Testing for PCOS - high prolactin but no ... - PCOS UK (Verity)

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Testing for PCOS - high prolactin but no outcome

droferwyziad profile image
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So for the past few years you may have seen my posts investigating heart conditions and anemia which still hasn’t been resolved (even though I’m still having the same issues). On top of this, I decided to ask my GP for hormone blood tests as I have always had the most excruciatingly painful and heavy periods (causing fainting and sickness) as well as excess hair growth (especially on my face with thick dark beard hairs). I had some bloods done at the start of September and they only had the Prolactin result back which was high - so they asked me to do another one. It’s now been over a month since both tests and I haven’t had results from either - I have called the doctors multiple times and the receptionist is clueless and said I should ask a doctor but could only do so in November. They’re saying it’s unlikely to be PCOS or endometriosis but won’t investigate the tests any further or give me my results.

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Emma15 profile image
Emma15

hello! I feel like hearing what happened to me might be useful for asking questions of your doctor when you get the chance!

So I came off the pill and didn’t have a period for a year and so was concerned and went to the doctor (also experienced quite bad acne). I went to the doctor and finally got them to do blood tests and also had high prolactin (I think it was 900 and it’s meant to be 400). I also had an ultrasound of my womb which showed follicles (consistent with PCOS).

If you do some research being diagnosed with PCOS is a bit strange in that generally you need 2/3 of the symptoms for it to be classified as such.

I was given a brain scan (two actually -the second one with contrast because it’s more accurate) and that ruled out a prolactinoma. By the way, if that is the problem they’re not too difficult to cure. It’s quite a simple operation as far as I could discover. But anyway I didn’t have it but they gave me cabergoline to lower my prolactin. I now take just half a tablet a week - it’s the lowest dose possible essentially - and it lowered my prolactin to normal levels and it restarted my periods.

I would say just keep on pestering your doctors - perhaps go into the practice itself. Request the scans (ultrasound and brain) and ask about possibility for cabergoline..

I hope that hearing about my situation helps and very best of luck!

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