Author Topic: Newbie here would like to say "Hello"  (Read 1690 times)

Offline PaulClarke

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ftp://Hi Guys,

I discoverred this site after watching "Boys with Breasts" on the Bio channel.  I run a charity sity similar to this one which is designed for people with pituitary tumour.  I myself have one of these tumours on part of the pituitary gland that produces prolactin.  It is a hormone producing tumour.

Being an extremely rare condition, unfortunately the average lenght of time it takes to get diagnosed is over 6 years from first visit to a GP.  Nobody knows the number of people that never get a diagnosis.

"Moobs" is just one of the many possible effects and since the site was launched, we have helped to scientifically link this condition to other medical conditions such as ME, MS, lupus and Fredericks Attaxia.  Should anyone wish to check out further details, Posting of the web address is not permitted but if you wish to visit it for researcg, you can email me and I will pass it on.  My email addy is info@pituitarychat.com.

I look forward to gettingg involved in chat here - I had no idea such a site existed.  until a few minutes ago.  When I tell the members back in the pituitury tumour support site about this site, I suspect your membership might take a sudden jump.

For now, regards from Ireland,

Paul

Offline jimmygyne

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6 years seems about right. When I first had the courage to see a GP, and showed him my two concerns, I could see he was quite puzzled. He did not even touch them to see what I was talking about! He referred me to a specialist - an endocrinologist. He too seemed equally puzzled and had me run a battery of hormonal tests. After my subsequent contacts with his office, all I was told was that my results are normal! - no diagnosis!

It wasn't until google searching one day about "men with boobs" and filtering through mostly pornographic content, I came across this site and was finally able to put a name to the condition! I was quite in a state of joy induced shock to realize that other too suffered from this condition, it can be corrected and it has a name!




Offline Dr. Elliot Jacobs

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I am quite surprised that it took 6 years to arrive at your diagnosis.  Any endocrine workup for gynecomastia should include a prolactin level -- and then once a prolactinoma has been diagnosed and confirmed by CT scan of the pituitary, then there is medical treatment available (Dostinex).

While many cases of gyne start around puberty, when or if gyne begins at another age (ie 20's or beyond), then a thorough endo workup is indicated.

Glad you are now being treated.  Once your prolactin levels have stabilized, you may consider gyne surgery since (unfortunately) your breasts will persist even though the abnormal levels of prolactin have been corrected.

Dr Jacobs
Dr. Jacobs 
Certified: American Board of Plastic Surgery
Fellow: American College of Surgeons
Practice sub-specialty in Gynecomastia Surgery
4800 North Federal Highway
Boca Raton, Florida 33431
561  367 9101
Email:  dr.j@elliotjacobsmd.com
Website:  http://www.gynecomastiasurgery.com
Website:  http://www.gynecomastianewyork.c

Offline Paa_Paw

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Welcome!

I would not be surprised to find that you are correct in that the condition is under-reported. At the same time, I agree with Dr Jacobs that the condition should not be missed nearly so often as it is.

Perhaps, with efforts like yours and those here, things will improve.
Grandpa Dan

Offline PaulClarke

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Hi Guys and thanks for your replies.

When you consider that only about 1 in 10,000 people get pit tumours and only about 5% of those are `prolactinomas (most affect growth hormone causing acromegaly), many endos would go through their entire careers without coming across "Moobs".

While a pit tumour is benign, it tends to come withh other goodies like addison's and lupus.  I myself spent 3 months in hospital this year - one of those in my second coma so I would ge`t it checked out.

Certainly, get your prolactin levels tested and I would recommend you get  your hydrocortisone checked while you'rè at it, if only to rule out anything sinister.

Thanks again for the we`lcome guys :D`

Regards,

Paul

Offline PaulClarke

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Thanks for your informative reply Dr. Jacobs.

In fairness to the medical profession, it wasn't "moobs" that first brought my case to the attention of the doctors.  I hàve been very lucky insofar as despite having the highest reading this country (Ireland) has ever recorded, my "Moobs" are mostly due to weight gain from steroids.  In fact, while I was in the coma, my weight dropped to about 10 stone.  Apparently I was moob free at that time so losing the weight I regained should have some impact on my masculinity.  I was also on to sachets of Testogel a day which was not administered when I was in hospital.

My main concern would be that some members here may in fact have a prolactinoma without knowing about it.  Every patient is different.  Extreme fatigue tends to be the most common symptom.  This fatique is more than just tiredness or something you brush off as just getting older.  This fatigue can be totally dusabling.  Compromised eyesight can be another clue as the tumour puts pressure on the optic nerve(s).  I lost and regained the sight in my left eye on 3 occasions.  Head pain, especially over the eye can be another clue.  This is not a headache - this is pain that requires large doses of pethadine or morphine to control.  I enjoyed two stays in Galway Hospice while they tried to get control of the pain.  With a mere 8 beds servicing a population of over 1.5 million people, I was extremely lucky to get a bed there - once for 26  days and again for 8.  Not many patients get to stay in a hospice twice and are able to write about it a few years later!  ;D

A blood test for prolactin is easy and can be done by your gp.  If further investigation is warrented, they will do an mri - specific to the pituitary gland.  Most tumours come in under 1 cm.  When you consider that the X0Ray "Slices" an be 1 cm apart, it is easy to get a false negative.  Prolactin readings tend to be used to measure changes in size of the tumour.

The drug you refer to - "Dostinox" is a dopomine agonist and was first used to help with women's fertility.  It made sense to use the same drug on men with high prolactin levels due to hormone producing pituitary tumours.  A happy side effect was that they discovered it also tended to shrink the size of the tumour.  Cabergoline and Bromocryptine are two other drugs that have the same effect.  During my 3 month stay in hospital, I was mistakenly given 1,000 mg of dostinox a day along with a similar dosage of bromocryptine.  hile I was not too happy when I found out as it has recognised side effects such as scarring of the heart valves, my tumour reduced in size from 4.2 cm to .9 cm!

While medically, my moobs are the least of my worries, from a psychological point of view, they have totally destroyed my self confidence, made me feel like a freak - an "it" rather than a man or a woman, and on occasions, taken away my will to live.  While for some people, they would view them as the butt of their sense of "humour", I think it woulod be a grave mistake to  underestimate the affect they can have on some people.

I have no idea what percentage of men with moobs have them as a result of a prolactinome.  I would imagine  from years of research thet it is nore likely than not.  Having said that, I am not a doctor and not qualified too give medical advice, only share my own experiances and opinions.

Perhaps the owners of this forum in this case would be prepared to allow me to give out the address of the pituitary tumour suppport site?  I firmly believe that the members of both sites would benefit greatly from reading eachothers postings and talking to eachother.

I am slowly ploughing through the oistings here.  Should anyone have any queries, they can email me at info@pituitarychat.com.

Apologies for the epic & regards,

Paul


 

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