Elevated Prolactin & Pituitary Adenoma (Micro)

[Sparkle44]

I have a 3mm Pituitary Adenoma on my Pituitary Gland. I am not currently taking any medication but I am under an Endocrinologist who makes me feel like a hypochondriac!

I was first referred to an Endocrinologist early last year due to feeling extremely fatigued and a number of my hormones dropping below the normal range:

-Testosterone

-DHEA

-Free Androgen Index

I had a short synacathen Test to check my adrenal glands and without stimulation my 9am cortisol averages at 157-213. They were not concerned.

My prolactin is currently 619 mu/L (normal range (102-496).

I am sooooo tired of feeling tired and drained!!

I am on a ‘watch & wait’ programme.

-I also have left peripheral blurry vision being investigated at hospital.

- I have polypoid maxillary thickening in my left sinus.

Benign Nodule on right thyroid

Primary Lymphedema in 4 limbs.

Fibroids!

I don’t feel like I have any quality of life

Any suggestions?

(age 45)

[Hidden]

Sadly many Endo's don't have enough experience of pituitary/adrenal issues, it sounds like your Endo fits into this category! You need to be seen at a centre of excellence rather than a local hospital. I would hope that your Endo would have put you on a drug to lower your prolactin levels to help shrink the tumour. When they did the SST did they take an ACTH blood test? What did you stim too? Your base level cortisol is on the low side which would make you feel unwell. It's your right to a second opinion, so contact the Pituitary Foundation Helpline so they can direct you to an appropriate hospital. 0117 370 1320

[Sparkle44 in reply to Hidden]

Thank you sooooooo much! I will defo call them. I feel emotional. It’s just so healing that someone actually cares about what I am going through! My Endo definitely didn’t want to take me on as I had transferred from another hospital for a second opinion. The Endo started by advocating for the last one and said they will run routine tests but it’s unlikely anything will come back! But they were wrong as my high prolactin led to the SST which evidenced that it wasn’t due to stress. Then I had the MRI which found the adenoma, but due to the low DHEA I was initially given medication to increase my DHEA but this was only because I said my libido was gone. The Endo seemed more concerned about my lack of libido than anything else!!

I would love to go to a centre of excellence! Are there any in the UK? Will call that number tomorrow. Huge thanks x

[Hidden in reply to Sparkle44]

Yes there are several - it all depends on where you are in the country! If you want to pm I can help you with that too. I'm a moderator for Cushing's UK a FB group so am getting to know the good hospitals!

[Sparkle44 in reply to Hidden]

Hi I live in SE London. Thanks

[bantam12 in reply to Sparkle44]

My husband has a pit tumour and a neighbour has just had surgery in London to remove hers, they both see an Endo in Taunton who is very good with pituitary stuff.

[Sparkle44 in reply to bantam12]

Do you know if their tumors were micro or macro?

[bantam12 in reply to Sparkle44]

Husband has micro, he takes Cabergoline to reduce the prolactin, neighbour had macro, her sight was affected and she was quite unwell.

[Sparkle44 in reply to bantam12]

Sorry to hear about your husband and neighbour. Do you know how high your husbands prolactin was before he was given medication? My Endo says mine is mildly elevated but if it stays elevated that’s when she will trial medication. She is really reluctant to give me any medication, and during one discussion on the phone indicated it was about cost!

[bantam12 in reply to Sparkle44]

Sorry can't remember the levels, he has so many medical problems it's difficult keeping up with everything !

[Sparkle44 in reply to bantam12]

Sorry to hear that. I hope things get better x

[john_83 in reply to bantam12]

It’s been suggested that I start Cabergoline due to a Pit Adenoma found through a recent mri. Does your husband suffer from taking it at all? What’s his experience? I’m worried to start due to the liver issues. Thanks so much for any advice.

[bantam12 in reply to john_83]

Sadly my husband died in March after heart surgery otherwise he would have been happy to talk to you about Cabergoline but all I can say is that while he was taking it he had no side effects or problems. I would assume they will closely monitor your liver function and if any issues crop up then come up with another plan. Good luck 🙂

[Sparkle44 in reply to bantam12]

Hi Bantam12, so sorry to hear about your husband! How are you holding up? x

[bantam12 in reply to Sparkle44]

I'm ok thanks, still lots to sort out but I'll get there eventually x

[Sparkle44 in reply to bantam12]

I guess it’s about putting one foot in front of the other at the moment. It’s so kind of you to think of others during such an incredibly difficult time. Sending virtual hugs! x

[john_83 in reply to bantam12]

Sorry to hear about your husband. Thank you for replying. John

[Sparkle44 in reply to john_83]

The alternative is Bromocriptine which is what I changed too due to putting weight on when I took Cabergoline. I am sure it affects people differently. Mine is a micro adenoma.