Hi there. I know this is long but hope its worth the read. 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 or 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 endocrinologist, 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 endocrinologist 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. (in my own research, I believe) my body pain is 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, and 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. It basically sates, patients need to listen to their bodies and not just go by what 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.

What time of day was your blood work done? Mine had to be done before 8:30am every time. Maybe that is a reason yours was not consistent. ??

I would get a second opinion from a different endocrinologist. I had and still have some of every single symptom you listed besides shakiness. And to add to the list: heart palpitations, thinning hair, hot flashes (tho i feel you may have described), dry skin, swollen fingers. I believe my synthroid (thyroid medication) needs to be increased.

I know this was lengthy, but I hope it helps. I hope you get the answers you are looking for. My next research is going to be nerve damage and how/if/when it will heal. I hope I will be pain free once my tumor is removed and my thyroid gets back to normal!