Okay..here goes. Sorry for the long post. I am a 38 year old male that was diagnosed with a 3mm pituitary adenoma about 1 month ago. I unfortunately got the results of the MRI scan that revealed the adenoma a week before I had the opportunity to discuss the diagnosis with my endocrinologist. As a result I had some anxiety during that week. After talking to my endo and getting the results of my pituitary panel it was determined that all of my hormone levels are normal. I have a very slightly elevated prolactin level but my endo does not believe that the adenoma is productive or that it is a prolactinoma. the endo has stated that we will just monitor the situation and she does not believe that it needs to be treated. She tells me that I have zero to worry about. 1st question - any comments about her conclusion?
About a week before I got the adenoma diagnosis I started taking crestor for high cholesterol. While my overall cholesterol was fine, apparently the large and small particles that transport or make up cholesterol and actually damage artery walls was very high.
To my question...I am experiencing strange visual distortions. Nothing is wrong with the "mechanics" of my vision. No blurry vision, floaters, peripheral vision changes. I see the way I always have. However, I am experiencing light sensitivity at times and visual "dimness" at others. My vision at times takes on a sureal quality. I can only associate the experience with that of having taken to much sinus medication or being very very fatigued. Like staring at a computer screen in a dark room and then entering a lighted room. This is also accompanied by light headedness and at times a mild headache. It seems to be aggravated by caffeine. At first I experienced these episodes intermittantly but it seems like they are coming on more frequently and lasting longer.
I have had a complete opthamalogical exam and nothing abnormal was found. A 3 mm adenoma should not be large enough to be exerting any pressure on the optic nerves. My MRI was otherwise normal. The general consensus seems to be that it is associated to anxiety. I am receptive to this but it really just does not seem to be anxiety to me. I have never suffered from any type of anxiety prior to my diagnosis. When I was having anxiety during that first week I immediately recognized it for what it was. the sensations that I was having were attached to feeligs of panic and fear. Those feelings are no longer present but these weird visual/perceptual feelings persist. I stopped taking the crestor for 10 days to see if it was due to some reaction to the medication. It did not have any effect so I am back on the crestor. If anyone has any input it would be greatly appreciated.
What was the reason for you to go for an MRI that detected the pituitary adenoma?Was it some visual disturbance? Whatever the problem, hope that got resolved.
As far as your hormone levels are concerned, non-functioning tumors do not secrete any excess hormone, infact they might secrete less hormone. However before commenting on the decision of your endocrinologist, I would like to know the exact prolactin levels.
Disturbances in light perception are sometimes the first indiations of a pituitary adenoma, though most doctors tend to ignore them. The initial field disturbences show up as disturbances in light perception in the temporal region, even for a small tumor. This happens when the tumor is a prolactin secreting one. Treatment for excess prolactin sometimes relieves the disturbances in light perception. You may also ask your ophthalmologist for a computerised test for the field of vision, which detects these defects earlier than regular perimetric analysis.
Also, if Diabetes or hypothyroidism are the reason for you hicher LDL cholesterol levels, then that also might be a cause for the differences in light perception.
Hi - thanks for your reponse! I initially went to my general practitioner to have my testosterone levels checked due to fatigue etc.. My prolactin level on the first test was 20 with 17 being the high normal for that particular prolactin assay. The GP had two other patients with prolactioma diagnosis and referred me for the MRI based on a low normal Testosterone level and free testosterone level (both still normal - just low). After the MRI I went to the Endocrinologist who had a complete pituitary panel done. Prolactin from that test showed my level to be 18.5 with 18 being the high normal.
I have no other hormonal issues and I am not diabetic. In fact, I am otherwise active and healthy and this is probably the first time in my life that I have had a medical issue of any kind.
In answer to your question...I was having no visual disturbances prior to the diagnosis. A rather enormous coincidence I agree. But I just don't believe that it is anxiety.
I had a prolactinoma with only slightly elevated levels. Mine was 3mm. I was symptomatic and told to ignore it. I was not diabetic. I was lactating out of both breasts. My testosterone was changed.
I did have another pituitary tumor as well, it was Cushing's disease. My tests were both normal and abnormal as I had the episodic version.
Test results do not correlate with tumor size. Tests can also vary - as hormones go up and down.
You also need a comprehensive testing of all the other hormones. Thyroid can make prolactin elevate. The endocrine system is just that - a system and when one goes out of wack, others tend to follow. A good doctor will find the source and treat it so the others will then line up again naturally.
Hey! thanks for your response to my post. It is really nice to have someone who "gets it" when you are dealing with an issue like this. I just went to my 2nd eye appointment today for visual field testing. The doctor said that everything related to my eyes is completely normal. I also went back to my Endo the other day to talk to her about the effects that i am experiencing. Now, about my Endo.... She seems very thorough. She gave me some links to a paid pituitary site for physicians (it's like a free month membership). The site seems very informative, if a little technical. This is what she has done so far:
A berkley blood panel which reveled low normal Testosterone and slightly elevated prolactin
scheduled me for the MRI where the 3mm adenoma was found
followed uo with a pituitary panel. All hormones were within range.
Wants me back in 2 months to do another pituitary panel.
said that we will do another mri in 6 months and continue to monitor hormone levels.
She is also treating me for cholesterol and has me on Crestor. She really seems more concerned about the cholesterol than the pituitary adenoma. I am not sure what to think. I believe you are right though, I think I will get all of my test results together and go for a second opinion. I just do not believe that the visual sensations that I am having are anxiety related. What an interesting new twist my life has taken! The endo said that the tumor may have been with me for some time but that we will not know anything for sure until we monitor it further. It really does seem coincidental that none of my visual stuff started until after I got my diagnosis. When you were diagnosed with the 3 mm tumor did it grow rapidly or at all? I know you must have told your story a thousand times but you really are helping people by doing so! I would really be interested in what you think! thanks again. It is so nice to have someone that has been there to talk to!
My MRI also shows 3*3*2 mm Pituitary Adenoma. My Calcium level has been around 11 for the past three blood tests,PTH of 83 and Prolactin of 27, FSH is 4.9 and Estradiol is less than 7. Went to see endocrinologist who said 5% of all population show adenoma on MRIs so he said to disregard it and it was not even woth following up on. I still have symptoms. Bug like bites all over my face started popping up as well about a year ago when fatigue became a debilitating factor and I first started seeking help gtom my GP. I take a ton of vitamins to keep myself going. I also gained weight and I work out everyday and eat very helthy - non existent carbs and no wheat/dairy products. I hope it will work out for you and please keep us posted of your progress so that we may be able to learn a thing or two. It's frustrating to deal with the medical system where they just blame everything on depression. I have never had a problem with depression and I would know if my mood was different.
I know that these posts were from a long time ago, but I hope you get this. please, please, please look up Cushing's syndrome! I am currently being tested for it. I live in Oregon, but I traveled to LA last week just to find a Dr who is an expert with cushings (Theodore Friedman).
My symptoms are extreme fatigue, muscle aches, weight gain (120 lbs in two years even though I used to be a fitness instructor and I can't lose the weight no matter what I do), memory loss, depression (wasn't depressed before), visual distortions and dimness, dizziness, stomach pain, migraines, insomnia, etc...
the list goes on and on. I have had to quit working because I just don't have the energy anymore, but Ilove my job! I have had drs tell me that it's because I'm depressed (that came after the other symptoms for me) or that I just need to lose weight and exercise (they wouldn't believe me when I told them I only eat 1000- 1500 cal a day and I can't lose a pound). I knew something was wrong, so I kept searching and discovered cushings. only 10 in a million ppl have it, so most endos know little about it. What they do know is a very specific example of what to look for in cushings, but the symptoms vary greatly from person to person. someone may only have one or two symptoms while another has 40 (me). it is very difficult to diagnose too. I know someone who did 15 24hr UFCs and it still didn't show high cortisol. She had to tests and tests and test. She is now preparing for her 4 th brain surgery because of cushings.
You know your body better than any Dr. Trust that.
for more info, visit the message boards at cushings-help.com
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