Creatine transporter deficiency

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Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Sat Jul 08, 2017 6:05 am

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Last edited by Creatineman on Wed Jul 19, 2017 5:56 am, edited 1 time in total.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Mon Jul 10, 2017 2:04 am

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Last edited by Creatineman on Wed Nov 08, 2017 8:14 pm, edited 2 times in total.

auract
Posts: 13
Joined: Thu Jun 15, 2017 3:46 pm

Re: Creatine transporter deficiency

Postby auract » Tue Jul 11, 2017 11:44 am

Creatineman, COP does not end up as creatine.

"Even after COP loses the phosphorus group, it metabolizes into creatinol and not creatine"

https://examine.com/supplements/creatinol-o-phosphate/

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Tue Jul 11, 2017 10:18 pm

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Last edited by Creatineman on Wed Jul 19, 2017 5:57 am, edited 1 time in total.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Wed Jul 12, 2017 5:01 am

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Last edited by Creatineman on Wed Jul 19, 2017 5:58 am, edited 1 time in total.

auract
Posts: 13
Joined: Thu Jun 15, 2017 3:46 pm

Re: Creatine transporter deficiency

Postby auract » Wed Jul 12, 2017 4:19 pm

Creatineman, since you are self diagnosed have you looked into getting a measurement of your urine creatine to creatinine ratio. That seems to be a common panel for diagnosing creatine transporter deficiency and it doesn't have the same wait time as genetic testing or even MRS.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Wed Jul 12, 2017 10:02 pm

I am sending a sample overseas for slc6a8 testing. It will take 5 weeks or so for the results.
Last edited by Creatineman on Wed Jul 19, 2017 5:58 am, edited 1 time in total.

atillathedan
Posts: 4
Joined: Fri Jun 02, 2017 2:13 am

Re: Creatine transporter deficiency

Postby atillathedan » Sun Jul 16, 2017 5:17 pm

Hi Creatineman-

from your post do I understand correctly that you are taking the creatine phosphates that you mentioned?

I would Loe to find something that will help my son but am obviously weary of giving him anything without a doctors sign off.

Also if you don't mind me asking, you mentioned that you are self diagnosed CTD - have you considered getting a metabolic screening to confirm? That is how our son was diagnosed.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Wed Jul 19, 2017 6:08 am

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Last edited by Creatineman on Wed Nov 08, 2017 8:15 pm, edited 1 time in total.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Tue Jul 25, 2017 3:51 am

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Last edited by Creatineman on Wed Nov 08, 2017 8:15 pm, edited 1 time in total.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Wed Jul 26, 2017 12:45 am

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Last edited by Creatineman on Wed Nov 08, 2017 8:15 pm, edited 1 time in total.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Fri Jul 28, 2017 2:50 am

I found an even better form of creatine glycerol- tri creatine glycerol which is 81% creatine by weight

https://www.google.com/patents/US20110172306

I'm in the process of getting some from manufacturers in China.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Fri Jul 28, 2017 1:53 pm

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Last edited by Creatineman on Wed Nov 08, 2017 8:16 pm, edited 1 time in total.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Sun Jul 30, 2017 8:44 am

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Last edited by Creatineman on Wed Nov 08, 2017 8:16 pm, edited 1 time in total.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Fri Aug 11, 2017 8:41 am

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Last edited by Creatineman on Wed Nov 08, 2017 8:16 pm, edited 1 time in total.

auract
Posts: 13
Joined: Thu Jun 15, 2017 3:46 pm

Re: Creatine transporter deficiency

Postby auract » Thu Aug 24, 2017 2:02 am

Thanks for posting the updates! It's very useful to see your experimentation.

There was a new parent that tried to tackle the solubility of all these creatine compounds


https://www.google.com/patents/US9642825

Did you end up doing the blood test or genetic test?

auract
Posts: 13
Joined: Thu Jun 15, 2017 3:46 pm

Re: Creatine transporter deficiency

Postby auract » Thu Aug 24, 2017 2:04 am

@atillathedan I tried sending a direct message on this board. It seems we are in similar boats w our kiddos so it would be great to compare notes.

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Sat Aug 26, 2017 3:31 am

Creatine phosphate didn't work.
Last edited by Creatineman on Sun Sep 03, 2017 8:49 pm, edited 2 times in total.

auract
Posts: 13
Joined: Thu Jun 15, 2017 3:46 pm

Re: Creatine transporter deficiency

Postby auract » Mon Aug 28, 2017 5:40 pm

Sharing the studies on cyclocreatine would indeed be super helpful. Thanks!

Creatineman
Posts: 45
Joined: Tue Jun 13, 2017 7:13 am

Re: Creatine transporter deficiency

Postby Creatineman » Thu Aug 31, 2017 8:39 am

creatine analogs

https://www.dropbox.com/sh/e62ezt4eqe8g ... TLaZa?dl=0

and some other studies

https://www.dropbox.com/sh/a33scukzzfze ... Cw7_a?dl=0

And I have a folder with stacks on GAMT, AGAT, and the CTD but it is on my hard drive which I don't have with me atm. I can upload them when I get it.


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