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Pituitary tumor symptoms

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Replied by pnaadmin on topic Pituitary tumor symptoms


I am sorry for what you are going through. I am not a medical professional but I do know how frustrating it can be to have normal results but still feel like something is not right. I know you mentioned that your endo is a specialist but is he a pituitary specialist? How many patients with pituitary tumors has he/she successfully treated? You also mentioned a neurologist and they are not usually pituitary experts.

Not all endocrinologists have enough experience to properly treat people with pituitary tumors. A neuro-endocrinologist or an endocrinologist that has extensive experience successfully treating pituitary tumors is recommended. Have you been diagnosed with a pituitary tumor? Have they told you what kind of pituitary tumor?  You mentioned Cabergoline, are you still taking it, why was it prescribed?

My advice is to get a second opinion (or 3rd or 4th) from a pituitary specialist that will help you sort through your symptoms, not your numbers. Find a pituitary specialist or pituitary center. 

Here is a link to a list of pituitary specialists:


Here is a link to a list of pituitary centers:


It can be difficult to go from doctor to doctor but finding the right doctor can make all the difference. If you have any questions, you can reach us directly at (805) 499-9973 or via email at [email protected]

Take care, 
Tammy Mazzella
Pituitary Network Association
1 year 1 month ago #10659

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Pituitary tumor symptoms was created by Lorig1

I am  very frustrated with my recent bloodwork findings by my endo. He is a specialist who works closely with my neurologist. My bloodwork origionally came back with prolactin high,cortisol high.  Based on my symptoms this made sense.   So mri showed no growth on tumor which is good but I feel like I am getting worse. 
hands and feet swelling. 
Insomnia/ not restful sleep
weight gain-25 lbs and I eat very healthy and do yoga
joint pain
extremely tired lack of energy
not enthused to do very much.  
Pain and cramping in my legs- like charlie horses 
headaches come and go. 
Racing HR. 
They repeated bloodwork and did a saliva and a urine collection test and all came back normal. 
BUT- the doc said not much he can do with normal bloodwork.  I looked at some of my results and cortisol was 149. 
Igf-1 was 53 ngs which is saying out of range. 
Glucose was 112. Everything else is within range.  I am just so tored that I fall asleep at 2 pm for an hour or so.  I wake up most every am around 3 am with a racing HR of  99. I dont know what is normal but It does not feel normal.  
Please some advise?  Beyond frustrated.  Going on for 3 years.  Took Cabergoline 
1 year 1 month ago #10658

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