Told i don't have gyno what else could it be ?

[whatsgoingonpuffy]

I have a prolactinoma and have been taking meds for over 10 years to control it, i was recently taken off the meds as my levels were normal but within a few months i started to  feel tingling/pain in my left nipple which i reported to my endo at the time but was not put back on the meds right away, it was only after i mentioned it a few more times that i was put back on them but by this point my nipple had changed into this sensitive puffy cone that you see in my pics.

I have been back on the meds now a few months and noticed zero change despite being told all my blood levels were very good and it's getting me down I need to know what it this is......

Since the mess up i mentioned above I have tried other endo's and they have told me that i do not have gyno, nor do they think anything is wrong with my nipple and when i mention the tingling/pain I sometimes get nothing was said...

Now anyone i have shown this too have been able to spot the difference between my left and right nipple right away, yet for some reason these new endo's dont seem to be able to spot it ? which i find quite strange... surely it would be one of the standout symptoms of a male with a prolactinoma ?

So as you can imagine i am very frustrated at the moment, if my original endo has listened to my symptoms and didn't just go with the numbers on his screen i wouldn't be here writing this and i am totally stumped as to how the 2 new endo's i have seen have not been able to see the growth yet untrained people around me have ? Can you confirm this is Gyno so i am able to get it treated as right now i feel like i am not being listened too or taken seriously.

Thanks



https://i.imgur.com/vBDaxJB.jpg

https://i.imgur.com/6s4mFIm.jpg



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[Dr. Elliot Jacobs]

Any tingling or sensitivity in the nipple area may be an indication of breast growth, no matter what anyone "feels" or what a mammogram shows. 
A prolactinoma is a small, benign tumor of the pituitary gland in the brain which secretes the hormone prolactin, which is the same hormone that is secreted by women to stimulate lactation when they give birth.
With appropriate medication, the secretion of prolactin in minimized.  If off medication, prolactin may be secreted and the breasts may grow.  Once there is growth, it is usually a one way street and the only recourse would be surgery to remove the breast growth.
Your photo does look like there may be breast growth present.
Dr Jacobs

[whatsgoingonpuffy]

Hello Doctor,

Thanks for the reply, i think the reason it has been overlooked is because i dont have a hard lump behind or inside the nipple, it feels like a water balloon... and tends to go down a fair bit when i remove any water retention or my nipple becomes firm from stimulation.
What kind of gyno would this be ? as i keep reading about a hard firm mass.. and who would you recommend in Scotland to go see as i was hoping for help with the NHS.
Thanks

[Dr. Elliot Jacobs]

Most gyno DOES NOT have a firm hard mass -- you are looking and feeling for the wrong thing.  Gyne is most often diagnosed simply by observation and then a physical exam to ascertain the amount of excess tissue (which is usually some varying ratio of fat and gland) lying on top of the chest muscle.  Remember, the definition of gyne is excess tissue on a male chest -- but the amount of "excess" depends on the observer.

When I examine a patient, I do a pinch test of skin and fat, starting just below the collarbone and extending down to the infra-mammary fold.  Most of the time, the excess tissues begin just a bit above the nipples -- but on occasion extend all the way up the chest.

Stimulation of the nipple will make it look good -- but only temporarily.  Surgery should provide a permanent fix.

As to recommendations in Scotland, sorry, but I do not know of any surgeons there.  Best to explore this on the International Forum section of this website.

Good luck!

Dr Jacobs

[whatsgoingonpuffy]

That's brilliant i am going to get a consultation very soon, just curious does a Doctor like yourself that deals/treats patients with gynecomastia also deal/have knowledge of the hormone side of the issue ?
The reason i ask is my most recent blood work that was done, i was told all my levels are good and my testosterone was very good for a young man my age. I don't have the results in front of me, but it has been confusing me how someone with good levels could still me getting the symptoms that i'm getting.. Tingling/itchy nipple with the occasional dull pain behind the nipple.
Is it just because i still have the growth in behind my nipple and once removed that should be the issue resolved, or is it a sign that something is still off hormonal wise somehow and if so would that mean surgery would be best left on hold until the root problem is resolved.

Thanks again.

[Dr. Elliot Jacobs]

Your questions are simple and understandable -- the answers are not.  There is no way to be absolutely certain of the cause of your symptoms -- and if surgery is done, there is no certainty that the symptoms will disappear (although I have had some patients with this situation and surgery did help).

The etiology of gynecomastia is often associated with hormone problems -- but not always. In fact, the largest category for gynecomastia causes remains "unknown etiology."

Dr Jacobs

[whatsgoingonpuffy]

Alright thanks for your time, i'm going to make an appointment with my endo and a surgery locally, and in the meantime try to lower my body fat as low as possible.
Take care.