IMO I think it depends when you take the 17 OHP blood tests to be honest.  I mean if you’ve given a dose of cortisol 2 hours before a blood test then yes of course 17 OHP levels will be affected almost immediately by that.  The timing of the dose is everything.  The bioavailability of cortisol is such that it hits the blood stream within that time anyway after having a dose and it has a direct result on what the 17 OHP levels will read as.  Hence it isn’t going to show the results very well for 17 OHP as they were just before a dose was due. 

Also on it’s own at 7-8am in the morning, it is absolutely useless all by itself because it in no way indicates what the anabolic levels are doing as most of you are saying here.  Most of you seem to be taking the bloods two hours after giving a dose.  In that case 17 OHP levels would be very suppressed IMO.  However, taken over 24 hours the way we are doing today (before each dose is given) and especially when the anabolic levels are doing good and the growth, can be very enlightening and tell you from one dose to the next what is happening and if the child is on too much or too little.  I mean if you have 4 tests back out of 5 and the 17 OHP on them is great and then on the fifth it is out of whack, any over exposure is not good basically and you then know that the dose before that tests is not cutting the mustard.  Either that or 17 OHP may be so low as to be undetectable when it should be really and therefore you know that the last ose was way too high.  It’s a very useful tool for tuning a childs meds. 

You musn’t forget that the dose of steroid/cortisone itself suppresses 17 OHP that much, that to my mind it is absolutely a waste of time taking 17 OHP after a dose or cortisol half the time as each child metabolises it differently and thereofre how the heck a Doctor can assess even that much using 17 OHP is beyond me.  It is useless taken that way and is so sensitive to cortisol, you may as well take no notice of the levels whatsoever.   Or even take it for that matter IMO.  It’s one of the first hormones to stop being made when the cortisol levels are high enough (or that is suppessed to lower levels in the same situation), and it will not be made again in normal quantities until some time after a large dose has worn off and the blood cortisol levels fall low in some cases.  Taking something like androstenedione, because it takes slightly longer for a dose of cortisol to affect those levels--- is not as changeable to the same varying degree as 17 OHP when a dose has been given.  Nevertheless androstenedione can be suppressed---just is seen more a longer period after thats all and is a hormone that is more affected in the long term after say a substanital dose permanent dose rise of a month or so ago.  Or a child growing out of a dose a month or so ago.  

 I mean miss a childs dose and their 17 OHP could sky rocket, but double the next dose to compensate 16 hours later and of course this corrects the matter, so although that may affect androstenedione temporarily, it will be knocked back to normal ranges with the corrective action that you took.  What allows it to climb and not be knocked back to normal ranges is a sudden growth spurt and not enough cortisol levels in the day to bring it back to where it usually is--and so therefore day by day it climbs a little higher.  So you can see how very high 17 OHP levels mean nothing unless androstenedione is also reading as quite high.  That would clearly indicate a dose rise is needed IMO.  This is why I became angry at the fact that Ashley’s blood tests were stripped back to just 17 OHP alone.  Realising all this I became angry because I as a parent felt I knew more about his levels than the Doctor concerned at that point--hence opur change in octors to one that relaised he needed to observe atleast 17 OHP with one anabolic three monthly.  

I think also it may take longer to suppress androstenedione than it does to suppress 17 OHP after a cortiso, dose myself to ne honest because 17 OHP is manufactured first in the adrenal glands and then androstendione is made after 17 OHP and is one of the end products and takes a little while longer to be affected one way or the other due to that?  That although there is some amount of 17 OHP needed to manufacture androstenedione, if it is suppressed by a cortisone dose, it takes a little bit longer to reduce and stomp on anabolic hormones than it does their precursor-17 OHP?  

The problem with relying on androstenedione alone without reading other bloods such as 17 OHP along side it of course (just so some don’t write 17 OHP off as a naff test-LOL) is, sometimes that androstendione may appear low, but 17 OHP can be quite high and be indicating the beginnings of a problem?  In other words---not quite got as far as affecting the androstenedione (anabolic) levels in a big way at that moment in time, but certainly a change in the pre crusor hormones---as the first thing that rises as a consequence of too little cortisol is 17 OHP, I think they are all as important as each other to read.

Our Doctor used to only read 17 OHP and none of the others.  My concern was that as you say read alone it can be deceptive because it is so changeable over a 24 hour period and if you have a Doctor that doesn’t mind when he takes it (say he takes it between morning and lunchtime) then it can appear quite low, but give you no clue as to what is happening first thing in the morning after wha is the longest period (overnight) without a cortisol dose.  In not taking something like androstenedione or testosterone, they therefore don’t pick up on that either and really what the 17 OHP levels are reading has no bearing whatsoever sometimes on what the anabolic readings are doing. 

We are doing 17 OHP spot profiling today and a blood draw tomorrow for androstenedione for example so that when they get the results for the profiling back, they can be compared along side the androstenedione levels and then either regarded as accurate assessments of whether the doses are adequate enough as we have taken androstenedione for some time now and observed growth (which has been normal) and we can therefore know what the androstenedione levels look good at to ba ble to say the 17 OHP levels are good.  I have five blood spots to take and they will all be taken just before a dose of cortisone, so they will indicate whether each dose in the day did it’s job.  There is an extra one to be taken at midnight to just assess what is happening between 5pm and  3am and out of curiosity I’d say to note where the majority of 17 OHP levels are rising? 

Because it is so sensitive and when read before a blood test, it can be quite accurate providing that androstenedione is checked and those levels are in the normal ranges and done when the child is doing well and growing well, it can be useful in tuning doses more to the childs needs I’d say.

Well thats how they tuned his doses as a baby in the hospital---took them two weeks to steady his levels back then and they took bloods daily after they had stabilised him--adjusting the meds accordingly.  Then we went in weekly for a while for blood draws, and when they finally got the klevels correct, we went monthly.  He grew quite well from o to 1 yo, but when we moved here and they did things differently, that changed.  When he was born and they tuned his doses I was told specifically that they would always check a dose raise and that he would need more frequent blood testings like that around a blood change to make sure it was the right dose for him and he was growing well.  However, it just never occured here at each dose raise.  They just jumped it up and montiored growth and when I look at records, blood tests where only 3-6 monthly even after dose raises which is quite unreliable really. 

I think they should do a tests a month after a dose raise atleast and then three months later.  By doing this it tells you at the one month interval that the dose you changed it to is taking them in the right direction.  Three months later, that it hasn’t taken them too far over the mark.  Then regularly every three months thereafter to make sure that everything is still on track.  That never happened here and I know it is why Ashley did not grow correctly.  There was a lack of cooridination over timings of blood tests also which could not have been useful at all due to the time that they were taken IMO.