[B_Daniel]

I have finally taken the giant leap and registered with this forum!

Yayyyy!  Welcome Stefanie!

[demografx]

I have finally taken the giant leap and registered with this forum!

Yayyyy!  Welcome Stefanie!

I second that emotion!!

[Vandemolen3]

Hi Vandemolen3,

I have finally taken the giant leap and registered with this forum!

No, please don't send dollars in the mail to NORD.

You can send a Postal Money Order, which is paid for in cash at your post office. It's like a bank check. That money order is what you would mail--NOT DOLLARS.

(I can't imagine how difficult it is to be trying to translate our English into another language!)

Tomorrow (Monday) I will ask our accounting department exactly how we accept international donations.  I'll post the information that I obtain tomorrow.

As an aside, I can't believe what all of you are doing here!!! What a GREAT group!!! There is no question that you will meet your goal and finally start getting some answers about this miserable condition.

Hello, welcome to the forum. Now it is clear. I will wait until I get the account number and then go the post office. I heard that you can also do a cash deposit at the bank and that you can fill in another account number than your own account number. But I will try about a few days at the post office. Thanks.

[horizon]

My uncle suffered from a pituitary disorder, resulting in.... micropenis.

He actually told the whole family ..[]... 
fair play to him... []

[daveman]

Is there a way to PM every member at once?  Once we have enough money in the fund to show others how dedicated we are, we should consider a mass PM.  If not, perhaps 10 of us can each take 20-30 names and send ppl notes.  There have got to be others who'd like to contribute, but who are just unaware of our current fundraising efforts.

I think there's a mass mailer on the SMF forum, there's one on NSF too but if it was within our reach it would send EMails to ALL NSF members, most of which do not even know about our thread.

We can reach those 77 at least. (Although I've never tried it.... but there's always a first time)

[Pharaoh]

My uncle suffered from a pituitary disorder, resulting in.... micropenis.

He actually told the whole family ..[]... 
fair play to him... []

No, he didn't, but his wife did...  Plus, it was kind of obvious given his other appendages were much smaller than normal.

[demografx]

Is there a way to PM every member at once?  Once we have enough money in the fund to show others how dedicated we are, we should consider a mass PM.  If not, perhaps 10 of us can each take 20-30 names and send ppl notes.  There have got to be others who'd like to contribute, but who are just unaware of our current fundraising efforts.

I think there's a mass mailer on the SMF forum, there's one on NSF too but if it was within our reach it would send EMails to ALL NSF members, most of which do not even know about our thread.

We can reach those 77 at least. (Although I've never tried it.... but there's always a first time)

We also backed up a copy of the online POIS survey before it crashed, which contains the emails of 80 members here who filled out the POIS survey!

Would someone here please volunteer to extract the emails? If yes, PM me your email address and I'll send you the database!

[Stef]

Hi Everyone,

Thank you for welcoming me!

(I've posted this message on the SMF forum also.)

Regarding International Online Donations, this option is currently being worked out on our new web site and will be set up (hopefully sooner rather than later!). As you probably know, charge cards (i.e. Master Card, American Express, etc) will automatically convert your donation into US funds--which makes it easier for everyone involved.

For now, there are two options for international donations (this is not only for the research grant funds, but is also for ALL donations to NORD, so you are not alone!):

(1) You can send an email to Cindy Thayer (cthayer@rarediseases.org) in our accounting department. Cindy is completely trustworthy, keeps everything confidential, and will treat all donations with the utmost discretion (that she always uses). She'll let you know via email when the charge goes through.

In the email to her, you'll need to write:

Name
Address
Credit Card Number, Type of Credit Card, and Date of Expiration
Amount of Donation
Disease Fund  (POIS)



(2) You can send a postal money order, as described previously, with a brief note advising of the fund you're contributing to.  Because there is a fee to do this through the post office in your town, even though a relatively small fee, it is the other option.

My suggestion is to wait until the website can support online international donations, as that will be the easiest and most direct for you.  The most anonymous route is the postal money order.

I hope this helps, and I'll let you know when the international online donation issue with the new site is resolved.

I'm sorry for this inconvenience.  If I could fix it today, I would!  However, as demografx and Daveman know, it I tried to fix this, the entire website would most likely disintegrate! 

[Green]

I would be happy to donate $100 to begin with once the internation donation page is up.

[demografx]

I would be happy to donate $100 to begin with once the international donation page is up.

Green, thank you!!

[demografx]

For those of you interested in and following my TRT (testosterone replacement therapy) POIS treatment (I'm 80% POIS-free now, steadily, for 2 and 1/2 years after full hormonal bloodtesting, diagnosis, treatment and follow-up by my endocrinologist. My treatment consists of 15mg daily dosage of (3) Androderm testosterone patches.


My test results from May 25, 2011:


Testosterone, Free/Total Equilib          Result          Units          Reference Interval


Testosterone, Serum                        376             ng/dL            193 - 740

Testosterone, Free                        15.57            ng/dL           5.00 - 21.00

% Free Testosterone                        4.14              %             1.50  -  4.20           

[demografx]

I will try in about a few days at the post office [to send in a NORD-POIS donation]. Thanks.

Vandemolen, thank you!!

[daveman]

Demo,

A new member on SMF indicated that he took testosterone, his quote:

"About 5 years ago i had my testosteron tested, which was low at 6.8 (ref 9-38). After a year of taking andriol (testosterone, 40mg) the level even dropped to 3.8.
When i stopped taking Andriol testosteron went up to 13. "

What do you think is going on there?

Would it be stopping his production thereby overall reducing his levels, even though he is taking it?

[demografx]

Daveman,

About the poster's Andriol. From wikipedia:
http://en.wikipedia.org/wiki/Testosterone_undecanoate


"Experience from [Andriol] users indicates that in doses of less than 240 mg per day, effects are negligible, except at the very onset of use, while even in higher doses, effects are still minimal. It is therefore thought that most of the steroid is somehow not making it into the blood stream."

[Counterpoints]

Ladies and Gentlemen,
...

Pharaoh...  I think your low testosterone could be caused by a pituitary adenoma.  I recently read a case similar to yours, where this was the cause.  Please see if you can get a contrast enhanced pituitary MRI (assuming your kidney function is good).  Have you ever had trouble with managing your weight?  This could be relevant.

I am more and more starting to think pituitary adenomas/abnormalities may be the root cause of POIS in many cases.  They can affect cortisol, testosterone, sexual function....

Hi Counterpoints,

I've actually considered that possibility.  My uncle suffered from a pituitary disorder, resulting in a growth deficiency and micropenis.  My mother, her two sisters, and their mother all suffered from hypothyroidism requiring surgery.  I agree with you that pituitary abnormalities maybe the root cause, as not only does it affect cortisol, testosterone, and sexual function as you correctly stated, but also dopamine.  According to wikipedia, one treatment option for pituitary adenoma is the use of dopamine agonists.  Furthermore, the symptoms of low dopamine are identical to what we experience with POIS: Depression, ADHD, Social Anxiety, and Anhedonia.  Thanks for recommending this test.  I'm going to try to have one ASAP. 

You may need your GP to refer you to an endocrinologist who specialises in pituitary disorders, particularly Cushing's.  You may have cyclical Cushings (and the adenoma may also be causing POIS).

I recommend getting AM cortisol, PM cortisol, Testosterone, Free Testosterone, LH, FSH, IGF-1, and Prolactin blood tests.

A pituitary MRI (with contrast) will show whether you have a pituitary adenoma.  For the contrast, you will need to have good kidney function though.

For case studies, you may be interested in googling case studies of cushings.  I will PM you the particular one I saw.

PS.  Keep in mind this is just an idea... it is speculative.  Always fully consider the risks of anything (e.g. contrast enhanced MRI) before making a decision.  MRI is a safe imaging modality (as far as we know), and the gadolinium contrast is presumed to be relatively safe if you do not have kidney problems.  But best to consult with your doctor.

[Counterpoints]

Pharaoh:  For some reason I cannot PM you.  If you PM me your e-mail address I will respond to your other questions by e-mail.

[demografx]

Research Fund Total: $500
http://poiscenter.com/forums/index.php?topic=125.45

[demografx]

Just sent my first $100 to the fund. I intend to add at least $900 more to equal my original pledge of $1000 if it looks like we can get enough participation.

EDS, thank you!!

[demografx]

Come on everyone! Let's get this [NORD] thing cranked up and beat this ghastly thing we call POIS!!
http://rarediseases.org/about/support/research-donations/fg_base_view_p3

EDS, thank you for that!

[Starsky]

All i want to say is that curcuma 1tsp- black pepper 1/2tsp dont do nothing. POIS as i had before.