I'm New Here!

[Guest guest]

In a message dated 15/12/2005 00:20:08 GMT Standard Time,

sleepbearblue@... writes:

I think this is great having people to talk to that know what I'm

feeling! I'm 40, have had P for 30 years (it's really bad now). Was

told several months ago I have PA, although now I realize I have had it

for 7 to 8 years. Neck, back, hands, knee, ankle and arm.

Hi Holly,

A very belated welcome to the group. This must be a new personal best for me

with regard to the time taken to answer a mail. Nearly three months. lol I put

any mail I am going to answer into a folder but I must have put this into the

wrong one by mistake. Hopefully you will have had a few answers from the

others anyway.

How are you getting on with the Remicade? Doing well I hope?

By the way, I'm , I am in Scotland. I'm 48. I've had P since the age

of 23 and PA from 30 years old and I am on MTX and Enbrel so I couldn't have

helped you with your Remicade question anyway so at least that's something. lol

Hope to hear from you again.

Take care,

[Guest guest]

,

Thanks for responding to my post! I was taken off Remicade because of a

reaction. I am starting on Enbrel next week. I am very sensitive to

medications which is making this all very hard and slow process! I have good

and bad days just like everyone else.

I have been reading all the post, it helps and I learn new things everyday

about PA.

Thanks for your reply,

Holly

Maine

martincoyless@... wrote:

In a message dated 15/12/2005 00:20:08 GMT Standard Time,

sleepbearblue@... writes:

I think this is great having people to talk to that know what I'm

feeling! I'm 40, have had P for 30 years (it's really bad now). Was

told several months ago I have PA, although now I realize I have had it

for 7 to 8 years. Neck, back, hands, knee, ankle and arm.

[Guest guest]

In a message dated 11/03/2006 02:38:19 GMT Standard Time,

sleepbearblue@... writes:

Thanks for responding to my post! I was taken off Remicade because of a

reaction. I am starting on Enbrel next week. I am very sensitive to

medications

which is making this all very hard and slow process! I have good and bad days

just like everyone else.

I have been reading all the post, it helps and I learn new things everyday

about PA.

Good luck Holly. Keep us informed if you can.

.

[Guest guest]

Hi

welcome to the group! My name is Shirley and I live in Arkansas

I was born in lexington NC. and later my parents moved to MD.

but we always went back to NC. every summer to visit family

good luck with your disc.which part of NC. to you live in?

singpraisedevotion <debbie930@...> wrote:

Good Afternoon everyone and thanks for allowing me to join. I'll tell

you a little about myself. I've been married for 27 years, have 2

children, a daughter who is 23 and a son who is almost 17. I have one

adorable grandson who is 3. I work with special needs children at an

elementary school (I'm now out on summer break!!!) and I am involved

with my church where I belong to a wonderful ladies group and sing

with the choir. I live in NC. I have a herniated disc, 2 that are

bulging, degenerative facet joint disease, stenosis and fibro as well

as osteoarthritis in a lot of my joints. I have very good days and

then, well, you all know about the " other " days. I've never had

surgery and hopefully, I won't have to. I also love to talk and meet

new people (can't you tell?!)

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

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

HELLO DEBBIE,Let me welcome you to the group.

{ALSO A GREAT BIG WELCOME TO ALL THE RECENT NEW MEMBERS }

I have herniated disk at the C4-C5 level as well as bulging g disks at the

C5-6 and the C6-7 level .

Also have bulging disks at the L4-5 and at the L5-S1 level. I have constant

pain in my neck and shoulders and arms. Both of my legs go numb if I stand or

walk for more than 5 to 10 minutes.

I also have very hard ,intense muscle spams in my back from the damage to my

spine. It causes my whole body to jerk extremely hard. After they stop I am

extremely sore for several days and am unable to do much of anything.

You will fit right in here in this group.WE ARE HERE FOR YOU.

We are here with an ear to bend when you need to vent and

to try to answer any question that you may have.

Well, I guess that I've said enough,so I'll shut up for now.

ONCE AGAIN,WELCOME TO YOU AND ALL OF THE OTHER

NEW MEMBERS

MAY YOU HAVE A BETTER DAY TOMORROW THAN YOU HAVE HAD TODAYTAKE AS BEST CARE AS

YOU CAN AND BE SAFE

LARRY FROM COWTOWN

{FT.WORTH TX,WHERE THE WEST BEGINS}

livingpraisedevotion <debbie930@...> wrote:

Good Afternoon everyone and thanks for allowing me to join. I'll tell

you a little about myself. I've

been married for 27 years, have 2

children, a daughter who is 23 and a son who is almost 17. I have one

adorable grandson who is 3. I work with special needs children at an

elementary school (I'm now out on summer break!!!) and I am involved

with my church where I belong to a wonderful ladies group and sing

with the choir. I live in NC. I have a herniated disc, 2 that are

bulging, degenerative facet joint disease, stenosis and fibro as well

as osteoarthritis in a lot of my joints. I have very good days and

then, well, you all know about the " other " days. I've never had

surgery and hopefully, I won't have to. I also love to talk and meet

new people (can't you tell?!)

REMEMBER ALL OF OUR MEN AND

WOMEN IN THE ARMED SERVICE OF OUR NATION

PRAY THAT THEY MAY BE SAFE

AND SOUND IN BODY AND MIND

[Guest guest]

HI Debbie welcome to the grou, should be easy to remember your name

( my sisters who this group is dedicated too) Sorry to hear that

pain has brought you to the group. But you couldn't find a more

wonderful,caring, supportive bunch of people online. We all suffer

from some sort of pain most of the time. The good days are the ones

you learn to enjoy when you get them. The bad ones you just pray are

short lived. I just had surgery on my back 3rd on for a double

fusion. Am recovering slowly and praying the old pain stays away. So

far I still have pain, not surgical anymore but the nerves and

muscles still complain. Of course they were in pain so long 6yrs I

can't blame them. Sounds like you have a busy life. Welcome to the

group, talk away Sharon Group Owner

>

> Good Afternoon everyone and thanks for allowing me to join. I'll

tell

> you a little about myself. I've been married for 27 years, have 2

> children, a daughter who is 23 and a son who is almost 17. I have

one

> adorable grandson who is 3. I work with special needs children at

an

> elementary school (I'm now out on summer break!!!) and I am

involved

> with my church where I belong to a wonderful ladies group and sing

> with the choir. I live in NC. I have a herniated disc, 2 that

are

> bulging, degenerative facet joint disease, stenosis and fibro as

well

> as osteoarthritis in a lot of my joints. I have very good days

and

> then, well, you all know about the " other " days. I've never had

> surgery and hopefully, I won't have to. I also love to talk and

meet

> new people (can't you tell?!)

>

[Guest guest]

hi julian i am in uk and having problems with getting a decent NHS endo

is this endo you have NHS or private ??

can i ask you for his details??

regards paul

I'm new here!

Hi All,

Firstly - great to find a group set up for this particular topic!

I'm relieved and I hope can learn much from everyone and possibly

help others with my knowledge / experiences.

My condition / situation has yet to be identified 100%. I'm

currently working with a leading endo (UK) to figure out what is

actually going on with my hormones.

What I do know is that from the age of approx 21 I've had pretty

much zero sex drive. I have an arm span of 4 inches greater than my

height (typical of Klinefelters - I'm 6ft 5 " ) but have no other

associated symptoms. My blood test results have puzzled many doctors

as they sometimes comeback fine, other times they are out of range

but the root cause has yet to be pinned down.

Also, interestingly - I grew from 5ft 10 " to 6ft 5 " in just over a

year at the age of 20.

I don't have a recent print out with me, but from memory my typical

results show LH / FSH in the normal range and my testosterone is low

normal. In terms of SHBG, it fluctuates to the top end " in-range " ,

my E2 is usually in-range normal. Sadly in the UK I am unable to be

prescribed certain drugs via the NHS, that I know work well for

others, such as Arimidex - but I have been given Tamoxifen (which

did nothing to improve my situation unfortunately) and have tried

DIM to no avail.

My endo believes I'm particularly sensitive to estrogen (I had

gynocomastia until surgically removed a few years back), and we do

know that my liver aromatises testosterone far too actively... apart

from that work continues and I hope to have my libido restored some

point very soon!

I'm 29 now and have been without sexual desire for far too long

(since approx 21) but like many others just hoped it would come back

without addressing the issue. I'm now ready to confront it and

hopefully get some good quality of life back! :-)

Cheers,

n

[Guest guest]

Hi and welcome what kind of DIM did you use I feel this is your problem you need

to get your E2 down and keep it there. I had tried a lot of brands of DIM and

the only one that worked 3 yrs ago was Indolplex/DIM you can order this and get

it in 2 - 3 weeks start with one pill at dinner if you try this let me know. I

can help you not go to low.

http://www.ritecare.com/prodsheets/PHY-15336.html

Phil

jude_corbit <jude_corbit@...> wrote:

Hi All,

Firstly - great to find a group set up for this particular topic!

I'm relieved and I hope can learn much from everyone and possibly

help others with my knowledge / experiences.

My condition / situation has yet to be identified 100%. I'm

currently working with a leading endo (UK) to figure out what is

actually going on with my hormones.

What I do know is that from the age of approx 21 I've had pretty

much zero sex drive. I have an arm span of 4 inches greater than my

height (typical of Klinefelters - I'm 6ft 5 " ) but have no other

associated symptoms. My blood test results have puzzled many doctors

as they sometimes comeback fine, other times they are out of range

but the root cause has yet to be pinned down.

Also, interestingly - I grew from 5ft 10 " to 6ft 5 " in just over a

year at the age of 20.

I don't have a recent print out with me, but from memory my typical

results show LH / FSH in the normal range and my testosterone is low

normal. In terms of SHBG, it fluctuates to the top end " in-range " ,

my E2 is usually in-range normal. Sadly in the UK I am unable to be

prescribed certain drugs via the NHS, that I know work well for

others, such as Arimidex - but I have been given Tamoxifen (which

did nothing to improve my situation unfortunately) and have tried

DIM to no avail.

My endo believes I'm particularly sensitive to estrogen (I had

gynocomastia until surgically removed a few years back), and we do

know that my liver aromatises testosterone far too actively... apart

from that work continues and I hope to have my libido restored some

point very soon!

I'm 29 now and have been without sexual desire for far too long

(since approx 21) but like many others just hoped it would come back

without addressing the issue. I'm now ready to confront it and

hopefully get some good quality of life back! :-)

Cheers,

n

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

hi julian as well as saying who your endo is if you dont mind that is ,can you

tell me what bloods you have had done and what results and what ranges you have

for those bloods

regards paul

Re: I'm new here!

Hi and welcome what kind of DIM did you use I feel this is your problem you need

to get your E2 down and keep it there. I had tried a lot of brands of DIM and

the only one that worked 3 yrs ago was Indolplex/DIM you can order this and get

it in 2 - 3 weeks start with one pill at dinner if you try this let me know. I

can help you not go to low.

http://www.ritecare .com/prodsheets/ PHY-15336. html

Phil

jude_corbit <jude_corbit> wrote:

Hi All,

Firstly - great to find a group set up for this particular topic!

I'm relieved and I hope can learn much from everyone and possibly

help others with my knowledge / experiences.

My condition / situation has yet to be identified 100%. I'm

currently working with a leading endo (UK) to figure out what is

actually going on with my hormones.

What I do know is that from the age of approx 21 I've had pretty

much zero sex drive. I have an arm span of 4 inches greater than my

height (typical of Klinefelters - I'm 6ft 5 " ) but have no other

associated symptoms. My blood test results have puzzled many doctors

as they sometimes comeback fine, other times they are out of range

but the root cause has yet to be pinned down.

Also, interestingly - I grew from 5ft 10 " to 6ft 5 " in just over a

year at the age of 20.

I don't have a recent print out with me, but from memory my typical

results show LH / FSH in the normal range and my testosterone is low

normal. In terms of SHBG, it fluctuates to the top end " in-range " ,

my E2 is usually in-range normal. Sadly in the UK I am unable to be

prescribed certain drugs via the NHS, that I know work well for

others, such as Arimidex - but I have been given Tamoxifen (which

did nothing to improve my situation unfortunately) and have tried

DIM to no avail.

My endo believes I'm particularly sensitive to estrogen (I had

gynocomastia until surgically removed a few years back), and we do

know that my liver aromatises testosterone far too actively... apart

from that work continues and I hope to have my libido restored some

point very soon!

I'm 29 now and have been without sexual desire for far too long

(since approx 21) but like many others just hoped it would come back

without addressing the issue. I'm now ready to confront it and

hopefully get some good quality of life back! :-)

Cheers,

n

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

hi i see it is NHS you are seeing

you need to get all those blood results ,sadly some doc or endo aying normal or

low normal actually means nothing,my excperiances in uk show a major lack of

knowledge.

you need to be armed with your reuslts and ranges,you can get the doc or endo to

print them for you then come on here and the experts wil tell you whats

what,some on here know more than the uk medical profession do.

my results on bloods are verry much bordelrline low end of normal on everything

on current lab ranges for my hospital,but if ypou look at other lab ranges they

are lower by a fair bit and indeed low normal if trues is still not correct ,for

full functioning they need to be higherr,i have reasons i dont want to have trt

but i do want a correct diagnosis

regards paul

Re: I'm new here!

jude_corbit wrote:

Hi All,

Firstly - great to find a group set up for this particular topic!

I'm relieved and I hope can learn much from everyone and possibly

help others with my knowledge / experiences.

My condition / situation has yet to be identified 100%. I'm

currently working with a leading endo (UK) to figure out what is

actually going on with my hormones.

What I do know is that from the age of approx 21 I've had pretty

much zero sex drive. I have an arm span of 4 inches greater than my

height (typical of Klinefelters - I'm 6ft 5 " ) but have no other

associated symptoms. My blood test results have puzzled many doctors

as they sometimes comeback fine, other times they are out of range

but the root cause has yet to be pinned down.

Also, interestingly - I grew from 5ft 10 " to 6ft 5 " in just over a

year at the age of 20.

I don't have a recent print out with me, but from memory my typical

results show LH / FSH in the normal range and my testosterone is low

normal. In terms of SHBG, it fluctuates to the top end " in-range " ,

my E2 is usually in-range normal. Sadly in the UK I am unable to be

prescribed certain drugs via the NHS, that I know work well for

others, such as Arimidex - but I have been given Tamoxifen (which

did nothing to improve my situation unfortunately) and have tried

DIM to no avail.

My endo believes I'm particularly sensitive to estrogen (I had

gynocomastia until surgically removed a few years back), and we do

know that my liver aromatises testosterone far too actively... apart

from that work continues and I hope to have my libido restored some

point very soon!

I'm 29 now and have been without sexual desire for far too long

(since approx 21) but like many others just hoped it would come back

without addressing the issue. I'm now ready to confront it and

hopefully get some good quality of life back! :-)

Cheers,

n

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

Hey Jude and welcome to the group.

Wow - you grew 7 inches in one year. That is a lot. It is odd to me that you

started having symptoms approximately the same year you had the growth spurt.

Given the fact that you had Gynocomastia - this would indicate you do have an

estrogen issue. You mentioned that your E2 was in the normal zone but that may

not mean anything. Can you post the value and range of the test. Decreasing your

E2 can increase your T by 200-300 points in some cases.

Arkansas

jude_corbit <jude_corbit@...> wrote:

Hi All,

Firstly - great to find a group set up for this particular topic!

I'm relieved and I hope can learn much from everyone and possibly

help others with my knowledge / experiences.

My condition / situation has yet to be identified 100%. I'm

currently working with a leading endo (UK) to figure out what is

actually going on with my hormones.

What I do know is that from the age of approx 21 I've had pretty

much zero sex drive. I have an arm span of 4 inches greater than my

height (typical of Klinefelters - I'm 6ft 5 " ) but have no other

associated symptoms. My blood test results have puzzled many doctors

as they sometimes comeback fine, other times they are out of range

but the root cause has yet to be pinned down.

Also, interestingly - I grew from 5ft 10 " to 6ft 5 " in just over a

year at the age of 20.

I don't have a recent print out with me, but from memory my typical

results show LH / FSH in the normal range and my testosterone is low

normal. In terms of SHBG, it fluctuates to the top end " in-range " ,

my E2 is usually in-range normal. Sadly in the UK I am unable to be

prescribed certain drugs via the NHS, that I know work well for

others, such as Arimidex - but I have been given Tamoxifen (which

did nothing to improve my situation unfortunately) and have tried

DIM to no avail.

My endo believes I'm particularly sensitive to estrogen (I had

gynocomastia until surgically removed a few years back), and we do

know that my liver aromatises testosterone far too actively... apart

from that work continues and I hope to have my libido restored some

point very soon!

I'm 29 now and have been without sexual desire for far too long

(since approx 21) but like many others just hoped it would come back

without addressing the issue. I'm now ready to confront it and

hopefully get some good quality of life back! :-)

Cheers,

n

__________________________________________________

[Guest guest]

On Wed, 27 Sep 2006 11:22:13 -0700 (PDT), you wrote:

>

>Hey Jude and welcome to the group.

>

> Wow - you grew 7 inches in one year. That is a lot. It is odd to me that you

started having symptoms approximately the same year you had the growth spurt.

Given the fact that you had Gynocomastia - this would indicate you do have an

estrogen issue. You mentioned that your E2 was in the normal zone but that may

not mean anything. Can you post the value and range of the test. Decreasing your

E2 can increase your T by 200-300 points in some cases.

>

> Arkansas

It suggests possible pituitary issues to me.

________________

I am human; nothing in humanity is alien to me.

Terence

[Guest guest]

Hi Phil and thanks for the message, I have tried that particular

product and the Tyler's Indoplex DIM - unfortunately neither made me

feel any different. I took one capsule before sleep over a month or

so. Please advise if i messed up the dosing. Cheers!

> Hi All,

>

> Firstly - great to find a group set up for this particular topic!

> I'm relieved and I hope can learn much from everyone and possibly

> help others with my knowledge / experiences.

>

> My condition / situation has yet to be identified 100%. I'm

> currently working with a leading endo (UK) to figure out what is

> actually going on with my hormones.

>

> What I do know is that from the age of approx 21 I've had pretty

> much zero sex drive. I have an arm span of 4 inches greater than

my

> height (typical of Klinefelters - I'm 6ft 5 " ) but have no other

> associated symptoms. My blood test results have puzzled many

doctors

> as they sometimes comeback fine, other times they are out of range

> but the root cause has yet to be pinned down.

>

> Also, interestingly - I grew from 5ft 10 " to 6ft 5 " in just over a

> year at the age of 20.

>

> I don't have a recent print out with me, but from memory my

typical

> results show LH / FSH in the normal range and my testosterone is

low

> normal. In terms of SHBG, it fluctuates to the top end " in-range " ,

> my E2 is usually in-range normal. Sadly in the UK I am unable to

be

> prescribed certain drugs via the NHS, that I know work well for

> others, such as Arimidex - but I have been given Tamoxifen (which

> did nothing to improve my situation unfortunately) and have tried

> DIM to no avail.

>

> My endo believes I'm particularly sensitive to estrogen (I had

> gynocomastia until surgically removed a few years back), and we do

> know that my liver aromatises testosterone far too actively...

apart

> from that work continues and I hope to have my libido restored

some

> point very soon!

>

> I'm 29 now and have been without sexual desire for far too long

> (since approx 21) but like many others just hoped it would come

back

> without addressing the issue. I'm now ready to confront it and

> hopefully get some good quality of life back! :-)

>

> Cheers,

>

> n

>

>

>

>

>

>

> ---------------------------------

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

>

[Guest guest]

Hi , I'll send on the info when I have it (I'm at work at the

moment). I don't have a copy of the recent blood tests but will ask

my doc for a copy. My current endo is Dr Simpson based at Royal

Berkshire hospital but I'm soon to meet with another specialist in

Oxford.

> Hi All,

>

> Firstly - great to find a group set up for this particular topic!

> I'm relieved and I hope can learn much from everyone and possibly

> help others with my knowledge / experiences.

>

> My condition / situation has yet to be identified 100%. I'm

> currently working with a leading endo (UK) to figure out what is

> actually going on with my hormones.

>

> What I do know is that from the age of approx 21 I've had pretty

> much zero sex drive. I have an arm span of 4 inches greater than

my

> height (typical of Klinefelters - I'm 6ft 5 " ) but have no other

> associated symptoms. My blood test results have puzzled many

doctors

> as they sometimes comeback fine, other times they are out of range

> but the root cause has yet to be pinned down.

>

> Also, interestingly - I grew from 5ft 10 " to 6ft 5 " in just over a

> year at the age of 20.

>

> I don't have a recent print out with me, but from memory my

typical

> results show LH / FSH in the normal range and my testosterone is

low

> normal. In terms of SHBG, it fluctuates to the top end " in-range " ,

> my E2 is usually in-range normal. Sadly in the UK I am unable to

be

> prescribed certain drugs via the NHS, that I know work well for

> others, such as Arimidex - but I have been given Tamoxifen (which

> did nothing to improve my situation unfortunately) and have tried

> DIM to no avail.

>

> My endo believes I'm particularly sensitive to estrogen (I had

> gynocomastia until surgically removed a few years back), and we do

> know that my liver aromatises testosterone far too actively...

apart

> from that work continues and I hope to have my libido restored

some

> point very soon!

>

> I'm 29 now and have been without sexual desire for far too long

> (since approx 21) but like many others just hoped it would come

back

> without addressing the issue. I'm now ready to confront it and

> hopefully get some good quality of life back! :-)

>

> Cheers,

>

> n

>

>

> ------------ --------- --------- ---

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

>

[Guest guest]

Thanks Dan, I should be able to post blood results soon. Yep growing

that quickly is very painful believe me, I remember waking up at

night with terrible cramps in my legs and feet that would have me in

tears due to the pain. Thanks for the advice about E2, I've read the

same and suggested this before, unfotunately my current endo said

that checking E2 is not part of the standard test (the UK docs are

limited in their experience here), hopefully my new specialist will

be more open to it!

> Hi All,

>

> Firstly - great to find a group set up for this particular topic!

> I'm relieved and I hope can learn much from everyone and possibly

> help others with my knowledge / experiences.

>

> My condition / situation has yet to be identified 100%. I'm

> currently working with a leading endo (UK) to figure out what is

> actually going on with my hormones.

>

> What I do know is that from the age of approx 21 I've had pretty

> much zero sex drive. I have an arm span of 4 inches greater than

my

> height (typical of Klinefelters - I'm 6ft 5 " ) but have no other

> associated symptoms. My blood test results have puzzled many

doctors

> as they sometimes comeback fine, other times they are out of range

> but the root cause has yet to be pinned down.

>

> Also, interestingly - I grew from 5ft 10 " to 6ft 5 " in just over a

> year at the age of 20.

>

> I don't have a recent print out with me, but from memory my

typical

> results show LH / FSH in the normal range and my testosterone is

low

> normal. In terms of SHBG, it fluctuates to the top end " in-range " ,

> my E2 is usually in-range normal. Sadly in the UK I am unable to

be

> prescribed certain drugs via the NHS, that I know work well for

> others, such as Arimidex - but I have been given Tamoxifen (which

> did nothing to improve my situation unfortunately) and have tried

> DIM to no avail.

>

> My endo believes I'm particularly sensitive to estrogen (I had

> gynocomastia until surgically removed a few years back), and we do

> know that my liver aromatises testosterone far too actively...

apart

> from that work continues and I hope to have my libido restored

some

> point very soon!

>

> I'm 29 now and have been without sexual desire for far too long

> (since approx 21) but like many others just hoped it would come

back

> without addressing the issue. I'm now ready to confront it and

> hopefully get some good quality of life back! :-)

>

> Cheers,

>

> n

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Arkansas, thanks for your reply! I'm interested in your

hypothesis - re: pituitary issue. I've thought the same... however

other associated symptoms - such as large hands / feet / jaw / and

brow are absent and internal organs seem to be fine - it's pretty

much my limbs that have been subject to excess growth (in length).

I've had measurements taken and my biomechanics assessed and

my " shape " is unusual - I was told that my spine length and torso

structure is more becoming of someone approx 5ft 10 " in height.

I know that testosterone plays a key role in the closure of bone

plates at the tail end of pubescent growth - was wondering if that

my testosterone was suppressed due to E2 dominance - could that have

been the culprit? Since the age of 21 I've not grown any further -

thankfully :-)

>

> >

> >Hey Jude and welcome to the group.

> >

> > Wow - you grew 7 inches in one year. That is a lot. It is odd

to me that you started having symptoms approximately the same year

you had the growth spurt. Given the fact that you had Gynocomastia -

this would indicate you do have an estrogen issue. You mentioned

that your E2 was in the normal zone but that may not mean anything.

Can you post the value and range of the test. Decreasing your E2 can

increase your T by 200-300 points in some cases.

> >

> > Arkansas

>

>

> It suggests possible pituitary issues to me.

>

> ________________

> I am human; nothing in humanity is alien to me.

> Terence

>

[Guest guest]

Then you need something like Arimidex it comes in 1mg. pills you would need to

cut it in half and take .5mgs every 3 days. If you can get this let me know and

I will tell you how to not go to low.

Phil

jude_corbit <jude_corbit@...> wrote:

Hi Phil and thanks for the message, I have tried that particular

product and the Tyler's Indoplex DIM - unfortunately neither made me

feel any different. I took one capsule before sleep over a month or

so. Please advise if i messed up the dosing. Cheers!

> Hi All,

>

> Firstly - great to find a group set up for this particular topic!

> I'm relieved and I hope can learn much from everyone and possibly

> help others with my knowledge / experiences.

>

> My condition / situation has yet to be identified 100%. I'm

> currently working with a leading endo (UK) to figure out what is

> actually going on with my hormones.

>

> What I do know is that from the age of approx 21 I've had pretty

> much zero sex drive. I have an arm span of 4 inches greater than

my

> height (typical of Klinefelters - I'm 6ft 5 " ) but have no other

> associated symptoms. My blood test results have puzzled many

doctors

> as they sometimes comeback fine, other times they are out of range

> but the root cause has yet to be pinned down.

>

> Also, interestingly - I grew from 5ft 10 " to 6ft 5 " in just over a

> year at the age of 20.

>

> I don't have a recent print out with me, but from memory my

typical

> results show LH / FSH in the normal range and my testosterone is

low

> normal. In terms of SHBG, it fluctuates to the top end " in-range " ,

> my E2 is usually in-range normal. Sadly in the UK I am unable to

be

> prescribed certain drugs via the NHS, that I know work well for

> others, such as Arimidex - but I have been given Tamoxifen (which

> did nothing to improve my situation unfortunately) and have tried

> DIM to no avail.

>

> My endo believes I'm particularly sensitive to estrogen (I had

> gynocomastia until surgically removed a few years back), and we do

> know that my liver aromatises testosterone far too actively...

apart

> from that work continues and I hope to have my libido restored

some

> point very soon!

>

> I'm 29 now and have been without sexual desire for far too long

> (since approx 21) but like many others just hoped it would come

back

> without addressing the issue. I'm now ready to confront it and

> hopefully get some good quality of life back! :-)

>

> Cheers,

>

> n

>

>

>

>

>

>

> ---------------------------------

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

>

[Guest guest]

Much appreciated Phil :-) I'd love to try Arimidex as I've read so

many positive things from people over the pond who have tried it

(with high E2), unfortunately here in the UK NHS Docs are only

allowed to prescribe drugs " as indicated " . In this case Arimidex is

only indicated as a treatment for cancer not male estradiol issues -

so it's not available to me.

They did try me on some Tamoxifen but i actually felt worse

(suffered from depression). Also Tamoxifen is a SERM (estrogen

receptor modulator / a very weak estrogen in itself) and not an

aromatase inhibitor like Arimidex so i don't think it was a good

choice for me, but I was open to trying it.

I've researched the topic quite a bit but feel quite restricted by

the NHS and their regulations, hopefully with my referral to a

different specialist things will improve.

As a side note my current endo believes long term use of Arimidex is

quite dangerous and can cause bone and cholesterol issues. Not sure

what the general consensus is on this?

> > Hi All,

> >

> > Firstly - great to find a group set up for this particular

topic!

> > I'm relieved and I hope can learn much from everyone and

possibly

> > help others with my knowledge / experiences.

> >

> > My condition / situation has yet to be identified 100%. I'm

> > currently working with a leading endo (UK) to figure out what is

> > actually going on with my hormones.

> >

> > What I do know is that from the age of approx 21 I've had pretty

> > much zero sex drive. I have an arm span of 4 inches greater than

> my

> > height (typical of Klinefelters - I'm 6ft 5 " ) but have no other

> > associated symptoms. My blood test results have puzzled many

> doctors

> > as they sometimes comeback fine, other times they are out of

range

> > but the root cause has yet to be pinned down.

> >

> > Also, interestingly - I grew from 5ft 10 " to 6ft 5 " in just over

a

> > year at the age of 20.

> >

> > I don't have a recent print out with me, but from memory my

> typical

> > results show LH / FSH in the normal range and my testosterone is

> low

> > normal. In terms of SHBG, it fluctuates to the top end " in-

range " ,

> > my E2 is usually in-range normal. Sadly in the UK I am unable to

> be

> > prescribed certain drugs via the NHS, that I know work well for

> > others, such as Arimidex - but I have been given Tamoxifen

(which

> > did nothing to improve my situation unfortunately) and have

tried

> > DIM to no avail.

> >

> > My endo believes I'm particularly sensitive to estrogen (I had

> > gynocomastia until surgically removed a few years back), and we

do

> > know that my liver aromatises testosterone far too actively...

> apart

> > from that work continues and I hope to have my libido restored

> some

> > point very soon!

> >

> > I'm 29 now and have been without sexual desire for far too long

> > (since approx 21) but like many others just hoped it would come

> back

> > without addressing the issue. I'm now ready to confront it and

> > hopefully get some good quality of life back! :-)

> >

> > Cheers,

> >

> > n

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Messenger with Voice. Make PC-to-Phone Calls to the US

(and

> 30+ countries) for 2¢/min or less.

> >

> >

[Guest guest]

>

> Greetings all you heterochromiacs!! My one year old daughter has one

> brown eye and one very light blue eye with 3 brown spots.. it is so

> beautiful..... i am interested in hearing everyones stories,

> experiences and opinions on this subject.

>

I'm wondering if it is acquired heterochromia or was she born with it?

My grandson's eyes are quite beautiful as well. We've had him

thoroughly examined by an opthalmalogist and his vision is fine so our

fears of any abnormalities were put to rest. He's very advanced for a

five month old, actually. (Except he never SLEEPS!) It's an interesting

and unique condition. I thought the odds were about one in 60 million,

but since joining this group it seems to be more common than I ever

thought. I recommend the book, " The Incredible Peepers of Penelope

Budd " by Marie Karns. A sweet story about a little child with

heterochromia and the way she views the world.

ch

[Guest guest]

>

> Greetings all you heterochromiacs!! My one year old daughter has one

> brown eye and one very light blue eye with 3 brown spots.. it is so

> beautiful..... i am interested in hearing everyones stories,

> experiences and opinions on this subject.

>

Congratulations kitteekatdreemz! You have been blessed with a

beautiful and rare masterpiece. I'm new here too and was so happy to

discover a place where we can chat about our different eye colors. We

are conversation pieces that is for certain. It is so fun to see the

expression on someone's face when they notice. I get just as happy

when I see another person with splashes of color in their eyes. It's

like Easter eggs every day of the year!

[Guest guest]

she was born with it, in fact when she was just a few months old

(before the color came in) it appeared that one eye was just darker

than the other. it wasn't until i was at the beach one sunny day that

i notice they were actually two different colors. by the time she

was 9 months old it was a very drastic difference. her pediatrician

is not concerned or even very interested in the condition. he calls

it a " mole " in her eye. he has not done any tests at all on her eyes

which does concern me just a bit. she seems to have good eyesight

(scopes out the tiniest things on the floor that she should have,

lol).. and she was also very advanced, crawling at 5 months, walking

at 11 months. she turned a year on jan 2nd and she is talking up a

storm..

thank you for the book recommendation.. i'm going to see if i can

order it online right now!!

> >

> > Greetings all you heterochromiacs!! My one year old daughter has

one

> > brown eye and one very light blue eye with 3 brown spots.. it is

so

> > beautiful..... i am interested in hearing everyones stories,

> > experiences and opinions on this subject.

> >

> I'm wondering if it is acquired heterochromia or was she born with

it?

> My grandson's eyes are quite beautiful as well. We've had him

> thoroughly examined by an opthalmalogist and his vision is fine so

our

> fears of any abnormalities were put to rest. He's very advanced for

a

> five month old, actually. (Except he never SLEEPS!) It's an

interesting

> and unique condition. I thought the odds were about one in 60

million,

> but since joining this group it seems to be more common than I ever

> thought. I recommend the book, " The Incredible Peepers of Penelope

> Budd " by Marie Karns. A sweet story about a little child with

> heterochromia and the way she views the world.

> ch

>

[Guest guest]

You can order the book on-line at Amazon and it's delightful. I'm

concerned that your ped says it could be a mole. If that's the case

you should definitely have her checked out by a pediatric

opthalmalogist. Not to alarm you, but if it is a mole you need to be

sure it's benign. I can't believe he just blew it off and didn't tell

you to get it checked. Sometimes doctors make me so mad. Go to a

specialist just to put your mind at ease. She sounds very advanced

just my little guy! I love kids!

Best, ch

> > >

> > > Greetings all you heterochromiacs!! My one year old daughter

has

> one

> > > brown eye and one very light blue eye with 3 brown spots.. it

is

> so

> > > beautiful..... i am interested in hearing everyones stories,

> > > experiences and opinions on this subject.

> > >

> > I'm wondering if it is acquired heterochromia or was she born

with

> it?

> > My grandson's eyes are quite beautiful as well. We've had him

> > thoroughly examined by an opthalmalogist and his vision is fine

so

> our

> > fears of any abnormalities were put to rest. He's very advanced

for

> a

> > five month old, actually. (Except he never SLEEPS!) It's an

> interesting

> > and unique condition. I thought the odds were about one in 60

> million,

> > but since joining this group it seems to be more common than I

ever

> > thought. I recommend the book, " The Incredible Peepers of

Penelope

> > Budd " by Marie Karns. A sweet story about a little child with

> > heterochromia and the way she views the world.

> > ch

> >

>

[Guest guest]

by " mole " he means a variation in pigment, there is no actual mole on

her eye or anything, just variation in color.. and he has assured me

that it is benign.. i have thought about taking her to an

opthamolagist just to be safe..

> > > >

> > > > Greetings all you heterochromiacs!! My one year old daughter

> has

> > one

> > > > brown eye and one very light blue eye with 3 brown spots.. it

> is

> > so

> > > > beautiful..... i am interested in hearing everyones stories,

> > > > experiences and opinions on this subject.

> > > >

> > > I'm wondering if it is acquired heterochromia or was she born

> with

> > it?

> > > My grandson's eyes are quite beautiful as well. We've had him

> > > thoroughly examined by an opthalmalogist and his vision is fine

> so

> > our

> > > fears of any abnormalities were put to rest. He's very advanced

> for

> > a

> > > five month old, actually. (Except he never SLEEPS!) It's an

> > interesting

> > > and unique condition. I thought the odds were about one in 60

> > million,

> > > but since joining this group it seems to be more common than I

> ever

> > > thought. I recommend the book, " The Incredible Peepers of

> Penelope

> > > Budd " by Marie Karns. A sweet story about a little child with

> > > heterochromia and the way she views the world.

> > > ch

> > >

> >

>

[Guest guest]

Glad to know that it's Ok, kittee. There is such a thing as an actual

mole on the eye, strange as it seems. You might want to take her to

an opthalmalogist anyway. I felt better after we took our little guy.

I'll post a picture of him.

c

> > > > >

> > > > > Greetings all you heterochromiacs!! My one year old

daughter

> > has

> > > one

> > > > > brown eye and one very light blue eye with 3 brown spots..

it

> > is

> > > so

> > > > > beautiful..... i am interested in hearing everyones

stories,

> > > > > experiences and opinions on this subject.

> > > > >

> > > > I'm wondering if it is acquired heterochromia or was she born

> > with

> > > it?

> > > > My grandson's eyes are quite beautiful as well. We've had him

> > > > thoroughly examined by an opthalmalogist and his vision is

fine

> > so

> > > our

> > > > fears of any abnormalities were put to rest. He's very

advanced

> > for

> > > a

> > > > five month old, actually. (Except he never SLEEPS!) It's an

> > > interesting

> > > > and unique condition. I thought the odds were about one in 60

> > > million,

> > > > but since joining this group it seems to be more common than

I

> > ever

> > > > thought. I recommend the book, " The Incredible Peepers of

> > Penelope

> > > > Budd " by Marie Karns. A sweet story about a little child with

> > > > heterochromia and the way she views the world.

> > > > ch

> > > >

> > >

> >

>

[Guest guest]

preston is gorgeous!!

> > > > > >

> > > > > > Greetings all you heterochromiacs!! My one year old

> daughter

> > > has

> > > > one

> > > > > > brown eye and one very light blue eye with 3 brown

spots..

> it

> > > is

> > > > so

> > > > > > beautiful..... i am interested in hearing everyones

> stories,

> > > > > > experiences and opinions on this subject.

> > > > > >

> > > > > I'm wondering if it is acquired heterochromia or was she

born

> > > with

> > > > it?

> > > > > My grandson's eyes are quite beautiful as well. We've had

him

> > > > > thoroughly examined by an opthalmalogist and his vision is

> fine

> > > so

> > > > our

> > > > > fears of any abnormalities were put to rest. He's very

> advanced

> > > for

> > > > a

> > > > > five month old, actually. (Except he never SLEEPS!) It's an

> > > > interesting

> > > > > and unique condition. I thought the odds were about one in

60

> > > > million,

> > > > > but since joining this group it seems to be more common

than

> I

> > > ever

> > > > > thought. I recommend the book, " The Incredible Peepers of

> > > Penelope

> > > > > Budd " by Marie Karns. A sweet story about a little child

with

> > > > > heterochromia and the way she views the world.

> > > > > ch

> > > > >

> > > >

> > >

> >

>