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Pituitary tumor symptoms: joint, muscle and body aches
Neuroendocrine Tumors (NETs) | Last Active: Jun 26 8:20am | Replies (187)Comment receiving replies
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.
Replies to "I was diagnosed with a prolactinoma pituitary tumor. However, in all honesty, I think the doctors..."
been going through same things for 2 years!!! Pain getting worse daily....whole med team now!!! I am seeing my neurosurgeon on 5ec 21 and will say, " I want this tumor out NOW!! " the pain is debilitating! changed GP's because she ever said for 2 years was , "I don't understand what you are driving"
Anyway, can't afford the $50K to go to Mayo so will continue to push and advocate for myself in Alberta!! The Canadian Med system is not all it is cracked up to be!! I am on the journey and Will win!!
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.
@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.
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I am a Physical Therapist with issues on how the thyrioid can affect enzymes crossing the brain barrier. Your question is how nerves heal. A nerve will re-grow at a predictable rate. So much a month.
As an example a 1/4 of an inch a month. So, re-innervation depends on the distance of the lesion from the target site. A nerve has a myelin sheath. It has periodic gaps. A current travels the sheath by jumping from one gap to the next. If this sheath is damaged, the impulse has no hi-way. With relief from the cause, the nerve will also heal approximately the same 1/4 inch a month. We are talking normal people with nerve compression , injury, or toxic situations. De-mylination is chronic in some diseases . Hope that help.