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Could be feeling better...

SadisticPeppers

Business Member
I've been debating whether or not to post something about this on here for a couple weeks now, since I'm not big on sharing personal health struggles, but I figured it's as good a time as any. I haven't been feeling 100% for a few months now. Pursuing the job promotion helped me take my mind off it big time, and would have made my day if I had gotten the promotion, but it's pretty obvious now that they went in another direction. I've also been trying to help my mom through the passing of her beloved 17-year old dog this weekend, who hasn't been doing well recently, as well as doing my best to prepare my garden for the next set of superhots I want to grow.
 
A couple weeks ago, a doctor friend where I work had a "House" moment when she looked at me, asking me to come into her office for a moment. She said she was worried about me and that I was displaying some of the tell-tale symptoms of something called Cushing's Disease. I had never heard of it, and she told me that in essence, a noncancerous, slow-growing tumor, either in the pituitary or the adrenal glands, chronically pumps corticosteroids into the blood, causing a list of symptoms and issues almost as long as The Lord of the Rings, and some of these symptoms are diseases in their own right, but Cushing's is so rare (the incidence is only 2-3 cases per million people) that most doctors don't know to look for it, and the symptoms are literally all over the medical map. She and I discussed it at length, and we went through the list of issues Cushing's symptoms. Here's the list of things I've had over the years that she suspects were due to Cushing's:
 
  • rapid weight gain and difficulty losing weight/keeping it off
  • periodic, intense hunger, even after eating a filling meal, or snacking throughout the day without realizing it
  • high blood pressure
  • high cholesterol
  • headaches/migraines (including ocular migraines)
  • poor short-term memory
  • irritability
  • sudden, inexplicable bursts/feelings of anger that disapate just as quickly
  • anxiety
  • depression
  • other mental/emotional issues
  • intermittent blurry vision
  • balance issues/difficulties with feelings of vertigo
  • excess patchy hair growth on body
  • balding/thinning hair on head (mainly near my temples and on the very top of my head)
  • Impaired immunological function, leading to more frequent flu's & colds and especially recurring skin infections
  • red, ruddy "moon face" with splotchy red markings on forehead, nose, and cheeks
  • extra fat deposits around neck/chin
  • intermittent heart palpitations or pounding heartbeat, even when not physically active such as sitting or lying down
  • "buffalo hump" (fat deposit on back between shoulderblades and neck)
  • characteristic "beer belly" with normal to thin arms and legs
  • overwhelming intermittent fatigue
  • poor concentration and difficulty thinking
  • insomnia (I frequently wake up 2-3 times a night and feel restless)
  • frequent urination, sometimes as much as 2-3 times an hour, as well as the frequent desire to urinate even when nothing comes out
  • hyperkalemia (high calcium levels in blood)
  • low potassium and magnesium levels in blood
  • high sodium level due to salt retention
  • hormonal imbalance, especially thyroid hormones, testosterone, estrodial, progesterone and other hormones being completely out of whack
  • thin skin and purple striae (stretch marks)
  • easy bruising
  • slow cut and bruise healing
  • muscle pain and soreness, especially in major muscles such as pectorals, biceps/triceps and quadriceps
  • acne (especially on my body and upper arms)
  • hip and shoulder joint weakness
  • joint stiffness, soreness and pain, especially major joints, such as knees, hips and back
  • periodic soreness in the groin and the feeling like I had been reauchambeau'd 
  • persistent itch that migrates to a random part of the body
  • strong muscle twitches, or the feeling of having received an electrical shock in a major muscle
  • muscle cramps
 
Of the list of symptoms she rattled off, the only three I didn't have or was never diagnosed with was Type II Diabetes, Osteoporosis, and kidney stones. She said she only knew what to look for because she studied it extensively in med school. She asked me whether I had ever been prescribed steroids or was taking them for any length of time, and I never did, which was good, since that could temporarily induce a form of Cushing's but since I've never taken steroids of any kind, that was a relief.
 
She gave me the number to a colleague of her's with a private practice near where I lived who specializes doing tests for rare/uncommon diseases. Because my coworker and I were already friends, and given where I work (doing IT work for the VA hospitals) and the fact I'm not a veteran, it would've been inappropriate for her to have me tested for Cushing's through my job. I made the appointment for January 11th, which the earliest her colleague could fit me in considering it's the holiday season. Thankfully, this specialist takes my health insurance, so the tests won't cost an arm and a leg, and like I said, she specializes in doing tests for diseases that are very uncommon, and has a reputation for getting to the bottom of things, and finding issues many other doctors would overlook or dismiss, so even if it's not Cushing's, she can get to the bottom of things.
 
If the specialist confirms I have it, the next step would be to get a high-res MRI done of my pituitary and adrenal glands to see which of these two is the culprit. After that, it's a matter of performing surgery to remove the tumor, or if it's sufficiently bad, remove the gland(s) completely.
 
I also discussed this with my mom prior to her dog passing away, and being a doctor herself, she concurs that looking back, Cushing's makes the most sense considering the health issues I've had over the years, and the fact that they simply won't go away on their own. And my mom conceded that it's likely the disease first presented when I hit puberty around 12 years old. I very quickly went from a small, underweight kid to an overweight kid seemingly in no time, and didn't grow as tall as I should have. My mom, who was coming down to Florida anyway in December for Christmas, will be coming to the the appointment with the specialist to help with providing a more complete history. And if the disease is confirmed and I have to have the surgery, I'd need someone here to make sure I don't overdo things.
 
Thanks! I'm hoping to figure out either way what's going on, and the specialist comes highly recommended as someone who gets to the bottom of medical issues most other doctors miss...
 
Wow man. Hope they figure out what it is and that everything works out for you and you get to feeling better. If it is Cushings hope they can fix it without going to extremes.
 
Hope so as well, since I've had a number of the issues going way back, and I hate having to nickel & dime treating the symptoms. But yeah, treating Cushing's if it's confirmed, can only be done via surgery. The doc did warn me that if my corticosteroid levels were too high for too long, I may experience some withdrawal symptoms for a bit
 
Thanks all. If the specialist confirms I have it, I'll feel more relieved than anything, since it'd answer a lot of questions, and fix a lot of aggravation, since I've been dealing with some of the things like migraines and other things for a very long time, and if Cushing's is the cause of it all, it'll be nice to get rid of it. Plus, from doing some research online, and reading the stories of people who've had it and gotten the surgery to fix it, one nice side effect is that almost all of them lost 25-30 pounds right off the bat and progressively lost more weight in the following months, which would be good for me, since I've been trying (and failing miserably) to lose weight for the longest time now, and previous doctors said I could stand to lose a bit.
 
Quick update: The first round of blood tests are done. The doctor wanted to rule things out first before moving on to Cushing's. The only issue blood test-wise was that my cholesterol was high, which wasn't a surprise since I know I have the genetic predisposition for high cholesterol, as well as low vitamin B-12 and D-3 levels. Oddly enough, for my cholesterol, only my LDL's were high, but my triglycerides were a mundane 113, which is lower than my brother in law, who's had to take meds to get down to under 200. Beyond that, she said my initial blood work was great, and I, in fact, have a somewhat reduced risk for Type II Diabetes, despite everything going on, and the fact that I sometimes drink soda like a fish in water as well as everything else sugary. She also had my thyroid tested, which came back squeaky clean as well. And the EKG results, in her words, was remarkable in that it was "utterly unremarkable".
 
I also began the 2nd round of tests began today, and involved Cushing's specific tests. I got blood drawn for cortisol, ACTH, and some other things, and I also got a special container in which I have to gather a day's worth of my pee for a 24-hour urine cortisol test. And Sunday, I've got to take a deximethisone suppressant at 11PM to stress my pituitary and adrenal glands, then get my blood drawn at the ass-crack of dawn to check how they did. If the tests are positive, then it's on to the MRI and CT scans to see what's happening and where, and move on to either surgery or radation. If the tests are negative, then we'll move on and see what else is going on.
 
Omg - so sorry to hear. That's a litany of symptoms!

I was checking some off myself but then remembered that I'm an irritable bastard who drinks beer, so the irritability and beer belly are probably not red flags for me.

Sorry - just hoping to give you a laugh, not make light of your condition.

I'll keep my fingers crossed that it's so rare that it's not what ails you. Keep us posted!
 
Sending best wishes your way,  sounds like a convoluted journey to get it all sorted out. 
 
SL
 
Lucky Dog Hot Sauce said:
Omg - so sorry to hear. That's a litany of symptoms!

I was checking some off myself but then remembered that I'm an irritable bastard who drinks beer, so the irritability and beer belly are probably not red flags for me.

Sorry - just hoping to give you a laugh, not make light of your condition.

I'll keep my fingers crossed that it's so rare that it's not what ails you. Keep us posted!
 
Totally OK, LuckyDog, as a mater of fact, my doctor told me that laughing is something that reduced cortisol levels, so you were helping me out actually lol
 
 
salsalady said:
Sending best wishes your way,  sounds like a convoluted journey to get it all sorted out. 
 
SL
 
Thanks SL. The results I got so far are encouraging, so I'm sticking with the good stuff.
 
sicman said:
Heal strong my friend.
 
 
Thanks! I just brought a couple more bits of lab work in (one being a 24 hour sample of urine to test how much cortisol I produce over a day, and I also have to go at the buttcrack of dawn Monday to get blood drawn for the suppression test, which involves popping a pill at 11 PM the previous night to see how much cortisol is supressed by the pill.
 
Had a follow-up with the doctor today, and she said she had a chicken-and-the-egg problem, the one I alluded to in the Gear Grinding thread. She's a bit stuck because she's only seeing half the picture with my bloodwork, and wants to hold off on doing further treatment until she gets the rest of the bloodwork back. The one test she got back from the 2nd round stroingly point to Cushing's disease, but she's having me redo the test, mostly just to confirm the findings and be thorough. The other tests she ordered will be able to show her where the high Cortisol levels are coming from, whether the cortisol producing tumor is in my pituitary or in my adrenals. She's also holding off on giving me meds for my cholesterol, since she feels that I do in fact Cushing's and it's treated, my cholesterol numbers will improve drastically, as will my high BP, and issues with B-12 Iron, D, and ferretin.
 
Figured an update was in order.
 
My doc did some more testing and found my epinephrine levels were also a bit on the high side, and I seemed to have something of a sensitivity to it. She decided to take the cautious approach and put me on a combination of Zoloft 100mg and Bystolic 5mg. Almost immediately after I began taking the medications, I started feeling a million times better. My doc ordered one more set of blood tests after I started the medications, which came back in time for my latest follow up this past Thursday. She said my cortisol and epinephrine levels both went back to well within normal levels, since Bystolic especially works as a beta blocker to both block and break down epinephrine in the system, and is a great anti-anxiety medication to boot (athletes, actors, and others use it to calm nerves and reduce anxiety). And besides being a very good anti-anxiety med, Zoloft is also an alpha blocker that has some effect on the adrenals and lowers cortisol levels in the blood. The worst side effects I've noticed thus far (been on the medication for three weeks now), is that my hands get kinda clammy after a while and around 9-10 PM, I get really sleepy, which isn't actually a bad thing, given the amount of trouble I've had with going to an staying asleep. I had to be careful for a week or two and avoid alcohol, which wasn't a problem since I really don't drink all that often.
 
Besides that, she was also thoroughly impressed that my resting heart rate plummeted from 94 to 48-50 and my blood pressure shot down from 165/110 to 115/65. Since I responded so amazingly well to the medication, she decided to keep me on the medication for as long as I needed and to avoid any kind of surgery, and to see me again in three months after sending in a 90-day refill of both prescriptions.
 
I'm glad zoloft is having a positive effect for you, personally it was one of the worst health choices i've made. My doctor prescribed it to me for anxiety attacks I was having. 
 
It made me constantly feel like i was in a dream world. Made driving hard, after taking it for a while I couldn't be even moderately late taking (after 10am) it or get extremely sick. Very bad migraines. I couldn't have alcohol while on it. Even one drink would give me the worlds worst headache to the point I'd blow my brains out if I owned a gun. I was on it for a year or two before I weened myself off. 
 
The first few days I was on it seemed like my moods improved. I have borderline personality disorder and social anxiety. It helped with that initially but eventually they became worse. 
 
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