Pituitary tumor symptoms: joint, muscle and body aches

@ralvarez38
My daughter’s Endocrinologist was Dr. Mary Lee Vance at UVA in Charon, VA. Amazing. She is very well known.
My daughter lived in FL at the time. After seeing awful doctors there I finally found a very knowledgeable Endocrinologist at Cleveland clinic’s new office in West Palm Beach. This was 2009-2010. She did the initial testing and recommended UVA. She didn’t think Miami university hospital was at the same level. Cleveland Clinic has a hospital on west coast of FL.

What is the name and location of the endocrinologist? I live in Florida now and I can't find one that just doesn't want to blame bad eating and diabetes. My story sounds so similar to your daughter's. I've been looking for an answer to my weight gain since college and I'm 53. I was an athlete in high school and then gained 70 pounds in 6 months. Because the basic blood panel doesn't show what they're looking for, no one will dig deeper. Please help

Did they do a neck to pelvis PET-CT with GA Dototate contrast? Any other blood work, like parathyroid hormone (PTH)? Sometimes these NETs run in packs.

Joint and bone pain, I'd suspect parathyroid adenoma.

I’m also dealing with a pituitary tumor. I went in to get answers for headache issues and that’s when they found the tumor. My blood work is fine and the tumor isn’t large enough that’d cause concern for removal. However, I’ve had a dull aching headache for over 3 years now and sudden loud noise can cause it to completely overtake my head causing a severe headache. The doctors say that the headaches aren’t related to the tumor since they’re not sinus headaches. I’ve also had muscle tightness and my neck always hurts and cracks. My whole body seems to crack/ pop a lot. Recently I’ve had my left leg from the knee down go numb and my eye dr says I have a stretch mark on my left eye and that eyes vision has gotten worse. Anyone have similar symptoms with a pituitary tumor? Did removal help? I’m to the point where I just want it out bc regardless of the doctors saying it’s not related I can’t help but feel like it might be. I always feel super fatigued and my memory has worsened.

I’m also dealing with pain in neck and shoulders. It’s like tense and muscles are very tight. Did yours feel like that? Did you have a constant headache? Doctor says it’s unrelated. Has the surgery fixed your aches and fatigue? Just recently had my left leg from knee down go numb and eye dr saying I have stretch mark in left eye. I have appointment this week and I want to tell them I just want it removed. Curious how you’re feeling post surgery.

I am a 34 year old male who just got diagnosed with acromegaly disease, caused by a pituitary adenoma. July 6th I had surgery to remove tumor and am waiting for 6 week blood test to see if high igf-1 levels start to stabilize. My symptoms were fatigue, sweating, body aches, dizziness, brain fog, joint pain, joint poping, digestion issues and body numbness. My question is has anybody had this situation and after surgery did symptoms get better? How long did it take and did surgery put your acromegaly into remission.

Hello will you please write me to discuss your symptoms. I have been trying to contact you for awhile and no response. You and I seem to have dealt with same thing and being you before me, how are you these day. Did you have surgery and are your symptoms better?

So within a week your symptoms were resolved, that's great. I'm still dealing with fatigue, carpol tunnel and joint poping and some neck/shoulder pain. I'm hoping it goes away and being positive, only 10 days past my surgery. It's so weird cause most these symptoms which us pituitary adenoma people have, doctors will say unrelated. In my research body aches, carpol tunnel, fatigue, numbness, tingling, ear ringing, joint pain or poping seem to be common. Thank you for your reply.

I had symptoms of weakness, numbness to the right side of the body mostly with headaches, fatigue. Many symptoms. Told they weren't related to the tumor (1.5 cm) because hormones weren't elevated. HOWEVER, my symptoms resolved IMMEDIATELY following tumor removal. So how the tumor was affecting me is still an unknown but all I know is after it was gone my life changed for the better!
Good luck,
Steph

MRI showed a small tumor and blood work high igf-1. I was diagnosed with acromegaly disease and July 6th I had my tumor removed. I'm currently at home recovering. Some symptoms are still here, I'm worried about my joints and hope we caught this rare disease early enough. I wish there were more people who relate who can talk with me.