Did you get your prolactin levels checked?

[dreamingdream]

I put this post on another talk page, but I might as well type this here on the antenatal tests page too, I need answers from people, it will be greatly appreciated.

So I have a pituitary tumour, found out in 3rd trimester. In some people prolactin hormone levels become a problem with this tumour, therefore they call it prolactinoma. I don't know if I have the prolactinoma specifically. All I know is I have a tumour on the pituitary gland.

The thing is, I was never screened for my prolactin levels by anyone when TTC, I feel angry and sad, why was I not screened at any appointment? . Did your clinic test you for this? Did there have to be a special reason why you had to get your prolactin tested during TTC or was your prolactin automatically tested as part of the normal testing?

I've never had my prolactin levels checked, by my GP, fertility clinic or midwife, so I don't think it's done routinely. I think it would normally only be checked if someone had symptoms suggesting an issue with prolactin, or if someone were prescribed medications which can affect it. I hope your doctors are able to reassure you with a management plan, and I'm sorry that you're going through this.

To know that I am not the only one not tested for prolactin is a sense of relief, thank you! According to what you are saying, it seems prolactin is only tested for previously known issues, possibly. My pituitary tumour was diagnosed after being discharged from the fertility clinic so they couldn't have known about my prolactin levels, I can't really blame them fully. But if my pituitary tumour was known beforehand via MRI scan, I'm sure my fertility treatment plan would be different, taking into consideration the prolactin.

I've got the same tumour, diagnosed when I realised I wasn't ovulating. The dr did a day 21 test and prolactin levels were very high. She booked me in for a scan, as there are a number of potential causes.

It has caused me no other issues, if that helps? And I too remember being annoyed that no one offered a test that might have shown it sooner.

Good luck.

Yes it seems pituitary tumours are diagnosed due to different kinds of symptoms like not ovulating but my symptom was different, I was having a terrible migraine headache daily, it was the worst headache I have ever had, extremely painful. I would literally cry in pain daily. Then a doctor booked a MRI scan for me (I will always thank that doctor!). I got the diagnosis after a whole month of pain, it was a pituitary tumour. I was not going mad, it was not "just a headache", it was what I thought all along, a serious issue. I was put on medications and painkillers. The headache has gone mostly, just only comes when I'm super stressed. Now I get visual eye field tests often because the medical team are monitoring the optic nerve near the pituitary. Did they schedule eye tests for you too @EATmum ?

Yes they did, but many years ago now. They said it was a baseline so if there were changes in future they could map them - but I've never had need. I'm sorry yours has brought so much pain. That's very hard.

High prolactin interferes with ovulation and stops you getting pregnant.

The fact you got pregnant without taking medication to lower prolactin suggests levels cannot have been that high prior to pregnancy.

You might not have a prolactinoma in that case as if the tumour was big enough to cause headaches the prolactin would be very high.

Hope you're OK.

I've had a prolactinoma nearly 10 years now. Your prolactin will always be very high in pregnancy as that's what make you make milk.

Everyone reacts differently, it took me 3 years to be diagnosed as my levels were just outside normal range but I had daily headaches and fainting and no periods. The right dr took a chance and did a mri, within a month of starting medication my period was back, headaches and fainting were gone.

Hello everyone,

Did any of you have re-occurring chest pains since being diagnosed with a pituitary tumour? I currently have this symptom. I was given cabergoline to reduce the tumour but I developed very bad chest pains affecting my breathing so I was advised to stop this medication. Even after stopping this medication, I still have this very bad chest pain that re-occurs weekly, it makes it difficult to breathe, I get a tight chest feeling and I start collapsing on the floor. I have collapsed four times and I'm worried about the next collapse. The chest pain lasts for 30 minutes everytime. The chest pains are so bad, I have been in hospital and rushed to A+E.

My question is, does the pituitary tumour do this to any of you? Does your pituitary tumour cause chest pains so bad that you end up in Accident & Emergency?

@dreamingdream I haven't experienced that myself, but the leaflet inside says it can cause heart problems if you take a high dose for a long time. Doses for prolactinoma tend to be quite low though. Years ago you were meant to take a break every couple of years to stop any heart problems happening, but it's since been proven that the prolactinoma dose shouldn't cause it - up until I got my BFP a couple weeks ago I had been taking them for 6 years non stop with no issues.

No I was fine on the same drug. The advice changed re heart problems. It can in theory cause fibrosis/ thickening of heart valves so I used to have an ultrasound of the heart every 2 years.

The advice changed as the dose is too small to be of any risk for prolactinoma and don't know when I last had an ultrasound.

I've never heard of a prolactinoma causing chest pain.