Pituitary tumor symptoms: joint, muscle and body aches
Hi. I am new to this. And not sure I'm in the right category. I was diagnosed with a pituitary tumor in November. However, I have been experiencing terrible joint, muscle and body aches for a year now. No doctor knows why and nobody can confirm its from the tumor. I'm frustrated and becoming very hopeless and depressed. Can anyone with a pituitary tumor relate to body pain?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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.
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
@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.
Correction:UVA is in Charlottesville, VA
Thank you. I am actually originally from Cleveland. I may just have to make a trip over to West Palm or head back home to see a specialist there if I can't get an answer soon. The pain is getting worse and worse. I have brain fog and memory issues, and I can't lose weight no matter how hard I try. There are some blood markers that are off a little bit, but no one seems concerned.
@ralvarez38
I just checked online- i don’t see the West Palm office listing. There is one of the Cleveland Clinic hospitals as well as specialty clinics in Weston, FL.
I agree that you need to see someone soon since you are feeling worse.
What I would do is call Cleveland Clinic- in Ohio or Florida and find out where you can be seen in the near future.
If you need specific pituitary treatment I still recommend UVA in Charlottesville, VA.
Thank you
I too was told by Mayo back in 2017 that I had Fibromyalgia. Muscle pain was not one of my complaints. I was severely fatigued & lightheaded. Sometimes, I think Fibromyalgia is a ‘catch-all’ for unknown. Now…6 years of suffering later, I found out that I have severe stenosis of my celiac artery (in abdomen) caused by MALS. What is it w/all the Fibromyalgia diagnosis? It’s sad. 🥲
I too had a pituitary tumor diagnosed about 10 years ago and thought to be prolactin secreting. I had a great deal of pain and stiffness and eventually saw an endocrinologist who did additional testing and diagnosed me with Acromegaly. This is a rare disorder but make sure you have proper testing as it can cause lots of health issues!
Hello @bhampton1962 and welcome to Mayo Clinic Connect. Often when a person has a rare diagnosis such as this it takes a long time before the diagnosis is made. As Acromegaly is certainly a rare diagnosis and I wonder if you could share a little about your journey finding the correct diagnosis. For example, how long did it take before you got the correct diagnosis? What other symptoms, besides the pain and stiffness, led to this diagnosis?
I hope that you are feeling better now and have some symptom relief. What type of treatment has helped with your symptoms?