Avatar universal

I'm struggling to find a diagnosis. Is it a pituitary tumor?

My symptoms are: visual disturbances (loss of peripheral vision), severe decline in mental cognition (inability to concentrate, learn, focus, organize), severe mood swings, chronic fatigue, no libido, inability to get and maintain erections, very poor sleep (waking up not refreshed), and the list goes on.

I have been trying to find answers for years now.  I am NOT depressed, I do NOT have bipolar, and I am NOT psychotic.  I have tried all the psych medicine there is and my condition continues to get worse.  I can feel something wrong with me and I refuse to 'accept my illness'.

I recently had an MRI done and the doctor didn't even follow up with me, so I'm looking for a second opinion.  I have been researching online (as I have been doing for the past three years) and came across the possibility of a pituitary tumor.  This makes sense, given my loss of side vision, fatigue, mood problems, etc.  This is the only answer I can come up with.

I have attached some pictures I have taken of my head.  I don't know how to read an MRI, but given the fact that the doctor NEVER contacted me for a follow up, and that I am in a perpetual 'brain fog' my entire life, I am very desperate right now.

If anyone has any helpful comments please don't hesitate.  I can't live like this any longer.

Thank you,

- John
5 Responses
Avatar universal
Having a mystery disease is no fun.

Many of the symptoms that you listing (except oddly, the lack of depression and the like) are very consistent with hormonal imbalance in my experience (I am not a doctor, just a person who has had a lot of hormonal problems).

Given the visual issues, have you seen a neuro-optho? Have you had hormone testing and did you get copies of the testing? What did the testing show?

It is possible to have a normal MRI (however not usually with visual changes) as a lot of radiologists miss the lesions, as well as the smaller ones can fall between the 3mm slices. If the scan was not done with a pituitary protocol (called dynamic) then it can also be missed.

Do you get copies of all your testing, and your MRI reports? You are on the ball to get the MRIs themselves!
Avatar universal
If you look on reputable pituitary sites - we have some listed on the health pages as resources, you will see that fluctuations do happen (I know my tests were all over the place) and that the mental heath issues plague us and alas, once the label is on, it is hard to defeat. I know they tried it on me and I went to counseling and they said we think the issue is more physical in nature than mental - so it can work in your favor to find a good person that knows their stuff, but few people do, most just toss pills.

In the testosterone testing - is it only free testosterone? Or do they do bio-available? It should be the latter as that is a more complete test. They should also test the complete *loop* from the pituitary on down - so LH, FSH, estrodial, dhea sulfate, sex binding hormone (which can be included with bio-available testosterone) etc. to get all the sources of adrogens so the doc has a more complete picture to know more. Just knowing free testosterone does not say much.

Dynamic protocol is with and without contrast but the difference is that the tech must take images while the contrast is being given - and it requires skill and some equipment that not every place has. I have been told the place does it only to be taken out to be given the shot of contrast - which is NOT dynamic. The doc has to just order a pituitary MRI and the place you go has to really know how to do it well.

Read up - an educated patient does better but some docs do hate that.
Avatar universal

I have only had free testosterone and none of the other tests.  I also know what you mean about doctors getting agitated when I try to bring up things I researched on my own, but I realized it's better to do that than to blindly let them give you what they want (it just takes longer until the next iteration when they have to try something else).

I keep getting angry at myself because on days that I feel 'ok' I keep saying to myself that it really was all in my head. Then when I'm feeling like garbage again (for no apparent reason) I remember it's a physical/body thing.  I am so confused and really don't know what to believe anymore.  All I know is that I'm living in hell and I no longer have a libido.

I'm going to do a lot of reading... thank you for your help once again.
Avatar universal
This is 'lookingforanswers99' - apparently I have two accounts??
Avatar universal
Well, in a way it IS in your head if it is pituitary... at least that is how I looked at mine! :)

I kept on doc shopping until I found a doc I liked and would work with me. It is not easy when you don't feel great and your energy levels are in the toilet.

Working on the account thing.
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