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.

Colleen Young, Connect Director | @colleenyoung | Dec 19, 2025

In reply to @wildirishrose "Have you found a solution/cause for your pains?" + (show)

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

wildirishrose | @wildirishrose | Dec 24, 2025

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.

hannahbananakevin | @hannahbananakevin | Mar 10 2:36pm

In reply to @thedee "Most Pituitary tumors are non-cancerous." + (show)

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

Turkey, Volunteer Mentor | @tomrennie | Mar 10 7:14pm

In reply to @hannahbananakevin "@thedee Most but not all of them are non-cancerous." + (show)

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

caredy77 | @caredy77 | Jun 13 9:09am

When you have a tumor on your pituitary gland, it can cause your adrenal glands to stop functioning. If you are not producing cortisol, then you have no natural Cortisone to soothe your joints. My only complaint was joint pain before a tumor was found. My pituitary tumor was the size of a ping-pong ball. It shut down my adrenal glands and thyroid gland. I also have diabetes insipidis, which results in having to urinate without the hormone, you need to alleviate it. I take hydrocortisone, thyroxine, and desmopressin.

caredy77 | @caredy77 | 4 days ago

In reply to @cheryl1 "I was told 4 years ago at mayo in Jacksonville I had fibromyalsia. 4 months ago..." + (show)

@cheryl1 A pituitary adenoma can cause your pituitary gland which directs your other hormone producing glands to shut down. When that happens, your other glands stop producing cortisol. I was sent to rheumatology due to joint pain from my tumor. It was not rheumatoid arthritis.(tests were negative) It was the lack of cortisol from my adrenal glands. Pituitary tumors grow very slowly and mine had been there probably 10 years. It was the size of a ping-pong ball pressing on my optic nerve. My thyroid function was zero. I had lost weight unexplainably. The tumor was found when they did cataract surgery on my eye because I could not see. Over in the past 19 years. I have done a lot of reading. These tumors throw your body completely out of whack. I had so much joint pain I could not get out of my car. They gave me a shot of steroid and I thought I was cured. It did not cure me. It simply relieved my symptoms of adrenal insufficiency.
Doctors do not think of pituitary tumors when all these weird symptoms happen. If I had not had cataract surgery, which did not clear my eye, I don’t know how long it would have taken for them to find the tumor.

caredy77 | @caredy77 | 4 days ago

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.

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@khauert Once the pituitary adenoma has been addressed your hormone levels will go back to normal if you are treated appropriately with the correct doses.
Your thyroid levels and your cortisol levels are very important. You could be treated with thyroxine and hydrocortisone.
My tumor was so large that they removed the pituitary gland with it. I have diabetes insipidus due to that. I am on a hormone replacement for that called desmopressin. Your endocrinologist will direct all this. If the tumor is not removed, it will continue to grow albeit slowly. It will continue to affect your glands.