Pituitary tumor symptoms: joint, muscle and body aches

@hannahbananakevin Hi and welcome to Mayo Connect. Do you have familiarity with pituitary tumors?

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

Colleen, I had a pituitary adenoma which was removed. Thyroid under treated, now being addressed, may be the source of pain, cramping and stiffness, though improvement is very slow.

@wildirishrose, hi. Do you have a pituitary tumor? How are you doing?

Have you found a solution/cause for your pains?

@catherinemneubauer, searching for answers is hard, especially when doctors don't have the answer readily at hand either. Since moving to MN, are you seeing neuro specialists at Mayo Clinic? What is the next step for you?

@amara98 Hi, thank you for your support. My doctors don’t really understand my history because they don’t have majority of my records from CA. I share with them my daily symptoms, how my quality of life is not good. I think the last time I had a simple blood test to check my thyroid function, nothing else was in May or June. I have read other patients stories through Mayo connect and they were tested for Cushing Disease. I don’t know if that is what’s wrong with me. But they aren’t running more tests to figure it out. Just either give me a pill for pain, which isn’t working. Or tell me that they will order the same test in another year. Doctors used to care about your health and run more blood tests and CT scans, MRI’s . I was sent to a headache specialist and she gave me a prescription for nerve pain and it isn’t helping my pains in my head. Maybe a little with some leg pain at night. My Vit D has always been good. Although I don’t know when it has been checked last.

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 ?

Hello @mattie1972 and welcome to Mayo Clinic Connect. I'm sure you are glad to know the reason for all of the pain symptoms you have experienced over many years.

Please share a little about how this tumor was finally diagnosed. What type of specialist finally diagnosed this problem? Are you being referred to a surgeon at this time?

I look forward to hearing from you again. Will you post again?