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Brain/Pituitary Tumors Community
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Pituitary Macroadenoma

Hello,

I was diagnosed with a pituitary macroadenoma that is 25 mm at it's largest dimension "It measures approximately 16 mm in AP dimension x 24 mm in greatest transverse dimension x 23 mm in craniocaudal dimension." The largest concern was that it appears to be placing pressure on the optic nerves, though vision tests, including a field of vision test, showed no compromise of vision.

My neurosurgeon recommends removal due to the potential risk to my sight. As part of his preparation for that surgery, he's had bloodwork done and scheduled a baseline appointment with an endocrinologist. My bloodwork shows low total testosterone (200), low T4 0.73 and high IgF-1 Binding Protein-3 (5520). Unfortunately, the IgF didn't include a unit of measurement, so I don't currently know if that's crazy high compared to what I've seen online or just a different unit. I'm following up with the endocrinologist, soon.

At present, I'm just feeling like it's all coming at me so fast and I'm afraid of life on pills/shots or some debilitating impacts to my life. My neurosurgeon is the top in our hospital system and specializes in these. I trust him and think I've managed to accidentally snag a great surgeon.

The hormones, though, are scaring me. The high growth hormone is particularly worrisome to me because it seems to be so dramatically high. At present, my only symptoms have been more frequent headaches and a reduced sex drive, but no signs of feature change due to growth hormone. I'm wondering if anyone else here can talk a bit about their macroadenoma that might have been producing growth hormone and how that played out. Anything else that I should be considering based on these numbers?
7 Responses
Avatar universal
I've been reading about the growth hormone stuff, and it sounds like I can expect not to live as long based on this. How scary...
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COMMUNITY LEADER
It may be that the tumor is large enough to make hormone reading crazy and the tumor itself is not hormone secreting so you won't know until after surgery.

All I can tell you is that you need to find the best possible surgeon that you can. Don't settle and ask questions about experience. Surgical experience is the number one factor in outcome. The second is tumor anatomy and you don't have control over that.

As for life, pituitary issues are lifelong and must be managed. You need a good doctor and a plan to manage and keep up with things. Most of us do pretty well but it will be a new normal, and may not be 100%, some of us get close though. Good luck. I won't be back for a while as I have cancer surgery so don't think I am ignoring you.
Avatar universal
Just for an update for anyone who wanders here in a similar situation, I had my tumor removed yesterday, and the surgeon believes he got it all. My endocrinologist told me my pituitary is responding very well, that my tumor does not appear to have been secreting anything, and my hormone levels are returning to good ranges already. He believes my hormone problems were essentially "mechanical" from the pressure the tumor was placing on the gland, and predicts my pituitary will price health and fully functional. As a tip, igf1-3 levels, alone do not determine anything. Post surgery, I've got some on and off headaches based on my movement and congestion, but otherwise feel great. I feel grateful for my medical team, and definitely recommend searching until you feel confident. I have heard about a relative in a similar situation whose surgeon removed the whole gland once he got in there, and she was a kid. Make sure you know who you're working with!
Avatar universal
Im glad to hear everything went well. My husband had exactly the same problems and also had surgery. He did not recover after surgery and remains in a coma since October. God Bless you!
Avatar universal
I'm glad that it sounds so good for you. My tumor ruptured in 2010 when i was 56, and left me disabled. I hope all works ooutfor you.
Avatar universal
I'm glad that it sounds so good for you. My tumor ruptured in 2010 when i was 56, and left me disabled. I hope all works ooutfor you.
Avatar universal
COMMUNITY LEADER
Wonka- glad to hear your tumor came out and all is well. I wish you well in your recovery.

Thelania and bigdenny, so sorry to hear your stories. If you would like to post more please do so in a new thread.
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