Pituitary tumor symptoms: joint, muscle and body aches

I was diagnosed with a prolactinoma pituitary tumor. However, in all honesty, I think the doctors question what kind of tumor it really is. For prolactinoma, my prolactin level should be in the hundreds and thousands. My blood work showed it was at 57- high enough its a problem, but not high enough to be prolactinoma. The following was diagnosis from a variety of docs I saw: 1st primary physician- carpel tunnel, 2nd primary physician- I am over weight. Rheumatologist- 1st visit-I have gout. 2nd visit- fibromyalgia. 3rd visit depression. When I saw my endochronologist, he said it was my weight; the tumor had nothing to do with the pain. When I saw the neurologist he didn't even want to hear about my symptoms. His goal is to get the tumor out. With obvious frustration, I called Mayo and thankfully, I see an endochronolgist and a neurosurgeon soon. In the mean time, I have been researching pituitary tumors and joint/muscle pain, and I fall short every time. Then it dawned on me to research hypothyroidism (which I was diagnosed with when the tumor was found November '19). I have all the symptoms of hypothyroidism, one being sever muscle/joint/bone pain, swollen hands/fingers and feet, and carpel tunnel like symptoms, to name a few. All those symptoms are a result of nerve damage from hypothyroidism going untreated. I noticed something "off" with my body almost 2 years ago. I just assumed it was because I am aging, not as active, overweight. Turns out the tumor and hypothyroidism has slowing been creeping up on me. And interestingly enough, I stumbled across an article (that I didn't save and can't find on the internet) that quoted a doctor. He said the patients need to listen to what our bodies are telling us and not always go by what our blood work shows. I guess blood work doesn't always show there is a thyroid issues because our hormone levels change throughout the day. He advised to talk to the doctor about all the symptoms regardless of the blood work results. I know this was lengthy, but I hope it helps. My next research is going to be nerve damage and how/if/when it will heal and I hope I will be pain free once my hypothyroidism gets back to normal.

Hello,
Has anyone had focal impaired awareness seizures with pituitary tumor diagnosis?

Hi, I've been reading about this adenoma & what it's possible issues can be but, after reading comments about issues others are having, I too are having some of them & was unaware the adenoma may be the culprit of these issues. Like I said before, the doctors aren't too concerned because it's non functioning & tests are "normal". However, I'm discovering it may be causing issues from the pressure of the growth pushing on the pituitary stalk, optic nerve & brain. I'm waiting for approval to go out of network to a UC Davis neurosurgeon but I'm staying in constant contact with my GP & Endocrinologist. I'll discuss seeing an oncologist at my next appointment.

It would be a good idea to educate yourself about this type of tumor. I encourage you to read the article from the American Cancer Society. I look forward to hearing from you again when you have more information, @pamp56.
Do you have any follow up appointments scheduled yet?

Hi & thank you for your reply! No, my doctors haven't recommended an oncologist, only a neurosurgeon. I just completed an ophthalmology test & they're digesting that info. Its slow going & they don't seem to think anything of it! I guess I just have to wait & see, but I'll discuss an oncologist with them to see what they think. This is all so confusing because I'm trusting others with my care & even i don't understand what the ramifications might be. I'll keep you posted with what I find.

Hi, I was diagnosed with a non functioning pituitary adenoma just over a year ago however there were very few symptoms until recently. I had an MRI in May 2025 that showed the adenoma had grown to 2 cm within the year & now I'm experiencing facial pain, headaches, muscle pain & weakness, fatigue, tremors, joint pain & I pass out all the time! I get very tired and shortly after, I pass out, mostly in my chair but I've passed out a couple of times on the kitchen counter & of course, the toilet. I'm waiting for approval to see a neurologist outside of my health network but I'm going to try to move it along a bit faster - if I can stay awake long enough to do it! I hope you can get some answers to your issues as they are allot like mine. If I get news about it I'll keep you apprised & would appreciate you to do so also. I look forward to some good news soon!

Hi, I was diagnosed with a non functioning pituitary adenoma just over a year ago however there were very few symptoms until recently. I had an MRI in May 2025 that showed the adenoma had grown to 2 cm within the year & now I'm experiencing facial pain, headaches, muscle pain & weakness, fatigue, tremors, joint pain & I pass out all the time! I get very tired and shortly after, I pass out, mostly in my chair but I've passed out a couple of times on the kitchen counter & of course, the toilet. I'm waiting for approval to see a neurologist outside of my health network but I'm going to try to move it along a bit faster - if I can stay awake long enough to do it! I hope you can get some answers to your issues as they are allot like mine. If I get news about it I'll keep you apprised & would appreciate you to do so also. I look forward to some good news soon!