Apologies for taking so long.  My 6yr old’s birthday and we were busy.  This is the one I sent on to Ashley’s Doctor:

1: J Paediatr Child Health 1993 Aug;29(4):302-4 Related Articles, Books, LinkOut 

17-Hydroxyprogesterone rhythms and growth velocity in congenital adrenal hyperplasia.

Pincus DR, Kelnar CJ, Wallace AM.

Gold Coast Hospital, Queensland, Australia.

Six patients on steroid replacement therapy for congenital adrenal hyperplasia provided capillary blood samples collected at 0800, 1200, 1700, and 2200 h, on to filter paper for 17-hydroxyprogesterone analysis. There was a strong correlation between 17-hydroxyprogesterone day profiles and height velocity over a 4 year period of study. Steroid over-replacement, identified by significantly decreased height velocity (Standard Deviation Score [SDS] 1.92), caused suppression of 17-hydroxyprogesterone concentrations to below 10 nmol/L throughout the day. Near average height velocity (Standard Deviation Score 0.245) was accompanied by suppression of 17-hydroxyprogesterone concentrations below 40 nmol/L but with significant diurnal variation. Under-replacement with rapid height velocity and bone maturation was accompanied by non-suppression of 17-hydroxyprogesterone concentrations (i.e. > 40 nmol/L). These results suggest that serial blood spot 17-hydroxyprogesterone measurements are a convenient and helpful supplement to measurements of height velocity and bone age maturation to monitor steroid replacement therapy in congenital adrenal hyperplasia. These measurements may be useful particularly in differentiating between over-replacement and appropriate replacement, and should allow adjustments in dose before abnormal growth patterns are established.

In ng/dl those above measurements would be approx:

10nmol/L = 300’s ng/dl

40nmol/L= 1200’s ng/dl

The other abstract that I saw mentioned that between 500-1000 ng/dl was a good place to be for kids with CAH which is middle to upper ranges going by these figures above.  I would say if your Daughter is 134ng/dl that there needs to be a serious look at where her med’s need to be cut back.  The other abstract that I sent to Ashley’s Doctor was pertaining to the fact that one cannot control this or get accurate 17 OHP for a 24 hour period by just one blood spot or test.  This was below:

1: Exp Clin Endocrinol 1990 Sep;96(1):52-6 Related Articles, Books, LinkOut 

Blood-spot 17-hydroxyprogesterone daily profiles in infants with congenital adrenal hyperplasia.

Solyom J, Hosszu E, Gacs G.

2nd Department of Paediatrics, Semmelweis University Medical School, Budapest, Hungary.

To define the optimum blood levels of 17-hydroxyprogesterone, the hormonal effects of glucocorticoid treatment were studied during the neonatal period and infancy in 20 patients with 21-hydroxylase deficiency. Repeated daily profiles of blood spot 17-hydroxyprogesterone were used to monitor therapy and these data were related to serum concentrations of testosterone. A wide fluctuation of blood 17-hydroxyprogesterone levels was observed in patients with a mean daily value higher than 150 nmol/l indicating poor control. Serum testosterone levels decreased into normal range in female patients with blood-spot 17-hydroxy-progesterone levels between 50 and 150 nmol/l. Daily profiles with mean values less than 50 nmol/l showed low magnitude of circadian variation suggesting overtreatment. We conclude that the daily profile of blood-spot 17-hydroxyprogesterone is a practical alternative in hormonal monitoring of infants treated for congenital adrenal hyperplasia.

PMID: 2279525 [PubMed - indexed for MEDLINE]

That’s why I asked what your Doctor was doing about the results.  Hope that these help.

Take Care,

Anne-Marie