Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
I was recently diagnosed with a large (thumb-sized) prolactinoma after years of symptoms. I would like to connect with other men in the group.
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
http://en.wikipedia.org/wiki/Cradle_cap
There are a whole bunch of different scalp ailments so its hard to say which might be affecting you.
I've read some weird side effects from caber so I wouldnt be surprised if this was one too. Strange things happen when your hormones go crazy.
It is possible that your endo pushed your dosage too high or too fast for you. I would track your symptoms for another week and see how they do. Calling a Dr. couldn't hurt either.
I just wanted to report back - splitting me pills was a huge help!
Instead of taking 3 pills per week, I now take half a pill 6 days a week.
There have been a few times I forgot to take the half pill dosage, and I simply caught up with a whole pill the next day without any significant issues.
Flakey scalp persist... arg!
I just wanted to report back - splitting me pills was a huge help!
Instead of taking 3 pills per week, I now take half a pill 6 days a week.
There have been a few times I forgot to take the half pill dosage, and I simply caught up with a whole pill the next day without any significant issues.
Flakey scalp persist... arg!
I'm trying to solve my problem with ED. It has progressed over two years to the point where I no longer achieve erections naturally and struggle to maintain or enjoy when I get one. A lack of libido certainly, but I assumed low libido was result of depression caused by ED. A catch twenty-two situation. I'm only 24 and this frustrates me to no end.
I just received blood test results - a note at the end states **possibly raised prolactin. My doctor said results are normal.
Testosterone: 21 nmol/L (9-38)
Free Testosterone: 396 pmol/L (250-800)
SHBG: 42 nmol/L (9-60)
Free Androgen Index: 500 (>400)
**Prolactin: 371** mIU/L (50-350)
Free Prolactin: 308 mIU/L (80-350)
Macroprolactin: Not Detected
Prolactin was only slightly out of range and Testosterone was normal. It's so stressful not knowing what the problem is. It was nice to find this topic and read everyone's comments. It's hard to discuss with friends who haven't experienced it.
Is it worth asking for a head-scan even though most levels were ok?
Good luck to everyone
So how's everyone getting on now. Have the drugs done their job yet your still expected to take a low dose to hold the tumour back? How does everyone find it at home? Do your wives & girlfriends take it all seriously, considering we outwardly appear normal yet struggle with mood swings and feeling sorry for ourselves.
Also, if your taking cabergoline, how did your partners handle the sudden increase in libido. I had no interest for 3 years prior to being diagnosed. Now my interest is through the roof but my wifes is even lesser than normal due to the anti-depressant she's on. While I understand what its like to be approached when you honestly have NO interest, I am finding it hard to be rejected when someone knows the medication is causing the high libido yet can't be bothered to help me through this problem.
What about work? Have you all had to manage/hide the side effects and second guess what you do or say sometimes? I've had memory issues (short term) and have forgotten to follow through on things I've promised customers. I've had brain switch off moments and/or delayed responses during conversations.
I've been taking Ginkgo Biloba for the last 6-7 weeks and that's helped with the memory and brain fade issues (quite considerably actually) but I still don't feel normal.
As males we are often judged by our performance at work and when that affected we can get down.
Also women often just want "the strong silent type" so as soon as we start whinging about our head, work, our thinking, our problems....instead of getting a supporting ear we often just get rejected further or told to stop complaining.
Also, trying to have an open dialogue about our issues is also a further turn off for them.
Its quite an interesting and disturbing journey because as men we really are left on our own to deal with the condition and the side effects. We need to talk amongst ourselves for support and answers, but because there's so few of us that's often impossible. Also doesn't help that even though I've ticked the box to be told of replies when someone else posts, it never happens. I check in a few weeks later and there's 2-3 replies, mainly from the ladies with their different side effects.
It seems as men we are expected just to shut up and put up with it, provide, not complain at home or succumb to any of the side effects (like grumpy outbursts, low mood, hyper sex drive etc), we must remain consistent and stable.
Yet strangely enough, as un-blokey as it sounds, we've actually been laden with female hormones for years so wanting to talk and expecting a sympathetic ear shouldn't be considered abnormal.
And as the testosterone returns along with the increased drive, our "maleness" comes back in force but we are slight not "right", we still have to fight to get through the day sometimes.
Luckily this forum has a lot of answers, tips and people who have to deal with the same thing because otherwise I'd feel like I was going crazy some days.
Looking forward to hearing some feedback on your experiences.
My own life fell apart long before I was diagnosed. My libido started to decline-slowly- at the age of about 45. I started gaining weight too, which did NOT help. My wife, who always did have a very strong drive, just didn't understand. What was a daily experience for us dwindled to twice a week before she became so frustrated she found it elsewhere. In the meantime her complaints, and I am still to this day grateful for them, motivated me to ask my urologist about this and the enlarged prostate issue. As a highly experienced doctor he ordered the right hormone tests, eventually the MRI and found my Macro- 12mm and thoroughly killing my sex drive. By this time I was 51 years old- happy birthday!
I rushed to whatever treatment could be provided. Cabergoline, the miracle drug! And it did all that it promised. Restored my drive with a vengeance, turned my awareness inside out, increased the intensity of every emotion I felt, decreased my ability to focus at work and elsewhere, affected my short-term memory, speech capability, vocabulary, and points I still feel I now lack the ability to describe. Regrettably it was too late to save my marriage. My family was everything to me at the time. It was devastating.
Two years later I am celebrating my 53rd birthday and have found ways to make this altered life work pretty well. I have found other loves, and also found that when they end it is harder. Interesting to feel emotions like a teenager again, but at least I have the experience to understand what is happening! I have moved the cabergoline dose to Friday night, and it affects work less but still is a factor. Luckily I have very supportive management. I have found that notes- lots of notes about all kids of topics - help me a great deal in keeping up on the work and details. Since I am a financial industry worker, details are everything! So take notes!
My tumor has shrunk about 8%. the headaches from it are gone (it was squeezing my sinus), and my sex drive and function is almost normal. Blood chemistry is very stable and my endo, who is a phenomenal doctor, is very pleased with my life quality. I can say that even after all the rollercoaster I am as well. I have managed to lose all the weight I gained through diet and exercise and am in the best shape of my life- and loving it. I have the satisfaction of knowing that life can be good even after finding you have a brain tumor. So for me, every day that I can feel even close to normal is bonus points.
Bottom line guys- and we love bottom lines- life can be darn rewarding after finding these killers. It takes work, concentration, cooperation with your doctors and sometimes lots of little tricks and gimmicks, and friends. LOTS of friends. But life can be GOOD again.
I read here that so many guys are still struggling to communicate with their partners over what is going on inside. This, for us guys with this problem, is probably the single hardest aspect of the condition. Admittedly I am single at the moment, but when I meet someone, I simply tell them- at an appropriate moment of course, but before too many dates- about my problem and what it does. I spell it out as clearly as I can and try not to leave anything out. I find they either listen, and understand, or they don't- and the ones that don't are certainly not good material for a life partner!
My sympathy goes out to those with life partners that still don't understand. To those guys all I can advise is patience fellas. Your ladies will eventually understand, just keep talking. After all, they are still around after finding you have a brain tumor! So have faith!
As I close I wish for only one thing. That there was a way to get information on this to guys who don't know about what might be happening to them. If I had known earlier, instead of thinking it was just AGE, I might still have my family and my wife. How many are out there and don't know- and suffer in silence, losing everything they worked so hard for? It is these men that I wish I could find and tell my story to.
I hope beyond hope that at least some of this is useful. It has certainly helped me feel better to finally spill it somewhere!
I know you miss your family but your wife did show her true colours when things didn't go her way so perhaps it was for the best. I hope she felt some guilt when she learnt of your condition and subsequent recovery.
I understand about "notes", I really do. Customers tell me "now you won't forget will you?". Funny but not funny really.
At least we are alive and haven't lost our sight.
I was offered a Beer the other night by a customer and told him why I could no longer drink beer. He went quiet and then told me how his mother suffered for years with migranes and eventually her doctor finally sent her for an MRI.
A few days later she had a terrible migrane and they drove her to the hospital. A doctor saw her and decided rather than just giving her the usual pain injection and sending her home, that they would keep her in for further tests. They put her in a quiet darkened room to let the migrane pass but when they checked on her she had died.
As part of the autopsy the MRI results were looked over (which weren't back when she went into hospital) and they showed a large undiagnosed pituatry tumour which had ruptured.
So we are lucky. We may struggle at times through the haze of our thoughts and pretend to be switched on when things aren't right but we are alive :-)
So short term memory. WOW does that one bug me a lot. I can handle the constant feeling of being high, and even struggling to find words, although I was a spelling champion and value my vocabulary. But what I have found is that it truly I short term memory. Hence the notes. Immediate recall is very tough, but if I go back and review a note a few minutes later and then again the next day it helps my long term grab the thought thread and complete it.
So do you, and the other guys here, find that emotions are hugely enhanced on this drug? Things hit me far more deeply than when I was younger. I am also told that age does this, but I wonder of that is a function of declining testosterone. I happen to be one of those guys whose testosterone did NOT normalize after Cabergoline, so I will be on topical testosterone the rest of my life. Nice thing about that is I will be able to keep it standardized at a specific level forever. Did anyone else have this problem, or have you guys been some of the cases where your T levels self-balanced?
Again Dot- thanks. Good to talk about this stuff with guys who KNOW!
Last week I finally sought out an endocrinologist to find what's really going on. I was on Androgel, then Axiron for 5 years for low T but neither really changed me much.
Blood test showed Prolactin at 3,000 and today's MRI found a 25 mm tumor. No eye problems or headaches, just low T, low libido, limp member, man boobs, low energy, cry like a girl.
Took my first dose of cabergoline today (.5 twice a week) and I am really looking forward to being a real man again.
I am glad this group exists so I can compare my symptoms and progress. Maybe I can contribute some encouragement. I certainly have already received some.
Just hoping the caber side effects are mild. I am a music teacher and need to keep an even keel.
Best wishes to you all.