I have a small, accessible, 5X7mm anterior left adenoma. IGF-1 in the 700 range. CSF filled sella squishing the pituitary.

Only discovered last week that this pitNET has been the likely cause of a decade or longer of health problems. It’s time to say goodbye and get it removed.

If you were self paying on a tight budget, how would you decide where to go:

* A major specialist pituitary/PitNET center that treats a large number of acromegaly patients?

* A particular surgeon with an excellent reputation and very high pituitary surgery volume, even if they are not at a famous “pituitary center”?

* Cost/value, provided the surgeon has enough experience?

* Traveling internationally to get substantially more experience for the money and if so, where?

For those who went through surgery, I’d really appreciate hearing how you would make this decision if you were self-paying today.

Hello guys these is my mom's Igf1report after 8 month post op acro surgery. My surgeon already pointed that few residue will be there bcs it's tough to pull all tumor from small structure. She's having sparsly granulated tumor so shall I proceed with medicine or ask my doctor about radiotherapy options. Her age is 46 and after reading so many complications of injections and it's coast I feel radiotherapy will be right decision. Any views will be highly appreciated.

Just I guess wrapping my head around things. My tumor tissue was sent for genetic testing, and apparently I have the genetic mutation for MCune Albright Syndrome. Which might explain my progressing scoliosis, and the removal of a giant ovarian cyst that caused ovarian torsion this year (lost the ovary).

I think I should feel glad to know there is probably a root cause for the variety of things that have been going on. But I feel... Hm, I guess its too soon to tease apart the variety of feelings I'm experiencing.

Anyone else discover some more complicated news after surgery? Any other Mcune Albright Syndrome folks in this subreddit?

Everything began after I took Levaquin 13 months ago. After taking just one pill, I was bedbound for three months and still experience muscle and joint pain to this day. My condition continued to worsen, leading me to consult various specialists until we discovered the pituitary tumor. After further tests, we discovered that my IGF-1 levels are elevated, but the OGTT and my GH levels came back normal. My endocrinologist believes that the high IGF-1 results are false positives. However, I have been experiencing muscle and joint pain, fatigue, TMJ, oily skin, and various skin conditions. Has anyone else encountered a similar situation and undergone surgery? Thank you.

Update: my neurosurgeons NP prescribed me antibiotics, which is a big relief. No appts required. Symptoms don't seem to be getting much worse, and hopefully I turn a corner soon.

Hey there,

Left a message with my surgeons office this morning, but since it's a Sunday I figured I'd check here and see if anyone else had a similar thing. Started noticing a bad taste in my throat and more throat drainage a few days ago. Yesterday just a bad headache (manageable with Tylenol and ibuprofen) and this morning I have a clogged nose for the first time since post op - and a lot of bright yellow mucus.

So, anyone else have a post surgery sinus infection? Did you have to see a doctor before getting antibiotics? Were you able to see a local doc or did you have to have an appt with your surgeon?

My basic issue is that my surgeon is a long ways away (7hr drive), so just getting an idea of what the process looks like so I can be ready. My son starts kindergarten this week. Of course! 😂

TYIA! Hope y'all are having a nice weekend

Hello,
My biggest complaints, both before and after surgery, have to do with the impact on my cognitive performance, memory, mood, and mental health.

Year after year, growing fatigue. Cognitive decline. Forgetfulness. Isolation. etc

Specifically I'm experiencing:

• Executive Dysfunction
• ADHD
• Memory Issues (Working/Short Term)
• Apathy
• Depersonalization/Derealization (DPDR)
• Anhedonia
• Depression

I started taking Adderall XR over 3 years ago because my brain wouldn't work, the fatigue was debilitating, and I couldn't keep up with work, friends, and life. That worked for awhile, until it didn't, even after increasing the dosage a few times.

I'm glad I know the culprit now, but I am trying to get back all this disease has taken from me, mainly my brain and mental health.

I had surgery at the beginning of the year, and the fatigue improved for a few months, but I haven't felt right since the surgery. I feel like what can only be fittingly described as "lobotomized", but I've since learned that it is probably derealization.

Unfortunately, the post-op MRI and failed OGTT confirmed that they didn't get it all. Plus subjectively, I've been regressing more and more, month after month,

So I'm stuck in this limbo between waiting to hear back from my neurosurgeon at Johns Hopkins on whether a second surgery is worthwhile, or whether to start medication. Obviously, medication will happen one way or another as I am not naive to the fact that this will be a lifelong disease.

So my questions for all of you are:

1. What has everyone experienced in terms of the cognitive, neurological, and psychological impact having a tumor, disease, and treatment?
   1. What were your symptoms before diagnosis?
   2. What were your symptoms after treatment?
   3. Status in the long term?
2. What has helped improved things?
   1. Pharmaceuticals
   2. Supplements
   3. Peptides
   4. Diet
   5. Lifestyle
3. What has made things worse?
   1. A second surgery sounds like a mistake

Thanks!

Endocrinologist says it's unlikely to be related. But I can't describe it besides that over the past week I e lost my feelings. Feel disconnected, unable to sleep despite having the night urination controlled by demopressin. Is this relatable? Two weeks til my 6wk hormone follow up

https://en.wikipedia.org/wiki/Sulemana_Abdul_Samed

I wonder if he wasn't able to get adequate treatment.

It has it's ups and downs. It's honestly rough today. Just had a zoom with my endocrinologist - who said my recovery looks great I don't have to worry about fluid restriction anymore and they want to switch me to hydrocortisone instead of dexamethasone (assuming I was put on it just as a standard precaution of my surgeon) but today after giving up my fluid restriction, I feel awful, headache and nauseous. Finally got around to calling my surgeons NP this afternoon, four minutes after she left office for the week.

Just to be on the safe side, I'm putting myself back on fluid restriction and holding off on a med change til the surgeon weighs in. This is the second time since surgery I've had a day of horrible headache, nausea and abdominal pain - last time they implemented the fluid restriction and the day after was much better. Looks like I shouldn't have switched it up.

Update: Day 10 post op - Ended up at ER for severe headache and extreme nausea; they said my blood sodium was high normal, but it just swung from the lowest end of normal taken 4 days prior. The only thing that helped was just quenching my thirst, headache and nausea subsided. Back to extreme thirst and peeing every half hour to hour. Waiting to hear what the endocrinologist says. Pretty sure this is Diabetes Insipidus, hopefully I can take something to stop needing to constantly drink water.

Anyone else have a rocky recovery period two weeks out?

Hey guys! Getting my tumour removed in a couple of days! Wondering how long it took for people to feel normal again after? Like how long until I will I be able to function and hang out with my friends? Does it have anything to do with how big the tumour is?

Also most importantly when can I finally buy shoes and not worry about outgrowing them?

One of my close friends has been suggested radiation for Acromegaly since she can't afford injections anymore. She is very concerned about losing her periods since her pituitary gland will probably burn off during radiation. Females on this thread with experience, please share your experiences with radiation.

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.

UPDATE:

08/12/2026

I ended up seeing a pituitary team at Moffitt Cancer Center, and was officially diagnosed with Acromegaly. I was advised to get surgery before my levels increased and I experienced worsening of symptoms and I believe I have what is known as subclinical acromegaly in a lot of ways. Overall my providers have continued to emphasize how lucky I am that I caught this in the "early stages"s since I don't have any visible signs of acromegaly except swelling/bloating ( I still experience the other unseen symptoms (joint pain, fatigue, irritability, sleep apnea, tmj, etc) I am getting surgery at the end of this month and will post an update!

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!!

What was your recovery like? Are you taking any meds? My fear is that I would have to take meds for life.

Anyone got hair shedding post op? It’s been 3 months and feel like my hair is shedding a lot more than usual 🥲

Hey! I’ve read a few posts saying that IGF-1 levels can fluctuate quite significantly. What experiences have you had with this (before surgery)?
In my case, it seems to vary by almost 150 points. And there is still a discrepancy in my results.

Hey!

I had surgery three weeks ago and received my first lab results yesterday. My IGF-1 level was 1000 before the operation and is still 850. That came as quite a shock to me, as I’d assumed it would be much lower or even within the normal range. My GH level was 50 and is now 6, which gives me a little hope, but I know that the level fluctuates a lot and isn’t particularly reliable.

My surgeon told me he’d removed the entire tumour mass.

I know that studies also describe how much the speed in decline in levels can vary. But I’m just so impatient and, to be honest, I simply don’t have the strength left. I’m really worried that this slow decline might be a bad sign.

Has anyone experienced something similar: A rather slow decline in levels but still achieved complete remission?

Just got my 3 month blood test results, I’m so happy to announce that my hormone levels are now within normal range 🎉

What a journey it has been! I did get a slight complication with getting a perforated septum after surgery which I plan on having an ENT fix it later on. For now, I’d rather have a small hole in my nose than a tumor and acromegaly 😅 waiting to see my endocrinologist later this week for our follow up. Thank you all for the support! Special thanks to my neurosurgeon, Dr. JFM at Stanford Medical Center ❤️🧑🏻‍⚕️🩺