Raised prolactin - What did you experience?

[GW0210]

I’ve recently had several blood tests done that confirm high levels of prolactin. They have shown increasingly high levels of prolactin, now up to 2000 and I’m currently referred to endocrinology and waiting a consultant appointment sometime in next few weeks but am looking to hear about other people’s experiences of high prolactin.

Over the last 12 months I’ve increasingly experienced weight gain, especially around my belly, on off bloating, irregular periods, low mood, brain fog, forgetfulness, constipation and severe mood swings/angry outbursts.

Whilst I wait for my consultant appointment I’m hoping to learn what others in a similar position have experienced. Could these things all be caused by this raised prolactin?

hi @GW0210 ,I hope you are well. I also have high prolactin and multiple blood tests showing it continues to be elevated so i will be re referred to endocriniology and possibly for a scan to check for pituitary tumour...Have you had your cosultation yet?

@GW0210 Oh I forgot to mention i also experience a lot of bloating, constipation and brain fog but i also have ibs and my periods are quite regular. I also get other pms symptoms and left sided pain that radiates down my leg.

Yes - I have microprolactinoma. My only symptom was production of breast milk when not pregnant / feeding. It can cause headaches too but not sure about other symptoms.

hi@Orla32 , did it affect you with conceiving and have you had treatment?

I have two DC and actually didn't impact it at all - although I know it can. First pregnancy I was on treatment (a tablet (cabergoline I believe) once a week) and second pregnancy I was on no treatment at all.

I haven't been on treatment for years now and the endo team just keep an eye. I actually have an annual appointment this month - so I guess I may go back on treatment now I've finished breastfeeding.

Thanks for the replies. Been a while since my original post, thought I'd give an update.
I saw the endocrinologist who prescribed Cabergoline straight away and referred me for an MRI scan of my pituitary gland. The scan showed no tumour but consultant said it could still be there just too small to detect or the raised levels may be caused by something they don't know about and they would class me as currently having 'Idiopathic hyperprolactenemia'

The Cabergoline has been good at reducing my symptoms and I have felt a lot better but still not 100%. Consultant said prolactin likely to lower quickly but other hormones may take a while to rebalance.

I've had a follow up blood test and have been waiting for results to be sent to my GP in a letter, however in the meantime I have found out I am now pregnant after 2 years of TTC, so appears Cabergoline had an immediate impact, at least on my ovulation. Consultant has told me to stop the Cabergoline straight away and just waiting to hear their plan for follow up or monitoring in pregnancy.

I'm only 7 weeks so early days but certainly the outcome we were hoping for so I am feeling positive.

Congratulations on your pregnancy. I had raised prolactin and ttc for 4 years including failed IVF. My levels were lower than yours < 1000 and therefore not thought to be the issue, but I was eventually referred to an endocrinologist and prescribed Norprolac. I fell pregnant naturally almost straight away. I stopped the medication and had increased monitoring during my pregnancy and all was well. I restarted the meds afterwards but it eventually self resolved ( I didn’t have a tumour) and I was able to stop them.

Congrats!!!!@GW0210 thats great news. All the best to you and a beautiful journey for you🤗🤗🤗

Ahh great news!! Congratulations!!

The only real monitoring I had in pregnancy was testing my peripheral vision in the 2nd and 3rd trimester.

Best of luck!! Xx

@GW0210 Congratulations!! Could i ask how long did you have wait for your endocrinology appointment once you were referred by your Doctor?

I was referred last week by the Doctors to see an Endocrinologist as have been trying to conceive about 2 years and doctor blood tests come back as moderately high prolactin (600-700).

i am wondering whether i could ask my GP Doctor if they can put my on Cabergoline now, or whether to have to wait for the Endocrinologist appointment.

xx

Hi @ELFxx sorry to hear you have been struggling TTC too but good to hear that you might be getting to the bottom of it and some help.

I was referred by GP November 1st, had a cannulated blood test (multiple samples taken over a 2 hr period) with the endocrinology department mid December but only saw a nurse that day who couldn't tell me much. Bloods were back within a week confirming again the high prolactin and I was then put on wait list to see consultant. I than saw them in Feb where Cabergoline was prescribed and a follow up appointment and MRI scan booked in for mid March.

Feels like it was a long process as I first saw my GP in July. I seem to have had quite a few blood tests to 'confirm' the raised prolactin and each time it has crept up a bit more.

I spoke to a lady whose GP did prescribe Cabergoline before they saw endocrinologist but my GP said they wouldn't/couldn't do that and needed the endo outcome letter before prescribing as they will now issue me repeat prescriptions in future if needed.

Hope your journey is smooth from here x