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Hi all I haven’t been diagnosed with anything yet but my prolactin levels are 2057 which is very high and I’m scared about my future. If it is a tumour is it treatable and can I go in to have babies. Tia
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Hi! My levels were 13,000 when diagnosed with a prolactinoma. I can assure you it’s treatable & you should be able to have babies! You’ll most likely have an MRI and start treatment. Mine was called cabergoline. I was pregnant within two months of taking the medication. X

@Caitlin thanks for the reply. I am still waiting for brain scan but I am still bit worried as my sister died of a glioblastoma (brain tumour) in May this year so can imagine the word tumour for my family is very scary. How long did it take for you to get a diagnosis? Congrats on getting pregnant. Do you have regular check ups? Xx

@Kirree I am really sorry to hear about your sister 😔 It is scary, your feelings are totally valid. Prolactinomas are not (usually) cancerous. 95% anyway. It was an unusually quick diagnosis, I got mine the next day. Regardless of the diagnosis, you’ll probably start Cabergoline as it’s the same treatment if you have a tumour or not. I go for a MRI every year and a blood test maybe every 6 months xx

@Caitlin thank you. Yeah definitely scary times. It doesn’t help I have been waiting for an mri for 2 weeks and still I Not seen the endocrinologist yet either. What were you prolactin levels when you got pregnant? If you can remember? I just want them to hurry up and get the mri done so I know where I stand. Other than irregular period like one month 25 next 30 etc and feeling tired that’s it. What were your symptoms? Xx

@Kirree it took me 6 months to get the MRI. So might be a long wait for you 😕 My prolactin levels are 312 when I got pregnant. I haven’t had a period since 2012 so that was my biggest symptom but I just put that down to my implant. A little bit of weight gain but nothing too drastic x

@Caitlin that was such a long wait for your mri. I have just got my mri date in for 24th September so not too long. I haven’t heard from endocrinologist yet but guess that won’t be until after my mri. I do have periods but they are so irregular they gave me ultrasound to check ovaries etc and that all come back all good xx

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