Leaking breast is it linked to pituitary problems.

[Sarahc1]

For over 10 years I have had leaky milk/ clear breast. I am not pregnancy. But recently had a cyst removed form my ovary. So maybe this has been growing in me for years as it was 9 cm when they eventually removed it.
But I was wanting to know if leaking breast is related to pituitary gland issues and if so what other symptoms. As it may not be related to the cyst.
Any info would be a great help. I am seeing a consultant 14th aug 2013... And I would just like any help. I have seen a consultant 9 years ago and he just gave me tablets that didn't work and said it would stop eventually but it never did. They still leak!!!!!! Help..worried now with all these problems going on at the min.

[JessieD82]

That was the sole symptom that prompted my Dr.to draw a prolactin level. It was slightly elevated so she referred me to an endocrinologist who promptly insisted on an MRI of my brain. Turns out I had a 2 1/2 cm macroadenoma on my pituitary gland. I had surgery a week and a half ago with 2 fabulous surgeons and I am healing well at home. I am having trouble with normal sleeping though. How did your appt go?

[lexi101]

I nursed my daughter for 2 years and continued to produce milk for 7 months after not a lot but enough to notice. I kept bringing it up to my ob who said that my milk was still drying up. FINALLY after asking for several tests they found a pit tumor. She said I was still producing because the size of the tumor (2cm) was creating a "stalk effect" and causing my body to still produce. I had my tumor removed and my mil dried up within a month! So yes it could be a sign of a tumor. Ask them to check your prolactin levels. Mine was a 42 which isn't super high but high enough to order the MRI. Good luck.

[rumpled]

Good. Testing for *hormones* is misleading IMHO - there are a ton of them and you need to test for other things that could influence them as well as the loop if you can. By loop I mean the pituitary that signals the gland and the gland that receives the signal - so it may mean several hormones. Plus it should be done a few times, at the right time of day for certain hormones and it can be complex.

Even vitamin D is a hormone - so unless you know what they really tested... I had no clue though until I got my copies that I was in bad shape for a lot longer and the docs let me be that way.

Even thyroid or cortisol can raise prolactin - so you have to test comprehensively. I hope you find some information in your copies.

[Sarahc1]

I am not sure what I have been tested for. I know they have said they have checked my hormone levels. But this is something I need to talk about in more detail with them on the 14th aug.

I am looking at requesting a copy of my health records so I know what I have been tested for.

[rumpled]

You need a prolactin test. It is a blood test.  Normally my doc does all the pituitary tests at 8am fasting, but that one, as far as I know, is not a time dependent one nor influenced by fasting/non fasting.

You should, however, see if you have been tested in the past? Can you see older testing?

[Sarahc1]

Can you clarify what I should be asking for, regarding the best test I should get done....thanks.
I am seeing someone on 14th July so as much info I can get the better.

Thank you so much for your support and help.

[rumpled]

I would not say that. Pituitary tumors can and do cause headaches, but I would guess the headaches would have happened over the 10 years it was left while you had lactation, not just the period of time after your IUD was removed.

It may or may not be related but as your body is off a set of hormones it was, the change may or may not create more changes with your prolactin - it is hard to say since no one did any testing and there is no baseline.

I would really push to see a competent endocrinologist. And make sure someone tests your prolactin.

[Sarahc1]

Thanks for info.
I am seeing a specialist about my breast on the 14th July 2013. So fingers crossed they can help and do more test and have some better answers.
Since having the coil removed in April 2013, I have been getting bad headaches and haven't had periods. Then 5 weeks ago rushed into hospital and was diagnosed with the dermatoid 9cm cyst and had that removed along with right ovary and tubes. I had 7 day brown blood period, which doc has taken good test and urine test. Waiting results. The brown blood ended Wednesday. But since Friday I have had really bad painful headaches. Pain killers not really helping.
I just think since coming off birth control the mirena coil my body has been trying to adjust with hormones and have periods. But then this is why they found cyst plus I became in more pain cause my ovary was obviously trying to have a period maybe?? But what am trying to say here is that maybe the hormone is also making me have these headaches. Unless now my hormones are changing it is affecting my piturity gland???

[rumpled]

I had period issues (too long, too hard when I did have them and too weird of a schedule as in never regular - but many would not have any period at all - but I had other issues besides the prolactinoma - being another pituitary tumor AND other gyne issues).

These things don't settle. Your doctor was not skilled in his study of pituitary tumors or endocrinology and should have sent you to a specialist. I don't expect the gyno to know about pituitary but enough to test and to send to to a specialist - which is a neuro-endocrinologist.

As for related - it would only be related if the cyst came about due to period issues and I don't think that is the case. As far as I know, lots of women have the cysts and they just happen - I know I had single cysts and PCOS.

It is a shame your gyno did not test for prolactin and your other hormones - it would help get an idea of where you are and help the endocrinologist. You will likely need an MRI. A proper pituitary MRI is with and without contrast and they should take images when you are in the machine so the uptake of the contrast is recorded (dynamic technique) so if they pull you out, it is not a proper one. It may be ok, but the dynamic one can/may show more.

[Sarahc1]

What other symptoms did you have other than leaking breast.
I have not had a MRI scan ..but I have had loads of bloods taken.
The tablets he gave me didn't do anything, I didn't feel any symptoms at all and they didn't change the leaking. So that's why I stopped. He just said it would hopefully settle. Obviously didn't which is why now I have asked for more research as I am concerned with developing the cyst. If I have hormone problems I am worried I will develop more cyst and the leaking breast is a sign to show problems. But the gyno said it wouldn't be related ....however when you are pregnant your breast develop milk to feed baby. So confused

[rumpled]

I am so sorry your doctor has made you wait so long. I hope things are still in an ok way once they find the source of the lactation.

I would guess the doctor gave you parlodel - and the side effects were awful (I took it too) and so you stopped. But without any lab testing or MRI? Ever?

You have to establish the cause - it is likely a pituitary tumor but it can be medications, thyroid or pituitary tumor as well as other things.

If they left it for 10 years and it was a pituitary tumor, then the tumor may or may not have grown.

As for it stopping on its own - no. It won't. You will either be on medication forever, or have to have surgery depending on if you have a tumor and how the tumor had grown and if it can be controlled and reduced in size.

Sadly, your doctor did not serve you well IMHO.