Random Update and ramblings....

[trixi282]

I'm super tired so forgive me if this is somewhat incoherent... I've been up since 4:15 am - and not because of a child. My children were with H at his grandparents house last night, and I had the house to myself.



I had an MRI this morning, because my prolactin levels are elevated again. I have yet to get a period since E was born almost 14 months ago.... (not that I'm complaining about that fact!). I stopped pumping back at the end of September/early October - and still no period.  I've basically been med free since stopping pumping (and even then was only taking a multi-vitamin and
fenugreek)


So, before starting any meds or anything my OB/Gyn wanted me to see an Endo just to be sure we have all our bases covered - especially since my OB/G treated it in VA. My new doc just wants Endo to be involved, and I completely agree, given my history.



So this morning I had a 6am MRI scheduled at a hospital 30 minutes away.... and I had to be there 30 minutes prior to the appt. So I left my house at 4:50 this morning!
 No coffee places are even open that early.


Anyway - this is already too long.... but I already got a call from the doc's office and they got the results already. I have a pituitary tumor. I've had 2 MRI's in the past that didn't reveal anything, so I wasn't really expecting anything. But she said sometimes with the meds the tumors shrink and are not visible. So she thinks I may have had one all along, but since my MRI's were done while I was on meds it was not visible.



It's 3cm. And she already called in an Rx to start the meds. I have to have blood work done again in 3 months, and I'll see her (probably after more blood work) again in 6 months to follow up. Most likely no surgery or anything just meds to control it. Since I found out about my Hyperprolactinemia years ago I've had to be on meds to control it, when I try to wean off of them my levels would shoot up again. 

So I will re-start meds, and hope that gets my levels down into a normal range again.  And then who knows when I'll have to have another MRI to see if it's shrinking or not.

I really wasn't expecting there to be a tumor (Prolactinoma) since there hasn't been evidence of one before... I'm so tired, I guess I'm just shocked.

Anyway - just sharing for shits and giggles.

[bliz1712]

Your post was very coherent for no coffee lol

Sorry you got that news. Am I reading it right that it's considered a benign tumor? The pituitary tumor was one of the things my doctor thought I had with all my symptoms and medical issues. I hope the meds work and it's uneventful for you and your family for awhile. I think you've been dealt enough lately!

[mrsrek10]

I don't even know what to say...I was expecting an E update! My main thought is "they are leaving it?!"...so is it benign??? Please say yes.

[somethingcleverer]

Big hugs! That's scary news but I'm glad your doctor got the endocrinologist involved and did the mri.

I've had a few people at work with these types of tumors that do really well on the medication, which I'm sure you know since you've been in it in the past.

[trixi282]

Jul 18, 2016 10:59:52 GMT -5 bliz1712 said:

Your post was very coherent for no coffee lol

Sorry you got that news. Am I reading it right that it's considered a benign tumor? The pituitary tumor was one of the things my doctor thought I had with all my symptoms and medical issues. I hope the meds work and it's uneventful for you and your family for awhile. I think you've been dealt enough lately!

As soon as I left the hospital I went to caribou and got a large coffee and drank it on the way here.... since then I've had a lot of water too (to flush the contrast).  I'm about to get a coke with my lunch!

And yes prolactinomas are typically benign - they don't really test them as long as they reduce with meds and aren't a problem then. 

I've had other blood work too, to test for early menopause, and what's called Macroprolactin.  Macroprolactin is when you get false high readings of the blood test for hyperprolactinemia because your blood reacts to the additive used to test.  But since both of those came back normal, she ordered the MRI.  

So yeah.... now for meds again.  Hopefully my body responds as it usually does.  Who knows when I'll have to have yet another MRI....  Like I haven't had enough imaging in the last 2 years!

ETA: mrsrek10, see here!

[summergirl1211]

First of all, I'm so frustrated for you that all of this is happening while you're so busy with work and life in general. It's seriously the last thing you need to deal with right now! Also, I agree with the ladies above. I'm guessing they are sure it's benign and will just treat to shrink it right? What if the meds don't work, could surgery possibly be involved? Anyway, I'm sending you lots of hugs. I really hope the medication can take care of it and you start feeling better. Hang in there lady.

[roo1582]

Well, as if you needed this on top of your busy life! I'm glad they think its not an issue and I hope the medication does it's job of shrinking the tumor.

[laurski81]

Ugh girl! I am so sorry you are dealing with this on top of everything else. Hopefully the meds do their job and you start feeling more like yourself soon. So many hugs girl.

[trixi282]

summergirl1211 , yeah, the meds typically shrink it and of course bring the levels back down. Hopefully that happens. So I'm not sure if/when i might have another MRI to check the size. But I'll be having plenty of blood work done in the next 6-12 months to check my levels. I assume if they lower, she may check again in a year... maybe sooner. Not sure. Aside from blood work in 3 months, I don't see her until January again. But if it doesn't shrink there is a slight possibility of surgery, or in some rare cases radiation.

Thanks ladies for all of your support. It's seriously ridiculous what all goes on in my life sometimes. This is technically minor, but it feeds so many other things.... more doctors appointments, more blood work, imaging, etc. It also affects so many other small things - libido (no wonder I never want to have any ST), periods, it explains the rise in my headaches again, vision problems, which I just started to feel recently and it is a possibly side effect of the tumor.

I can deal with this... it just sucks.

[summergirl1211]

Sending lots of love and hugs trixi282. I know you are strong enough to get through anything, but you and your family definitely deserve a break!

[mightybee]

Hugs girl!

[junkytrunk]

I've never heard of that before, but I'm glad to hear you have a treatment plan in place! I hope the meds work! Hugs!

[nursedesi]

Oh man. It sounds like you've had a kinda crazy day already. Hopefully the meds will work and you won't have to do anything else.

[traceyt07]

trixi282 ugh. As if you needed one more thing in your life that needs attention. Damn tumor. I hope the meds start shrinking it asap. Huge hugs momma.

[xanthepants]

Oh hon - this isn't fair. You have so much on your plate right now, you don't need another thing. It doe seem to explain a lot of things though potentially. I'm so sorry. I hope that the treatment plan works and that you can be back to yourself soon and that the extra appts don't cause too much grief. Sending you extra hugs.

[vanessalc]

Oh, that sucks! I hope it responds nicely to the meds.

[starfishy]

Oh that stinks. I'm happy to hear they can control with meds.
Sorry that everything is so crazy in your life right now. I hope things calm down soon