Pituitary tumor symptoms: joint, muscle and body aches

Posted by khauert @khauert, Jan 12, 2020

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.

pamp56 | @pamp56 | Jul 16 11:52am

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.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 16 2:18pm

In reply to @pamp56 "Hi & thank you for your reply! No, my doctors haven't recommended an oncologist, only a..." + (show)

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?

pamp56 | @pamp56 | Jul 16 5:59pm

In reply to @hopeful33250 "It would be a good idea to educate yourself about this type of tumor. I encourage..." + (show)

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.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 17 7:16am

In reply to @pamp56 "Hi, I've been reading about this adenoma & what it's possible issues can be but, after..." + (show)

I look forward to hearing from you again, @pamp56

picturemanz | @picturemanz | Jul 19 8:18am

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

Teresa, Volunteer Mentor | @hopeful33250 | Jul 27 2:56pm

In reply to @picturemanz "Hello, Has anyone had focal impaired awareness seizures with pituitary tumor diagnosis?" + (show)

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?

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.

thedee | @thedee | Jul 27 5:47pm

In reply to @khauert "I was diagnosed with a prolactinoma pituitary tumor. However, in all honesty, I think the doctors..." + (show)

@khauert

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.

Jump to this post

Hello,
Regarding your prolactin numbers, anything under 12 is normal. Anything above 12 is abnormal. My number was in the 50's then jumped to 100. I was tested and the result was pituitary tumor. I had surgery because the tumor was laying between my carotid artery and optic nerve. If they are not removed you can go blind due to it growing on the nerve and pressing it flat and/or cut off your blood flow to the brain from your artery which can be fatal. Even though a high percent of these tumors are not cancerous they can be deadly and should be taken seriously. I am one who went through it and still struggling.

thedee | @thedee | Jul 27 5:49pm

In reply to @pamp56 "Hi & thank you for your reply! No, my doctors haven't recommended an oncologist, only a..." + (show)

Most Pituitary tumors are non-cancerous.

thedee | @thedee | Jul 27 6:00pm

In reply to @pamp56 "Hi, I've been reading about this adenoma & what it's possible issues can be but, after..." + (show)

@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.

picturemanz | @picturemanz | Jul 27 6:04pm

In reply to @hopeful33250 "Hello @picturemanz and welcome to Mayo Connect. In your post, you mention being diagnosed with a..." + (show)

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.

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