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.

I was told 4 years ago at mayo in Jacksonville I had fibromyalsia. 4 months ago mayo now knows I have Cushings I had pss December 3rd having ipss march 13 I hope they can locate tumor

@thedee Most but not all of them are non-cancerous.

Most Pituitary tumors are non-cancerous.

Have you found a solution/cause for your pains?

36 years ago I had terrible dizziness and pressure in my head. I lived in CA and had an MRI and was told I had a pituitary tumor. Neurosurgeon did a biopsy, no cancer. Tumor continues to expand. Three doctors didn’t know what was wrong. Hormones were normal. Was finally approved for treatment at UCLA in Los Angeles. Removed 90% of my pituitary gland, not for a tumor, but because it looked very abnormal. Both times after surgery, I was inpatient for 8 days. Treated really well. Started on replacement hormones and did ok for many years. I had lots of joint and muscle pain and was told it was from the replacement meds. I get dehydrated really easily because of diabetes insipidus. I have been having ear pain, facial pain, eye pain and sharp, stabbing pain and pressure all around my head, since August, last year. I now live in MN to be near my granddaughters. My doctors have different opinions on what is or isn’t happening. One said that I don’t have a pituitary gland, but a small tumor that is not causing my problems. Another doctor said he agreed with the first doctor and said I had a gland, but it is not working and I just needed my meds adjusted. I have lived 33 years without a pituitary gland and am now experiencing symptoms that is similar to when I had my surgeries in CA. I am so frustrated with the health care system and insurance companies

Hi how are you? I’m going through the same thing right now but my Dr checked my Vitamin D levels and I was severely low so apparently that’s what was causing the joint pain it isn’t related to the adenoma or prolactinoma did you ever get this sorted out ?