I'm Scared . . .

[EvenStrongerNow]

I have an appointment with the Endocrinologist tomorrow at 4pm to discuss what to do about the pituitary tumor. I'm scared.

Also, I just dropped down to a quarter of the risperdal on the tapering plan Sunday. This Sunday I can stop taking it completely plus 100 hours til it's out of my system. It's just been a rough ride.

I really need support right now. Thanks for listening.

 

[JEKBreatheandBelieve]

Just wanted you to know that I am thinking of you and hoping that your appointment goes well.

 

[Deleted member 19804]

Hope your endocrinologist will bring good news and can put your mind at ease.
Thinking of you. Supportive hug if you'd like one :hug:

 

[billie]

Thinking of you (((hugs)))

 

[nomedic1]

Thinking of you evenstrongernow hope it goes well

 

[Hope4Now]

Am sending comforting energy to you. Keep breathing. Let some light into all the dark places of fear and doubt. You're strong.

 

[Meadowsweet]

Thinking of you.

 

[GWhizz]

@EvenStrongerNow really thinking about you and hope you're okay. I hope the endocrinologist can offer you the least invasive treatment option with the most successful outcome. I'm a surgical nurse so have a bit of experience in this area. The prognosis is usually very positive, though I understand how anxiety provoking all of this can be. It's quite overwhelming. I just had surgery myself about 2 months ago and it was a long process. Really wising you the best :-) hugs

 

[EvenStrongerNow]

Thanks everyone for the support. It means so much to me. The appointment went okay. My husband came with me this time. She wants to wait until I'm at least a month off of the Risperdal to see if my prolactin level returns to normal. If it doesn't, then there is a medication I can take to shrink the tumor and lower the prolactin levels.

If it returns to normal, then the tumor will be considered non-functional and will just need to be monitored. That would be really weird to just have it sit there but if it's non-functional, then it's non-functional *shrugs*

Other than that, she wants me to get an ultrasound to make sure my ovaries are functioning okay and go to a reproductive endocrinologist to get my menstrual cycle started. Apparently there is a medication for that too.

I'm down to a small quarter of Risperdal. In a few more days, I can stop taking it and then 100 hours after that, it should be all out of my system. Thanks again for the support.

 

[GWhizz]

Really glad meds can be used for the time being. I know what you mean about it being weird having it just sit there, though if it's benign and they can shrink it, that's better than invasive surgery with risks etc imo. I have a benign heart murmur which is treated with meds. It still 'sits' there, obviously cannot be removed, but I don't have any issues once I take the meds.

I hope you get your menstrual cycle back on track and can begin trying to have a baby after that. A friend of mine just told me yesterday she is pregnant, after years of trying etc. I'm so happy for her. You will have your little bean someday and make wonderful parents

 

[EvenStrongerNow]

Thanks @GWhizz. It sounds like she wants to just leave it alone if my prolactin levels return to normal after 3-4 weeks off the risperdal. That's the strange part.

 

[EvenStrongerNow]

I got an email from the doctor a little bit ago. She said that she had a neuro-radiologist look at my MRI and he feels there is no distinct tumor. We can continue the workup for PCOS and get the ultrasound. Her words.

I then asked, "Does that mean there is no tumor at all? And do you still want me to do more blood work after the risperdal is gone?"

She said, "Yes, he feels that there is no distinct tumor. Yes I want you to repeat the blood work. Even though there may not be a tumor, I want to make sure the prolactin is getting back to normal."

That sounds contradictory. In one sentence, she says there is no tumor and in the next she says, "even though there MAY not be a tumor"???!

I'm so confused by that, but I don't want to tell her that she has just contradicted herself. I don't want to be rude. My husband said it is clear to him that she is saying there is no tumor and we need to get an ultrasound done now. Thoughts?