Pituitary tumor symptoms: joint, muscle and body aches

Hi! Thank you for this information, it's very helpful. My endocrinologist has already begun the process of referral to a neurosurgeon & because I'm on an HMO, I have to go where they're networked. I was hoping to go to Sacramento, to UC Davis but i just found out i must go to Stanford, in Palo Alto, CA which is about 100 miles away from where I live! That's going to be quite an adventure to go there, in bay area traffic. I guess, if I want top notch health care, Stanford is a good choice. I will definitely discuss the issues you outlined with the neurosurgeon, when & if I get there (hopefully in one piece!).

@pam56
Hello, I had a pituitary removed in 2016. By 2020, more came back. If cells are left behind they can grow back, I did not think to ask my surgeon how do they get rid of all the cells. Even though these tumors are not cancerous they can be life threatening. Meaning, if they grow and attach on the carotid artery that leads to the brain it can be fatal depending the the size and location because the tumor can cut off blood flow. Or, if it grows and presses against the optic nerve a person can loose sight. Either way its better to get them taken care of before they do become problematic for the surgeon especially depending on location. Ask your surgeon to show you exactly where its located. Once you see, then ask about complications. I did not do that. I wish I did because I lost my sense of smell. Because the instrument they use to go into your nose can damage the smell sensors in your nose like mine. Note: If your Primary doctor seems laxed about your condition, get a second opinion and see a team of specialized neurologist who can help you promptly.

In 2022 my friends brought me to the ER after I just stopped and stared with no response for several minutes each episode.
A brain MRI showed a pituitary tumor larger than 1cm and Dr.s suspected pituitary prolactinoma. Surgical removal of the tumor is not an option for me due to my need for warfarin to safeguard against clots on my St Jude artificial heart valve.
I'm looking for anyone who has a similar situation experiencing focal impaired awareness seizures which I understand can be caused when the tumor puts pressure on the medial temporal lobe of the brain ? i never remember my seizures and I have no warning they are about to occur.
I was prescribed the generic form of Keppra for anti'-seizure meds and I was prescribed Cabergoline to hopefully shrink the tumor (prolactinoma). I am due for an MRI in September 2025 and I'm hopeful there are signs of shrinkage.

Hello @picturemanz and welcome to Mayo Connect. In your post, you mention being diagnosed with a pituitary tumor. How long ago was this diagnosed? Here is a link from the Epilepsy Foundation website describing a focal onset impaired awareness seizure: https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-onset-impaired-awareness-seizures#What-Is-A-Fo-Impaired-Awareness-Seizure?

Did this seizure disorder begin at the same time as your diagnosis of the pituitary tumor? What type of treatment are you receiving for the seizures and the tumor?
I look forward to hearing from you again.

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.

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.

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.