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Symptoms not typical of a Prolactinoma

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Replied by carolk on topic Symptoms not typical of a Prolactinoma

Hi There, I am not a medical professional. What I know about prolactinomas is they are diagnosed based on an elevated prolactin level. However, there are cases where there is a mild elevation in prolactin that has other causes. Increased intrasellar pressure in or around the pituitary can cause what they call the stalk effect which can elevate prolactin levels as well as certain medications. There have been cases where patients have been put on medication to shrink the prolactinoma and lower the prolactin levels and when the tumor didn't shrink it was determined not to be a prolactinoma after all. With the added issue of the lesions in both hemispheres, I would suggest a second opinion with a pituitary specialist. At a pituitary center would be ideal because they have a multidisciplinary team of doctors that all work together to come up with the best treatment plan for you. Here is the list of PNA's known pituitary specialists that you can search for one in your area.  https://pituitary.org/medical-resources/physicians  Here is a list of hospitals with pituitary centers/programs:  https://pituitary.org/medical-resources/hospitals . Lastly, the PNA is hosting a webinar that is being presented by 2 outstanding pituitary specialists on Friday, March 6th at 12 pm pst. It is on the subject of Acromegaly, which is a pituitary tumor that hypersecretes growth hormone. But they take questions at the end, so it might give you an opportunity to ask their opinion on what to do in your situation. Here is the link if you would like to register: https://pituitary.org/events/webinar-updated-patient-approach-and-resection-of-the-medial-wall-of-the-cavernous-sinus-game-changing-technique-for-patients-with-acromegaly-2
5 months 1 week ago #10857

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Symptoms not typical of a Prolactinoma was created by fullonmonet

My symptoms began in February 2018 when I started to experience left leg numbness and "brain zaps" on my left temple. I immediately thought I was having a blood clot in my leg from my birth control so I went to the ER. They ran blood tests and nothing came up to suggest blood clots so an MRI and x-ray of my spine were performed. They discovered that I had a 3mm pituitary tumor and a few non-specific white matter lesions in my brain. The radiologist said the symptoms I am having probably wouldn't be from the pituitary tumor so I made the now bad in hindsight decision of not going for neurology and endocrinology follow up because at that point the numbness was gone. 

Fast forward to November 2019 and I started experiencing numbness in my legs and arms, burning sensations in my legs and arms and scalp, Lhermitte sign (bending my chin to my chest and experiencing electric shock), muscle twitching,  and buzzing in ears. At that point, I had already moved to a new state so I went to the hospital in my new state. Thankfully I am military-affiliated so they had access to tests and the MRI report but not the actual MRI images. My neurologist said the symptoms are most likely from the tumor and decided to reorder an MRI of my brain and of my pituitary tumor. Meanwhile, I meet with my endocrinologist and he adamantly said the symptoms are not caused by the pituitary tumor and found out that my tumor is prolactin active. my prolactin was 59 on one test and 75 on another test. The endocrinologist again stated pituitary tumor isn't causing my symptoms and since I do not have the symptoms typical of a prolactinoma (no menses, low sex drive, lactation), he gave me the option of coming back in 6 months to do another prolactin test or to start medication. I decided to wait. 

I get the results of my MRI and it says "yup pituitary tumor measuring at 4mm." It also says that I have multiple (found out later it was 11-12) deep white lesions in both hemispheres. When I saw that I immediately thought "MS" and expected to have a spine MRI done but when I met with neurologist he seemed surprised that the endocrinologist said it wasn't the tumor and ordered a nerve conduction study and tests for Lyme, b12 deficiency, lupus, and arthritis. Everything came back normal and the neurologist gave me gabapentin, told me that it should help keep the pain down, and to find a new "normal" because he isn't doing any more tests since he is confident that it is an endocrinology problem.

I have talked to some other prolactinoma sufferers and they all agreed on my symptoms (burning everywhere, itching, limbs falling asleep fast, joint pain, etc) do not fit the prolactinoma mold. I feel caught and don't know what to do. I figured I would just get a second opinion since I am moving in less than 2 weeks (joys of the military). I was just curious if someone had a similar experience as mine. 
5 months 1 week ago #10856

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