Re: a bit frustrated

[Guest guest]

Man suffering is suffering, whether it starts at 13 or 60 yo. Yes,

it sucks to start out with IHH at a young age, but be grateful you

are getting a start on treatment- I am... At least I feel grateful

since my T levels are what a guy my age should have. It seems you

are frustrated, which reminds me of the irritability I felt before I

got my T levels normalized. It goes away, hang in there mate!

You may want to check out:

http://www.hypohh.net/

which is more for KS and other early cases of Hypo. I can totally

empathize with you about the psychological frustration of finding

out in your 20's (or 30's for me) why your adolescence and life

wasn't " normal " like everyone else compared to getting low T after

years in a successful marriage and grandkids. I too sometimes wish

there was a forum to discuss more about them 'feelings', but this is

a start... Any other 'young' IHH voices want to comment?

Regards,

Dano

> I absolutely love this group. But sometimes I find myself

frustrated.

> I have been diagnosed with idiopathic hypogonadotropic

hypogonadism.

> Yes, there are a lot of things we have in common with each other,

but

> I am really sick of people here who always had normal testicles

and

> because of age have a drop in testosterone levels when people like

me

> have had, and will have this forever. What I am trying to say is,

> sometimes the really important messages get diluted amongst all

the

> cry babies with a low libido.

>

> I hope I am not offending anyone, but it's like putting emergency

> room

> patients with those who have strep throat. Isn't it possible to

> categorize this forum along specifici problems, such as low

> testosterone, Klinefelters, etc etc.??

>

> Thanks.

[Guest guest]

In my opinion, having a low libido is a serious problem that should

be treated whether you're 26 or 86. Libido is what gives us drive

and passion for life. Older men (not me, I'm 28) who complain about

low libido have every reason to - they are not " cry babies " . I've

been helped out by many guys in their 50s and 60s who will not

settle for a doctor telling them their problems stem from " aging " .

What is " idiopathic " hypogonadotropic hypogonadism, if you don't

mind me asking?

DK

> I absolutely love this group. But sometimes I find myself

frustrated.

> I have been diagnosed with idiopathic hypogonadotropic

hypogonadism.

> Yes, there are a lot of things we have in common with each other,

but

> I am really sick of people here who always had normal testicles

and

> because of age have a drop in testosterone levels when people like

me

> have had, and will have this forever. What I am trying to say is,

> sometimes the really important messages get diluted amongst all

the

> cry babies with a low libido.

>

> I hope I am not offending anyone, but it's like putting emergency

> room

> patients with those who have strep throat. Isn't it possible to

> categorize this forum along specifici problems, such as low

> testosterone, Klinefelters, etc etc.??

>

> Thanks.

[Guest guest]

to some extent i agree with you. im only 20 and have known all along my

problems. i have kallmann's syndrome. not until recently did i understand

how linked to my testosterone levels most if not all my psychological problems

are. basically what im saying is that, in an " im not trying to piss anyone off

here " sort of way, it is frustrating to be 20 feeling lousy ALL of the time,

trying

to find a way to fix things, and be sifting through the emails about how some

60 year old just fixed all the problems he had a month ago and is feeling back

to normal when its a constant struggle for me and will be when im 60 and

onward unless some miracle of science advances my situation to something a

little more livable. all i am saying is that i completely understand you which

brings me to my next point.

i find that this website, however frustrating at times, has brought to my

attention more facts and information than i have ever recieved in reference to

my health concerns. i feel that the only thing that it does lack (in my

personal

opinion in reference to my own situation) is more support for lifelong hypo

guys. im just putting this idea out there to see who would be interested, but

im

thinking it might be beneficial for us to form a group branching off of this

group

(NOT in competition with this group) to offer support and reference of articles

and info from this site in order to help sift through those frustrating posts.

i

would be willing to start that and keep it in maintenance if no one else is

particularly enthusiastic about doing so. it would offer a somewhat different

kind of support. there might be another group that does this already...if so,

im

unaware of it.

i think that having these issues your whole life causes a LOT of psychological

issues in men. im only 20 and ive already realized that however mild my case

may be (i say this because i KNOW that im NOT the worst case) i still find

myself a little bitter towards " normal " guys. im not saying that its out of

hand,

but when you know that your ability to be a " man " consists solely on

medication, which may or may not help you enough, it... " screws with your

head " in addition to the depression and suicidal thoughts, etc...etc...i think

that a key frustration in hearing about other cases is the vulnerability in

looking for help and feeling that pain when you read about all the guys that

didnt have to worry about this their whole life and are now feeling the effects.

im not putting us on a pedestal, im not saying that someone elses struggles

arent as painful as my own, im just saying that the struggles of a lifelong hypo

patient run somewhat deeper than a " limp dick "

let me know if anyone is interested in this. i understand our numbers are few.

speak up!!

> I absolutely love this group. But sometimes I find myself frustrated.

> I have been diagnosed with idiopathic hypogonadotropic hypogonadism.

> Yes, there are a lot of things we have in common with each other, but

> I am really sick of people here who always had normal testicles and

> because of age have a drop in testosterone levels when people like me

> have had, and will have this forever. What I am trying to say is,

> sometimes the really important messages get diluted amongst all the

> cry babies with a low libido.

>

> I hope I am not offending anyone, but it's like putting emergency

> room

> patients with those who have strep throat. Isn't it possible to

> categorize this forum along specifici problems, such as low

> testosterone, Klinefelters, etc etc.??

>

> Thanks.

[Guest guest]

DK,

I once heard " idiopathic " means the doctor is an idiot and can't

figure it out

Seriously, i think it basically means secondary hypogonadism with an

unknown root cause.

Mark

[Guest guest]

Dano,

I can empathzize with both sides of this argument. Mine started at 19

with a severe disease, and was not found until I was 30. I have a

host of other medical and psychiatric problems to go along with it,

primarily related to autoimmune brain damage.

However, suffering is suffering, and just because someone else's

suffering is worse does not wipe away one's suffering. For example, I

will sometimes get the " at least you don't have (insert horrifying

malady here) " routine. I am grateful that that is true, but it does

not mean that I am not suffering, and that my own health problems

aren't a pain in the ass to deal with.

Mark

[Guest guest]

Thank you for summarizing what I am trying to say.

I think none of us here can EVER deny what a God Send this group is.

We have all benefitted from it. My idea in posting this topic was

never to divide, but look for ways to make this group stronger. I

think at the end of the day, after all this testosterone,

medication, blood count, drug crap, what we really need is each

other. THAT TO ME IS FAR MORE IMPORTANT THAN ANY PIECE OF INFO I CAN

GET ABOUT PELLETS or some other drug. The mechanics of the forum

does not address the psychological issues.

What we really need is to be able to set up a profile that can be

searched. So if I want to reach out to those like myself, I can. Not

in a linear group fashion, but in a more 3 dimensional portal type

of way. That is all I am saying. And thank you for sharing your

ideas on this topic.

> > I absolutely love this group. But sometimes I find myself

frustrated.

> > I have been diagnosed with idiopathic hypogonadotropic

hypogonadism.

> > Yes, there are a lot of things we have in common with each

other, but

> > I am really sick of people here who always had normal testicles

and

> > because of age have a drop in testosterone levels when people

like me

> > have had, and will have this forever. What I am trying to say

is,

> > sometimes the really important messages get diluted amongst all

the

> > cry babies with a low libido.

> >

> > I hope I am not offending anyone, but it's like putting emergency

> > room

> > patients with those who have strep throat. Isn't it possible to

> > categorize this forum along specifici problems, such as low

> > testosterone, Klinefelters, etc etc.??

> >

> > Thanks.

[Guest guest]

Definitely agree- my nuanced belief is that dealing with our own

suffering is the most important thing we are put on this world to do,

and that what is needed from others is empathy. I'm just saying that

it's very good to tell our stories to those who will listen, it's part

of the grief process. It's not helpful to dwell on I've got it worse

than somebody else - even though I often feel like that is the case!

But reading brand_recognition's reply, I think I understand now how it

could be frustrating to read about people having successful treatment

with minor/ simple hypogonadism cases. I hope I haven't contributed

to that by expressing how much better I feel now on HRT.

> Dano,

>

> I can empathzize with both sides of this argument. Mine started at 19

> with a severe disease, and was not found until I was 30. I have a

> host of other medical and psychiatric problems to go along with it,

> primarily related to autoimmune brain damage.

>

> However, suffering is suffering, and just because someone else's

> suffering is worse does not wipe away one's suffering. For example, I

> will sometimes get the " at least you don't have (insert horrifying

> malady here) " routine. I am grateful that that is true, but it does

> not mean that I am not suffering, and that my own health problems

> aren't a pain in the ass to deal with.

>

> Mark

[Guest guest]

I still consider myself relatively new here, but I think I

understand what you are getting at, which hadn't occured to me since I

am getting better in a relatively short time since treatment.

Sometimes one forgets that others are having a more difficult row to

hoe. Someone earlier posted a list of about 20 health groups

for KS stuff, so you may be able to branch off to one of those if it

is more to the point of genetic hypogonadism concerns.

Regards,

Dano

[Guest guest]

ill have to find that post. i posted earlier about this whole situation and i

guess

i just want to apologize for any hint of sarcasm that mightve been in my post.

i

didnt mean to minimalize anyones suffering on this site. we're all here for the

same thing, we want to feel right. i guess im just used to feeling frustrated

about all this, especially when it seems like every day another thing pops up

and i have to deal with that now. heh, it just gets to ya, you know?

not sure if anyone has followed where i am as far as treatment, but i guess i

can update and ask some questions that i have. i got referred by you guys to

go see dr. john crisler. all went really well. strange to have a two hour dr

visit

and the whole 2 hours youre actually TALKING TO THE DOCTOR. since im

20 and still developing he has me on 100 iu of HCG injections every day

along with 5g of androgel every day. after a slight misunderstanding of the

dosage (i took 10 times the right dosage for the first 3 days before reading his

note that said each unit on the syringe = 10 iu. the pharmacist told me to take

100 units on the syringe instead of 10...hmmm) ive been on it for a good two

weeks now. i guess my question is, and it mightve been discussed in earlier

posts, is does HCG cause a lot of weight gain? i guess ive always been really

lean (skinny, weak, etc...lol) and im gaining a lot of weight (like 8 lbs...).

i was

only 130 this time last year, then i gained 20 pounds since then, and now 8

lbs in 2 weeks. not so much lean mass...like fat. especially in my gut and

breasts. i go in for labs around my birthday (july 18th) because he wanted to

wait a month, but im not so sure about this...im still feelin " poopy " and im

gettin

fat. what the heck? am i just getting paranoid??

>

> I still consider myself relatively new here, but I think I

> understand what you are getting at, which hadn't occured to me since I

> am getting better in a relatively short time since treatment.

> Sometimes one forgets that others are having a more difficult row to

> hoe. Someone earlier posted a list of about 20 health groups

> for KS stuff, so you may be able to branch off to one of those if it

> is more to the point of genetic hypogonadism concerns.

>

> Regards,

> Dano

[Guest guest]

>

> I'm a bit frustrated this am for a couple of reasons. Any feedback,

> suggestions or just supportive words would be greatly appreciated. TIA.

==>No problem my dear.

>

> I started drinking parsley tea yesterday (Bee's recipe) and found it

to be delicious. Overall, my urinary tract feels much better this am.

I plan to continue for the next 6 days, but want to know if it's okay

to continue drinking parsley tea after that time period as well?

==>Oh yes, you can drink it every day for months if you wish! It is

very healthy, not only for your UT.

>

> I also cheated a bit on my Candida diet yesterday and had some

macadamia nuts and almonds. This morning my tongue coating is back

again. It's not nearly as bad as it was but before the parsley tea

and nuts it was getting pink again. Is this because of the parsley

tea or the nuts or both?

==>Only the nuts would make the thrush (candida) in your mouth flare

up, not the parsley.

>

> My second issue is a bit more complex...my dh has been very

supportive of this process. I have been asking him to take the saliva

test for a week now - he finally did it this am and his saliva dropped

in a cloud to the bottom of the glass.

==>The saliva test is not very good; I will be removing it from our

files. The only true test is Dr. Crook's questionnaire and clinical

observation of symptoms.

> His tongue is white (I just noticed this today) yet he's not

interested in taking supplements for this. Any suggestions on what I

can make for him that will help with this condition naturally?

==>A white tongue is thrush (candida) and it is indicative that he has

candida throughout his body, probably mostly in the intestines. The

only way to cure it before it gets even more out of hand is to do my

program - diet and supplements. Also see Thrush Treatments in the

Treatments Folder (files in our left menu).

==>Also, can he pass this to me once I am well if he remains in the

same condition?

==>No one can acquire or pass on candida to anyone else because it

occurs within each individual's body; it is not contagious. You

cannot catch it any more than you can catch someone else's nutritional

deficiencies.

Cheers, Bee

[Guest guest]

I have heard that candida can be passed on through kissing or sex. I have heard

cases where husbands/wives have passed it on to their spouses. Is this not

true?

Eileen

Bee <beeisbuzzing2003@...> wrote:

>

> I'm a bit frustrated this am for a couple of reasons. Any feedback,

> suggestions or just supportive words would be greatly appreciated. TIA.

==>No problem my dear.

>

> I started drinking parsley tea yesterday (Bee's recipe) and found it

to be delicious. Overall, my urinary tract feels much better this am.

I plan to continue for the next 6 days, but want to know if it's okay

to continue drinking parsley tea after that time period as well?

==>Oh yes, you can drink it every day for months if you wish! It is

very healthy, not only for your UT.

>

> I also cheated a bit on my Candida diet yesterday and had some

macadamia nuts and almonds. This morning my tongue coating is back

again. It's not nearly as bad as it was but before the parsley tea

and nuts it was getting pink again. Is this because of the parsley

tea or the nuts or both?

==>Only the nuts would make the thrush (candida) in your mouth flare

up, not the parsley.

>

> My second issue is a bit more complex...my dh has been very

supportive of this process. I have been asking him to take the saliva

test for a week now - he finally did it this am and his saliva dropped

in a cloud to the bottom of the glass.

==>The saliva test is not very good; I will be removing it from our

files. The only true test is Dr. Crook's questionnaire and clinical

observation of symptoms.

> His tongue is white (I just noticed this today) yet he's not

interested in taking supplements for this. Any suggestions on what I

can make for him that will help with this condition naturally?

==>A white tongue is thrush (candida) and it is indicative that he has

candida throughout his body, probably mostly in the intestines. The

only way to cure it before it gets even more out of hand is to do my

program - diet and supplements. Also see Thrush Treatments in the

Treatments Folder (files in our left menu).

==>Also, can he pass this to me once I am well if he remains in the

same condition?

==>No one can acquire or pass on candida to anyone else because it

occurs within each individual's body; it is not contagious. You

cannot catch it any more than you can catch someone else's nutritional

deficiencies.

Cheers, Bee

[Guest guest]

>

> I have heard that candida can be passed on through kissing or sex.

I have heard cases where husbands/wives have passed it on to their

spouses. Is this not true?

==>Eileen, no that is not true. Candida does run in families however

because they eat the same foods, and they follow the same lifestyle,

particularly going to the doctor for antibiotics, etc. Candida is

caused by two major factor: 1) lack of good bacteria, mainly in the

digestive tract, and 2) a depressed immune system. If you have plenty

good bacteria and your immune system is healthy candida couldn't

possibly occur. Maybe read the 1st few sections of my article " How to

Successfully Overcome Candida " so you understand more about candida

and how it occurs.

Bee

[Guest guest]

That is crazy. Hope you get it all straightened out soon. I have found that I

send an email

directly to a company of a supervisor I get results quicker.

Good luck!

Joy

Jeanette <jhkerch@...> wrote:

ok, medicaid told " Enliven " that Enbral would be covered. That was

mid-

May. My doctors office faxed the required paper work/documentation

June 1. No reply, so faxed again June 21. Still no reply. The

pharmacy has tried to fill the Rx on the 21st & again on 26th , & was

told that the Dr's office still needs to send required paper work!

Seems to me the medicaid office LOST the stuff. It should not take 6

weeks for approval! I got to call the Dr's office again to see if they

were able to find out from medicaid where my approval is!!

[Guest guest]

I got my enbral today. The dr had to fax the documentaton to a DIFF

#. The poor pharmacist asked if it would have to be approved every

month?!

> ok, medicaid told " Enliven " that Enbral would be covered.

That was mid-

> May. My doctors office faxed the required paper work/documentation

> June 1. No reply, so faxed again June 21. Still no reply. The

> pharmacy has tried to fill the Rx on the 21st & again on 26th , &

was

> told that the Dr's office still needs to send required paper work!

> Seems to me the medicaid office LOST the stuff. It should not take

6

> weeks for approval! I got to call the Dr's office again to see if

they

> were able to find out from medicaid where my approval is!!

>

>

>

>

>

>

>

[Guest guest]

Finally, that is good news.

I think it just has to be approved once a year...

Joy

Jeanette <jhkerch@...> wrote:

I got my enbral today. The dr had to fax the documentaton to a DIFF

#. The poor pharmacist asked if it would have to be approved every

month?!

> ok, medicaid told " Enliven " that Enbral would be covered.

That was mid-

> May. My doctors office faxed the required paper work/documentation

> June 1. No reply, so faxed again June 21. Still no reply. The

> pharmacy has tried to fill the Rx on the 21st & again on 26th , &

was

> told that the Dr's office still needs to send required paper work!

> Seems to me the medicaid office LOST the stuff. It should not take

6

> weeks for approval! I got to call the Dr's office again to see if

they

> were able to find out from medicaid where my approval is!!

>

>

>

>

>

>

>

[Guest guest]

oh Jeanette, I am so glad you got the Enbrel today!! Bless your heart - - but

just in case, I'd contact Medicaid and find out if it has to have an approval

every month and I'd not give in until I got an answer that was assured to be

correct - and a number to call if you go to have it refilled and it comes back

that it needs approval....

I know it is hard to do all this AND deal with being sick - but if you can take

care of it on a day when you are feeling good, then you will have that much

done and not have to worry about when you go to have it refilled....

I am still waiting to hear from Medicaid... they lost the papers the doctor sent

them -so my daughter drove me to the dr to pick up another copy and then we took

them to my caseworker...I looked at what he filled out on the way over and I

will be surprised if I am approved the way he worded things... I am so disgusted

- - I need to be seen and treated, you know?

Anywau the grandbaby is awake - so I'd better hush

Take care

Rose

Jeanette <jhkerch@...> wrote: I got my

enbral today. The dr had to fax the documentaton to a DIFF

#. The poor pharmacist asked if it would have to be approved every

month?!

> ok, medicaid told " Enliven " that Enbral would be covered.

That was mid-

> May. My doctors office faxed the required paper work/documentation

> June 1. No reply, so faxed again June 21. Still no reply. The

> pharmacy has tried to fill the Rx on the 21st & again on 26th , &

was

> told that the Dr's office still needs to send required paper work!

> Seems to me the medicaid office LOST the stuff. It should not take

6

> weeks for approval! I got to call the Dr's office again to see if

they

> were able to find out from medicaid where my approval is!!

>

>

>

>

>

>

>

[Guest guest]

thank you, I'll check with my dr's office. now that it was approved

by sending info to a different #. My local medicaid office does not

do anything to help me. They have brushed me off repeatedly saying

they really don't handle decisions or know how that works, so I have

had to contact the office @ Springfield, IL.

> > ok, medicaid told " Enliven " that Enbral would be

covered.

> That was mid-

> > May. My doctors office faxed the required paper

work/documentation

> > June 1. No reply, so faxed again June 21. Still no reply. The

> > pharmacy has tried to fill the Rx on the 21st & again on 26th ,

&

> was

> > told that the Dr's office still needs to send required paper

work!

> > Seems to me the medicaid office LOST the stuff. It should not

take

> 6

> > weeks for approval! I got to call the Dr's office again to see

if

> they

> > were able to find out from medicaid where my approval is!!

> >

> >

> >

> >

> >

> >

> >