Growth Hormone

[Guest guest]

<<I can give you links for the studies that show the need for GH in about 30%

of PWCFS/FMS/ME, et al. >>

Thanks that would be very useful.

Did you have the insulin tolerance test at any point? If I fail that I will

definitely get the treatment. I have a small pituitary tumour too which will

help my case.

If I do not fail the ITT test I still want to try growth hormone as I have heard

low growth hormone can be caused by the hypothalmus in CFS/FMS and if it is it

would not show up in an ITT test.

Regards

Louise

]

[Guest guest]

Jim

Yes I've heard the ITT causes you to sweat and shake. I'm not looking forward to

it.

Regards

Louise

Re: Re: Growth Hormone

Growth hormone has helped me some. I didn't do the insulin tolerance test,

as it can be rough. I did the arginine test.

Jim

[Guest guest]

Louise,

I will send the link separately. I will do that as private email to you.

I had two GH Stimulation tests. The first was in the low normal range but

this test used Arginine plus GHRH (growth hormone releasing hormone). That

and a GH STIM test using ITT will force GH from the pituitary even though

you may not do so because of a neurosecretory defect or signaling problem

between the hypothalamus and the pituitary. Some doctors will not even

recognize this type of GH deficiency. Once you FAIL the GHSTIM Test you

should have no problem getting the hormone prescribed and hopefully approved

by your insurance company.

But if you pass the test, you will need a doctor who accepts the

neuro-secretory form of GH deficiency and it may take another test or two to

satisfy the doctor and your insurance of the need for rGH.

My second STIM test was done by a doctor who did understand this and did a

single agent test on me with L-DOPA. I showed almost no increase in hGH over

the several blood samples taken during this test. My insurance was satisfied

and approved my rGH based o this test and the documentation presented by my

doctor and SPOC (Genectech's patient assistance program for rGH).

You will feel better with it and you will know after being on rGH for awhile

just how much hormones play in your health and mental well being too.

I will send the links tonight.

Best wishes on this working out. I thought I would die before I got this

hormone approved. It did take me a long time because no doctor in MN that I

saw would do a thing for me. They will say that a low IGF-1 does not mean

anything because it can vary so much. Strange thing is it is the IGF-1 level

used to monitor the dosage changes and effectiveness of rGH once you are on

it.

" Some speakth with forked tongues. " One endocrinologist in MN told me that

'all you people with CFS and FMS just stay in bed too much and this keeps

your IGF-1 down'. Another told me that GH injection were just being miss

used based on a placebo effect. I asked him why during the 3 months of rGH I

purchase via a clinic in Florida did my IGF-1 increase from 67 to 173. He

just looked at me and that was the end of dealing with him. I carried both

these doctors the many abstracts and studies I had on this need among people

with FMS/ME/CFS and Lyme.

Anyway, what may have happened to some of us is a pathogen crossed the blood

brain barrier and set up infection and damage to the hypothalamus and or the

pituitary gland. I see it as a co-opting of the HPA axis as part of the

survival strategies of the pathogens. Smart little bugs they are.

Shalom, W

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

<<I can give you links for the studies that show the need for GH in about

30%

of PWCFS/FMS/ME, et al. >>

Thanks that would be very useful.

Did you have the insulin tolerance test at any point? If I fail that I will

definitely get the treatment. I have a small pituitary tumour too which will

help my case.

If I do not fail the ITT test I still want to try growth hormone as I have

heard low growth hormone can be caused by the hypothalmus in CFS/FMS and if

it is it would not show up in an ITT test.

Regards

Louise

]

[Guest guest]

The ITT test drops the blood sugar to around 40 and this causes an extreme

hypoglycemic event. This response also happens with growth hormone

releasing hormone (GHRH) when used as the second agent but it is not as

severe. Most doctors will not use the ITT on a diabetic. The ITT is the most

favored of the test by insurance companies but it like the use of GHRH can

not rule out neuro-secretory GHD.

A 12 hour urine test is also used for some who pass the STIM test to see

what the hormone does over time and not just under stimulation. This test is

not used as much but can be very useful in demonstrating what is happening

in insurance claim matters.

A tumor along with a failed STIM test should be sufficient and allow you to

proceed without follow testing.

Shalom, W

* -----Original Message-----

Jim

Yes I've heard the ITT causes you to sweat and shake. I'm not looking

forward to it.

Regards

Louise

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

Growth hormone has helped me some. I didn't do the insulin tolerance

test,

as it can be rough. I did the arginine test.

Jim

[Guest guest]

<<My second STIM test was done by a doctor who did understand this and did a

single agent test on me with L-DOPA. I showed almost no increase in hGH over

the several blood samples taken during this test. My insurance was satisfied

and approved my rGH based o this test and the documentation presented by my

doctor and SPOC (Genectech's patient assistance program for rGH).>>

Is the L-DOPA test a test for the hypothalamus rather than the pituitary

gland?

I will ask my endocrinologist about it if I fail the ITT test.

I definitely think that the hypothalamus is inolved in CFS and FMS.

Regards

Louise

[Guest guest]

hi i used to have elevated prolactin levels for several years but now

normal( and am growth hormone deficient and am on growth

hormone..unforutanely for me i had a horrific year last year stress wise

and my igf 1 levels dropped 50 points below my pre growth hormone levels

so i lost alot from one year and am struggling to get back up again.

they made me take a mri of my hypothtamus i think it was prior to starting

growth hormone theapy and they are monitering my prolactin levels while on

it but it has remained normal range . good luck tealk

> [Original Message]

> From: Louise Ellis <louiseellis@...>

> < >

> Date: 4/1/2005 9:23:17 AM

> Subject: Growth Hormone

>

>

>

> Hi Everyone

>

> I have CFS, FMS and NMH and they have recently discovered I have

> high prolactin and low Insulin Growth Factor 1, which is a marker

> or growth hormone and the level indicates I have low growth hormone.

>

> There was some reearch a few years ago in the American Jounral of

> Medicine showing that 30% of women with FMS have low IGF-1 and the

> people involved in the study showed significant improvement after

> receiving growth hormone injections for several months.

>

> Has anyone tried growth hormone injections for their CFS or FMS or

> discovered they have low IGF-1?

>

> I have to have an insulin tolerance test and had to agree before

> having it that I will be prepared to have growth hormone injections

> if I fail the test.

>

> Regards

>

> Louise

>

> Manchester UK

>

>

>

>

>

>

> This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

>

[Guest guest]

hi i got sick from eating at the end of the growth hormone test , started

refluxing , have gastro esophageal refulx disease ...its worth being on

growth hormone..one of the best treatments for me with alot of suble

changes and some documented changes in vision ... body feels stronger on it

and when not in the land of the living dead i do feel better on some level

.. tealk

if you are afraid of insulin tolearnce test : let the manager of the lab u

are takingi it at let them know you are high rsik of side effects from it

as well as the person responsablie for takng blood.... they were suppose to

do it for me @ my last glucose tolearnce test but didnt read the mds rx

properly as its not done often @ their lab and i refused to go thru that

test again .tealk

> [Original Message]

> From: Louise Ellis <louiseellis@...>

> < >

> Date: 4/1/2005 7:18:37 PM

> Subject: Re: Re: Growth Hormone

>

>

> Jim

>

> Yes I've heard the ITT causes you to sweat and shake. I'm not looking

forward to it.

>

> Regards

>

> Louise

> Re: Re: Growth Hormone

>

>

> Growth hormone has helped me some. I didn't do the insulin tolerance

test,

> as it can be rough. I did the arginine test.

>

> Jim

>

>

>

[Guest guest]

I would be interested in this information also (Growth hormone). Micah is

so tiny I worry about him. He is still wearing a size 18 months and his feet

have not grown in almost 2 years, so this is a thought that had occurred to

me also.

Loree

[Guest guest]

Sue,

My son, , is on growth hormone (genotropin). He has been on it for

probably almost 2 years. He is 5 1/2 years old and he has just finally hit the

5th percentile on the down syndrome growth chart. Before, he wasn't even on the

charts. I wish I could remember the specifics on his height before but now he

is 3 foot tall and weighs 35 lbs. He had not gained height or weight in a year

and a half before he was given the hormone.

's injections are given each night at bedtime and I'm pretty sure they

don't hurt much more than a prick. He is more upset that we hold him still then

he is about the shot. The nurse told me to try to give them when he's asleep if

I want. That's what a lot of people do, but I just give it to him before bed.

They did inform us about side affects which he's not had. We also went to the

office for the first injection to make sure he wouldn't have a reaction to it.

I believe that this is a personal decision, but I can tell you that we have

found it very beneficial for . I wish you the best.

[Guest guest]

In a message dated 10/5/2005 7:03:46 AM Eastern Standard Time,

writes:

I know the theoretical benefits and adverse side effects etc of GH. What I

am now wondering is if there is anyone on the list who has actually given this

to their child (with ds) for increased growth and for whom it has been of

benefit (or not) in terms of growth. Did they have any adverse side effects?

How

did they cope with daily injections?

Our daughter is on GH--not to help her grow, but because her of her failing

pituitary. I can't address some of your questions/concerns. However, the daily

injection has been no problem for Sheila. And since she feels much better on

it she reminds me after dinner she needs her shot.

nancy (mom of , Sheila-DS and Colleen)

[Guest guest]

> I know the theoretical benefits and adverse side effects etc of GH. What I am

now

wondering is if there is anyone on the list who has actually given this to their

child (with ds)

for increased growth and for whom it has been of benefit (or not) in terms of

growth. Did

they have any adverse side effects? How did they cope with daily injections?

Any anecdotal

evidence really, good or bad, rather than general opinions. I am trying to make

up my own

mind and have mixed feelings. Tim is desperate to be tall, even with GH he'd

never be that,

but is it worth the trauma (if there is any) for a few extra inches? At best GH

would give him

enough height to be classed as about average height (around 5 foot ish), at

worst we're

looking at about 4 foot 4 " . The unpredictable nature of puberty growth spurts

could also

mean anything inbetween the two. Its not an exact science!

I'm pretty sure that there is an article about GH on Dr. Len's web site. My SIL

has a friend

who's daughter has Syndrome (single X chromosome) who started on GH at

age two

which is a typical protocol for TS and she's about average height now at age 5.

Since she

started so young the shots are not an issue. I have another friend who's typical

teenager has

been on GH for about 18 months, she's grown quite a bit in that time but had

some problems

with migraines that may or may not have been related to the GH.

Anne in Dunwoody

[Guest guest]

Hi everyone

Growth hormone won't increase your height unless you have a growth

hormone deficiency. It will speed up the growth but you will only growth

to the height that you were meant to be. You must also look at the risk

involved with this treatment. You will also need to look at the cost it

will cost you in the neighborhood of 15,000 or 20,000/year. It is also

given in inject form only in therapy use. I know that there are

supplements out there that say that they have GH in them but it is

broken down in the gut.

There were also several studies that were done about 20 years ago on

using GH on children with Down Syndrome and they didn't show that they

had much benefit for the kids. I am sure you can look up the results

online I just don't have the sites. I did research on it when I work in

a Pediatric Endo Clinic for a couple of years. I hope the info will help

you. Patty

Re: Growth Hormone

In a message dated 10/5/2005 7:03:46 AM Eastern Standard Time,

writes:

I know the theoretical benefits and adverse side effects etc of GH.

What I

am now wondering is if there is anyone on the list who has actually

given this

to their child (with ds) for increased growth and for whom it has been

of

benefit (or not) in terms of growth. Did they have any adverse side

effects? How

did they cope with daily injections?

Our daughter is on GH--not to help her grow, but because her of her

failing

pituitary. I can't address some of your questions/concerns. However, the

daily

injection has been no problem for Sheila. And since she feels much

better on

it she reminds me after dinner she needs her shot.

nancy (mom of , Sheila-DS and Colleen)

[Guest guest]

When was born, we saw a genetecist for awhile (fantastic doc,

by the way). I asked him about GH, and he said the same thing..... it

wasn't shown to increase the adult height of people with DS at all. He

said that height is a " social " goal (worthy of working on), and that if

she seemed like she was going to be significantly smaller as an adult

(warning us that she'd never be as tall has her sisters), that we could

give her shots to delay puberty, since once girls hit some point, they

basically don't get much taller. So, this is apparently done for many

different reasons (early puberty, growth issues, etc.) but it is

supposedly a good technique for allowing girls to grow a bit more. We

are not there yet, but I will certainly consider it when the time comes.

, mom to (10), (7 DS), and (6)

Patty Holmes wrote:

>Hi everyone

>

>Growth hormone won't increase your height unless you have a growth

>hormone deficiency. It will speed up the growth but you will only growth

>to the height that you were meant to be. You must also look at the risk

>involved with this treatment. You will also need to look at the cost it

>will cost you in the neighborhood of 15,000 or 20,000/year. It is also

>given in inject form only in therapy use. I know that there are

>supplements out there that say that they have GH in them but it is

>broken down in the gut.

>

>There were also several studies that were done about 20 years ago on

>using GH on children with Down Syndrome and they didn't show that they

>had much benefit for the kids. I am sure you can look up the results

>online I just don't have the sites. I did research on it when I work in

>a Pediatric Endo Clinic for a couple of years. I hope the info will help

>you. Patty

>

> Re: Growth Hormone

>

>In a message dated 10/5/2005 7:03:46 AM Eastern Standard Time,

> writes:

>I know the theoretical benefits and adverse side effects etc of GH.

>What I

>am now wondering is if there is anyone on the list who has actually

>given this

>to their child (with ds) for increased growth and for whom it has been

>of

>benefit (or not) in terms of growth. Did they have any adverse side

>effects? How

>did they cope with daily injections?

>

>Our daughter is on GH--not to help her grow, but because her of her

>failing

>pituitary. I can't address some of your questions/concerns. However, the

>daily

>injection has been no problem for Sheila. And since she feels much

>better on

>it she reminds me after dinner she needs her shot.

>

>

>nancy (mom of , Sheila-DS and Colleen)

>

>

>

[Guest guest]

We have been doing growth hormone shots daily for my 6 ½ year old since

november, with no side effects and great results and we do IVIG in hospitla

every 2 weeks.

in CT mom to 6 ½ years

________________________________

From: [mailto: ] On Behalf Of Kim

MacEachern

Sent: Thursday, October 02, 2008 3:36 PM

Subject: Growth Hormone

Just back from Sick Kids where we got the results of 's bone biopsy

in May. Seems his bones are slow to grow and slow to die - which means

pamidronate is not the answer for increasing his bone density. Also, his

spine density results have gotten worse, his spine is soft, so spinal

compression fractures will most likely be in our future.

The only options are do nothing, or join a study that is using Growth

Hormone to stimulate bone growth... which translates into daily

sub-cutaneous injections of Growth Hormone and whatever side effects that

come with that, for the next year or more....

on top of IVIG every 4 weeks....

Too much to absorb so I am turning to you. Is there anyone else out there

administering growth hormone at home ?

Kim, mom to (age 6) with most probable diagnosis of Hyper IgE (Job

Syndrome) or maybe just CVID

[Guest guest]

-

Hi Kim,

My son was on daily injections of growth hormone for several years.

We stopped it for him because he was subsequently diagnosed with a

lymphoproliferative disorder, and the docs felt it increased the

cancer risk too much for him to have him on growth hormone. (he

ended up getting cancer anyway, he was diagnosed this past june) --

but, after the initial adjustment period for him and for me, it

became routine. the needle was teeny and i remember they gave me

this hard plastic knobby pad to press down with the injection that

diffused the actual pain of the stick (don't know if i described that

right). my son has devel. delays and wasn't able to progress with

this, but i hear many kids end up being able to inject themselves

which some find easier to deal with as they feel more in control.

so, the short answer is, yes, my son was on it and it was pretty

problem free for us.

best, Kate (mother to Ben CVID, ALPS, Ring Chromosome18, devel

delay, autism, cerebral palsy...) & three 'normals' (so to speak) :-)

-- In , " Kim MacEachern " <kimmaceachern@...>

wrote:

>

> Just back from Sick Kids where we got the results of 's bone

biopsy

> in May. Seems his bones are slow to grow and slow to die - which

means

> pamidronate is not the answer for increasing his bone density.

Also, his

> spine density results have gotten worse, his spine is soft, so

spinal

> compression fractures will most likely be in our future.

>

> The only options are do nothing, or join a study that is using

Growth

> Hormone to stimulate bone growth... which translates into daily

> sub-cutaneous injections of Growth Hormone and whatever side

effects that

> come with that, for the next year or more....

>

> on top of IVIG every 4 weeks....

>

> Too much to absorb so I am turning to you. Is there anyone else

out there

> administering growth hormone at home ?

>

> Kim, mom to (age 6) with most probable diagnosis of Hyper

IgE (Job

> Syndrome) or maybe just CVID

>

[Guest guest]

Thanks and Kate,

I guess it just wasn't what I was prepared to hear. I had my gut all set

for pamidronate. I hate surprises !

You both have been very reassuring - and compared to doing nothing and just

letting things get worse I guess we'll find a way to make this the " new

normal " around here. Woudn't it be nice to just have a normal life ?

(Sorry - I'm degenerating into self pity for a moment here).

Thanks again - someone in this group always comes through with stories of

their experiences that make this all seem routine and manageable - as much

as it can be anyway.

Kim, mom to (age 6) with Hyper IgE (Job's Syndrome) or CVID

[Guest guest]

You are welcome-come'on nothing in our lives is ever routine, but it eventually

becomes manageable, because we really do not have a choice!!!

Good Luck!!!

in CT mom to 6 ½ years

________________________________

From: [mailto: ] On Behalf Of Kim

MacEachern

Sent: Thursday, October 02, 2008 4:30 PM

Subject: RE: Re: Growth Hormone

Thanks and Kate,

I guess it just wasn't what I was prepared to hear. I had my gut all set

for pamidronate. I hate surprises !

You both have been very reassuring - and compared to doing nothing and just

letting things get worse I guess we'll find a way to make this the " new

normal " around here. Woudn't it be nice to just have a normal life ?

(Sorry - I'm degenerating into self pity for a moment here).

Thanks again - someone in this group always comes through with stories of

their experiences that make this all seem routine and manageable - as much

as it can be anyway.

Kim, mom to (age 6) with Hyper IgE (Job's Syndrome) or CVID

[Guest guest]

Anyone try taking a supplement that increases production of human growth

hormone? I was wondering if it would help alleviate symptoms.

Vicky in Cape May

[Guest guest]

There are no studies that show these supplements do increase the production of

hGH and some studies that show the supplements do not increase hGH levels. If

they worked, parents would be giving their short children the supplements

instead the expensive hGH injections.

I am aware of no connection between hGH deficiency and achalasia. Or are you

interested in these supplements because of their arginine content?

> Anyone try taking a supplement that increases production of human growth

hormone? I was wondering if it would help alleviate symptoms.

> Vicky in Cape May