r/acromegaly

Hi everyone I have been monitoring a pituitary tumor for almost 3 years now. I recieved my first igf-1 test last year in august and it was a 389. Fast forward now and I had it redone in April and it rose to a 498. My endocrinologist sent me for a glucose suppression test and my results came back as following in the image attached. She told me to seek a second opinion before going to see a neurosurgeon. Are these scores plus everything else enough to just go straight to a neurosurgeon, or do you guys think they're not indicative of acromegaly? I'm really hoping to avoid surgery if possible and try medications. Feel free to share any personal experiences in the comments or any advice.

edit: i also have high cortisol, and high ACTH.

I am in the process of having acromegaly ruled out. 3 years ago I lost 45 pounds rapidly. I got a feeding tube placed and couldn’t gain weight no matter what the doctors tried even with TPN. About a year after the weight loss I started sweating a lot. This was especially odd because I never sweat even in the middle of summer I wouldn’t have a drop of sweat on me. And then I started getting more tired. Fast forward to a year ago and I randomly gained 65 pounds in a week and now I can’t lose it. I sweat non stop. Like if I’m mopping my apartment and I have the ac set to 60 I will still have sweat pouring off me. It’s constant. There are days I sleep over 20 hours straight and I’m still tired. I have had every test under the sun done but recently a doctor mentioned endocrine or hormone issues as a possibility. I made an appointment with a hormone specialist and they ordered endocrine and hormone testing. After looking into it further I really felt like I could have an endocrine issue so I made a virtual appointment with one and they mentioned acromegaly. I feel like that could be what I have. I also developed random sleep apnea and I’ve never snored before. The sleep specialist was stumped as well because they said I don’t weigh enough to get that. I think I have most of the symptoms. I will list them at the end but one of the main things I’ve been saying for the past 2 years is - “I can’t explain but I look so different now” and even my boyfriend and family agree. The reason I’m stumped is because some of my endocrine tests came back and my cortisol and acth are very mildly elevated. My PCP said that rules out acromegaly. Has anyone else had that experience? Whatever is wrong with me is ruining my life. I am too fatigued to do my favorite activities and I’ve randomly fallen asleep at work so now I have to work from home but now I really fall asleep. I’ll sleep for 4 hours straight during the day without waking up a single time and if I don’t nap everyday I can barely function. The sweating has gotten so bad random people have stopped me in public to ask if I’m ok. I wake up drenched in the middle of the night it’s just awful. My IGF-1 should be back next week before the holiday. Here are my symptoms:

-rapid unexplained weight gain (I eat 500 to 1000 calories a day)
-excessive worsening sweating
-severe fatigue
-features look different
-brain fog
-hyperpigmentation
-irregular periods
-unexplained thickened uterine lining
-random development of sleep apnea that can’t be explained by weight and I’ve never snored before
-swelling in hands and feet
-enlarged liver and spleen
-constant abdominal distention (I always look 9 months pregnant)
-smaller sinuses. When I cry I can’t breathe and all the phlegm is stuck in my sinuses if that makes sense.

Thank you!!

The constipation gets better after treatment, right?

Glucose Supression Test + Was advised to seek second opinion

Elevated ACTH and Cortisol?

Hair shedding?

Transsphenoidal surgery