Re: why is it so hard?

March 27, 2003

I know what you mean. I have a similar story - diagnosed low T back

about 10 years ago, Dr. suggested I lose weight - like the low T was

a result of being 20-30 lbs overweight, rather than the weight was a

result of low T! I went to my Dr. last summer and requested lab work

for T and E, T came back about 300. My Dr. wouldn't agree to T

replacement, but agreed to refer me to an Endo.

This disease or condition or whatever affects so many men, but so

little attention is given to it. Our society doesn't seem to be as

concerned about men's health as it does women's health these days,

even though we die years earlier, are at much greater risk for heart

attacks and strokes and commit suicide at a much higher rate than

women. Compare how society deals with breast cancer and prostate

cancer - much more money is spent proportionally on breast cancer

research than on prostate cancer research - proportional to the

number of deaths attributed to each. Men are much less likely to go

to the doctor in the first place, and when we do we get the brush

off for things like this that have a major effect on our quality of

life.

Hang in there. Bunch of guys here know just how you feel and will be

glad to offer suggestions.

Jim

> I was just looking through some of the posts from the group, and

have

> finally decided that I have secondary hypogonadism. As a matter of

> fact, I knew I had a problem about 10 years ago or so, because I

asked

> my doctor to check out my levels, and came back with a level of

240.

> But unfortunately I believed him when he said that I

was " basically in

> the normal range " . Of course at that time, there was no internet,

and

> no information to research. The only book I could find on the

subject

> was something called " The Virility Factor " . I am still feeling

these

> symptoms today, and in some ways even worse, because of the extra

> weight gain, and COMPLETE lack of sex drive, etc... I just would

like

> to know why it is so hard to get a doctor to listen, and understand

> what we are going through? I just had to get an appointment with a

3rd

> doctor to see if I can get a referral to an Endocrinologist. I

have to

> wait about a week and a half to see my PCP, and hopefully she will

> give me a referral. The main problem is that I will probably have

to

> wait about 3 months to see him, that is if she decides she wants to

> help, and if he is unwilling to help the process starts all over

> again. Sometimes like now, I feel so frustrated and have tears

welling

> up in my eyes as I type this. Sorry to be rambling, but don't

really

> have anyone else to talk to about this.

March 27, 2003

I really feel for you and believe me, I understand your pain and

frustration. What I will say though, when the tears come let them flow.

Crying is the best stress reliever you'll ever have.

I am assuming PCP is what we call a GP (General Practitioner) in the UK, or

is a PCP something else?

In this country it's easy to change GP's, finding a good one (someone

prepared to listen and hear) however is not so easy. It's a matter of

shopping around. I've had 11 GP's in the last 15 years. It seems that

Doctors the world over have been allowed to become complacent. I can count

on one hand the amount of Doctors who have openly admitted that to be so. In

fact I met a GP last week who said those immortal words, " I don't know " . I

was staying with a friend and his GP came to the house to give me my testo

shot because his surgery is not wheelchair accessible. He was interested to

know more about Klinefelters, admitting that he didn't know a great deal

about it and had not come across it since he was a student some 25 years

ago. I've never met a doctor who was so keen to listen and learn and as I

have been ill for over 30 years, I've met a lot of doctors.

Don't let them grind you down. Learn as much as you can from this and other

groups, books and the web. Don't waste your time on doctors who are not

willing to learn. Good luck and keep smiling.

Kindest Regards,

Steph

www.XXY.com-1.net

----- Original Message -----

From: " ddsbadboy "

Sent: Wednesday, March 26, 2003 9:18 PM

..................I just would like to know why it is so hard to get a

doctor to listen, and understand what we are going through..................

March 27, 2003

ddsbadboy,

Until I found my current health care providers I felt very much brushed off

and ignored whenever I mentioned my feelings that something was wrong with

my T counts.

I had many of the physical and emotional symptoms of hypogonadism but I had

the misfortune of dealing with doctors who were either uninformed, stupid,

lazy, arrogant, too busy, indifferent etc.

Shame on me that I went so long allowing myself to be ignored. This was MY

health and my responsibility. Unfortunately I went through my teens,

twenties, thirties and part of my forties being something less than I was

meant to be. Doctors held the power. How do you buck the man with the

prescription pad and the insurance companies that (of course) encourage

minimal treatment not to mention the inflated prices the pharmaceutical

companies hold over us? (Whoops! Almost got started on a whole 'nother

diatribe, there. Sorry.)

Anyway . . . ddsbadboy, many of us have been through the same nonsense

you're going through with the brick wall of medical care regarding HRT. And

this group has been a godsend. The info on these pages along with the

support of the community is a gift.

I'd suggest you research all the health issues that accompany low T

(osteoporosis and depression to name two) and bring them in to your PCP. It

might help to bring in the documentation that total T in a blood workup

means very little without checking for the other factors like bound T free

T, SBGH etc.

What's easier said than done is to go into your medical appointment without

shaking these papers in your doctor's face and coming off like a mad-man.

Sometimes hard to comport yourself with dignity when the issue is one that

is so fraught with emotion and when you sometimes deal with arrogant

uninformed " professionals " who won't take the time to educate themselves.

A level of 240 might be interpreted as in the normal range but it is far

from desirable or healthy especially for a man who knows what he is feeling

in his own body. Good luck and keep us posted.

Tom

PS Sounds as if you're with an HMO, yes?

why is it so hard?

> I was just looking through some of the posts from the group, and have

> finally decided that I have secondary hypogonadism. As a matter of

> fact, I knew I had a problem about 10 years ago or so, because I asked

> my doctor to check out my levels, and came back with a level of 240.

> But unfortunately I believed him when he said that I was " basically in

> the normal range " . Of course at that time, there was no internet, and

> no information to research. The only book I could find on the subject

> was something called " The Virility Factor " . I am still feeling these

> symptoms today, and in some ways even worse, because of the extra

> weight gain, and COMPLETE lack of sex drive, etc... I just would like

> to know why it is so hard to get a doctor to listen, and understand

> what we are going through? I just had to get an appointment with a 3rd

> doctor to see if I can get a referral to an Endocrinologist. I have to

> wait about a week and a half to see my PCP, and hopefully she will

> give me a referral. The main problem is that I will probably have to

> wait about 3 months to see him, that is if she decides she wants to

> help, and if he is unwilling to help the process starts all over

> again. Sometimes like now, I feel so frustrated and have tears welling

> up in my eyes as I type this. Sorry to be rambling, but don't really

> have anyone else to talk to about this.

>

March 27, 2003

Thanks for that URL. I sent them the following Email.

I am also a single gay man (Intersex)

----------------------------------------------------------------------------

----

I've been reading some of the articles on your website regarding low

testosterone. I have been using TRT for almost 15 years because I have

Klinefelter Syndrome, the most common sex chromosome anomaly. I note you

have no references to Klinefelters, yet it affects 1 in 700 males.

I have spoken to many people who use TRT between the ages of 14 - 75 and

most have talked about how their testes have shrunk.

In the UK we use a different form of measurement and if my memory serves me

correct, the 'normal' range is between 9 and 21 nmol. The majority of people

with a 47, XXY karyotype need a higher amount than what is considered

'normal'. My current reading is 45 nmol from a regimen of 150mg 1.5ml

Sustanon every 7 days. While my libido is very high 24/7, I am not in good

health. I am impotent and use Viagra. I have muscle waste (doctors do not

know the cause), Arthritis, Diabetes, Glaucoma, Disturbed sleep pattern,

Chronic fatigue and several other minor complaints.

Unfortunately it appears that very few doctors including endocrinologists

the world over, know far too little about the affects of Klinefelter

Syndrome on the individual. This is probably because they deem Klinefelters

to be rare, while in fact it is quite common. Detection is rare, because the

majority of doctors do not listen to their patients, nor do they look at the

whole picture.

When a patient presents with chronic fatigue for instance, they may also

have small genitalia, and/or Gynecomastia, and/or a pear shaped physique,

and/or lack of upper body muscle mass, and/or weakened muscles and the list

of possibilities is endless. However when a patient presents in front of a

doctor, more often than not the doctor will only be looking at his/her

speciality.

Despite being a patient at 3 different hospital clinics since the age of 12,

I was not diagnosed with Klinefelters until I was 27. I have talked to so

many people in a similar situation. Yet so little is known about the

syndrome that even today I and many more have a constant battle to get

doctors, social services and other such statutory bodies to understand the

severity of the symptoms that the syndrome can cause.

And not just people who have Klinefelters. People who have Hypogonadism

whether they be in the their teens or their 90's, I hear them speak of

similar problems.

While TRT has given me a new lease of life, I can't help but wonder what

harm is it doing to my body? I know of 2 endocrinologists who think the

muscle waste may be associated with TRT, while my own Rheumatologist thinks

it may be associated with the extra X. Given that there are others with

similar symptoms, in his opinion it merits a research programme. Without the

research no one can know for definite.

So, while I would recommend TRT, I also have to be aware and cautious of the

possible harm it could doing. I know that excess testosterone is converted

to Oestradiol <sp>. In 1995 I had lyposuction to reduce my breasts, 8 years

later and my breasts are back again. I was overweight in 1995. Since then I

have shed almost 50lbs and reached my target of 168lbs, which I am informed

is my ideal weight (I am 5 " 9' - 175cm tall). For the previous 20 years my

doctors insisted my breasts were caused because I was overweight. I also

know that in people who have Klinefelters, we are up to 20 times more

susceptible to breast cancer than the average XY male and ideally should be

having a mastectomy rather than lyposuction, but getting a doctor to agree

is quite another matter entirely.

I thank you for reading through this long message, but here I have barely

touched on the tip of the iceberg. I've only spoke about the physical

problems. The psychological problems associated with Klinefelters and

Hypogonadism would fill volumes.

Kindest Regards,

Steph

UK

----- Original Message -----

From: " Merati "

Sent: Wednesday, March 26, 2003 10:20 PM

> I understand what you are going through. 8 years ago I

> tested low for T but nothing was done about it. Then,

> five years ago I was told that my lack of erections

> and libido were because I was not completely

> monogamous (I am a single 30yo gay man). After going

> through psychotherapy to form more " intimate

> relationships " and more years of pain and symptoms,

> man should, I got to the right doctor and staff who

> suggested(!) a testosterone blood test. I showed my

> doctor the book by Eugene Shippen, and we did nearly

> all the tests listed for all probable causes of

> hypogonadism....................

>

> http://66.77.148.98/

March 27, 2003

I couldn't have put it better myself!

Steph

----- Original Message -----

From: " jimevans_2000 "

Sent: Thursday, March 27, 2003 4:12 AM

> I know what you mean. I have a similar story - diagnosed low T back

> about 10 years ago, Dr. suggested I lose weight - like the low T was

> a result of being 20-30 lbs overweight, rather than the weight was a

> result of low T! I went to my Dr. last summer and requested lab work

> for T and E, T came back about 300. My Dr. wouldn't agree to T

> replacement, but agreed to refer me to an Endo...................

March 27, 2003

Maybe we should all make copies of these posts and dump them on our

physicians desks in the hope that they might actually read one of them!

I've yet to meet an endo who specialises in anything but Diabetes (in this

country).

I agree with Tom that my health care is my responsibility and if a doctor

refuses to listen to me, then it is up to me to do something about it. " F**k

off " , usually has some impact, but not recommended )

At my 6 monthly appointment at the Diabetes clinic last year, the endo

introduced me to a student saying, " This man has " the rare " condition,

Klinefelter Syndrome " . Before I allowed him to continue any further, I asked

him politely that if he was going to teach someone something, it would be

useful to get his facts straight, at which point I informed the student to

do her own research and she would find that far from being rare,

Klinefelters is quite common. The endo lost his cool. I politely and calmly

said to him that I found his manner very unprofessional. He again told the

student that the syndrome is quite rare. I suggested to her again that she

should look into the matter herself. The endo then said, " It depends on what

books you read " . I suggested to him that he must be reading books written

more than 40 years ago. His response (as he lost his temper) was, " I am just

a consultant endocrinologist, what would I know " ?

Again with calm and politeness I responded, " Not a great deal, apparently " .

He then said, " We are not here to discuss Klinefelters " . I pointed out that

it was him who initially raised the subject.

I met the student a short time later when I was leaving. She said she was

impressed by my attitude and that she would do as I suggested.

The moral of my story: In the face of adversity, try to remain calm, be

pleasant and be sure to have half an idea of what you are talking about. And

who better to teach, than a student doctor.

Steph

----- Original Message -----

From: " Tom "

Sent: Thursday, March 27, 2003 12:12 PM

> ddsbadboy,

>

..

>

> I had many of the physical and emotional symptoms of hypogonadism but I

had

> the misfortune of dealing with doctors who were either uninformed, stupid,

> lazy, arrogant, too busy, indifferent etc.

>

> Shame on me that I went so long allowing myself to be ignored. This was

MY

> health and my responsibility..................

March 27, 2003

You're absolutely right. As a student nurse getting ever closer

to being an RN, I have learned that many doctor's are still acting

like they are God's gift to everybody, are not willing to criticize

themselves, and not willing to rethink what they thought they knew.

It is up to each of us to make sure we get the treatment we need.

There is a ton of information on the Internet, and it is helping

us more and more to call the bluff of old school doctors.