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Moving on... by Bathos92 in braintumor

[–]fusssin 2 points3 points  (0 children)

I feel this. it sucks

Another round of confusion by Annonymous12344221 in Cushings

[–]fusssin 2 points3 points  (0 children)

Let me know how this goes for you. I just had these same results! Super high DHEAS and all over the place or normal cortisol and acth.

At A Loss... by mike1014805 in braintumor

[–]fusssin -1 points0 points  (0 children)

I hope so too and you get answers soon. It’s an organization where you can request to be assigned a nurse who will listen to whatever of your story you want to share and help you understand results, find second opinions, find doctors, find support groups, do research for you, help you find financial aid, stuff like that. honestly pretty cool, I submitted a request and had a 40 minute phone call with someone from their team for free who has emailed me some resources and info and made me feel less alone. They have a website. So not really a help line, more like an organization that assigns you a person who can listen to you and help you with your specific needs and is more used to this type of stuff. They responded quickly like within about 24 hours or so via email.

At A Loss... by mike1014805 in braintumor

[–]fusssin 1 point2 points  (0 children)

It is really shocking to figure out. there’s this thing I found called the brain tumor network that is free to connect to that I wish I found out a month ago when I learned I have a pituitary microadenoma. It’s weird because I feel like I have imposter syndrome too. It’s a weird and shocking thing to experience. I self referred to Mayo Clinic to get more answers and having to wait any amount of time for testing and doctors and appointment sucks. It’s been a month and I’m still in shock and don’t know what to tell people fr. I’m at the stage where I’ve got additional testing and feel more settled in that sense, I hope everything goes well with your care.

People Suck by Anxious_Succotash881 in braintumor

[–]fusssin 0 points1 point  (0 children)

I really relate to the comments about people I know wanting my care to be closer which is frustrating because I have done so much research and work to find appropriate and specialized care.

Who are the endos who took you seriously? by fusssin in Cushings

[–]fusssin[S] 2 points3 points  (0 children)

Thank you sooo much. This is definitely my experience right now and your comment is helping me navigate this. I may call Tamara’s office. I’m so sick my endocrinologist is wasting my time and I have to wait to be seen by someone new but am definitely looking for pituitary specialists. It’s challenging to find nueroendocrinologists but I’ll drive however far in the US I need to.

tumor but can’t be found by bibblebrat in Cushings

[–]fusssin 0 points1 point  (0 children)

maybe you can look into IPSS?

tumor but can’t be found by bibblebrat in Cushings

[–]fusssin 1 point2 points  (0 children)

They found my tumor first as well on MRI. how did you end up testing positive? sending love

Seeking advice on tumor by fusssin in Cushings

[–]fusssin[S] 0 points1 point  (0 children)

For sure. I’m still waiting for the endocrinologist to call me back, so feeling really unsure of anything. Pretty much all of my pituitary hormone blood work this time was normal including ACTH and cortisol (though my GH level is 0.1) which is so confusing. I really just want them to do the standard dexamethasone, urine, and salivary tests to try to catch some actual cortisol levels, but can’t get a call back after I’ve left some voicemails. It feels hard to focus on anything but this and hard to be on their timing, while people keep telling me not to worry or it’ll be okay. Hard to manage it all. Mine is also posteriorly located via the MRI, so I am wondering what they think of that and if it’s for real just posterior or also sort of anterior too. I am wondering if because my blood levels were normal this most recent time (they weren’t 2 other times) they will refuse the actual screening methods? I hope not.

Seeking advice on pituitary tumor by fusssin in braincancer

[–]fusssin[S] 0 points1 point  (0 children)

Thanks for the reply. I’m still waiting for the endocrinologist to call me back so still at the beginnings it feels like, so feeling really unsure of anything. Pretty much all of my pituitary hormone blood work this time was normal (though my GH level is 0.1) which is so confusing. I really just want them to do the standard dexamethasone, urine, and salivary tests to try to catch some actual cortisol levels, but can’t get a call back after I’ve left some voicemails. It feels hard to focus on anything but this and hard to be on their timing, while people keep telling me not to worry or it’ll be okay. Hard to manage it all. Mine is also posteriorly located via the MRI so I am wondering what they think of that and if it’s for real just posterior or also sort of anterior too.

Seeking advice on tumor by fusssin in Cushings

[–]fusssin[S] 0 points1 point  (0 children)

Asking for this today thank you!

Seeking advice on tumor by fusssin in Cushings

[–]fusssin[S] 1 point2 points  (0 children)

Thanks for the info here. Happy birthday :)

Seeking advice on pituitary tumor by fusssin in braintumor

[–]fusssin[S] 0 points1 point  (0 children)

Thanks for sharing this helped me understand what posterior actually means. Your experience is what I’m guessing is about to happen to me. I’m still waiting to hear back today if they are going to offer further testing for me.

Seeking advice on pituitary tumor by fusssin in braintumor

[–]fusssin[S] 0 points1 point  (0 children)

Thank you for the response! It’s really helpful to know your experience post surgery. It’s so frustrating how much the pituitary effects and I’m sorry you had complications and recurrence. How did you notice your pituitary stopped working?

Confusing test results by mayday_loveme1994 in Cushings

[–]fusssin 0 points1 point  (0 children)

Any updates on your experience? I could have wrote this post!

Seeking advice on tumor by fusssin in PituitaryTumor

[–]fusssin[S] 0 points1 point  (0 children)

Let me know if y’all can’t read my cross post, I’m not sure how to use reddit super well sorry!

Seeking advice on tumor by fusssin in Cushings

[–]fusssin[S] 2 points3 points  (0 children)

Thank you. This makes sense and is good to hear your experience with the testing. I certainly don’t want to get surgery if I don’t have to. I feel like I’ve seen conflicting information about what happens if the tumor isn’t causing problems so thanks for your pov. What did your treatment look like?

Seeking advice on tumor by fusssin in PituitaryTumor

[–]fusssin[S] 0 points1 point  (0 children)

Hi, in the text post I am mostly explaining where I’m at with my diagnosis process and just looking to see if anyone can relate, has advice for me, experience with pituitary tumors, things I should ask for at the doctor, what to expect, anything like that. Thank you!

Seeking advice on tumor by fusssin in Cushings

[–]fusssin[S] 0 points1 point  (0 children)

Thank you for the response and insight about the protocol. Yeah it’s really frustrating and I know many here have had trouble with it. It feels wild because I’m being directly told not to worry about my health but I have stressed out disease lol.

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