Gynecomastia? I'm confused!

[stevey]

Hi All

A few months ago, I noticed my nipples hurt when I washed them in the shower.  When I pressed them, it was like there was  a shard of glass inside each one.  Then I examined my boobs and could feel lumps inside them and things that felt like strips of fat.  I called 111 and they got me  GP appointement the same day.  They guy had a feel and did and emergency referral to the breast clinic which came round in a week.  The consutant examined my boobs (and testicles!) and said she was sure it was gynecomastia but I could have a mammogram if I wanted.  Of course, I snapped her hand off as I needed to be sure it wasn't cancer.  Anyway, mammogram done and results in.  It's gynecomastia.  No evidence of cancer phew!

The consultant told me the usual treatment was either tamoxifen or anastrazole, both of which are anti-cancer drugs but are used off-label for gyne.

Probably like many of you, I've done tons of research on gyne.  In fact I've driven my wife to distraction :-).  Remember that song - "the more I find out the less I know"?  I'm not medically qualified, but I can read, research and find what I consider to be proper authorities for information (ie not facebook, twitter or reddit lol)

I'll tell you what I've learnt but please feel free to correct any wrong assumptions :-)

The typical issue for coffin dodgers (I'm 64) is that as men age their testosterone naturally declines.  In addition they can put on a lot of weight, particularly around the belly and the fat is a good store for the enzyme aromatase, which converts testosterone to estrogen.  So it's a bit of a double-edged sword, with a decrease in testosterone and and increase in estrogen.  This imbalance allows the naturally occuring female breast tissue in a man to grow.  Men and women both have testosterone and estrogen, but it's the balance that's important.  Women are normally estrogen dominant and men are normally testosterone dominant.

Phew!  Sorry this is so long!

So onto my case.  I don't get it, I'm pretty old but....  I'm only a few pounds overweight so it's unlikely to be the aromatase/fat issue.  I've decided to lose those few pounds anyway, just to be sure.  In addition, I convinced my GP to do a testosterone blood test.  This came back at 13 nmol/L which is normal.

So.... with normal testosterone and a hormone imbalance I must have high estrogen?

Onto the drugs.....  Anastrazole is an aromatase inhibitor which would address the overweight/conversion issue.  I'm not sure if it will work as I'm not overweight (much).  Also a possible side effect is Steven Johnson's Syndrome, where you develop a rash, your skin dies and falls off, then you die.  It's quite  rare side effect, but I already take a drug called Lamotrigine, which also can have the side effect of SJS.  I'm not keen on taking two drugs with such a scary side effect.

And Tamoxifen?  A common or very common side effect is blood clots.  As a stroke survivor, I'm certainly not keen on that.

So what's the issue for me?  I've read that after about a year, the breast tissue becomes fibrotic and no medication works, the only remedy being surgery.  I found my lumps/pain around January 2023, so it's been a few months already.

Of course, the NHS don't care.  They say if you need surgery, you have to go private at a cost of £3.5K to 5K.  So I'd like to avoid the surgery and of course, the high cost.

My thinking is that I should get  full hormone work-up from the doc, to try and diagnose the cause as I understand it can be caused by an  issue with the pituitary gland or the hypothalamus which can be shown in a blood test.

Clearly I'm at an early stage, but would like to anticipate and address the future.

All replies gratefully received... :-)

Cheers

Steve

[Brdy64]

Hello Steve,

Go ahead and ask for as much work up a your medical services are willing to provide. This will at least set your mind at ease.
You have to allow yourself at least that, or you will always feel like you didn't do enough.

Be prepared that they might come back with the term idiopathic, or a condition of unknown cause.

I personally don't like that term because it makes the assumption that 'there is something wrong'.
That couldn't be further from the truth.
Some men have breasts, and they come in all shapes and sizes. Just like female breasts.

I went on testosterone treatments for two years back in my 20's, and it was the worst decision of my life. One that I greatly regret today for obvious reasons! 💃
My body was destined to be and become a certain way, and who were we to 'play God' with such intervention. Dangerous intervention.

Do everything you can to give yourself peace of mind. You need that for yourself. Then come to your own conclusions. 
My personal choice is accepting the cards we are dealt. 😉

Birdie

[stevey]

Hi Birdie

Thanks very much for your quick reply which I read with interest.  I see you've come to some acceptance which is excellent.  I'm a long way from that as my nature is to understand things (obsessional lol).  I'll probably research it until I'm satisfied, or my head explodes, whichever happens first. :-)

After writing the post, I found a private endocrinologist only a few miles away from my home, so I've emailed them for a quote.  I'll post up with the results.

Yes, idiopathic.  I read about that and think it means "we don't know what it is".  It's like the psychological terms, reactive and indogenous.  Reactive means we know what caused it and indogenous means we don't lol.

Well, fingers crossed the clinic comes back to me and the price isn't too scary.

Have a good day....

Cheers

Steve

[Brdy64]

Hi Birdie

Thanks very much for your quick reply which I read with interest.  I see you've come to some acceptance which is excellent.  I'm a long way from that as my nature is to understand things (obsessional lol).  I'll probably research it until I'm satisfied, or my head explodes, whichever happens first. :-)

After writing the post, I found a private endocrinologist only a few miles away from my home, so I've emailed them for a quote.  I'll post up with the results.

Yes, idiopathic.  I read about that and think it means "we don't know what it is".  It's like the psychological terms, reactive and indogenous.  Reactive means we know what caused it and indogenous means we don't lol.

Well, fingers crossed the clinic comes back to me and the price isn't too scary.

Have a good day....

Cheers

Steve

Keep us posted, that's what friends are for! 

[stevey]

Will do and thanks again :-)

[Upfront]

Idiopathic = without detected cause.
Without detected cause there is no condition for treatment.
I have had gross idiopathic blood white cell imbalances  diagnosed age 16.
The NHS believes in "evidence based" treatment. So you are unlikely to be offered treatment!
How far you you want to go down the rabbit hole of worry is up to you, bearing in mind that idiopathic  very often means Normal (for you) 

[Brdy64]

  I'll probably research it until I'm satisfied, or my head explodes, whichever happens first. :-)

Well, Steve has a right to be diligent in this search.  😉

[stevey]

Hi Birdie

"Well, Steve has a right to be diligent in this search."

You're right although I do have a rather obsessive nature.  I was diagnosed as bipolar some years ago, but now I keep being asked if I think I'm autistic lol.  I think in short I'm nutty as a fruit cake lol.

After reading your post I too a quick peek at your profile.  I see your life has had a few twist and turns, but I think it's great you've managed to find your place in life.  Not everyone does, so well done :-)

Did I see on one of your posts you feel restricted in what you can post here?  I can't see it now, or maybe I dreamt it?  Anyway I think everyone's welcome here, both sexes as it's good to get different points of view from as many people as you can.  Then you can learn something.

Hi Upfront

Gosh I'd never heard of a white cell imbalance.  Are there any symptoms?

I actually don't mind idiopathic too much, despite my persistent interest to understand.  If my hormones are not imbalanced (verified by a blood test) then I'll be happier.  From what I've read, men and women are designed to have a certain balance and if that balance is out, it can cause a range of other health issues.

As things stand right now, I'm not too bothered about the gyne.  My nipples really hurt when I press them (so don't press them!) and the extra tissue isn't that noticable so I'd happily carry on like this as long as it didn't progress a lot further.
The only thiing I'm concerned about is growing a fairly decent pair of female boobs.  Now, I'm no Arnold Schwazenegger and I don't spend hours in front of the mirror preening myself, but I'd struggle with boobs.  I liked being a boy and also like being a man and boobs doesn't quite fit into my view of myself.
I hope I've not offended anyone talking like this, just putting my own feelings forward.

Keep Smilin'

Steve

[Brdy64]

Thanks Steve!
Yes, my life has had some twists 🙄.
I tried to live the 'expected' lifestyle for many years, and ALL of those years I was hiding my breasts. I have had at least a B cup my entire adult life.
Little over a year ago things got interesting 🤔. I started growing, and this growth spurt still continues. 
I'm an E cup UK sizing.

To be truthful to myself and others, I have always been a woman deep within my inner self. Everyone around me knew it, so I wasn't hiding very good. 🤣
Physically I was kind of 'on the fence' as well. 
My teens held a typical Cheerleader body type with just a small little bit of man junk below. 
I was the world's worst kept secret!

I am under the care of my doctor and several specialists. Everything has been checked, and my breasts are idiopathic (head scratchers).  They are meant to be there, and they are. It is my 'normal'. But then again, I'm a woman so I'm supposed to have breasts. 💃

For those that don't 'want' them, the acceptance side of this forum is a great place to start. Here people from all over the world can share their experiences and how they deal with things.
We are all different, and each of us will have to find our own comfort zone. I hope you can find yours!

I find myself getting a little overly enthusiastic in my posts, and later decide to delete them. So you are not imagining anything. I have deleted a few of them recently. I also need to remember that this forum is about gyno. 🤔

[gotgyne]

The only thiing I'm concerned about is growing a fairly decent pair of female boobs.  Now, I'm no Arnold Schwazenegger and I don't spend hours in front of the mirror preening myself, but I'd struggle with boobs.  I liked being a boy and also like being a man and boobs doesn't quite fit into my view of myself.
I hope I've not offended anyone talking like this, just putting my own feelings forward.

Keep Smilin'

Steve

Hi Steve, show us some pics of your breast and we'll comment on them and your fear. In most of the cases the gynecomastia is so very mild that nobody shall take offense at it. It is quite possible that it is only in your mind.
John

[stevey]

Hi Birdie

I must admit I find your outlook very reassuring.  I'm not well built to accept things, I like to understand and control them however, acceptance can be a powerful tool as you eloquently point out.

Everyone around me knew it, so I wasn't hiding very good.

How were you treated by those that knew?  Did they accept you for yourself?

I see what you're saying about the forum.  I've always really liked forums.  You can learn so much and get valued opinions from others.

Thanks I hope I can find my own comfort zone too.  At the start I made lots of jokes about it to my family, like wearing a skirt to my mammogram and searching eBay for makeup.  When they came back with their own jokes, I didn't like it and realised I was more sensitive than I realised.

As far as I'm concerned, you can post whatever you like, Gyne forum or not.  As I mentioned I've been on quite a few forums over the years and noticed that sometimes you get the users who consider themselves 'forum police' checking what everyone says and complain if someone is off-topic.

Personally I'm happy to talk about anything.  I'd rather have a proper conversation than one about the 'price of beef' lol

Hi John

Thanks very much for your kind offer, but to be blokey about it, I don't have the balls yet :-).  My boobs aren't bad at the moment, I 've had quite pronouced pecs for years as I used to do weight training.  Part of this effect is my bones as doing bench presses accentuated the bones under my pecs.  Although I can see what you're saying, the emotional effect of the condition can make you think in catastrophic ways.

So in short, if things stay as they are I'm not too bothered.  Currently if I press my nipples, they hurt so..... don't press them!  Reminds me of that old dad joke where a man goes to the doctor and tells him that when he stands on one leg, his hip hurts.  The doctor said well don't do it then!  (apologies I'm a dad :-))

The physical changes are quite minor and just feel like long strips of fat under the skin.

The clinic hasn't come back to me yet for the blood test, but I'll chase them up tomorrow and post up any progress.

Keep Smilin' All.......

Cheers

Steve

[Brdy64]

How were you treated by those that knew?  Did they accept you for yourself?

I think I had more a problem than anyone around me, except my teens were exceptionally hard. 

My case is different because I have been quite feminine since about 12-13ish. As an adult I hid my true self and my breasts, but I was the worst kept secret in the world. 

I was treated just fine for years. Everyone knew but most never mentioned it to me. I did have at least a few ask me if I was gay. 

I stressed myself out over nothing. All I needed to do was accept myself for who I was and what my body was.
That I really learned to do very recently. You would be surprised how little people really care, and just want to go about their own lives. 

Acceptance was quite the experience as I had quite a bit more to accept than I had really wanted to admit, but acceptance means not lying to yourself anymore and being who you are fully. 💁‍♀️💃🙆‍♀️

I announced to everyone, and most everyone already knew. They knew before I did it seems.
 
I have had some mixed reactions when it comes to dress code at center, but it's working out okay. 

[stevey]

Hi Birdie

That must have been diffcult for you at such an early age and as we all know, teens are very sensitive and take things hard.  But on the other side, maybe it kicked you into accepting yourself, which sounds very healthy to me.  Every cloud eh?

I've had a reply from the private hospital company, but I need to contact the actual hospital itself for the blood test.  I'm away tomorrow for a few days for a family visit, so I'll contact them next week and post up any progress.

My step-daughter has just had a baby girl so we'll get time to spend with them all which I'm looking forward to.

I'll not be able to post up for a few days as I'm not lugging my laptop on the train lol, but I'll post up again Mon/Tues so....

Have a good weekend everyone!

Cheers

Steve

[Brdy64]

Hi Birdie

That must have been diffcult for you at such an early age and as we all know, teens are very sensitive and take things hard.  But on the other side, maybe it kicked you into accepting yourself, which sounds very healthy to me.  Every cloud eh?

I've had a reply from the private hospital company, but I need to contact the actual hospital itself for the blood test.  I'm away tomorrow for a few days for a family visit, so I'll contact them next week and post up any progress.

My step-daughter has just had a baby girl so we'll get time to spend with them all which I'm looking forward to.

I'll not be able to post up for a few days as I'm not lugging my laptop on the train lol, but I'll post up again Mon/Tues so....

Have a good weekend everyone!

Cheers

Steve

That's great news Steve, congratulations is in order!
Grandchildren are great, enjoy!

Yes, perhaps acceptance was easier for me since I had it so rough for so many years. 🤔
But my suffering as an adult could have been remedied earlier by accepting it a younger age. 
Everything happens in it's time, not before or after. 

Enjoy yourself!

[stevey]

Hi Birdie

Thanks very much and it is great lol.  Before the birth, All I really cared about was that mother and baby were ok and they were :-)

Yes, maybe if you had found acceptance earlier, it would have saved you some pain, but I think it takes some maturity to get to where you are now, so maybe that wasn't an option for you.

We've just got back from Nottingham after seeing the family.  It's great to see mom & dad buildling up their confidence as parents.  We went on the train. so no driving and we were driven around and fed and watered regularly, so really chilled.

My current pet theory for the Gyne is a drug I take called Lamotrigine for bipolar.  Now, I can find zero evidence for lamotrigine causing gyne, apart tfrom my own timeline.

I started on the drug In Jan 2023. In Feb I had nipple pain and in March I found lumps.  Off to the GP and off to the breast clinic and the subsequent diagnosis.  I hadn't changed meds for quite some time, so this was the only change.  I'm seeing the psychiatrist on Wednesday so I'll put this to her and see what she thinks, possibly a meds change.  Then it will be a wait and see to check if the Gyne resolves.

On a slightly different note, I've bought some reusable silicone nipple covers from eBay as my nipples are hurting more and if I catch them on something, ouch!  Yesterday I opened a bag of Hula Hoops which was tight, so I pulled the bag open close to my chest.  It burst open and caught both my nipples which hurt lol.

Anyway if the covers are any good and don't rip the hairs off my chest, I'll start a new thread to let people know how I get on.

Keep Smilin

Steve