Prolactinoma

[TinkerBlue]

Anyone out there have experience of this condition. I have a diagnosis but am waiting for endocrinologist referral and would love to hear anyone's stories. Did you have MRI's? Any side effects from the treatments? Any problem getting pregnant after commencing treatment? I know this is quite rare but would be heartened to hear from fellow sufferers with a bfp? Or without a bfp for that matter....

[TinkerBlue]

Hopeful bump?

[thereinmadnesslies]

My friend has this - she's not on MN unfortunately. Since diagnosis she's had three babies, falling pregnant quickly each time. She had to change her medication to one more suitable for pregnancy each time and couldn't breast feed as the medication suppressed her milk, but otherwise hasn't had problems.

Hope someone more knowledgeable comes along soon x

[TinkerBlue]

thank you so much. Interesting about the bf, that I did not know. Lovely to hear about her 3 dc's.

[crispycookie]

I have/had one. I did have an MRI to determine the size... The way I discovered it was that I did not get any period after I stopped the pill and blood test showed increased level of prolactin. The good news is I got pregnant pretty much the first month I took the medication (Cabergoline) and now have two beautiful boys (both times conceived very quickly on Cabergoline, stopped taking it the moment I got pregnant). Monitored through my pregnancy via visual field tests (testing peripheral vision as apparently it's the fist thing to go if the tumour grew and pressed on optic nerve). I did continue on a v low dosage of Cabergoline) once I was done getting preggers and had one MRI in the last year that showed no tumour and I am off the medication. Best of luck, I was v worried in the beginning but in the end, I got pregnant with ease BUT I did have issues BFing though was told it shouldn't have been affected! PM me if you need anything answering!

[AnneofWindyWillows]

My microprolactinoma was 7mm when first diagnosed and has shrunk since then Like cripycookie I've taken Carbergoline. I haven't had any problems with it. I've had a few MRIs to keep an eye on it.

I've got two DC and am expecting DC3 in March. No problems getting pregnant. DC1 was conceived after taking stopping Carbergoline, DC2 was conceived when I was still breastfeeding DC1, DC3 took a little longer and was conceived a couple of months after finishing breastfeeding DC2 and a few weeks after starting to take Carbergoline again.

Hope all goes well with the endocrinologist TinkerBlue x

[TinkerBlue]

Wow, many thanks for the positive stories. Ttc 6 years with a diagnosis of pcos so assumed that was cause of infertility. Recent tests showed no pcos but high prolactin (1500) gp is convinced it is a microprolactinoma. Waiting for endo referral since Nov. Hopefully I can start treatment quickly as 6 years is a hell of a time and I'm now 33. Far from old for babies, I know, but I'm very keen to get on with things!
May I ask if either of you can recall how high your prolactin levels were? Mine seem on the low side of high iyswim? I've read online about people having levels of >5000?

[AnneofWindyWillows]

Mine was over 2000 when first diagnosed and then went down to about 700. It went back up to about 1000 after DC2, but I was still breastfeeding when the test was done and that would have increased the prolactin level x

[Fairylea]

Hi I have 4000+ levels... and 2 healthy children! Just took dostinex to bring the levels down when I wanted to conceive and within 18 months ish periods returned to normal and I became pregnant. Stopped drugs during pregnancy and afterwards went back onto contraceptive pill just in case (!) even though this also increases prolactin my endocrinologist is happy for me to take it as long as I have regular mris and blood tests.

It's never been a problem for me really.

[TinkerBlue]

Thank you, I've read stress can cause an increase in prolactin and my tests were done at a tough time. I wonder if that could account for my high levels. Although gp said at more than double the normal range I have a diagnosis of prolactinoma. They may do an mri to confirm. Can't wait to get started on treatment. It sounds like I may not have long to wait for my bfp after beginning it from what you have all said.

Thanks again for sharing, this was something I'd never heard of so to hear from mums with the same diagnosis with no problems is great.

[originalusernamefail]

Hi I was diagnosed with a microprolactinoma following no periods / infertility after stopping the pill in Dec 2012. I fell pg with my son in............Dec 2012 approx 1 week after starting treatment . I had x2 MRIs once during and once after. I took norprolac for 1 month. Tests after my son was born show no trace of tumour though I will be monitored for relapse I am currently medication free. Good luck OP

[originalusernamefail]

As for side effects the tablets made me super - sick / nauseous. I lost a stone in 3 weeks and my appetite disappeared.

[Lisbethel]

Let me know how things go. I don't have any insights myself yet - I was diagnosed with a big prolactinoma this week with an mri and high prolactin (over 5000). I've started on cabergoline and am not allowed to TTC for 3/6 months so that the prolactinoma can shrink first. I had come off the pill and tried for six months before getting the blood tests before being tested and realising the prolactin was so high that ovulation was probably impossible! I have polycystic ovaries too which will not make ttc any easier. I was quite upset about the additional delay to ttc but I am trying to focus on being grateful that I've at least been diagnosed now before the tumour got any bigger and caused more problems. And will try to use the extra time to get healthier before hopefully getting a bfp!
Good luck Tinkerblue. Fingers crossed for you!

[Phephenson]

My mum has one - and there's 4 of us! no problems TTC there. Not sure what she used to take but she mistook my youngest brother as the menopause

[TinkerBlue]

So D-Day is almost here and I have the endocrinologist referral this Wednesday - eek! Anyone know what to expect:

• will he just then refer me for a scan?
• could he write a prescription there and then?
• could the scan referral be another few months wait? (its 4 months from GP making diagnosis already and I haven't been seen yet)
• do I need to take someone with me? I do for gynae appts as I tend to get tearful after cervix bashing (they keep looking for endometriosis).

Wrongly (I know) I am tres excited to lose a stone originalusernamefail esp. in 3 weeks! (silver linings).

Lisbethel how you doing? I hope very much that the meds are starting to work for you. I also was diagnosed with PCOS many years ago but if it gives you hope - I no longer meet the criteria for it - so am PCOS free after many years of battling.

[Lisbethel]

TinkerBlue, didn't see your most recent post on the thread - sorry. I hope everything went well at your appointment. I would have thought they would refer you for an MRI rather than diagnosing you based on blood levels alone. If so, I hope you didn't have to wait long for the scan! How are things going now?

My prolactin levels came back to normal within 7 weeks (maybe earlier, but that's when I had my blood test done) - so glad the medicine has been working. The side effects haven't been too bad, though I seem to be gaining weight rather than losing it which is annoying - must do better! I'm seeing the endocrinologist next week and really want to know what's next - hopefully being waved off to TTC, but I will try not to get my hopes up as she did mention perhaps having to wait 6 months or so. Sadly I had an ultrasound scan in January so the PCOS diagnosis has been refreshed. Would be nice to have only one thing to deal with. But it's great news that yours cleared up - congratulations! And I like all the positive stories you've elicited on this thread