u/JLANeeNee

#2

Thank you for offering to be a resource in a medical/traumatic event with limited answers and resources.

—beatbi found aside from Monet products (pricey and trying to cut
back) is Verb.

looks great!

um, oops! I do have cushings disease and am actually not doing great, but i also have tenants that left stains on table! lol. so sorry i crossed topics.

hilarious!

i’m currently trying Isturisa medication because have had 2 surgeries for secreting pirate adenoma 2O07 and 2025. Just had labs and my AM cortisol with the cortisol suppressing medication was 18.8.

can’t get mine to rise that high?

should say weaning from steroids. spell check

wow. Just today i was thinking, what is wrong with me? I’ve had cushings for a long time. Had surgery in 2007 and after 3 years of recovery and warning from steroids, i had significant residual damage from it being diagnosed for years, but was better. Then the tumor grew back and had a 2nd surgery this year that was unsuccessful. Still producing too much cortisol. dr has me on Itsurisa to block cortisol production, a band aide and not a cure. Going to have another MRI in Nov with consult with neuro surgeon and oncology radiation surgeon. However, while i have always strived to pull my spirits up and live life the best i can, right now i feel like i don’t have that reserve of inner strength i could always tap into. wondered if it was the new meds? Sounds like some of you are suffering from the same depression even though we should be feeling better. It’s normal for me to take a week or so “to pull myself up by the bootstraps” after a set back, but this feels like I can’t quite get there. 🤷🏼‍♀️🥹

The proofing and fermentation that finally is working for me is Mix rye starter with bread flour, water and salt until shaggy dough forms. Rest it for 30 minutes. Dough on counter with only water for sticking. Tuck wet side to itself about 12-13 folds. cover with towel for 2 hours. Dump out again sticky side up. Fold onto itself about 5 times. Cover with towel 2 hrs. Dump out again sticky side up and preshape making sure i have a smooth ball with no tears. cover on counter rest for 30 minutes. Do final shape and put in benetton basket seam side up. stitch together. Put in refrigerator uncovered overnight. Put in 475 preheated dutch oven with couple ice cubes and spray loaf a bit. Put pizza stone in bottom of oven with boiling water that’s been preheating too. Reduce heat to 450 lid on 20 minutes and 20 + or - uncovered, checking temperature of bread that it’s about 205 degrees (first ones were gummy because i needed 2 or 3 minutes more bake. ) Hope this makes sense. Bake with Jack on utube.

My MRI showed the contrast adenoma and was very apparent to the radiologist oncologist. Mine is a ACTH secreting adenoma. I fortunately, even though i had an excellent surgeon with a top reputation and he got all of the tumor plus did more surgical clean up surrounding the whole area, my Cortisol and ACTH didn’t come down which means there’s another adenoma possibly or something. I’m trying medication. Then possibly a third surgery if after a few months they can see another tumor. Then radiation. (Had first surgery 15-20 years ago but had experienced high ACTH and Cortisol numbers for the past 5+ years ago. Adenoma grew back. )

Florida

thank you. Surgery failed so now have started keroconazole. Insurance wouldn’t approve recorlev which was first choice. Time will tell…

pa. sorry that Indont know how to start my own conversation. Don’t mean to take anything away from yours.

I have been positively diagnosed that I have Cushings Disease twice. The first time was in 2007 after years of treatment with BP meds, and thyroid meds, and broken bones, all the symptoms and battles with weight, back hump, etc and I ultimately diagnosed myself after reading a Weight Watchers magazine where a woman had Cushings Syndrome Mine was pituitary adenoma cortisol secreting, Cushings Disease. Had it removed. Then about 5 or 6 years ago i and drs thought it was back but didn’t show in MRI’s. All my tests showed elevated cortisol though and all the physical symptoms returned with a vengeance. Just had second surgery and apparently they didn’t get all the tumors in there because my numbers didn’t come back down. Long story short, I’m now going to try medication as next step. Tried to get Recorlev but insurance denied after multiple appeals. so I’m starting Isturisa tomorrow. Has anyone taken that drug and how did you feel/tolerate it? Kind of nervous.

ps. oven with light only on and door closed would get up to 90 and kill my starter.

When i went to 50/50 bread floor and whole wheat, my starter started doing better. When i placed in oven with light on and door propped open with fat towel, it did better. Then i switched to rye and it’s doing even better. It took me months to get my starter strong. I made about of hockey pucks! Also, even though my kitchen thermometer i bought says 71 degrees fahrenheit and that’s a number often stated as a good temp for strong growth, it was not warm enough. Hope this helps.

Wow! congrats! took me over 6 months and I’m still not quite there.

i read to keep in cake holder and mine will last a week in that environment on the counter.

nice! i keep trying and last 2 were a little better and for the first time, one of them had the jiggly bubbley dough after bulk ferment. I’m so happy about that little bit of progress! (I’ve been doing this for months or so. 😊

What improvements have u had with ketoconazole? I have had two failed surgeries and am starting medication option. Recorlev. I have full blown Cushings Disease with all of the symptoms and side effects brought on by the disease.