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Post by minnie on May 10, 2011 11:51:40 GMT -5
Hi Guys
I have been away for a long wile but hope you are all well.
I have just been diagnosed with a Prolactinoma which is a benign tumour on my pituitary gland. I have been advised to start drug treatment by my endocrinologist which I will be doing in the coming weeks. I just wondered if anyone here has experienced this. It causes very high levels of Prolactin, irregular periods etc
Many thanks
Minnie
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Post by pretty on May 10, 2011 12:22:21 GMT -5
www.pituitarysociety.org/public/specific/prolactinoma/treatmentHey Minnie! just googled prolactinoma. I was happy to read you won't possible need surgery? Sounds like a strange thing to have, I'm curious what symptoms prompted you to seek treatment? And was it hard for them to find/diagnose? Love to hear more about it when you have time... Hope you're doing well, keep us posted.... Pretty
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Post by Karen on May 10, 2011 14:42:27 GMT -5
Omg, I suspected this myself but my prolactin test came back normal (though on the high end). Who thought to test it for you?
I did a ton of research on it a few months ago, I can post more when I get home. There's actual a really good pituitary tumor clinic in my town. I'll see if I can find a good link with the info. My old boss had/has one and has success managing it with meds. She didn't require surgery.
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Post by JC on May 10, 2011 16:06:31 GMT -5
Wow I have heard of these but don't think any members here have one. A lot of these types of tumors are known to secrete excess hormones, yours obviously is secreting prolactin. I have a pancreatic neuroendocrine tumor that's thought to be secreting the hormone "gastrin" which promotes the production of stomach acid. Ouch! I hope you won't need surgery for it! I'm also curious, what prompted the brain scan? And what kind of doctor found it?
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Post by cherry on May 10, 2011 16:45:21 GMT -5
My mother had ridiculous levels come back on her prolactin check and we were urged to be checked too as it's thought to carry down through the family. They didn't seem to find a tumour and it all got rather confused. I hope they can shrink it down for you without the need to operate. Benign or no, anything on the brain is still scary. Thinking of you. I'll move this topic as it's not endo-related.
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Post by Karen on May 10, 2011 17:08:53 GMT -5
www.uwhealth.org/health/topic/nci/pituitary-tumors-treatment-pdq-treatment-patient-information-nci/ncicdr0000579645.htmlThere are other links within this site (on the right hand side) that offer additional information. What lead your doctor to check for this? What symptoms were you having? My old boss is monitored every 6 months to a year. I believe she still takes medication for it, and I believe it caused side effects that could cause birth defects? I'm not sure if it was that drug or something else she was on. Whatever the case, she and her hubby never had kids and it was due to a medication she was on. Might be something to look into.
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Post by Karen on May 10, 2011 18:14:29 GMT -5
One more question - how high was your prolactin (if you don't mind me asking)?
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Post by minnie on May 10, 2011 18:31:13 GMT -5
Hey guys, thanks for the responses. It was really strange in terms of how we became aware of it. I normally am regular as clockwork in my cycles 29-30 days. Then, my last period was in Feb and then I didn't get a period for 9 weeks. I put it down to stress initially and the fact I did 4 long haul flights that cycle. Anyway, by week 7 I was coincerned enough after the neg PT to go to the doc, who asked me loads of questions. She was about to tell me to go away and just wait it out and then asked me again if there was even the slightest chance I could be pregnant, given that the long haul flying might have uptipped my cycle. I said, well yes possibly (DH and I are hoping to start trying soon). So, she did a blood test just to make sure and it came back in my tests, with a raised prolactin level. A normal level is between 0-500 U/L (think that is the unit though may be wrong). Mine at that point was 1900. So having got those results, she referred me to an endocrinologist who said I wasn't presenting in the usual way for someone with a prolactinoma. She was surprised I had always had regular periods. Anyway, more blood tests, and an MRI confirmed it. I have a Mircoadenoma a couple of mm in size on one side of my pituitary gland. So, got the results last week and was a bit stunned. My period had returned in the meantime which was a comfort (strange to say that huh!). Endocrinologist wants me to have an ECG tomorrow to check my heart is functioning properly before putting me on .5mg of Cabergolene twice a week, indefinitely! Sounds like this is going to be a life long thing, or certainly until the menopause However, mentioned the baby making plans to her and she said, that once on the meds, normal fertility will resume so go for it and as soon as I find out that I am pregnant (fingers crossed) I have to stop the drug. I am a bit concerned if you friend didn't have kids due to her meds. My endocrinologist said it would be ok. Have been reading about Cabergolene and I have to say I am a bit alarmed about the potnetial side effects though who knows if I will get any. I feel a bit cr*p about it all at the mo. The idea of this being lifelong and regular blood tests and MRI's isn't enticing and just the thought of this thing in my head scares me. Surgery will only become necessary if I don't respond to drug treatment. Hmmmmmmmm
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Post by minnie on May 10, 2011 18:40:26 GMT -5
Oh, and the second round of blood tests showed my prolactin levels had gone up again to 2700 U/l!
Re how it affects me, I guess irregular periods, though I have only had one 9 week cycle so far. Next period is "due" next week so we will have to see what happens. Am kinda thinking I won't start the meds until I know for sure that my cycles will remain irregular.
In terms of other symptoms, I have a lowered libido (boring given that we got married a year ago) though I think this has been creeping up on me for a while. Boobs constantly having that pre-menstrual largeness - not ideal! Also, have noticed a creeping weight gain though this doesn't correspond to the amount of exercise and food I take/eat. I probably eat less than ever and yet exercise more.
Karen, that link was very interesting. I am going to investigate the potential causes of this more as at the moment I am just at a loss as to why this happened. Being told it is just one of those things is beyond frustrating...
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Post by Karen on May 10, 2011 19:18:27 GMT -5
Interesting! Sounds like a fluke that they caught it, but I'm glad that they did!
I was quite convinced I had one (still am, though I'm not so sure it's specifically a prolactinoma) and find your symptoms quite interesting... Irregular cycles, very low libido/ability to orgasm (TMI?) despite being on testosterone for it, have the big boobs, weight creep, etc. I even found evidence of nipple discharge last fall! I'm getting retested for a bunch of stuff in a few weeks and my goal is that there's something 'off' enough to warrant an MRI... Sad that I'm rooting for an MRI, but I won't be satisfied until I get one!
Have you had any other levels tested? Sometimes with pituitary tumors, it causes other values to be low. In your case, the tumor is secreting too much prolactin, but other levels can be low as a result. Thyroid, cortisol, LH/FSH, progesterone, estrogen, testosterone, etc. can all suffer as a result. My thyroid results in particular are what stand out to me and my doc. Has your doc tested other levels to see if other areas are suffering as a result?
Don't quote me on the drug causing side effects - I'm not sure which one she's on - I think there are several options - and I don't know if it was that or another drug that she was on. But that was always her standard answer. She and I were pretty close while we worked together but she never divulged the pituitary tumor until after we were no longer working there.
I believe radiation is also another option besides surgery. If you look at the link I posted, there's more info about different treatment methods. Though I'm sure there would be risks for that, too. I'm sorry you have to deal with all of this right before TTC! Do you temp at all? That might help you pinpoint your cycles a bit better.
When I was doing my flurry of research in January, I came across info that suggested a lot of docs have the medical knowledge to treat pituitary tumors, but they don't have enough cases to gain the experience needed. Since you're in a big city, perhaps you'll be in luck. I hope so!! They are typically benign, but can still cause quite a bit of problems!
And now I'm rambling...
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Post by JC on May 11, 2011 6:25:58 GMT -5
Just curious, did you have headaches at all or any other neurological deficits like blurred vision or dizziness. Part of the reason why Karen can't get them to do a scan is because she doesn't get headaches. I personally believe that not everyone has the same symptoms and they should just do the damn scan already instead of waiting for her to have neurological problems.
I have a few neurological problems and have had a total of 5 MRI's in the last 6 months. Periodic MRIs are something that's a part of my life too so I can totally sympathize. They don't really bother me much. I'm used to it. But if you have clausterphobia then it could be quite a big deal.
I hope the medications help you so that you don't have to face surgery. I'm in a similar boat with the prospect of needing neurosurgery at some point because of a brain abnormality of my cerebellum. It scares the crap out of me too. I know how you feel!
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Post by Karen on May 11, 2011 6:42:44 GMT -5
Another question - have you had vision changes? That's the other reason why they won't do an MRI on me just yet. I hope I'm not sounding selfish asking all these questions because I'm sure you have a lot to think about!
And if I remember correctly, there are several medications to treat this. If one doesn't work for you or if you have side effects, there should (hopefully) be other options for you to try.
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Post by minnie on May 11, 2011 7:03:02 GMT -5
Yes, they tested all my hormones - I have the results at home. She said everything else is working well and at the right level, just the prolactin that was off.
In terms of headache's, I have never really suffered that much though when I do get one, it was a migraine type. But, really, like that is about once every 6 months of so, so no biggie. In terms of eyesight, I am a freakshow. One eye is short sighted and one long. I don't think that the tumour is big enough to be pressing on the optic nerve which is good news, but it will be interesting to see if anything changes when I am on the meds. They didn't really ask me about headaches when I saw them. It was just the raised prolactin that seemed to get them all excited!
Yes, the MRI's are a pain. It was my first one and I didn't actually realise how small the tube is until I was in it, in my head vice thingy. I had a moment of, OMG get me out of here, then remember that DH had said I should close my eyes and just listen to the music in the headphones and try and picture myself on holiday. It did work but after half an hour in there I was more than happy to get out. Sorry to hear of your trials Jenaya - thinking positive thoughts for you.
Thanks for your support and interest. It is good to have people to talk to about it. xx
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Post by JC on May 11, 2011 7:13:23 GMT -5
There's an open MRI you can have done where you're not trapped in that tiny tube. If it really bothers you then maybe you can find one in your area.
LOL that head vice thing, I call it my face cage. That thing reminds me of the hannibal lecter torture device. HAHAHA.
When do you get to start the medications? After your ECG comes back normal?
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Post by minnie on May 11, 2011 9:35:36 GMT -5
So had the ECG and heart ultrasound this morning. How embarrassing. I walk in and the Dr says this is what we are going to do. Please remove you tops. So I do, standing there in my bra, he looks at me and says, yep that too. So, there I am, stripped to the waist, having a chat with my boobs exposed! Surreal and cringeworthy!
Half an hour later, we have confirmed that my heart is in good working order - hurrah, something is functioning well for once! Got to see my GP on Friday to get the prescription then I had planned to just see if my period turns up on day 29 next week. I guess if it does, I will call the endocrinologist in the wild hope she might suggest something else but I know she will say, you need to start the meds. So next week at this point. LOL re Hannibal Lector - I have to say I thought of that when I was trapped in it!
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