Prolactin Levels - i have high prolactin levels but no tumour, what does this mean?

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I'm a 30year old active female with a history of prolactin/pituitary problems.

- when I was 17 I was diagnosed with a pituitary marcro adenoma. I responded well to cabergoline so no surgery was carried out to shrink the tumour. - - When I was 19 my MRI showed a small bleed to the tumour which caused it to shrink completely.

- when I was 21 I was taken off cabergoline and my prolactin levels remained normal for a few years.

- when I was 25 I noticed familiar symptoms, breast discharge and fatigue so went back to my consultant. My prolactin levels creeped back into the abnormal range and I was put back on cabergoline. MRI showed no tumour.

- 3 months back into treatment I found that cabergoline was making me incredibly tired and low so my consultant switched me to Quinogolide (norprolac) which worked and gave me no nasty side effects.

- I'm now 30years old and last year my consultant and I thought it was time to stop medication as my prolactin levels remained in the normal 300 mark. 2 weeks after coming off my medication I noticed my moods changed significantly and my sex drive vanished. I went back for immediate blood tests and my prolactin levels had raised up to 700! I went back on Quinogolide to reduce the levels and once again felt OK.

- I recently had another MRI to see if there had been any changes. My MRI was once again clear.

I'm incredibly frustrated and gutted to still be taking medication for something that I simply don't understand. Why are my prolactin levels continuing to rise yet I no longer have a pituitary tumour!? I go back to see my consultant in a couple of weeks but I fear that nothing will change and I will continue to treat a problem rather than get to the bottom of the cause :-(

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  • Posted

    Excess prolactin causes a reduction of oestrogen via the 5-alpha reductase enzyme thereby giving you menopause symptoms.

    I was suffering from constant head and face sweats (a severe case of hot flushes) although I was on oestrogen therapy (post hysterectomy and oopherectomy).  It took 6 years of this before someone referred me to an endocrinologist.  I had a micro-adenoma of the pit gland.  After starting carbergoline there was instant relief.

    My prolactin had gone up to >4000.  However, every time I tried to reduce the medication after getting back to normal levels, there was an onset of menopause symptoms - which means that my prolactin levels must be increasing immediately.  Endo decided that there was no harm for me to continue to take carbergoline and it has been more than 7 years now that I have continued taking it.  My pit gland is now tiny.  The endo continues to monitor my levels, and I have an MRI every year.  Insist on that, as I don't believe that is the end of the story.

    Women with excess prolactin need extra oestrogen to protect their bones and all the other harm that menopause causes.

    I also have haemochromatosis which is known to affect the pituitary gland and I have a long history of fatigue and body pain so I cannot say that the carbergoline caused any of these symptoms.  I thought it was magic after the years of suffering.

    For the sake of the rest of your health you might also have to stay on it - just keep monitoring it.  Yes, it seems strange, but there are worse things (as I keep telling myself).   Someone I know had hers surgically removed, therefore requiring having to take all sorts of medication to replace her hormones.  Unfortunately, she died of tumours in the brain a few years later.  Connected?  I did not have that information.

    But obviously, it was not being monitored regularly to catch it in time.

     

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    • Posted

      Hi,

      thank you for spending the time to reply to my post, :o) I really appreciate it.

      Sorry to hear you have had your own problems, in a strange way it's nice to know i'm not alone!

      My main concern at the moment is the long term affect of the medication I'm taking, along with the fact i'm relying upon this pill to keep me 'normal'.  Without it my levels increase rapidly causing me to feel incredibly depressed which is scary, yet on it i'm constantly tired.

      When I had the large tumour I understood what was wrong with me and found comfort knowing the problem was being treated.  Now, I have no idea what the actual problem is and I get incredibly frustrated.  

      I constantly remind myself "It could be worse" but the unknown really stresses me out.

      thank you again for your reply

      x

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    • Posted

      Ask dr to check your Iron Studies if they have not done so recently.  There may be something else going on.

      Have you googled "quinogolide and fatigue" to see if this is common?

       

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    • Posted

      I have, I've also spoken to my consultant about it and feeling drowsy, dizzy or sleepy is a common side effect.

       

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  • Posted

    Did you manage to sort it out. I am newly diagnosed and just started Cabergoline.?
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