Testosterone recovering after a prolactinoma

[perryw]

About two years ago, when I was 37, I had a physical and asked for a testosterone test mainly because I knew my dad had problems when he was about my age (he died in 1994). It was 108 ng/dL (range 300-1000). I guess that should have set off alarm bells, but the doctor wasn't worried and just told me to lose some weight and it'd be fine.

Fast forward to May of this year. In for another physical and ask for the same test ahead of time. 61 ng/dL. This time it was with the PA and I guess this was low enough to concern him. He ordered a bunch of other tests, including Prolactin. That came back as 1932 ng/mL (range 2 - 15), Testosterone was 52 that time. Uh oh. Off for an MRI. They found a 2.5cm tumor (macroadenoma) on my pituitary gland. Off to the neurosurgeon and I was scared shitless of needing to have surgery inside my head. My blood pressure before seeing him was like 200/140 or so! Thankfully, no surgery right now since the tumor secretes prolactin and is considered a prolactinoma.

To summarize the treatment & tests so far:
5/22 - Prolactin 1932 - Testosterone 52 - FSH .8 (range 1 - 12) - LH .6 (range 2 - 12) - Testosterone free 11 (range 47-244)
6/28 - Prolactin 1262 - I had taken 2 cabergoline pills at this point!
(continue with 2 per week)
7/28 - Prolactin 416 - after this appointment, raised to 3 pills per week
9/7 - Prolactin 129 - Testosterone 73 - Free T4 .6 (range .6 - 1.5) - been taking 4 pills per week since, the Free T4 (thyroid function) caught the endo's eye from a prior test since it's low end of normal, and it's also something my dad had problems with

The endo has said that my next appointment on 11/10 is about the time when we'll start looking at whether my testosterone is recovering on its own; I'll have more labs before the appointment. I'd really rather not get involved with having to take another medicine for the test of my life, but I'd also like to start feeling normal again.. whatever that may mean. Anyone been in a similar spot with one of these dumb tumors? Anyone have opinions on the chances of my testosterone recovering on its own after being screwed up for years (I reckon it took several years for that tumor to get to 2.5cm)? Any other thoughts?

 

[Vince]

Sorry to hear about all of your struggles. I have no opinions on your medical issues, hopefully someone with experience will reply.

 

[perryw]

I go see the Endo tomorrow and had my blood draw two days ago. I won't see the prolactin result until the appointment, but my testosterone is back down to 51 ng/dL. That's pretty disappointing. The cabergoline and lowering prolactin level haven't really helped the testosterone at all. I'm expecting the endo to want me to start on some sort of TRT. Bleh.

 

[CoastWatcher]

I go see the Endo tomorrow and had my blood draw two days ago. I won't see the prolactin result until the appointment, but my testosterone is back down to 51 ng/dL. That's pretty disappointing. The cabergoline and lowering prolactin level haven't really helped the testosterone at all. I'm expecting the endo to want me to start on some sort of TRT. Bleh.

I certainly understand your frustration, but TRT can be a life-changing intervention...if managed properly. You've reason to be discouraged, but there's just as many reasons to hope for an improvement in your health and lifestyle. Please keep us posted.

 

[JPB]

While you are making significant progress, your prolactin is still quite high so until it falls into the normal range I'm somewhat doubtful your testosterone will recover.

 

[FeelingLost]

Welcome to the forum Terry. Wow
I had to google prolactinoma ( a benign tumor (adenoma) of the pituitary gland) since I had never heard of it.

https://en.wikipedia.org/wiki/Prolactinoma#Treatments

Best of luck on your treatment hopefully you can get your other harmones back in balance.
Are you doing anything to help boost your metabolism. I would think that would help you fight this.

 

[perryw]

Ya sorry, I assume everyone knows what it is since I do. One Facebook group I was in for Prolactinomas was 90% female, so I sort of feel like I'm wandering blindly as a guy with one. There's anecdotes and small studies here and there, but... yea, doesn't feel too common to me.

I wish I could boost my metabolism! Weight gain is out of control. But, no one has wanted to do surgery on my head yet, so it could always be worse...

 

[FeelingLost]

Ya sorry, I assume everyone knows what it is since I do. One Facebook group I was in for Prolactinomas was 90% female, so I sort of feel like I'm wandering blindly as a guy with one. There's anecdotes and small studies here and there, but... yea, doesn't feel too common to me.

I wish I could boost my metabolism! Weight gain is out of control. But, no one has wanted to do surgery on my head yet, so it could always be worse...

I wish I could offer some advice. I am rooting for you and hope you can get this prolactin under control.

Will they let you get on a trt program? That should help your overall mood and get your body working to help fight this.

 

[CoastWatcher]

I recall another member here at EM who did have the surgery associated with this issue. There have been others who, like you, are being asked to deal with it medically rather than pursue surgery. We all do hope you'll see progress.

 

[perryw]

Well, the idea is to get the prolactin under control and see if the “pathways” start working and my body starts to make testosterone on its own. I expect the prolactin to be way down tomorrow because I've been on four pills of Cabergoline a week for the last two months (seems to be a high dose for Prolactinoma treatment, thank god for GoodRx). But the low T from this week is disappointing. My cortisol was also at the lowest-possible-while-still-normal, which I guess can indicate the pituitary gland is struggling.

The surgery isn't always good for these things... seems there's a pretty high recurrence rate a few years down the road.

I can feel the cabergoline is making me grumpy, and some other minor complaints. So it'd sure be nice to be able to back down the dosage. Fingers crossed.

I will try to keep documenting here, for the next weirdo like me!

 

[FeelingLost]

I wonder if there are any drugs out there to help reduce prolactin? Even if it's an off label treatment like AI for E2.

When TRT patients have a high E2 we have Aromatase inhibitors (AIs). Which can be usedhttps://en.wikipedia.org/wiki/Off-label to reduce estrogen conversion.
https://en.wikipedia.org/wiki/Aromatase_inhibitor

 

[perryw]

I wonder if there are any drugs out there to help reduce prolactin? Even if it's an off label treatment like AI for E2.

Yes, that's what cabergoline is used for. It is in a class of drug called a dopamine agonist. The Doc explained how all that is supposed to work, about receptors and pathways and such, but my eyes sort of glazed over. https://www.ncbi.nlm.nih.gov/pubmed/12036422

 

[perryw]

The prolactin level was down to 37 (5 - 20 normal), which is great. But not great enough to get my cabergoline dose cut down. Another 3 months of 4 x .5mg per week. Shit's expensive, so I was hoping the dosage would go down. And I get to go for another MRI to see if my tumor has shrunk at all.

I am going to start on TRT. 200mg every 2 weeks she says. I questioned injecting every 2 weeks and not weekly or every 3 - 4 days, and she didn't seem concerned. I've read enough from y'all that I think I'm going to try to figure out how to do the injections more often. I'll go back next Friday to see the nurse to learn how to give myself an injection.

She mentioned how sperm creation can be suppressed by TRT, but since I'm single and don't have any plans for kids then she doesn't seem worried. I mentioned HCG and she said I'd have to go see a reproductive endo if I ever needed that as she won't write for it. She mentioned that estrogen levels could go up (I already have some gynocomastia from the prolactinoma), but didn't mention the Aromatase inhibitor. So just a "basic" testosterone treatment for now. I'll have another blood test in 6 weeks, then go back to see her at the end of February.

 

[Systemlord]

The prolactin level was down to 37 (5 - 20 normal), which is great. But not great enough to get my cabergoline dose cut down. Another 3 months of 4 x .5mg per week. Shit's expensive, so I was hoping the dosage would go down. And I get to go for another MRI to see if my tumor has shrunk at all.

I am going to start on TRT. 200mg every 2 weeks she says. I questioned injecting every 2 weeks and not weekly or every 3 - 4 days, and she didn't seem concerned. I've read enough from y'all that I think I'm going to try to figure out how to do the injections more often. I'll go back next Friday to see the nurse to learn how to give myself an injection.

She mentioned how sperm creation can be suppressed by TRT, but since I'm single and don't have any plans for kids then she doesn't seem worried. I mentioned HCG and she said I'd have to go see a reproductive endo if I ever needed that as she won't write for it. She mentioned that estrogen levels could go up (I already have some gynocomastia from the prolactinoma), but didn't mention the Aromatase inhibitor. So just a "basic" testosterone treatment for now. I'll have another blood test in 6 weeks, then go back to see her at the end of February.

Your doctor just doesn't know much of anything about actually administering TRT, she's not concerned because she doesn't know what she has set you up for, failure! It's the same thing as a soldier going into battle with no combat experience, she has none. If you go forward with this injection every 2 weeks you're going to feel horrible by the second week and eventually you get tired of it and change doctors, why don't you just do that now and save yourself the agony?

I promise you you will have elevated E2 and you'll feel like pure craps!

 

[perryw]

Because I don't have unlimited money to be paying $200 office visits? I'm not sure who else to go that can treat me for low testosterone and a tumor in my head, ya know? The tumor most likely caused the testosterone to quit being made, and I'm honestly more interested in getting that thing taken care of at this point. And these ****ing doctors visits are expensive and the medicines are expensive and MRI's are expensive and labs are expensive. I've blown through my HSA over the last 5 months, so all this shit is outta my pocket until I hit that $5k deductible, but it's November so that shit starts all over soon. So I play the cards I can afford. I'll figure out how to break up the dose. Besides, I already feel like crap, so that will be no real change.

 

[Systemlord]

Because I don't have unlimited money to be paying $200 office visits? I'm not sure who else to go that can treat me for low testosterone and a tumor in my head, ya know? The tumor most likely caused the testosterone to quit being made, and I'm honestly more interested in getting that thing taken care of at this point. And these ****ing doctors visits are expensive and the medicines are expensive and MRI's are expensive and labs are expensive. I've blown through my HSA over the last 5 months, so all this shit is outta my pocket until I hit that $5k deductible, but it's November so that shit starts all over soon. So I play the cards I can afford. I'll figure out how to break up the dose. Besides, I already feel like crap, so that will be no real change.

There's alway Defy Medical, they will set you up for success without all the bull. You don't even have to travel.

 

[FeelingLost]

The prolactin level was down to 37 (5 - 20 normal), which is great. But not great enough to get my cabergoline dose cut down. Another 3 months of 4 x .5mg per week. Shit's expensive, so I was hoping the dosage would go down. And I get to go for another MRI to see if my tumor has shrunk at all.

I am going to start on TRT. 200mg every 2 weeks she says. I questioned injecting every 2 weeks and not weekly or every 3 - 4 days, and she didn't seem concerned. I've read enough from y'all that I think I'm going to try to figure out how to do the injections more often. I'll go back next Friday to see the nurse to learn how to give myself an injection.

She mentioned how sperm creation can be suppressed by TRT, but since I'm single and don't have any plans for kids then she doesn't seem worried. I mentioned HCG and she said I'd have to go see a reproductive endo if I ever needed that as she won't write for it. She mentioned that estrogen levels could go up (I already have some gynocomastia from the prolactinoma), but didn't mention the Aromatase inhibitor. So just a "basic" testosterone treatment for now. I'll have another blood test in 6 weeks, then go back to see her at the end of February.

129 to 37 you are knocking the hellout of that prolactin. Nicely done. I was also nice to hear you are going to get some T which should really help your mood and metabolism to fight this. PM incoming.

 

[perryw]

I had my second MRI on 11/20 and just got the results back. The tumor has shrunk from 2.5 x 2.5 x 2.6 to 2.1 x 2.1 x 1.0cm. By volume, that's like a 75% decrease? Did I do that math right? https://i.imgur.com/v4mJWUo.png is the report. So the cabergoline is really working. That makes me feel better than any of the medicines!

 

[CoastWatcher]

I had my second MRI on 11/20 and just got the results back. The tumor has shrunk from 2.5 x 2.5 x 2.6 to 2.1 x 2.1 x 1.0cm. By volume, that's like a 75% decrease? Did I do that math right? https://i.imgur.com/v4mJWUo.png is the report. So the cabergoline is really working. That makes me feel better than any of the medicines!

Thank you for updating us. Congratulations on your success!

 

[perryw]

I had my testosterone checked on January 5. It's up to 464 ng/dL now (Nov 7 test was 51, first shot Nov 17). That's doing 100mg once a week.

I have ordered HCG on my own and am waiting on that, but I'm going to see a urologist in early February and see if I can get it prescribed and also start monitoring estrogen levels.