No, pretty sure I don't have it. My 17OHP blood levels were elevated (my serum ACTH were normal, as were testosterone levels), so my GP referred me to an endo who did the ACTH stimulation test, which came back totally normal. So my endo concluded that I don't have CAH. Not sure why my 17OHP levels were elevated but I had been using natural progesterone cream the month before (for acne, didn't work) so maybe that was why.
I am now trying spiro with good results - my endo buys into the view that you can have androgen sensitivity at the skin level even if androgen serum levels are in the "normal range". Who knows.
(and thanks for the complement about my explanation - it was how my endo explained it to me).
I'm pretty sure that the 17O being elevated ( unless lab error ) are not normal. I hope Spiro works for ya. I'm a true believer now that acne happens for a reason. But maybe consider investigating it later. I went through a lot of bad endos who were, well, wrong. Sometimes it takes repeated testing. There are also two ACTH types--the long time and the short I believe, according to my support group. One lasts longer than the other.
Mild cases ( which is what most of them are anyway ) still require glucocorticoid therapy as it has to fix the infertility it causes in females and the outward symptoms ( such as acne) so you usually have no choice but to take it even if it's the "non classical" version ( which can cause severe acne and no life threatening symptoms.)
Agreed - elevated 17OHP levels are not normal. I just edited my post to mention that I had been taking NPC before the 17OHP test, which maybe caused the elevation? I only clued into that possibility after the testing so I never asked my endo if that could have caused it. I was also super stressed and not sleeping much or eating much when my 17ohp was tested. I have not had my 17OHP re-tested for 17OHP but I will be in a few months at my annual check up.
I had ZERO fertility problems at all - I basically got pregnant both times I had unprotected sex. When my endo suggested NCAH, my only symptoms were some mild excess facial and body hair, some hair loss on my head, and persistent acne and slightly elevated 17OHP. Maybe this is why my endo was talking aobut spiro during the testing. Apart from wanting to know for myself, I underwent the testing so I could know if I might have passed it on to my kids. Both my kids were tested for CAH as part of the routine newborn screening panel where I live (in Canada) but I was concerned about late onset for them.
No, pretty sure I don't have it. My 17OHP blood levels were elevated (my serum ACTH were normal, as were testosterone levels), so my GP referred me to an endo who did the ACTH stimulation test, which came back totally normal. So my endo concluded that I don't have CAH. Not sure why my 17OHP levels were elevated but I had been using natural progesterone cream the month before (for acne, didn't work) so maybe that was why.
I am now trying spiro with good results - my endo buys into the view that you can have androgen sensitivity at the skin level even if androgen serum levels are in the "normal range". Who knows.
(and thanks for the complement about my explanation - it was how my endo explained it to me).
I'm pretty sure that the 17O being elevated ( unless lab error ) are not normal. I hope Spiro works for ya. I'm a true believer now that acne happens for a reason. But maybe consider investigating it later. I went through a lot of bad endos who were, well, wrong. Sometimes it takes repeated testing. There are also two ACTH types--the long time and the short I believe, according to my support group. One lasts longer than the other.
Mild cases ( which is what most of them are anyway ) still require glucocorticoid therapy as it has to fix the infertility it causes in females and the outward symptoms ( such as acne) so you usually have no choice but to take it even if it's the "non classical" version ( which can cause severe acne and no life threatening symptoms.)
Agreed - elevated 17OHP levels are not normal. I just edited my post to mention that I had been taking NPC before the 17OHP test, which maybe caused the elevation? I only clued into that possibility after the testing so I never asked my endo if that could have caused it. I was also super stressed and not sleeping much or eating much when my 17ohp was tested. I have not had my 17OHP re-tested for 17OHP but I will be in a few months at my annual check up.
I had ZERO fertility problems at all - I basically got pregnant both times I had unprotected sex. When my endo suggested NCAH, my only symptoms were some mild excess facial and body hair, some hair loss on my head, and persistent acne and slightly elevated 17OHP. Maybe this is why my endo was talking aobut spiro during the testing. Apart from wanting to know for myself, I underwent the testing so I could know if I might have passed it on to my kids. Both my kids were tested for CAH as part of the routine newborn screening panel where I live (in Canada) but I was concerned about late onset for them.
Yeah you can be a silent carrier. Your symptoms are mine, basically. They really suck. Acne is the worst one though. I got some stray tummy hairs but they're falling off now due to the med, thank god. I'm not sure if your cream would contribute...but likely not. I'm glad you were able to get pregnant. I will have to take that for the fertility if I want to have kids. There's a possibility if you DO silently carry they could get it, but it's good they don't have CAH which is life threatening.
Let me say I'm so glad to meet another person familiar with this. It's kinda refreshing actually. http://www.caresfoundation.org/productcart/pc/ncah_late_onset_cah.html <--So you were normal on that chart?? Could it be possible it's another enzyme deficiency?
I really couldn't say, but I hope you figure out what works best for you. =)
Ditto re meeting someone familiar with it! I did a ton of research on it when I was being tested and I find endocrinology and hormonal pathways really fascinating. And hopefully our posts help others on here!
I don`t know if I was normal on that chart - I got a copy of my ACTH stimulation test results but they use a different measuring system in Canada, not ng/dl, and I wasn't able to find the normal range online in the units on the results. The endo said they were normal, so I just went with that. It could be another enzyme deficiency - I think (but am not sure) that the ACTH stimulation test only deals with 21 OH deficiency.
I also think acne happens for a reason, and it's frustrating to not know why I have had facial and body acne for my whole life (even after accutance and BCP and tons of topicals and antibiotics). Not that I want NCAH but then at least I would have a treatment to address it. Spiro seems to be working for my face but not my back or my body hair, yet, but I am only a few months in and at a low dose. Fingers crossed it works for me.
In any event, I am going to keep a really close eye on my kids. My 4 year old girl has some fine but darkish hair on her back, and my son (6) has a noticeably large penis for a kid which that link says is a symptom (sorry, TMI!!!) so I might ask for them to be blood-tested for peace of mind.
hey thanks for actually answering the questions!
nyways this looks like not for ppl like me tho, bcs if it causes slight increase in hunger ill probs will eat everything in sight. just nope.
also i was on meds for some other disorder with this side effect nd u dont even notice when in few months u have gained shitload of weight. i couldnt believe it, i was fatter than i ever was, so embarassing u cant imagine...nobody even told me abt this side effect beforehand at all nd it takes 4-6x longer time to get all that off! so ill never take aything with this sidefect again ever...
Well ya can't take it anyway if this isn't your answer, but no prob! I weigh 95 lbs and have difficulty gaining weight ( a huge thing that can go with CAH for some of us) but all it does is make me hungry at a regular three times a day, instead of one time (I usually am bad about that). But otherwise because HC is just what you're not making, it is practically bio identical and generally considered the best of the glucocorticoids for folks like me.
I talk to those who have used it 30 years, and it controls their symptoms of that, androgen excess and so on and so forth. It's also used for those who don't make enough cortisol and are exhausted because their body isn't making enough.
I think more patients should be screened for non classical adrenal hyperplasia when they fall into the Accutane resistant or anything resistant acne group.
Say, does anyone know what I can treat the leftover red marks with and if Retin-A will improve texture? I have an old bump in middle of forehead that has always stayed (due to deforming the skin I guess) and would like the bumpy texture of it removed. ={
Thanks for sharing! Im interested in finding out underlying causes of illnesses in general. Ive been searching for years for the possible underlying cause of my recurring acne. I always wondered was it to do with hormones or something else. My GP just sticks me on antibiotics or topical lotions. They never want to find out what's actually causing it! Yet there obviously has to be one! Frustrating.
I did see a kinesiologist recently and funnily enough she kept mentioning something about my adrenal glands being out of whack. Not sure why or what I can do about it or if that might be related to the acne?
J
Very interesting topic. I hadn't heard of this.
However, I don't know about the other drugs or what differences there may or may not be, but prednisone can elevate blood pressure, calcify arteries and weaken bones by interfering with how calcium is used. My mother was on it for a couple of years and ended up having 2 strokes and when she fell down in the hospital, had a broken ankle that took over three months to heal. After there was no sign of healing at her 6 week X-ray, I brought up the prednisone and they agreed that she should wean off it. One of the few arguments about all the drugs they loaded her up on that I won. Another was for them to at least supplement coQ10 & D to help make up for the statins they of course put her on even though her lipid panel was fine. But you know how they think everyone should take statins now. 'As a prevention.' Anyway, she'd never had high blood pressure in her life until starting these drugs. And she says she had no knowledge of having high blood pressure. But I asked for all the records from all her doctors and she had high blood pressure while going to the doctor that kept her on the prednisone.
It also impairs skin function weakening the epidermal barrier, making it bad for acne and other skin problems in the long run.
You only want these drugs if you really need them.
Thanks for sharing! Im interested in finding out underlying causes of illnesses in general. Ive been searching for years for the possible underlying cause of my recurring acne. I always wondered was it to do with hormones or something else. My GP just sticks me on antibiotics or topical lotions. They never want to find out what's actually causing it! Yet there obviously has to be one! Frustrating.
I did see a kinesiologist recently and funnily enough she kept mentioning something about my adrenal glands being out of whack. Not sure why or what I can do about it or if that might be related to the acne?
J
Better pull your labs and look. Maybe you can post them here some time.
Very interesting topic. I hadn't heard of this.
However, I don't know about the other drugs or what differences there may or may not be, but prednisone can elevate blood pressure, calcify arteries and weaken bones by interfering with how calcium is used. My mother was on it for a couple of years and ended up having 2 strokes and when she fell down in the hospital, had a broken ankle that took over three months to heal. After there was no sign of healing at her 6 week X-ray, I brought up the prednisone and they agreed that she should wean off it. One of the few arguments about all the drugs they loaded her up on that I won. Another was for them to at least supplement coQ10 & D to help make up for the statins they of course put her on even though her lipid panel was fine. But you know how they think everyone should take statins now. 'As a prevention.' Anyway, she'd never had high blood pressure in her life until starting these drugs. And she says she had no knowledge of having high blood pressure. But I asked for all the records from all her doctors and she had high blood pressure while going to the doctor that kept her on the prednisone.
It also impairs skin function weakening the epidermal barrier, making it bad for acne and other skin problems in the long run.
You only want these drugs if you really need them.
A few things. Pred is synthetic--this is bioidentical. The pharmacist explained the difference to me, and believe me there is one. We also only take physiological doses. I wouldn't touch pred...just cortef. I have not heard of even pred calcifying arteries?? Maybe it's happened. Who knows. Not to anyone I know in the support groups.
Of course you would take it if only needed. In us adrenal hyperplasia patients, it LOWERS the androgens of OH17 Preg. So it clears up our acne. The congenital adrenal hyperplasia.org site has plenty of old forum archives of people who cleared up their acne with it because it's simply what is used. Sometimes in doses of 5mg or smaller. Sometimes in very severe cases of acne actually, it is indeed used, although prednisone is mostly for acne fulminans I believe not cortef, which we don't take. But I hate synthetic drugs and believe in bioidentical hormones.
So there are differences. And because it's replacing what we don't make cortisol wise, it only helps our inflammation and immune system, balances our body and delivers the cortisol we couldn't make on our own. The pharmacist explained because we are just making what we couldn't physiologically produce on our own, nothing adverse happens unless you are overdosing on it. This kinda goes with anything, as usual.
Likely, they blasted your mother with larger doses of prednisone, always a bad idea for even short runs of "management" of conditions. In my opinion, a stupid idea. Not many of us even take close to that amount and as mentioned, prednisone and my bioidentical cortisone are different. Just telling you what I was told by my educated doctor/pharmacist who compounds my drugs for me.
For the record, she probably wanted to get her calcium levels checked, to check for signs of parathyroid disease, a calcium raising disease.
'It also impairs skin function weakening the epidermal barrier, making it bad for acne and other skin problems in the long run. '
Haven't heard the epidermal barrier thing. As for acne it'd only make it worse if you have a condition that's already causing high cortisol ( the total opposite of us, like Cushings Disease ) or if you didn't actually need it. Then, theoretically, it would not lower androgens that you didn't need lowered. You'd have to take care of the other issue.
Thus the importance of an accurate diagnosis for anyone, really, and yes for those NOT diagnosed with this, you wouldn't generally need it as your acne could probably be cured by Accutane. But non classical adrenal hyperplasia can be pretty silent and present with only severe, recalcitrant acne.
http://www.ijpeonline.com/content/2010/1/625105 <--thats the article that relays that.
4.1. Acne
Acne can occur among patients with hyperandrogenism and may be the primary clinical manifestation of CAH. Severe cystic acne refractory to oral antibiotics and retinoic acid has been attributed to NCAH.
it may be the answer for some with just acne that won't go away from anything or Accutane, or truly "resistant" acne, kinda like mine. You would just need the ACTH stimulation test to test for OH-17-pregnenolone dumping.
Ok, I found my labs from last year. I had some done this year, but I think last year's might be more indicative of what's been going on. Let me know if you want me to post the range. All were within "normal", but normal is so broadly defined that it's not that useful. Also, these results are from blood tests, taken only once during my cycle.
Total testosterone: 45 ng/dL
Free testosterone: 2.9
Bioavailable testosterone: 6.2
Sex hormone binding globulin: 67 nmol/L
Albumin, serum: 4.6
DHEA: 963
17-Hydroprogesterone: 38
TSH: 1.45
LH: 8.0
FSH: 6.2
BLOOD COUNT:
WBCs: 5.0
RDW: 12.9
Platelets: 231
Lymphocytes: 32
RBC's: 3.9 (this was 0.1 below the normal range)
Hemoglobin: 12.3
hematocrit: 39
MCV: 99
MCH: 32
Granulocytes: 63
Mononuclears: 5
Notes: 2+ macrocytes ---> Doctor said I have macrocytic anemia.
I also have PCOS.
Thoughts???
Ok, I found my labs from last year. I had some done this year, but I think last year's might be more indicative of what's been going on. Let me know if you want me to post the range. All were within "normal", but normal is so broadly defined that it's not that useful. Also, these results are from blood tests, taken only once during my cycle.
Total testosterone: 45 ng/dL
Free testosterone: 2.9
Bioavailable testosterone: 6.2
Sex hormone binding globulin: 67 nmol/L
Albumin, serum: 4.6
DHEA: 963
17-Hydroprogesterone: 38
TSH: 1.45
LH: 8.0
FSH: 6.2
BLOOD COUNT:
WBCs: 5.0
RDW: 12.9
Platelets: 231
Lymphocytes: 32
RBC's: 3.9 (this was 0.1 below the normal range)
Hemoglobin: 12.3
hematocrit: 39
MCV: 99
MCH: 32
Granulocytes: 63
Mononuclears: 5
Notes: 2+ macrocytes ---> Doctor said I have macrocytic anemia.
I also have PCOS.
Thoughts???
Even though your testosterone and DHEA were normal, I think they might be on the high end of normal. My testosterone was 69, dropped to 30, and then finally to 13. My doctor finally said I "was in the girly range" when I went below 20.
Even though your testosterone and DHEA were normal, I think they might be on the high end of normal. My testosterone was 69, dropped to 30, and then finally to 13. My doctor finally said I "was in the girly range" when I went below 20.
That's what I suspected as well... did diet alone reduce your testosterone?
You know, I thought it did, but recently when I missed some of my birth control pills my hormones seemed to go crazy despite my diet being really great. I've been having a lot of high testosterone symptoms like hair growth, acne, and oily skin. I think eating a healthy diet is a great idea, but now I feel more like it has its limitations and I need to try other methods to keep my male hormones down.