prolactin levels / pituitary tumor

[SarahB79]

Just out of curiosity, for those of you with pituitary tumors...

What were your initial readings of prolactin before treatment?  

What else was effected in your body by your tumor?

What are they now and what treatment are you doing and for how long?

[foxey54]

can a  pituitary gland cause all the joints in your body to hurt like a toothache all the time?severe pain started after flu in jan 2008

[MICFOX]

Yes, a problem with the pituitary gland messes up all the other glands in your endocrine system.
Pain and stiffness in joints muscles and bones is just part of the general bodily disablement that increases the longer you go undiagnosed and treated.
If you are concerned, Get to a sympathetic doctor immediately, and get an MRI scan.
Good luck.

[Julie251]

I have a pituitary tumour (prolactin) which has been growing for several years.  It started out as a microadenoma but is now an adenoma.  The last time it was checked was about 5 years ago when it had grown from 3mm to 11mm in 8 years.  I can't take the medicine because it caused extreme, extreme head pain and they say it's too dangerous to operate.   Have all kinds of bad things happening in mid age - severe osteo, double vision, cancer, extreme light sensitivity, broken bones that don't heal for months, chest pain, very poor immune system, and so many other things.  Guess I will  die from it because there's nothing they can do.

I also don't understand why hands and feet are much growing bigger (even though I've lost weight) and have fat around face even though the tumour doesn't produce that kind of hormone.  

One thing I did learn about tumours caused by prolactin is that just because your prolactin level doesn't rise, it doesn't mean your tumour isn't growing.  The tumour can grow quite big while your prolactin level will remain exactly the same as it was when it was small.

[SarahB79]

Have you sought out different Dr's for opinions?  I think it would be much warrented to get a FULL panel of blood tests done... a new Tesla 3.0 Pituitary MRI with/without contrast and take those results to a handful of different endocrinologist... specifically neuro endocringologist (ask them what type of endocrinology they specialize in... if it's not pituitary, move on).  Also see a neurosurgeon.  

NeuroEndo's can usually be found at a local university hospital.  They seem to flock to those. :-)

[LivingInHope]

You might want to look into acromegaly regarding bigger hands and feet.  Why haven't the doctors referred you to someone who could remove the tumor?  I had an acupuncturist who had a sister who had a large pituitary tumor removed that was causing headaches.

[divinemar]

Hey Sarah:

My prolactin level was 466 on the first draw and 412 two weeks later.  I am on cabergoline - but I have not noticed a big difference in my symptoms.  

My tumor is 11mm.  I am exhausted and have a headache that never goes away.  My vision is blurred and I was hoping that the cabergoline would make a difference quickly.  I have not noticed a difference as of yet.

Good Luck!  Also Julie - have them check your growth hormone.  If that level is high you can die.  I hope you get some good help.