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.
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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...
You are absolutely right about the hypogonadism (Low T) and hypothyroidism in relation to the prolactinoma. And it's for good reason. Prolactin and testosterone have a very intimate relationship--the higher the prolactin, the lower the T--and long-term elevated prolactin levels can lead to damage of the testes (as in my case) due to lifelong low testosterone. My last recorded level was 20. Also, TSH (thyroid stimulating hormone) is secreted from the anterior pituitary gland. Given our tumors, it makes sense that this would frequently be affected, because of the possible damage to the pituitary from the tumor.
I'm finally getting sorted--I'm now on testosterone and levothyroxine. While I know this will help moving forward, I'm struggling with the side-effects. I emailed my endo, and all he offered was "I'm not surprised that you're having all sorts of strange side-effects because of your lifelong hormone deficiencies." GREAT. SO HELPFUL.
FWIW--my side effects have included hair loss (not lots, just noticeably more than before), MOOD SWINGS (mostly anger and aggression), hot flashes, swollen ankles (water retention) and dry skin. It's hard to say if all these are from the T, or whether some are from the thyroxine as well. I am in the process of getting a referral to a psychiatrist for the chemical/hormone-induced mood issues, and psychologist for emotional assistance.
My endo also explained that he would not put me on cabergoline for now (despite the 89 prolactin level) because he wants to monitor my improvement just on the T and thyroxine. He said adding the cabergoline into the mix now would just confuse things. I'm secretly hoping I will also get the cabergoline as well in the future, because I noticed a much higher increase in libido on cab than I am noticing so far on T. For having been "dormant" for so long...I can't wait for this to return.
As far as the bromocriptine, that was my first medication. I couldn't stay on it long at all because it gave me intense vertigo and nausea. Fortunately, I was able to tolerate the cabergoline, but I've never taken more than 1/2 pill twice weekly. It's up to you, but you might consider giving the bromo a try. Even though many have had issues with it, everyone is different, and you may be able to tolerate it. Also, going off prolactin meds completely will only force your already low T levels lower. Have you been on, or discussed testosterone replacement with your endo? Because low-T is considered in levels less than 350, and can cause a host of unpleasant side effects itself.
That being said, the endo may also want to get the prolactin levels under control first--to see if your testes are able to produce a normal amount of T on their own without the prolactin present. TRT can also affect your fertility--if that's a concern for you.
Gee, I'm sure glad life is easy. ROFLOL
=)~
Greg
Thanks for the good insight into what you are going through. It sure helps to compare experiences and gain knowledge, putting the puzzle together.
A few years back I had a pretty bad bout with what sounds like the same challenges you are going through. One thing I've learned is that it wasn't the real me, it was the prolactinoma, low T and the thyroid issues that made the simplist of problems huge. Lost of mood swings and highly emotional.
The problem being for me was the overwhelming emotions and symptoms that came along with every thing being out of whack.
It is a daily chore to "keep it together" I try just taking one day at a time, count the blessings I have and try to not focus too much on all of this. LOL..
I was perscribed some androgel for testosterone replacement.
Have not used it on a consistant basis to see any results. A few friends who are using it have mixed feelings about it and have not experienced any increase in energy levels but some help in the male department. One has reported increased anger and irratilbility (sp) so he stopped it and now is working with an Endo who tested him for a slightly eleavated prolactin level. When I was perscribed the androgel I was also working with a neurologist to ease the strange headaches I was having. He had me on an anti seziure drug and recommended to delay the use of androgel. I'll most likley it into my daily routine to see if it helps.
I have heard that too much testosterone replacement can cause a type of roid rage. Had a lot of that with the Cab. Been off the Cab for 8 days now and the side effects are becoming less and less. going to enjoy a few more days of a return to sanity. The Cab just made my outlook so dark and dreadful.
Endo just increased synthroid dose. It has been unchanged the last 20 years so once this all gets fine tuned and dialed in, quality of life should begin to return.
I wish the same for you.I guess It takes time to sort out all of the issues stemming from a prolactinoma. I try to keep it all in perspective and over time I guess we just learn to manage it all. For myself, That is one of the largest parts of the battle.
Going to try Bromo and take it from there. I am hoping that it will be tolorable. Keep the faith and keep us all posted on your progress as well.
I've experienced rages, but they came as a result of too low of testosterone...just didn't feel human. Plus, I've had underlying issues stemming from childhood abuse and I live with a woman who has Bipolar Disorder who expresses her disorder with passive-aggressiveness and anxiety.
Those athletes that get roid raid usually do so because they inject an unbound form of testosterone. Your androgel will not likely surge upon you as it's transdermal.
Testosterone is stored in fat in the body. It will time release from there and store there, likewise.
Personally, I'd commit suicide if I were not on Testosterone...because nothing else works on my issues.
I've just been diagnosed with a prolactinoma. I've just started on cabergoline .25 twice a week. I've not noticed any side effects yet but it's only been a week so far.
The doctors here in London have been amazing and my wife has been totally supportive which is great. I'll keep an updated post in a few weeks of using the medication.
D.
I'm really proud of this forum. The fact that we did what we had to do to get diagnosed makes us pretty special. We all had to spill our guts to the doc, and probably more than one, which means we are scientifically literate, brave and motivated. Think about it. This isn't a typical diagnosis.
The diagnosis is changing my life. The cabergoline worked. I saw results after 3 weeks. After six months, the noma is reduced by half. But I am sensitive to the side effects: It made me crazy paranoid.
Switching to bromo 3 weeks ago has been another life-changer. Granted this has been an extraordinary good month for me, but I think I have the right meds finally. Depression and paranoia are gone, libido is normal.
So far so good. I see the endo next Friday. I'll keep you posted.
Hang in there guys.
My favorite phrase I've been saying for the past few years is 'I wish I was normal'. I didn't even know why I was saying it and this was long before my diagnosis but it all makes sense not!
My Testosterone was about 2.3 and my Prolactin level was just under 5000 at my diagnosis. Fingers crossed for my next blood test in 2 months!!!! I'll keep my stats posted when I get them.
2000 (22 years old): Low Libido; Urologist ordered blood test, came back at 200 Testosterone; Urologist said I was on the "low-end" of the scale, nothing to worry about
2000-2010: Lived with low libido, fatigue and gradual weight gain
2011 April: Sinus headaches prevented me from doing the things I wanted to do (exercise, ride dirt bikes, etc...). General practitioner ordered up a MRI (which I can't get because I had a pacemaker implanted when I was 24), so we got a CT Scan.
2011 April: CT Scan comes back good except for this paragraph: "The sella is enlarged and there is enhancing soft tissue within the sella suspicious for pituitary adenoma. There is a retention cyst in the sphenoid sinus"; General practitioner orders up a blood test to measure Testosterone and Prolactinoma.
2011 April: Blood work comes back: Testosterone: 181.53 ng/dL (normal range 350-890 ng/dL); Prolactin: 851.2 ng/ml (normal range 2.1 - 17.1 ng/ml); orders appointment with neurosurgeon in 5 weeks (argh!)
2011 May: Neurosurgeon says, you don't need me, you need an Endocrinologist.
2011 June: I will meet with Endo to discuss medicinal treatments. I suspect he'll offer Bromocriptine or the Cabergoline, but I have no idea. I've researched natural alternatives (as I don't like to take long term meds) and came across Chasteberry (aka vitex agnus-castus). Typically , women will use this for PMS, but it's supposed to reduce prolactin levels (I've seen some bodybuilding forums where they take Chasteberry to increase their testosterone (by reducing prolactin (they think 30 ng/ml is "high" for a prolactin level, LOL)). However, it's hard to tell how much to take b/c lower doses could increase prolactin (http://www.aafp.org/afp/2005/0901/p821.html) but higher doses reduce it.
Anyway, I'll let you guys know what my particular Endo says about the herbal alternative and if I go the medical route, how that affects me. Right now, I still have headaches, low libido and general fatigue. I've got a bunch of thoughts as to how the tumor came to be, but I don't have any facts or research to back it up, so I'll leave that alone on this public thread. Feel free to send me an email if you want to compare prior history. Maybe we'll find out what causes this thing :)
Any way my point is that you can read loads about this condition but for the most part there are many people out there that dont suffer any side affects at all, you just have to be patient and get what works for you.
He shot me up with some adrenal? hormone and I waited 30 minutes before they took another blood sample. He's supposed to call me tomorrow (thank goodness I don't have to set up another appointment) and let me know the results. After which, I think he's going to prescribe Cabergoline.
I'll post back with my reaction to that.
Good luck to you all.
Last March 15, 2010 I went to Opthalmologist for sudden blurring of visions and I'm undergo different test like VISUAL FIELD, etc.The result was not good, the doctor suspected that I have mass or tumor that disturb the optic nerves caused my blurring visions.By the way guys I don't have headache at all.So I undergo an MRI and the result was positive that I had a mass measures approximately 4.7x4.7x4.9 cm in AP,transverse and craniocaudal dimensions. Immediately the Opthal refer to me a Neuro Surgeon and there the neuro got some laboratory blood test for the following:
prolactin result: 212,000 miu/L normal 69.54-417.22 miu/L
thyroid result normal
cortisol result normal
After these tests the neurosurgeon decided to schedule my surgery as soon as possible and according to him for me save my vision.The following are the timeline of my medical history:
March 29, 2010 - scheduled for my surgery and the biopsy report diagnosis was PITUITARY ADENOMA ( The specimen labeled "pituitary" consists of gray tan gritty tissue fragment with an aggregate diameter of 2.5cm)
Before my surgery the surgeon told me that the tumor would not be removed 100% to avoid damage the pituitary.After a week of my surgery I had my MRI again to see how much was removed and I really felt bad with the result .There has been mild interval decrease in the overall size and the tumor now approximately 4.5x3.8x3.7 compared with previous 4.7x4.7x4.9 cm.
I asked the surgeon with the result of MRI, he always said thats why he removed only little or mild with tumor to protect the pituitary from damage.At that moment I really depressed, after surgery the neuro suggested that Im going to undergo radio theraphy to remove the tumor completely.But I dont have any budget to undergo another procedure again.So I decided to see an Endocrinologist for further advice. She explain to me evrything with regards to prolactinoma and she told me that no need for radio theraphy because with the medication alone the tumor will be shrinked and the prolactin will be normal.At the month of April I started my cabergoline medication, the following are my lab. test result:
before surgery:
prolactin result: 212,000 miu/L normal 69.54-417.22 miu/L
4/8/10 296 miu/ml normal .045-0.375miu/mL
5/7/10 57.94 miu/ml normal .053-.360 miu/mL
6/8/10 115 ng/mL normal 1.9-25 ng/mL
7/5/10 38.41 miu/mL normal 0.045-0.375 miu/mL
10/21/10 18.33 miu/mL normal 0.045-.375 miu.mL
12/01/10 20.2 miu.mL normal 0.045-.375 miu/mL
1/19/11 7.08 miu/mL normal 0.045-0.375 miu/mL
5/2/11 6.97 miu/mL normal .045-.375 miu/mL
6/3/11 5,156.5 miu/L normal 86-324 miu/mL
6/3/11 testosterone 1.10 ng/ml normal 4.21-11.38
Currently my dosage is 4 tablets a week equivalent to 2mL a week.I really thankful that I don't feel the side effect anymore.Hopefully my prolactin level will reach up to normal.
Thank You for this site it really help a lot for me....thank you guys...again sorry for my bad english...hahahahahah...
Was wondering how the switch from Cab to Bromo has been for you.
I read that you were possiably changing meds I think it was, back in mid May?
The jury is still out. After three weeks at 2.5mg/day my levels started creeping back up. So we doubled up. At 5.0 I have new side effects, drowsiness and low libido, but after 3 weeks I am adapting. If I take it earlier in the evening, I do get sleepy ( No Driving!) earlier, too. But I am awake in the AM (after my coffee).
Life is getting better! Hang in there!
Was very happy to come accross this forum. Im 22 and was diagnosed with a prolactinoma 2 months ago. For years I hadnt felt right, felt like I never really went through the normal stages of puberty, no facial hair, voice never broke etc. After having blood tests, testosterone was quite low at around 6, and my prolactin levels were over 1200. Have been to my Endo twice, and will be starting dostinex within the next couple of days. I have been on two particular medications for depression and anxiety for around 10, and have recently found out that the medication I have been on for these problems could of started this whole problem in the first place. One of the antidpressants I have been on, can have the potential side affect of increasing prolactin levels.. I was hoping to get in touch with any other guys in a similiar situation and get there comments/adivce on what I can expect from taking this medication..I have heard mixed reviews, some saying that it helped a lot, they lost weight (I have slowly been putting on weight the last 5 years or so very easily) libido increased etc, but has caused havoc on their moods. Having depression and anxiety, my doctor has warned that by being on the dostinex and antidepressants at the same time, they could interact and cause all sorts of trouble. Any replys would be GREATLY appreciated,
Thankyou in advance,SQUAKS
Welcome to the site !
Lots of good info and support here.
FWIW, I was on Lexapro, Ativan, Remron for about 2 years and struggled the whole time. I was not aware of a prolactinoma at that time. It was a year and a half later that I was diagnosed with Prolactinoma and had been off the meds for about 16 months.
Not sure if the Antiderpessant and anxiety meds interact or cause the condition / tumor, I was having symptoms well before any meds, and I have not taken them with Cabergoline (Dostinex).or Bromocriptine.
There are others here that have been down that road of taking Cab and antidepressants together.