Pituitary Tumor (Questions about symptoms and treatment).
Hello, I have some questions. Hope someone with similar situation or medical professional could provide info.
55 YOM finally diagnosed with Mature Pluri-hormonal PIT1-Liniage Macro adenoma. Adjacent vertebral artery and invaded sinus cavernous.
History- started noticing symptoms of insomnia, anxiety, depression, apathy and fatigue about 6 years ago. Sought medical treatment for these symptoms and other odd medical conditions such as significantly enlarged testicle and intestinal issues to name a few. Little or no benefit to use of psych meds so I stopped/was advised to stop about 3-4 years ago and I decided this was just me now and tried to deal with it.
About 7 months ago I began to have significant increase in anxiety, throat tightening, headaches, random sweats, tremors, heart rate jump up to 120 at rest and BP jump up for no reason. Shortness of breath, numbing of lips dizziness, brain fog, increase in irritability/frustration and over all feeling of unwell. Random-panic attacks set in and my wife took me to ER thinking I was having a heart attack. Never had anything like that. Thought I was losing my mind.
After 4 ER visits and numerous attempts at getting a diagnosis I was tested from everything to mosquito born illness to VD, eventually being relegated to having ADHD and PTSD which didn’t seem right to me. Finally after last ER visit I was given a MRI and determined to have a macro adenoma pituitary tumor. My surgery was delayed because I was originally told it was non-functioning despite symptoms. After getting to appropriate place for diagnosis I was determined to have hyperthyroidism, and later the tumor was determined to be pluri-hormonal.
I had surgery to remove the tumor and it tested stained heavily for HGH and TSH. Unfortunately due to its location near an artery not all of it was able to be removed.
Questions-
Three months post op and I’m exhausted, have muscle weakness with anxiety/depression/mood swings. Is this normal? Will this ever go away and I return to normal?
I started taking lanreotide. Does this shrink the remaining tumor and consequently will reduce symptoms?
Can hormones affecting anxiety just kick up for no reason? I have had baseline anxiety from this for awhile but sometimes it randomly kicks up for unknown reasons, last a bit and then subsides. I’m grateful to not have had any random panic attacks since tumor removal, but I get uncomfortable upticks in anxiety randomly.
Is there any medication I can take to reduce anxiety? I had been on lorazepam but no longer take it due to concerns of dependence and concerns it may interfere with accurate blood tests. Are there any anti anxiety meds that can be taken without concern over it altering blood work?
Anyone with remaining tumor or tumor adjacent an artery benefitted from radiation? If so what kind? Any side effects?
Not sure if this is my new reality or if this will get better. Despite these issues I have always been quite healthy. Hope, knowledge and acceptance are all powerful things. I’d be grateful if anyone can provide any or all of these.
Thank you, Shawn
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
I'm interested in your saying they didnt get all the tumor because it was 'near an artery'. A month ago I had a tumor removed from the bifurcation of my carotid arteries in my neck. The day before, they did a (w conscious sedation that was NOT FUN) a rerouting of blood flow away from the tumor, and took the whole tumor the next day. I'm not a dr so I have no idea why they couldn't have done this in your case, but maybe because your tumor was IN your brain?
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Hi, thanks for your response. I’m guessing it was because it was inside my brain, or just adjacent it. I saw the MRI and it’s a pretty confined space in there. Going through my nose likely hindered access. I’m grateful for what was done just wished it was all gone and put it behind me.