Hi guys

I have just turned 21 and was Diagnosed with this 2 weeks ago... I am having my mri Scan tomorrow :). I have not ever had any facial hair and my voice has not broken... I decided to get a check up because of this and I have very low testosterone and very high prolactin. I must of had this through pubity because I was always very quiet. Hope I dont get any Side effects :(.

The problem is that I dont really know what it is like to be a man... Im quite worried if it will change my personality..... Its good to know I am not alone :)

.

Hello all,
Diagnosed with a macro prolactinoma. currently on ,5 cabergoline
4 times a week. prolactin level 2000ish.
the side effects of the medication are horrid. Fatuige, a roller coaster of extreme emotions. anger followed by weaping, flu symptoms, sleep loss. severe dread and hopelessness. Hope things get better.

FXST123, your dose seems really high to me. Even .25 mg twice a week made me so paranoid that I'm switching to Bromocripine. Let your endo know about the problems you are having ASAP. This is serious.

Adamint7, welcome to the group. You aren't alone. We're here for you. Stay in touch.

Thanks Turtleman,
It Has been a pretty intense experience for the last 3 +weeks.
Sked to see endo on Fri the 6th. I did make 2 calls to the office and talked to the office staff and they seemed nonempathetic and not too knowledgeable or concerned. I asked them to have the Dr. call to verify the side effects.Never received a call. Reading what others were going thru prior to starting the medication helped to give a headsup for what was in store.
In all the forums and posts that I have searched, I have not read of anyone taking more than 2 to 3 tablets per week so I was concerned.
The Endo said that over the years he has treated about 50 Prolactinoma patients so I felt confident that I was in good hands. Yet another lesson of trust yet verify.
I am very Thankful for the information, validation and support this forum has provided in dealing with this experience. It has been a saving grace in knowing that I'm not headed for the booby hatch. I'll update after the 6th of May.

Hi Guys, its great to see activity on this post as we are quite rare cases after all, very good to hear what everybody is going through and amazing how everybody is different. I started on Brom, but found although it had a good effect on levels it made me so drowsy all day until the evening that i couldnt get anything done. after 3 weeks switched to Cabergoline, had 3 fantastic days then hit a wall after long weekend and another .5 mg tablet no imrovement until wednesday now feeling much better, endo says will take 5 weeks to stabilise. have had some periods of depression and hoplesness as well as slight paranoia and trouble getting to sleep but i reckon it just takes time to adjust, am sticking with it as no meds or Brom is not an alternative. GL on the 6th FXST123 let us know. btw im sure my endo said i have Prolactin of 7000 and im only on 1 .x 5mg per week.

Hi guys!

My name is Greg, I am 31 and I have a 4mm prolactinoma that was diagnosed in 2000. I have been on cabergoline in the past (0.25mg twice weekly), with no side effects. However, I have also had low testosterone--and for years had been frustrated that my endos have never put me on TRT. I have been without health coverage for the last 4 years as I was in school and no student coverage was offered.

Finally, last week I had my first endo visit in several years and my labs just came back. I was horrified to see my prolactin and testosterone levels. Prolactin was 82 ng/ml (3-18 being normal), and Testosterone was 20 ng/dl...yes...20. These are the highest and lowest values I've ever had.

Obviously, these levels aren't comparable to those of you with macroadenomas, but I was curious to hear if anyone has had experience with TRT and low testosterone. I have been told that this likely began before puberty, which stunted secondary sex characteristic development, but not growth (I am 6' 4"). I was also told that I am incapable of having children...which was a low blow (pun intended).

Anyways, I am thankful to have found a group of others going through the same struggle. I look forward to hearing from, and getting to know all of you.

Best regards,
Greg

Hi Greg,

TRT is helpful. I've tried patches and gels. The Androgel pump is effective and most convenient. Getting the prolactin level down will have the most effect, although the side effects of the meds are rough. We are here for ya.

Thanks for the information, turtleman! I'll be talking to my endo on Thursday, and see him in person next Thursday--I'll keep you posted on what happens. I'm assuming I'll be placed on both cabergoline and TRT. I'm SO excited.

Had latest levels tested a week ago and should know more within 48 to 72hrs.
Had to stop cabergoline due to the mental effects that were becomming problematic. The physical effects are difficult enough.
Took last dose wed at 4am and lasted approx 30 hrs. whew weee. going to try a half dose and see how that works along with the endo's recommendation and revised treatment plan. Taking .5 four times a week for 5 weeks has caught up a bit and just needed a break. I understand what some folks mean regarding not being able to tolerate Cab. Some do and some don't.

Has anyone here had a diagnosis of depression and anxiety PRIOR to being diagnosed with a prolactinoma?

OK,
This is almost sureal and I can't believe this is happening, Very frustrated with Endo right now. Was in to see endo on 5-6-11 to get Prolactin levels checked after 5 weeks of Cabergoline.
I have just found out through the Dr.'s office and confirmed with the lab where I went to have test done, that a Prolactin test was LEFT OFF the orders that I brought to the lab.
I went to the lab that did the test and requested a copy of the orders to see if this was in fact true. Yes siree, a major oversite MAJOR !
I really feel like I headed for the mental ward because of falling through the cracks with all of this.

It all started out 7 months ago when Neurosurgon overlooked a prolactin lvl of 2000+. At that time I complained of fatuige and headaches and neurosurgon said, go home and take OTC asprin etc and consult with a headache specialist and my general Dr. for testoserone replacement. See you in 6 months.

So off to the General DR. i went, he reviewed labs with high prolactin but never put 2 and 2 togeather of low testosterone, thyroid and macro tumor with high prolactin. I was referred to a neurologist for headaches. he had the lab work with all the same as above. Never caught it. returned to neurosurgen after 6 mos because my job and the administration that oversees my saftey sensivitive position sent me a letter to explain elevated prolactin, tumor and treatment plan.

Want back to Neurosurgen who missed level, she freaked out and sent me to Endo. Also General Dr. said because no range was given on labs that a 2000 prolactin was normal.

Neurologist missed it, and even a respertory Dr. who works with the agency that requested additional info said the these tumors burn themselves out. With Micros that is possiable but Macros don't accroding to Endo. That Dr. questioned me if I really needed the treatment of Cabergoline. Now the Endo dropped the ball by sending me for a prolactin test after 5 weeks of Cab and forgot to put the prolactin test on the orders for the lab.

Sorry for the rant and venting here but it feels like I am falling through the cracks and really starting to question the competence of the health care system. These Dr.'s all seem to be overloaded with so many patients the the quality of health care is suffering.
I will say a prayer for all of us.

FXST123-- I empathize with your plight. I am so sorry that this has happened to you. I have had similar experiences in the past, which is why I'm now on my 4th endocrinologist. Are you tied to a specific provider, or do you have the option of looking for another endo in your area? There is NO reason whatsoever that a 2000 prolactin level (and I'm assuming macroadenoma) should or could be overlooked.

My similar experience was with testosterone replacement. When I began seeing an endo in 2000 my T level was in the low 200s, and prolactin was also in the 200s (microadenoma) so my endo put me on cabergoline which helped, but my T never rose significantly. So for the several years I've been battling with my doctors to get put on TRT, which they wouldn't because of my age.

Well, 4th time must be the charm, because I've finally been put on TRT (and also found out that I have hypothyroidism--so on HRT for that too) but now I'm confused, because now he won't put be on cabergoline despite a prolactin level of 89 and a lactating chest.
SO CONFUSED!

Hang in there, buddy. We'll all work through this together.

Greg

Thanks Greg,
Sounds like you have been through the ringer too.
The Endo has been a lot of help other than disregarding some of the side effects of the Cab. The Neurosurgeon dropped the ball but not going to go negative on that LOL...

After 5 weeks of Cab, Prolactin levels dropped from 2000 to 52, so Endo said 1/2 pill 4 times a week. I am having some real trouble tolerating the cab, If i had too, I could deal with the physical side effects it is the mental ones that I just can't do anymore. So I am taking a break and getting off the meds. The sad part is Endo says could try bromo (Very leary of that due to the feedback from others) or the only other option is surgery, and I may be wrong but, as a male with a Macro the success rate is 30 to 50% and that's with no complacations.
BTW, I am finding something common with these prolactinomas is Low T, Hypothroidism. I have been on Synthroid for 20 years and have a Testosterone serum of 133.
I hope you can get the relief you need as well. Keep us updated too and thanks for the support.