high levels

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high levels

Postby laurad » Tue Oct 01, 2013 9:48 pm

I was told today by my sons endo that his levels are very high, he never missed and dose so its very puzzling to endo and me to why this is. my son has swcah and past few weeks has no very low energy and was sick on sat feeling dizzy cold clamy sweat, brought him to doc and he couldn't find anything wrong. . .so that's what prompted me to ring endo dept today to check on blood results from 3 weeks ago.... any ideas to what this could be .. cortisol and sodium both high
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Re: high levels

Postby qween_of♥'s » Wed Oct 02, 2013 8:51 am

hiya hun

im sorry to hear about your son. I had the similar problem felt all weak all clammy and had v&d
i was totally fine its was all of a sudden.

i had to get a steroid injection as i was very sick. the following day i made an appointment with my endo, they did some bloods and said that i had to increase my meds for a month or so to see if that helped. my 17OHP levels were very high cortisol was low and so was my sodium.

after the a months time i was all better levels came back normal and i was back to my good self. i have a follow up appointment this October. hopefully i will be able to come down to my normal dose- oh and also they did a day curve on me on my low dose they said they will let me know about the results this Octobers appointment.

i am a classical cah not a swcah.

i would recommend u go to your sons endo specialist and ask them to do some tests 17ohp if possible because if this is high it means cah is not under control with the current dose. causes all the symptoms that u described in ur message.

hope this was of help

all the best

Stephanie xxx
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Re: high levels

Postby Sue Elford » Wed Oct 02, 2013 4:16 pm


Sorry to hear your son is having problems but these are definitely connected to his out of range blood test levels and his medication being inappropriate. It could just be he has outgrown his dose, but this does need sorting out!

I would have hoped that the endocrinologist would have contacted you when he/she received these results, but maybe you beat them to it? Have you been made an early appointment so these levels and his symptoms can be discussed? Your son really needs to be seen ASAP, so his medication can be reviewed! Push for this, if you haven't already got an appointment sorted out.
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