Hi Folks,

I would like to draw your attention to two threads in the Medication, Treatments, Therapies section of the board.

Thread entitled "Why don't we pay attention to this" and the other is entitled " Please Please Please hear me out"

Two of us on this forum have now been in testosterone supplement for the last three weeks and both have now reported significant improvement (I have been CH free for one full week now).

The "Please please" thread is where I ask each CH patient to consider getting a Testosterone test both in remission (as a baseline) and again in cycle.  Low testosterone is not as significant as is the difference between the two numbers.

That being said, if the testosterone is in the lower end of the normal range it may be easier to convince your Dr. to prescribe a couple of weeks worth of testoterone to give it a trial....but the drop in levels which kicks in your individual "threshhold" for CH seems to come into play for those that respond to this treatment.

In the "PLease" thread there is a link to a video of a CH patient who has been CH free for three years using testosterone supplement and describes what happened when he went off his supplement.....I expect I will try this later on this year after i see if i can postpone a cycle from even starting.....only time will prove or disprove this science but a lot of the big Dr.s are implementing this as another tool in the toolbox, especially for those CH patients resistant to regular treatment protocol.

Please tune in to the threads as they will be updated as more chime in(several have indicated via pm and posts that testing is being considered)

Thank you
Paul

Paul,

Thanks for keeping this alive, and putting it on the General Board.  I know it is a Med issue, but a lot of us don't spend all that much time over there unless we have a change in the way our CH is behaving.

Like I told you in a PM, I had my test done and my levels were rather low.  My Dr had me go back in for some other blood tests before starting a replacement regimen, and I have not yet heard back from her.  Hopefully tomorrow.

I also sent her several links to studies for her perusal.  She is a GP, but has several migraine patients, including her sister, so headaches hold an interest for her.  Hopefully this will be an oportunity to educate her, as well as have a Dr with a real interest in my treatment.

Jerry

Callico wrote on Jan 2^nd, 2009 at 11:59pm:

Paul, Thanks for keeping this alive, and putting it on the General Board.  I know it is a Med issue, but a lot of us don't spend all that much time over there unless we have a change in the way our CH is behaving. Like I told you in a PM, I had my test done and my levels were rather low.  My Dr had me go back in for some other blood tests before starting a replacement regimen, and I have not yet heard back from her.  Hopefully tomorrow. I also sent her several links to studies for her perusal.  She is a GP, but has several migraine patients, including her sister, so headaches hold an interest for her.  Hopefully this will be an oportunity to educate her, as well as have a Dr with a real interest in my treatment. Jerry

I am really hoping she will let you give this a try...you should notice improvement within three weeks with the gel or almost immediately with shots  (if it is to work for you).

My fingers are crossed for ya.
Good luck

Paul

Here are some excerpts from a recent post from Echo

"Had the test done for Testosterone levels about 3 weeks ago.  

I've been taking the lowest dose of Androgel for about 3 weeks ...

One the CH side -------  WOW!!!!!!.  Lighter hits, shorter hits, and getting farther apart each day.  And I'm actually sleeping!!!

There just may be something to this.---- "

I do really hope that more would give testosterone testing a shot...there potentially is so much to gain for some...maybe many...my life has been transformed this last couple of weeks...even if it does not last for one reason or another as other treatments have been.

I am so grateful for these pain free weeks...it was a blessing to spend tonight at my grandson's first birthday party as an active participant enjoying every minute...my family hardly knows who i am without the CH...time to get reacquainted.

I really appreciate your zealously getting the word out about the testosterone. Are you going to post it on all of the boards? Really, I understand that one would want what works for them to work for everyone,however there is a limit to the effects of redundancy. I have a defective hypothalamus that causes the endocrine system to malfunction. This results in abnormal hormone levels. It is not surprising to have low testosterone, I suspect other hormone and neurochemical levels are abnormal as well.
I am glad your treatment is working.
the bb

I think if I had been unable to find an abortive that worked for me and I came across a treatment that gave me a week or more pain free I would be shouting it from the roof tops as well.  Cut him a little slack!  Not all of us frequent all the boards.  Redundency can be helpful at times.  He's not selling snake oil or trying to profit from his good news.

Jerry

wrote on Jan 4^th, 2009 at 11:03pm:

I really appreciate your zealously getting the word out about the testosterone. Are you going to post it on all of the boards? Really, I understand that one would want what works for them to work for everyone,however there is a limit to the effects of redundancy. I have a defective hypothalamus that causes the endocrine system to malfunction. This results in abnormal hormone levels. It is not surprising to have low testosterone, I suspect other hormone and neurochemical levels are abnormal as well. I am glad your treatment is working. the bb

I am glad you appreciate me "zealously getting the word out about the testosterone"

"Are you going to post it on all of the boards?"  YES - did I miss some?  I will shout it from all the roof tops and hopefully everyone with difficult to manage CH will take a simple test that may offer an alternative management for their pain.  More than one person has thanked me for posting in multiple boards since not everyone follows every board. DonnaH_Again started the original post and it still is the active thread with all the important information "WHY don't we pay attention to this" I have every intention to keep her thread bumped so that newbies do not miss the information....i am grateful to her and others on this forum for keeping the testosterone discussion alive.

"I am glad your treatment is working." thank you

Praying for some pain free time for all.

Paul

Quote:

Cut him a little slack!

Just stated my opinion as he did. We all have different opinions. It has been shouted over and over. I dont really care, however it is more appropriate on the meds or specific board. IMHO :-*
all the best
the bb

Edit:
Quote:

Some on the board may be getting tired of me already with this testosterone stuff,

Just confirming what you already know. ;)

Try to imagine how excited he is, and so happy to share the possibility of some pain free time for all clusterheads!  I know exactly how he feels.    

Those that read the General Posts may miss this news as they don't all tend to read the Medicine and Treatments threads, so it looks like he really wanted to be sure someone interested wouldn't miss it.

It won't interest everyone and that's OK.  Just move on to another thread.

Hugs,
Donna   8-)

Thank you for your comments Donna and Jerry.

13 PF days in a row now for me!

IF you are Canadian (free blood tests) or you are in the USA with a good insurance plan, consider the testosterone test if you are one of the few that are resistant to regular CH therapies and treatments.

(Hormone imbalance seems to be linked to those that respond poorly to other treatments.)