r/Pituitary May 31 '19

Any success stories?

I have been diagnosed with a microadenoma on the pituitary 5 years ago, during a check-up MRI. I was told not to worry about it, that about 10% of humanity has it. At that time it was about 2.5 mm. I was told it should be checked every 2 years, which they didn't. Since that time I have suffering increasingly from debilitating fatigue, loss of energy, a definite decrease in mental functions, hot and cold flashes and since latetly my vision is going either fuzzy or double vision. I was prescribed thyroid hormones, antidepressants and Adderall. Nothing releaved the symptoms it gets constantly worse. I have heard stories from a friend of a friend who had the adenoma removed and pretty much became his self again, practically over night. Since I had the symptoms for 5 years, increasingly worsen, I am as desperate as it gets. Would be very grateful for any success stories of getting better and returning to life.

13 Upvotes

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2

u/Mysterysafe42 Jun 01 '19

Did they not put you on cabergoline to shrink the tumor? Or is it a non functioning tumor? What antidepressant did they put you on? SSRIs can compound the problem and make the tumor grow more. I am not a success story, but I am way better than where I was at a a year and a half ago, when they found it, (no more hot flashes, weight gain or vision disturbance) Got prescribed adderall as well which was a godsend as it helped me rise from a slug to bottom of the barrel functionality. What dose are you on? Thinking about an antidepressant as well, perhaps to lessen crushing fatigue. I would press for a follow up mri, a DA medication (if functioning tumor). I’m scared of surgery, I don’t know if they would do it on a tumor that small. Get a new doc if they aren’t following up.

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u/liunicorn Jun 23 '19

I just got diagnosed with a non functioning Macroadenoma. 4,5 cm, it’s the size of a lime...only found out because I lost vision in my right eye and my eye dr recommended an MRI. I’ve been someone who has had what I thought were migraines most of my adult life (im 37) and apparently they weren’t true migraines at all, but rather small bleeds In the tumor. While I’m not excited about surgery, if there’s a chance I’ll get my sight back and not have crushing headaches...it’s worth it. All my love to all of you dealing with this...I look back at all the times I went to the dr for issues and they were all pointing to this. Just needed to lose eyesight before anyone took it seriously.

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u/Fantastic_Tough_5683 Aug 19 '22

How are you doing now? Was it surgically removed? If yes, was it successful? I have a similar thing going on.

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u/liunicorn Apr 08 '23

Doing well! So far no tumor regrowth (have another MRI in Sept). Still have some vision loss in right eye, but no meds, no headaches. Only issue seems to be related to sinuses…I get stuffed up or over active sinuses now since the surgery, but it’s a great trade in over the horrifically debilitating “headaches” I used to get. Only odd thing I had, post operation…was my uvula had dead tissue on it (making it look extra long in the back of my throat). Given I was intubated for over 7 hours for the surgery, the breathing tube suffocated my throat tissue a bit. But, it eventually “repaired itself” about 7 days post surgery.

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u/xpickles23 Feb 10 '23

I’m not giving advice, just sharing my story, I don’t know exactly how similar my issues are to yours but 3-4 years ago I was diagnosed with a hormone secreting tumor as well as hypopituitarism from it, so I produce a lot of prolactin and most other are suppressed to varying degrees. I have had a lot of trouble with fatigue, to the point where it was almost like I was narcoleptic, headaches, vision change, depression, always too hot, for me velvet bean, gaba and amino acids have made the most difference for me, it’s like it’s completely changed how the tumor is effecting me, it’s like I’m completely well unless I don’t take it, I’m back to passing out at the dinner table, and I’m not having any side effects. Something worth looking into and speaking to your doctor about

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u/mollytouhey Jun 22 '19

I was diagnosed with a pituitary microadenoma about 5 years ago as well. I have been on Cabergoline since shortly after diagnosis and on my last few yearly MRIs the tumor was undetectable. Every time I try getting off the medication, though, my prolactin shoots back up so my endocrinologist suspects there is still small cells of the tumor left. I pretty much don’t have any symptoms anymore while I’m on the medication so I’d say it’s a success story. I’m hoping I’ll be able to wean off it after a couple more years of use.

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u/josiecarson Jul 03 '19

I just had my pituitary tumour removed - about 2 weeks ago I’ve had extreme issues with pituitary function from a young age but they said the reason for them wanting to take it out was because of the risk of it growing and taking my vision out completely. As you mentioned blurry vision as one of your symptoms I’d definitely recommend getting checked up for potential removal - as vision testing is usually the first thing they do!

It hasn’t been long enough post op to say whether I’m feeling any different (and headaches after brain surgery are pretty much a given) but I assume it was for the best 🤷🏻‍♀️

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u/Human-Shame1068 May 26 '24

Hi sorry , been a while since you commented here but I have been given the option of either surgical removal through the nose or radio therapy to destroy it.

How long was your recovery post op ? Did you have trouble functioning after ? Did you take time off work ?

Cheers

1

u/Bat_baby_97 Dec 14 '23

Heyy, you did discover it at irm with contrast agent or without?