Raised prolactin - what to expect at endocrinologist?

[ravenia]

Went to GP last week due to extreme fatigue and persistent headaches... all blood tests (hormones included) came back perfect except my prolactin levels are a little bit on the high side (normal is around 600, mine are 873).

GP wants to refer me to an endocrinologist since the headaches are worrying her. Can someone give me an idea what to expect at the appointment? I keep finding stuff online about prolactinomas and MRIs, but I really have no signs of PCOS or anything other than the fatigue and headaches. I have the referral letter but I'm too scared to drop it off at the hospital!

If it's relevant, I have moderate depression and anxiety and am currently on a cocktail of 3 anti-depressants.

I’ve had raised prolactin for 15 years. At its highest it was 4000. I had an MRI and it came back clear but the endocrinologist said smaller prolactinomas don’t always show up anyway. To be honest it doesn’t really cause me any issues. When I wanted to conceive both my children I took a higher dose of cabergoline until my periods became regular (I never have them normally) and if my prolactin levels go sky high generally I take cabergoline once a week. Now I’m 40 and menopausal due to other autoimmune conditions (I have lupus, Addison’s, sjorgens, hypothyroidism etc) the endocrinologist said they don’t worry about the prolactin levels so much as basically they aren’t worried re my fertility or whatever. So I’ve now stopped needing to take the cabergoline and they just monitor my levels. When I was pregnant with my dc they did 2 weekly visual field checks as if a pituitary tumour grows it can affect your side vision. But that’s quite rare.

The main thing to watch out for is that obviously if you have a pituitary issue of any kind it can affect the rest of your hormones - so the endocrinologist will want to regularly check all your other levels for things. If you have one autoimmune disorder you often go on to develop more.

www.pituitary.org.uk/information/

Thank you very much Bagels - I was imagining myself having monthly scans and stuff and scaring myself silly.

No plans for kids at this point, and my periods are regular (and all related hormones in range).

I am personally hoping it's all a stress/mental health related spike which will go down with the new meds. However I trust this GP very much - so if she thinks she wants an endocrinologist to review, I will go along with it.

Some SSRIs can raise prolactin levels.

See www.ncbi.nlm.nih.gov/pmc/articles/PMC5440440/

When you say "a cocktail of three antidepressants", which drugs are they? The elevated prolactin might be a side-effect of one of your medications.

I had missed the part about being on antidepressants- these can definitely affect your levels. As can the combined pill or anything oestrogen based.

@NoNotHimTheOtherOne

When you say "a cocktail of three antidepressants", which drugs are they? The elevated prolactin might be a side-effect of one of your medications.

They are: a flupentixol/melitracen combo (Deanxit, I think it's not used in the UK?) amitryptiline (Amirol)

and the GP has just started me on agomelatine (Valdoxan), but that started after taking the blood sample.

I'm just hoping the endocrinologist looks at the results, says this is nothing to worry about, and sends me on my merry way. I was hoping the tests would find something really easily fixable (e.g. low iron), not something that needed specialist referral

Hi, I was referred with similar levels, I was happy as previously they hadn’t been considered as potentially contributing to my fertility issues, as they were only slightly raised. I didn’t have a scan, just more bloods and I was put on meds to bring the levels down.

In my case as I had been struggling with infertility for a long time, the endocrinologist thought it was worth trying the meds as even slightly elevated levels can have an impact. They may not recommend this in your case. My periods were also regular. I got pregnant naturally straight away afterward, so I’m eternally grateful to that endocrinologist (and Dr.)

I stopped the meds eventually, I took a break and the levels stayed down, I started them at around 34. I think I was on them on and off around 5 years, a fairly low dose and didn’t really have any side effects other than a bit of difficulty sleeping, which was sorted by taking in the morning. I also built up to the full dose gradually. I saw the endocrinologist every 6 months, just for a quick chat and the side vision check, while on the meds and then was discharged. The medication I took was called Norprolac.

Sounds like your doctor is being thorough and the endocrinologist will talk you through any suggested treatment.

I was also prone to headaches around then, but I’m not sure if it was related. No fatigue as far as I can remember.

Good luck.

Thank you very much :) This sounds a lot less scary than the horror stories I was imagining.

Lots of medications, including antipsychotics and TCAs can also cause high prolactin - worth asking your GP about.

Flupentixol can certainly elevate prolactin levels (see list of common & very common side-effects at bnf.nice.org.uk/drug/flupentixol.html#sideEffects). This is a side-effect of most antipsychotic drugs, which are used in a wide variety of mental health conditions now. In fact, a patient in the US sued Johnson & Johnson for $8,000,000,000 a couple of years ago because the risperidone he was prescribed off-label (i.e. not for a licensed use) for autistic spectrum disorder when he was a child caused breast growth. The damages were cut to $7,000,000 last year and J&J just lost an appeal in May. It's less common for tricyclic antidepressants (melitracen).

Although the flupentixol dose in the combination treatment is quite low this is something the endocrinologist is likely to consider as a possible cause. I don't think they are likely to just say "nothing to worry about" and send you away. On the other hand, I don't know how likely they are to book an MRI until they've seen what direction the serum prolactin levels are going in. It's important to get started with seeing the endocrinologist: if you don't start you might never find out what's causing your problems.

@Bagelsandbrie . Hi also in the same boat was just wondering when you done your was it done with a contrast dye or without ?