy!
I have a medication I have to take at bed time (Heh, both this and my GH are bedtime-meds...funny, and I'm only taking Vitamin D otherwise at the moment) and it requires I take it with food. I try for something along the lines of a fat or protein, but most nights I can no longer snack late like I used to. I used to eat my 3rd meal around 11pm, because I was wide awake and fully hungry then (thanks, cortisol!). Now the best I can manage is a cup of milk or a few thin slices of planed cheese so that my stomach isn't empty.
I can't WAIT to see how things might be when I am able to be physically active and to actually cook/prepare my own meals again, if this is what simply lowering my cortisol level is doing.
I've lost approximately 15lbs in 3 months simply because the cortisol is gone and I've lost my appetite. I do deal with some food aversions and even anorexia (not that I will myself not to eat but that I have no appetite and have to mentally remind myself to eat more than one meal a day for my health's sake). And, that 15lb loss was WHILE just as immobile as before (worse than pre-op, even thanks to the AGHD's added exhaustion) and I still enjoy chocolate.
In fact, I crave salty, fatty cheese (melted only) in various forms and do eat it. And I crave chocolate, and allow myself to eat that too. When everything you enjoy doing is taken away from you, you have to keep something. I know food isn't the best choice, but right now I am okay with it. I only eat an enchilada, quesadilla, or some pizza a few meals in a month, and I figure that's not too bad. I probably eat chocolate most days, though I have lost all desire to eat desserts so figure that's not a horrible trade-off either.
But the appetite change is just unreal. I have no desire to eat till around 3pm, when I start to feel physically ill (probably my liver trying to compensate for the drop in blood sugar --something I am trying to avoid now that I recognize it's a problem) from not eating. I used to eat much larger portions, and Britton will dish up my food like usual and I have to send it back with him largely uneaten...he's figuring it out. The other night he made hamburgers (small ones, even) and I couldn't finish mine. I probably could have easily eaten two of those with sides before, or at least a large burger (like you'd get at a restaurant) with a side or two. On my birthday a couple weeks ago, Britton ordered in from a restaurant. A meal I used to be able to eat was suddenly the bulk of my food intake for two days' time. Crazy!
I have a medication I have to take at bed time (Heh, both this and my GH are bedtime-meds...funny, and I'm only taking Vitamin D otherwise at the moment) and it requires I take it with food. I try for something along the lines of a fat or protein, but most nights I can no longer snack late like I used to. I used to eat my 3rd meal around 11pm, because I was wide awake and fully hungry then (thanks, cortisol!). Now the best I can manage is a cup of milk or a few thin slices of planed cheese so that my stomach isn't empty.
I can't WAIT to see how things might be when I am able to be physically active and to actually cook/prepare my own meals again, if this is what simply lowering my cortisol level is doing.
Thursday, April 2, 2015
A Big, Fat Target
Last fall I wrote the monologue "A Big, Fat Target" based loosely off of a past blog post. After many revisions (and with the help of some friends), it was performed readers-theater-style by Elizabeth Nelson of First City Players in February of 2015. I'm so grateful for all who helped, and especially Elizabeth for adding her unique style to make it come to life. Enjoy!
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