I suppose I should post this before I choose to ignore letting anyone know and running away. As some may have noticed I've had a post up for the last few months trying to get some answers on elevated serum prolactin levels over on the hrt section. Well after coming up with zip, I chose to on my own schedule a Humphrey Peripheral Vision Test for today. Loss of peripheral vision being a possible symptom of a developing prolactinoma (as it grows it presses on the optic nerve). I did this not so much to see if I had this, as I believed my rise in prolactin level to be just from estrogen incured breast development, I was going to just use this as a reference test for comparison to a later test.
Results not pointing in a good direction, I had zero negative errors, zero positive errors, but 17 fixation losses all falling in one small blind spot area for each eye. Still not too bad, could be beginning glaucoma, but then she said, "the problem is that the blind spot for both eyes fall within a straight line on the x axis (almost like someone used a ruler). The print out kinda looks like the crosshairs of a gunsight. Short explanation: blind spots both lined up with each other = possible pressure on optic nerve. World begins to collapse.......
She wants to confirm with another test in a week along with some kind of optic nerve test that may show if its glaucoma related. So next week will be one f__k of a week, this coming monday I'm scheduled for hernia surgery, then friday is this test, and the same day I get my blood test done to see what my new prolactin level is (wont know results till monday), then the next day tuesday is my hrt appointment.
My mind is sort of numb, I can't seem to let my thoughts to settle on the idea of continuing dressing the way I have just now started, knowing that without estrogen my looks will regress back.
I do not know how after 60 plus years, I finally find peace, only to have it pulled away. Things could go very bad, very fast.
I...I want to say something meaningful, but...I'm at a loss for words. I can feel the devastation in this post...I...sorry doesn't even begin to describe it, but...for what it's worth, I am sorry.
Eye problems from Hyperprolactinaemia are caused by the enlarged pituitary pressing against the optic chiasm. There are treatments but I don't know how they would interact with HRT but you can ask about dopamine antagonists.
Please look into them and keep us informed.
Ahh yes Wynternight, chiasm is the word I was trying to think of. Yes, I read about some drug that starts with a c.... something, cannot think well right now. Kinda scattered, THANKS
Thanks also Stryker, feeling came through.
Quote from: Newgirl Dani on February 14, 2015, 01:43:31 AM
Ahh yes Wynternight, chiasm is the word I was trying to think of. Yes, I read about some drug that starts with a c.... something, cannot think well right now. Kinda scattered, THANKS
Thanks also Stryker, feeling came through.
Cabergoline is the generic, Caberlin or Cabaser are brand names.
Elevated prolactin is a common side effect of wrong HRT regimen.
Sad you see others will abuse the HRT to get its effects.
Balance of hrt is the key in keeping prolactin levels also in balance.
What have your blood work levels shown?
Always a orchie as a good stepping stone is GCS is 10 years in ones future.
Hugs - it need not mean the end of everything you've worked towards but I hope you get the issue resolved favourably ASAP. :)
Quote from: Wynternight on February 14, 2015, 01:54:21 AM
Cabergoline is the generic, Caberlin or Cabaser are brand names.
Yep, thats the one. Thinking of your thread, we will be ok, just sometimes the tough seems too tough. I feel really tired, I'm off to bed after a good Star Ruby. ;) Take Care
Quote from: Newgirl Dani on February 14, 2015, 02:04:45 AM
Yep, thats the one. Thinking of your thread, we will be ok, just sometimes the tough seems too tough. I feel really tired, I'm off to bed after a good Star Ruby. ;) Take Care
Hugs. I'm going to bed too. Sleep well.
Dani, just hang on in there. Deal with one thing at a time. Don't forget to breathe.
Hugs
Adrian
Quote from: mrs izzy on February 14, 2015, 01:57:54 AM
Elevated prolactin is a common side effect of wrong HRT regimen.
Sad you see others will abuse the HRT to get its effects.
Balance of hrt is the key in keeping prolactin levels also in balance.
What have your blood work levels shown?
Always a orchie as a good stepping stone is GCS is 10 years in ones future.
Hi Mrs Izzy,
I and my doctor have spent the last 8 months perfecting my hrt regimen, and we are both in agreement that for now things are in good proportion. All blood workups to date have been excellent, with the exception of the prolactin, it startied at 15 in July of 2014 and was at 31.9 as of last November. 02/20/2015 less than a week I will have a whole new set of blood panels for my app on the 24th. My health is extremely important to me that is why I have had many many blood tests since the beginning of hrt last July. I exercise, walk, eat healthy, everything I can think of to have a successful transition, its just that this vision test looks bleak.
I will keep you in my thoughts. Please keep us posted and good luck. Don't give up hope just yet!
Best,
Cate
Quote from: Newgirl Dani on February 14, 2015, 02:15:10 AM
Hi Mrs Izzy,
I and my doctor have spent the last 8 months perfecting my hrt regimen, and we are both in agreement that for now things are in good proportion. All blood workups to date have been excellent, with the exception of the prolactin, it startied at 15 in July of 2014 and was at 31.9 as of last November. 02/20/2015 less than a week I will have a whole new set of blood panels for my app on the 24th. My health is extremely important to me that is why I have had many many blood tests since the beginning of hrt last July. I exercise, walk, eat healthy, everything I can think of to have a successful transition, its just that this vision test looks bleak.
Many women suffer from prolactinomas. It is a shame you have an issue with your optic nerve. I am not a doctor but if you get it treated perhaps your vision problems will abate.
I have a similar problem to you, in that I have very high prolactin levels. I am not sure if this is the reason why I feel extreme fatigue or not. The only definitive way to see if you have prolactinoma is to have an MRI. I have had an MRI to see if it is a prolactinoma or some other brain tumor causing the elevated prolactin levels. I get my results soon.
I was worried I would not get HRT because of this prolactin issue.
The medication normally reduces the prolactin levels effectively and if that does not work there is an effective medical treatment to reduce the size of the tumor surgically. Is crappy to think about though.
Anyway, try not to worry about it prolactinomas can normally be resolved.
Hi Dani, I am around the same years as you, so I understand how you feel that the rug has been pulled from right under you... I am truly feeling your frustration, potential disappointment and fear/worries.
I pray that this is fixable or manageable for you, good luck, hugs and best wishes and try to be positive (I know that is hard right now)... We're all here for you and love you to bits :-*
All my love Katy :-*
Dani I feel you. Don't let these coming weeks blind you from all the great things ahead of you babe.
You have this light in you xo Stay strong for us!
Love,
April
Dani, I'm at a loss of words for what your going through other than to say I hope they are able to get this resolved quickly and favorably for you. Has your doctor ruled out all other causes of the prolactin being out of wack because sometimes different hormone levels can be affected by other medical conditions. Good Luck and Hugs.
Mariah
hope things can be worked out. Definitely your eye sight is at the top of the list
Hey first things first,
let me say just how much this place means to me, you are all sweet & caring beyond words, I would not want to ponder what last night would have been like without the option of coming here, you are all treasures!
Speaking of last night, I was just too close to the sound of my world crashing down, at this moment in time my world has not yet gained that solid consistancy that allows for strong protection. Kind of like glass and I really felt like I was being cut to shreds. A good nights sleep did its job though, as it usually does, so now I can see this situation from a better perspective. Every possible direction a medical threat could come from has been explored in detail already during my last 8 months of cooperative work with my doctor. This situation was not delved into due to no reason as yet because numbers had not risen high enough to warrent it.
This vision test was not even recommended by my doctor (because of the last statement), this was completely due to my own research and wanting to 'know' for 'myself' that all avenues for problems are being checked. I suppose I could have hid my head in the sand and pretended to think all is good, but I'm just not one who can do that, my health is way too important.
The actual situation will clarify itself soon, then I can look into a reasonable alternative for resolution.
I thank EVERYONE! I love this place. Dani
Dani, I am sorry this is happening to you, hugs.
My last prolactin test in September was 25 and the reference is 2-18. My PA-C said everything looked great. I hope your eye test results was in error. Is there any chance you could go to an eye specialty center. In Philadelphia there is the Wills Eye Center and if I had a suspected issue I would go to the best to get answers.
Quote from: Cynthia Michelle on February 14, 2015, 02:20:05 PM
Dani, I am sorry this is happening to you, hugs.
My last prolactin test in September was 25 and the reference is 2-18. My PA-C said everything looked great. I hope your eye test results was in error. Is there any chance you could go to an eye specialty center. In Philadelphia there is the Wills Eye Center and if I had a suspected issue I would go to the best to get answers.
Hi Cynthia,
Thanks, hugs are cool. My doctor was already mildly concerned as my numbers went from a little over 14 to 31.9 in 6 months and she told me that if it went over 40 on this next test in a few days she would consider lowering my dosage. The eye center I go to is very high quality with extremely cutting edge equipment. Yeah I hope this was just an odd result due to never having this test before. The doctor is also going to give me a (if I remember right) tomography set of pics of the optic nerve to determine if it is the beginnings of glaucoma. Me personally, I just find it hard to believe that a growth of something like this could start, grow, and ultimately get large enough to press on the nerve, all in 6 months and at low dose at that, ya know? Weird. Well even if it is, I'm glad I did not find out about this test through checking links, then chicken out so I could put hrt first at 'all' costs. We have to be accountable to ourselves EVEN when we may be the only one who knows. Thanks again Dani
Have they considered the possibility of Macular Degeneration, Dani?
Quote from: Wynternight on February 14, 2015, 09:03:58 PM
Have they considered the possibility of Macular Degeneration, Dani?
Had to look that one up, had heard of it but was not sure what it really was. No, my vision is great toward the center, so all is good on that front. Thanks for the help though, one never knows all without input. Hope your sleep was as good as mine, I feel much better. Dani
One thing though, just before slipping into sleep last night I got the great idea of getting an early 'extra' prolactin test Monday morning before I have to show up for my surgery (the full spectrum blood tests are scheduled a few days after the surgery). I've read that prolactin levels increase with stress. I know this is in saying only but.....fingers crossed ::)
Just had that eye test repeated, she wanted to wait a week and redo. One more Humphrey test and an Optic Nerve Scan were done today and............... NO INDICATORS OF PROLACTINOMA TUMOR!!!!!!!!!!! Test was off I guess, and what it was showing was that I have the very beginnings of glaucoma, which my doctor and I already knew. I can BREATHE.
Thanks for all who gave words of encouragement, it helped ALOT! Dani
Wow, I am so happy for you. :)
Woo-hoo! Congratulations! Hugs all around!
So happy for you Dani!!! <3 Omg! I just read this whole thread for the first time! What an emotional ride!
That's such wonderful news Dani, so happy for you
Hugs
Katy :-*
Quote from: Newgirl Dani on February 20, 2015, 06:56:39 PM
Just had that eye test repeated, she wanted to wait a week and redo. One more Humphrey test and an Optic Nerve Scan were done today and............... NO INDICATORS OF PROLACTINOMA TUMOR!!!!!!!!!!! Test was off I guess, and what it was showing was that I have the very beginnings of glaucoma, which my doctor and I already knew. I can BREATHE.
Thanks for all who gave words of encouragement, it helped ALOT! Dani
**hugs** I'm very happy it worked out, Dani.
This is great news! I'm very happy for you!
NIIIIICE!!
Yay Dani!!!
You all are just too cool for words!!!!!!!!!!!! You also put me right on that edge of tears point, which is certainly easier nowadays, but still not easy YET.
If that news was not enough, just after leaving the eye doctor I decided to eat 'a bit' outside my normal and go for a little fast food (my trans fat gene has not dropped the fat part yet ;D ). Anyways I got a 'thank you ma'am' from a young girl when she gave my bank card back. Icing on the cake. Dani
Now that is a post for the happy thread or the knew you passed thread. I'm glad it was only a scare and that you will be OK.