Pituitary Tumor Found Via MRI - Input on next steps

[gpetersmarck]

Hi all. First, let me say thank you for all the knowledge/input I have received so far from this forum - its been so helpful throughout my process. Here is a quick summary of past:

1 year ago, was diagnosed with low T (below 200)
At the time, doc didn't test Prolactin, LH, or FSH; since I joined here I have learned the value of doing so prior to treatment path
Doc started me first on Androgen, didn't feel any better, and follow up test showed T levels actually lowered
Next step was to begin injections with cypionate.
From there, everything over time became great, with all health markers drastically improving.

1.5 months ago, I asked for full work up again including the prolactin since it was never done. Prolactin came back elevated (45.5 with 2.0 - 18 being normal). Follow up bloodwork confirmed the same.

Follow up MRI showed a 3mm pituitary tumor.

Doc stopped all cypionate and has me scheduled 3/19 to see Head of Neurosurgery along with Endocrinologist here at University of Michigan. I feel like I am in good hands with the next step but was wondering if anyone had any additional input, questions I can ask on March 19th so I feel we are exploring all options. Since stopping the testosterone I feel like shit and wonder the likelihood of it being introduced again and/or other options provided to begin moving my T levels back up to where I felt my best?

Again, everyone has been great here so any additional info you can throw out to best prepare me for next appointments along with long term possible paths taken when dealing with these tumors, I would greatly appreciate it.

[kelkel]

Hi gp! Sorry to hear of your adenoma. Know that it's not the end of the world and that you'll be just fine. I've had one for years myself although mine is not a prolactinoma. Prolactinoma's are very common and are normally treated by Dopamine Agonists (Cabergoline or Bromocriptine) that will lower your prolactin level very quickly (days) and effectively. That said, if the adenoma's only effect was prolactin then your endogenous testosterone production will probably return to normal as well.

Not sure why your primary would not prescribe one of the DA's unless he's simply out of his league here, but it's really not that complicated. Yours is a micro-adenoma which normally does not require surgery so don't think along those lines. Macro-adenomas (over 10mm) can require it. Know that the average pituitary is usually around 6mm or so. Tiny little bugger than can cause all kinds of problems!

It sucks to have been taken off testosterone at this time and in my opinion you could have stayed on until your next appointment and a decision is made on treatment. When they do decide on treatment and if blood work indicates your T is in the toilet (as expected) make sure they test for LH & FSH levels. Also ask about SERMS (selective estrogen receptor modulators) to help restart your endogenous testosterone production. These would be Clomid and Nolvadex.

Hope this helps. Keep us updated on this thread please. In the meantime, research and learn. Take notes and write down questions for your doctor.

Best of luck.

[buttslinger]

I can't add much on your specific problem, I was diagnosed with empty sella, that's where the hole your pituitary sits in is partially empty because of a tumor that is so old it disintegrated. When I was like twelve years old, I started passing out in the summer when I ran. The pituitary regulates all kinds of stuff, like blood pressure. Insurance has been fighting recognizing tumors as a true health hazard, because, as one doctor told me, the harm is to your QUALITY OF LIFE. Doctors say pituitary tumors account for three percent of the population, but during autopsies they account for seventeen percent. That's one out of every six people.
Throughout my life I've kind of mentally blocked all this out, even though officially I had no idea what was going on til I got old and the doctors tested me (that's another long story) ....I definitely knew something was wrong. They say you can compensate through medications, but I think in a way I was (and am) ****ed for life.
It's only in the past couple months I've been to the dermatologist to fix my skin, been to the barber to cut off my hair, and been to Walmart to get a supply of their generic Rogaine. I may finally change my name to Mr. DHT, I have mixed feelings about this, but I think in my case, there is no normal hormone level. I'm going to have to address this problem every day.

[kelkel]

Damn Buttslinger. Sorry to hear your story. Are you on any meds? TRT?

[buttslinger]

Damn Buttslinger. Sorry to hear your story. Are you on any meds? TRT?

Yes, I am learning the hard way, but I am learning, thanks to everyone.

[noisycats]

Hey GP, my story is exactly the same as yours. Started on cabergoline with fairly decent results. It required higher doses than usual to bring my prolactin levels down but then I had small side effects from the med and my T was only modestly improved. In the end, we settled on a high moderate dose of caber with one pump daily of fortesta. My prolactin hangs around 18 and T is in the low 700s. I feel greatly improved and life goes on with increased libido, more rigidity, more intense orgasms, better body composition, and more peace of mind. Hang in there.

[gpetersmarck]

Sorry for the delay in replying back - just a quick thank you to the great responses and feedback...this board has always been such a valuable resource for me - especially in providing some peace of mind as I navigate on this journey. One week from today I will be meeting with the Neurosurgeon and Endocrinologist from University of Michigan. I feel well prepared (thank you all) and look forward to the next steps. I will update on outcome shortly after. Thank you again.

[kelkel]

Hey GP, my story is exactly the same as yours. Started on cabergoline with fairly decent results. It required higher doses than usual to bring my prolactin levels down but then I had small side effects from the med and my T was only modestly improved. In the end, we settled on a high moderate dose of caber with one pump daily of fortesta. My prolactin hangs around 18 and T is in the low 700s. I feel greatly improved and life goes on with increased libido, more rigidity, more intense orgasms, better body composition, and more peace of mind. Hang in there.

Glad to hear this. What's your caber dosage if you don't mind me asking. Also, how much of a difference in T levels did only the caber make, before adding Test?

Sorry for the delay in replying back - just a quick thank you to the great responses and feedback...this board has always been such a valuable resource for me - especially in providing some peace of mind as I navigate on this journey. One week from today I will be meeting with the Neurosurgeon and Endocrinologist from University of Michigan. I feel well prepared (thank you all) and look forward to the next steps. I will update on outcome shortly after. Thank you again.

Glad to hear back from you! Let us know how you make out on this thread please. Also, remember to do as much research as possible and to write down all your questions to take with you. Nothing worse than walking out of an appt and realizing you've forgotten to ask an important question. You'll get through this and be just fine. Consider it lucky that you found this. So many men just suffer thinking it's part of aging.......

[LFH40]

You're gonna be ok. I am going to be 42 in July and I've been diagnosed with an adenoma on my pituitary gland since I was 21. I was treated with Parlodel/Bromocriptine for years and years. Eventually on one of my annual MRI's, they told me it's no longer a prolactinoma and now it is called a "non-functioning" adenoma. Basically as I understand it, that means it's just sitting there pressing on my pituitary stalk deviating the hornomes from being released. What sucks is that I took charge and ordered ALL of my medical records and I had testosterone throughout my 20s and my levels were in the low to mid 200's and I was not privy enough on the whole low t thing back then and never questioned it nor did I see the results. I know, shame on me. I assumed my doctor was being straight with me and told me that my levels were fine. Eventually the doctor told me that the mri was almost non-detectable on an MRI and ceased all treatment and discontinued any further MRI's. In 2013 I was having serious trouble in the bedroom, I was working out 6 days a week and staying fit, however my body type was that of almost a femaled body builder. By that I don't mean I was feminine, but my body was super lean and not rugged and bulky. I don't really know how to explain it. For all the working out I was doing I don't think I ever reaped the benefits of it as my levels when I finally went to a different doctor, a urologist, my test levels came back at a 192. I begged for a script for an MRI to investigate the pituitary issue that my former doctor stated was a "case closed" issue. My "almost non-detectable" adenoma was back and doubled in size since its discovery.

I'm no longer a candidate for bromocriptine as it is not a prolactin secreting tumor any longer. I'm seeing a top neurologist who tells me that I should definitely have annual MRI's no matter what, and that if it gets larger then we may have to do trans nasal surgery. Hopefully it will remain status quo. This is the reason I'm on testosterone. I have been on it a year and a half and it has made the world of difference. It's not a solve all to all of your problems, but it will definitely help.

I still have erection hardness issues even with an 1078 test level. My E2 goes up and down and I play with Anastrozole doseage from time to time. When I feel my nipples getting a bit sensitive, I may take a quarter of a pill once a week for a week or two and then back off. Last time I took 1/4 pill a week for about a month or two and I crashed my E2 and felt like crap. Then it takes time to rebound. So that's the only real issue I've run into. If I had a fix for that, I'd be on it. I am still learning and still playing with the AI doseage. I'm quite happy now and my workouts are better. I'm actually FINALLY able to lift weights for the first time since starting TRT. I had an injury on the job which I had two arthroscopic surgeries for and they were six months apart. So I've been in some form of rehab for the last year and a half. Finally I can get to see what my optimal test levels and a CLEAN diet can do for me!

Good luck with your journey my man!

[gpetersmarck]

Thank you for this update/info LFH40 - I'm off to see endocrinologist and neurosurgeon today at UofM - excited the day is finally here and will status update some time later. Thanks again!

[kelkel]

You're gonna be ok. I am going to be 42 in July and I've been diagnosed with an adenoma on my pituitary gland since I was 21. I was treated with Parlodel/Bromocriptine for years and years. Eventually on one of my annual MRI's, they told me it's no longer a prolactinoma and now it is called a "non-functioning" adenoma. Basically as I understand it, that means it's just sitting there pressing on my pituitary stalk deviating the hornomes from being released. What sucks is that I took charge and ordered ALL of my medical records and I had testosterone throughout my 20s and my levels were in the low to mid 200's and I was not privy enough on the whole low t thing back then and never questioned it nor did I see the results. I know, shame on me. I assumed my doctor was being straight with me and told me that my levels were fine. Eventually the doctor told me that the mri was almost non-detectable on an MRI and ceased all treatment and discontinued any further MRI's. In 2013 I was having serious trouble in the bedroom, I was working out 6 days a week and staying fit, however my body type was that of almost a femaled body builder. By that I don't mean I was feminine, but my body was super lean and not rugged and bulky. I don't really know how to explain it. For all the working out I was doing I don't think I ever reaped the benefits of it as my levels when I finally went to a different doctor, a urologist, my test levels came back at a 192. I begged for a script for an MRI to investigate the pituitary issue that my former doctor stated was a "case closed" issue. My "almost non-detectable" adenoma was back and doubled in size since its discovery.

I'm no longer a candidate for bromocriptine as it is not a prolactin secreting tumor any longer. I'm seeing a top neurologist who tells me that I should definitely have annual MRI's no matter what, and that if it gets larger then we may have to do trans nasal surgery. Hopefully it will remain status quo. This is the reason I'm on testosterone. I have been on it a year and a half and it has made the world of difference. It's not a solve all to all of your problems, but it will definitely help.

I still have erection hardness issues even with an 1078 test level. My E2 goes up and down and I play with Anastrozole doseage from time to time. When I feel my nipples getting a bit sensitive, I may take a quarter of a pill once a week for a week or two and then back off. Last time I took 1/4 pill a week for about a month or two and I crashed my E2 and felt like crap. Then it takes time to rebound. So that's the only real issue I've run into. If I had a fix for that, I'd be on it. I am still learning and still playing with the AI doseage. I'm quite happy now and my workouts are better. I'm actually FINALLY able to lift weights for the first time since starting TRT. I had an injury on the job which I had two arthroscopic surgeries for and they were six months apart. So I've been in some form of rehab for the last year and a half. Finally I can get to see what my optimal test levels and a CLEAN diet can do for me!

Good luck with your journey my man!

Really a great post LH. Glad you're doing well. Just imagine if a competent doc caught this issue in the beginning. Sure would have been nice. I'd love to know how long I had mine before discovering it as well.

Appropriately:

[LFH40]

Thank you for this update/info LFH40 - I'm off to see endocrinologist and neurosurgeon today at UofM - excited the day is finally here and will status update some time later. Thanks again!

Good luck and I apologize for my long winded post. I re-read it this morning at a decent hour and noticed all the typos
Basically, I'm just trying to tell you not to let it get you down. This isn't a dead end road, just a detour from what you expected. I don't post everyday, but I do come here always to read what the good guys on this forum have to say. It's like having a built in support group. So many guys have been doing this TRT for years and years, so I don't try to pretend that I know what I don't, so I sort of lurk around unless I have questions. But for this post of yours, I felt compelled to say something. I wish there was internet 21 years ago when this thing started inside my pituitary. I had nobody to ask about it but doctors who didn't really give a squat anyways. You're gonna be ok. Read up, listen to the senior guys here like KelKel and Co... you won't be steered wrong. It's a commitment to be on TRT, but for some of us there really is NO other choice unless you wanna feel like crap, and I'm assuming that's not your M.O. It has been a blessing to find TRT and a forum like this. Peace.

[gpetersmarck]

Just finished meeting with neurosurgeon and endocrinologist up at UofM with some great news - misdiagnosed done on first MRI so #tumorfree Thank you to everyone for the support!!

[kelkel]

So, "it's not a tumah." Outstanding. Great pic as well. Now what's the plan?

[gpetersmarck]

Ha-ha...exactly. Aside from the overall great news, the appointment went really well because I never felt rushed at all like all other past appointments and I spent a lot of time with Dr. Barkan who is the endocrinologist. Some key take-aways:

- First, because I did feel like shit since stopping T in January (sluggish, significant joint/muscle pain, zero erections, etc.) I did decide last week to start the injections. I figured I was a week out and the doctor would decide if we can continue with them or adjust after this appointment.
- Dr. Barkan said because of how I responded after I began HRT, his recommendation would be to continue.
- Doc also did a great job explaining why his primary focus would be bioavailable testosterone vs Total Testosterone - was helpful to learn.
- We discussed in length the pros/cons of gels vs injections. Prior to stopping the injections in January, my primary doc had convinced me to switch to a gel. After talking with Dr. Barkan, I believe continuing the injections is best for me. I have an appointment back with my primary doctor tomorrow to share the update and get new prescription for the injections.
- Because he is an endocrinologist that focuses on patients with tumors, he would not be my doctor moving forward. However, because of his input along with all I have learned here, I feel adequately informed to be able to continue with my original doctor.
- Regarding my two prolactin tests showing an increase from the first to the second, he said the increase was not enough of a bump...small enough to be viewed equally.
- He did do a blood draw to measure the micro-prolactin levels. He expects that to come back normal. I will have results in a week.

After meeting with Dr. B, I then met with both he and Dr. Sullivan (brain surgeon) who confirmed there is not a tumor and it was misdiagnosed. At the end I did ask if I should follow up with an MRI in a year and he said 'if that would provide additional peace of mind, that would be ok'...meaning 'sure, but we are confident in our assessment today'.

Question - so tomorrow I am back to see my primary care to get new Test C prescription, etc. I was going to ask for follow up blood work in 90 days to include prolactin along, and T levels (including bioavailable which was not always included in the past)...does that make sense or would you recommend a different timeline?

Thanks again!

[kelkel]

When just starting in injection protocol it's normal to pull BW at around the 6 week mark to make dose titrations as well as check your E2. On that note, be sure you request a Sensitive Estrogen Assay as standard estradiol is geared to women. Men fall at the bottom of the bell curve where the test is just not sensitive enough to provide accurate readings. This often times results in patients initiating an AI when it's not really necessary.

Take a look at the Finding A Doc sticky at the top of this thread and the second set of BW would be appropriate. You can eliminate the LH/FSH per your situation. And yes, free T is always what's important as it's what does the work for us. Total T doesn't matter.

Questions: Do you know what dose of T and protocol you will follow? Once per week, twice, etc...
Will HCG be prescribed as well?
AI if necessary?

[gpetersmarck]

For dosage, I was going to continue with what I was doing before - the .5cc every 7 days (confirmed recommended by endo yesterday).

I will review that sticky and tell primary doc I would like to do follow up bw in 6 weeks. I'm sure the answer is here somewhere but when following an injection should I time that blood work?

Lastly, what in my prior bw do I want to reference in order to decide if HCG is needed also?

Thank you!

[kelkel]

Ok, once a week is fine for many people. A lot of us split our doses and go every 3-4 days to keep more stable serum levels. You'll have to monitor BW and how you feel to determine your path forward. Many guys start to feel down at the end of the week as their T levels drop and do better on the twice per week protocol. BW should be pulled on day 7 in the morning, PRIOR to your injection. You will get your trough level this way. At this point, assess how you feel and adapt your protocol.

HCG is needed. It simply keeps your testies somewhat functioning for better overall health and well being. As well as preventing testicular atrophy. On a once per week protocol you would take your HCG on day 5 & 6. This, in effect, helps to bump up your T levels when what you previously injected if waning. Don't let your doc tell you it's not legitimately prescribed for this as it is. On most HCG package inserts it lists "Hypogonadic Hypogonadism" as a reason for use. On a twice per week protocol you could just inject it in the same syringe that you put your test in.

Be sure to read the HCG sticky at the top of this forum. And, google Crislers HCG Update and print it out for your doc.

[gpetersmarck]

Well, just finished up at doctors and short version is - that didn't go very well. We didn't even get to te hcg conversation. He refused to restart me on Test Cypionate - he would only write a script for a topical gel. At this point I'm back to square one and will begin to research a local, affordable option here on a new physician I feel comfortable working with. Frustrating.

[Bio-Active]

Well, just finished up at doctors and short version is - that didn't go very well. We didn't even get to te hcg conversation. He refused to restart me on Test Cypionate - he would only write a script for a topical gel. At this point I'm back to square one and will begin to research a local, affordable option here on a new physician I feel comfortable working with. Frustrating.

why not run the gel and see how it goes? Endos often start there and if it doesn't bring your levels within range then the consider the other options

[gpetersmarck]

I did decide to go that path for now - I am just now waiting on the insurance company/my doctor to complete a prior authorization. I did originally begin with the gel and my T levels actually went down so comfort level going back and trying to reinvent the wheel was lacking. I now figure I should at least try the gel while I am looking to transition to someone who is a little more progressive, is familiar with hcg protocal, etc. To recap, I will begin with gel, begin looking for another doctor who is comfortable with hcg, etc. and knowing it could take awhile, still plan on blood work with current doctor in 6 weeks. Thanks again - this forum is phenomenal.

[kelkel]

You talking Androgel? If so, it may work just fine for you. Many do quite well on it but some can tend to have absorption issues as time goes on. Plus it's a matter of what type therapy fits your lifestyle, which should be YOUR choice, not your doctors. Find another or visit LowTestosterone.com - $199 All-Included Testosterone Treatment.

[bass]

Just finished meeting with neurosurgeon and endocrinologist up at UofM with some great news - misdiagnosed done on first MRI so #tumorfree Thank you to everyone for the support!!

awesome!

[OingoBoingo]

Lastly, what in my prior bw do I want to reference in order to decide if HCG is needed also?

You need hCG to "backfill" your hormone pathways and create Pregnenolone.

You need hCG to address testicular atrophy, which can cause shrinkage and pain.

You need hCG to maintain fertility.

My doctor was shocked when I said I wanted to include hCG in my TRT protocol because he assumed I wanted to try hCG mono-therapy and Testosterone at the same time. After explaining I only wanted hCG 100IU daily and why, he was okay with it.

[LFH40]

You need hCG to "backfill" your hormone pathways and create Pregnenolone.

You need hCG to address testicular atrophy, which can cause shrinkage and pain.

You need hCG to maintain fertility.

My doctor was shocked when I said I wanted to include hCG in my TRT protocol because he assumed I wanted to try hCG mono-therapy and Testosterone at the same time. After explaining I only wanted hCG 100IU daily and why, he was okay with it.

When the idiot doctors "re-discovered" that my tumor was not "non-detectable" and that it came back (if it was ever gone in the first place..I have my doubts) and doubled in size, the endocrinologist wanted to give me a transdermal and NO hCG. I pleaded with her that I wanted to maintain my testicles and also the ability to father children. (We have one and are still trying but need fertility due to my wife mainly, however I could be part of the issue as well.) Anyway, long story short. The female endo told me that testicles were just aesthetic and served no purpose unless I wanted to have children, to which I told her I DID. She told me verbatim,
"Well, you have choices to make. Do you want to feel better or do you want to have children?" I promptly fired her to never return.

I did not appreciate her smugness and the fact that testicle shrinkage is not only emasculating, but painful. I wanted to tell her why doesn't she lop off her tits, afterall, unless you're nursing, you don't need them, they're just aesthetic. F'ing b*tch.

Anyhow. At this point I called lowtestosterone.com. No, I don't work for them and get no kick back. I'm just a super satisfied customer. I pay with my card all at once for the year and then get some money off the bottom line for paying at once. I guess for peace of mind and knowing that I'm getting the up to date protocol, I don't mind paying out of pocket. I don't trust just slathering on some androgel or testim and letting it ride. I'm sure it works for some, but my general well being and masculinity is not something I want to play with.

[OingoBoingo]

I know a few guys that are quite happy on gels and their doctors don't just let it ride; sometimes the dose must adjusted.

As for me, I just don't want to risk Testosterone transfer to friends and family. Although I understand the risk is low, the danger isn't to me but to those around me, and I don't feel I should be making that decision for them.

[kelkel]

When the idiot doctors "re-discovered" that my tumor was not "non-detectable" and that it came back (if it was ever gone in the first place..I have my doubts) and doubled in size, the endocrinologist wanted to give me a transdermal and NO hCG. I pleaded with her that I wanted to maintain my testicles and also the ability to father children. (We have one and are still trying but need fertility due to my wife mainly, however I could be part of the issue as well.) Anyway, long story short. The female endo told me that testicles were just aesthetic and served no purpose unless I wanted to have children, to which I told her I DID. She told me verbatim,
"Well, you have choices to make. Do you want to feel better or do you want to have children?" I promptly fired her to never return.

I did not appreciate her smugness and the fact that testicle shrinkage is not only emasculating, but painful. I wanted to tell her why doesn't she lop off her tits, afterall, unless you're nursing, you don't need them, they're just aesthetic. F'ing b*tch.

Anyhow. At this point I called lowtestosterone.com. No, I don't work for them and get no kick back. I'm just a super satisfied customer. I pay with my card all at once for the year and then get some money off the bottom line for paying at once. I guess for peace of mind and knowing that I'm getting the up to date protocol, I don't mind paying out of pocket. I don't trust just slathering on some androgel or testim and letting it ride. I'm sure it works for some, but my general well being and masculinity is not something I want to play with.

That doc pissed me off just reading about it. Damn.

[gpetersmarck]

This forum is invaluable. My primary doc who didn't want to prescribe Test C ended up writing a script for Axiron. Prior to taking Test C I started with Testim and by T levels actually went down. I did drop off script for Axiron to be filled while I sort out my next steps. I knew that my insurance company would need a prior authorize, past experience says that the doctors office is very slow out doing their part so I am assuming if I choose to go this path, it would be ready at pharmacy Monday or Tuesday.

For other options, lowtestosterone.com sounded great but if I understand correctly, it is an ongoing $200 per month, not including rx costs, etc. On an ongoing basis, that may be tough for me right now.

I did look into Dr. Crisler because he is about an hour away from me. He fee of $595 is not something I can absorb right now.

At my primary care doc, I had actually been working with a different doc to start who did rx the Test C, etc. Unfortunately, he ended up leaving the practice and setting up a new office 1.5 hours from here. As of now, I am leaning towards calling his office on Monday and booking something this next week. Its a bit of a drive but if I am doing it every 6 weeks or so, it would be time well spent. I also think he will be great about also prescribing the hcg as well. I will update as I progress and lock down next steps.

[kelkel]

I believe with lowT the cost includes everything.
You could possibly only have to meet with your doc (the one an hour and a half away) initially and then every 6 months or so. Some even do virtual appts.

[noisycats]

Glad to hear this. What's your caber dosage if you don't mind me asking. Also, how much of a difference in T levels did only the caber make, before adding Test?

Sorry for the delay. I just looked up the labs, and I guess I had forgotten how successful only caber was.
Max caber dose was 2.5 per week. Brought prolactin down to 10 and total test to mid 700s. But the side effects were annoying.
I'm now on 1.5 caber weekly with one pump, 10mg?, fortesta daily. Prolactin hangs around 16 and test is back to mid 700s. I'm really happy with the combo in how it makes me look and, more importantly, feel.

[kelkel]

Outstanding and thanks for the update noisy!