More adrenal source of hormone excess than ovarian

Pink Nails · 09-29-2009, 02:55 PM

I think I am more thin than average PCOS women becuase the major source of my hormone excess is adrenal. High DHEAS. I am trying to understand this and how it will affect ttc.

Are there other women on here who have more adrenal sounce of androgens than ovarian.

I have high DHEA, some cysts and am not IR.

miss62 · 10-01-2009, 04:00 PM

Hi,
yes actually I just had an eye opening conversation with my new endo.I'm thin 5'3 48 kg and she suspect that Imight have LOCAH or some adrenal problem.
my main issue was severe acne since puberty adn some hirsutism but I had almost regular periods,well I dont even have that enymore thanks to trying bcp .
my dheas was out of range about 1 point but I know even that would casue alot of problems ,I'm tiny so you can't really compare my bw results with most people.
I also had free t and total T test and everything was normal even on the lower range.
I'm going back for more bw next cycle ,there are couple of other hormones from adrenal that I've never been tested for,ACTH and 17 hydroprogesterone.
I'm hoping to get an answer after all these years.

romina56 · 10-25-2009, 12:51 AM

I also have high DHEAS (450), not IR. Went to a few doctors, everybody has different opinion ( some think I need to take BCP,
some - metformin). I am going with metformin.
But wonder what is the right decision? Does anybody know?

Pink Nails · 10-26-2009, 01:16 PM

I don't know and am wondering the same thing for my own self.

I took Yasmin BCP for many years and it stopped all my symptoms so I know that worked for me. My DHEA was very high before BCP and once I went on it it dropped to just above normal and pretty much stayed that way.

I am not sure about Metformin and I also wonder about dex to give my adrenals a break.

romina56 · 10-27-2009, 09:30 AM

Thank you for reply Pink Nails.
Wish you good luck in everything.

tlcrowe · 10-29-2009, 07:45 PM

Pink Nails- Hi! I got your private message but my low post number prevents me from replying, so I'll do that here! haha

That is really interesting, I believe my last name is from some English clan up in the UK. I'm definitely a firm believer that PCOS is at least somewhat genetically determined.

Your case sounds SO similar to mine; I too am really thin (but have a round tummy pudge), with extremely high DHEA (but totally normal DHEAS), ovarian cysts, and absolutely NO insulin resistance, acne, or hirsutism.

My endo was looking into an adrenal source of the androgens, however, 17-OH progesterone, ACTH, and DHEAS came back normal aside from a mild elevation in testosterone.

I remember reading somewhere that those with Jewish, Irish, and some other descents tend to be prone to LOCAH...

Pink Nails · 10-30-2009, 01:50 PM

The DHEA and DHEAS are high in me (before BCP anyway).
Asiatic (sp?) Jewish, Northern Italians and Eastern Europeans and some East Indians I think have a higher rate of LOCAH. I never heard about english or irish but I think it can also occur (rarely) in the average population.

My ACTH was fine too so I think that rules out LOCAH but one endo suggested I may have it but she just quickly looked at my charts and didn't do any tests. I really don't want to have LOCAH. And I certinely don't have any of the early symptoms like oily skin, body odor, early puberty, and early advanced bone growth - I was always tiny as a kid - underdeveloped not overdeveloped. But I don't have classic pcos either.

We will have to figure this out. I am determined. We really should compare notes more.

Post more messages PM you. I am still tryign to figure this board out too though so I understand, it is sort of confusing. But the iofo here is fantastic!

jewels6170 · 10-30-2009, 01:58 PM

My DHEAS was high and my testosterone was normal. My 17-OH-Pregenenolone was 245. I don't know if correlates with LOCAH or not. I had an ultrasound done when I was on the BCP. I don't know if that will skew the results or not. The technician told me that she saw a "string of pearls" around my ovary. When I met with the doctor to discuss the results, he said everything looked fine. I have always had normal periods, but in the past 6 months they have been irregular and far apart. I have been to several doctors and am so frustrated. I just want to know if I have PCOS or LOCAH so it can be treated correctly. I'm going to give Met a try to see if it clears up my acne.

tlcrowe · 10-31-2009, 10:11 PM

Pink Nails- Im curious, did your doctor test ACTH with just a single blood draw or did they do the stimulation thing with the separate injections and checks at different intervals?

Mine only did the single blood test, which from my understanding, isnt as diagnostic as the stimulation test. Not to mention, he never even went into anything about cortisol.

I really thought we were onto something with the adrenal issue because I have always had anxiety, insomnia, jitteriness and other symptoms that tend to coincide with excess adrenals like norepinephrine&epinephrine. My endo didnt seem to be convinced though because I, just like you, was always so tiny, late to start menarche, and slow-growing.

Now that DHEAS was normal, he completely threw out the possibility of locah , and ignored the fact that my DHEA was still through the stinking roof! As far as I know, both of them dont have to be elevated to cause an adrenal problem...? It cant be good to have either one elevated, Im sure.

To add insult to injury, he basically dismissed my elevated testosterone because it was just mild. I understand that its not a huge deal, but its still enough of a problem to throw off my other hormones, eliminate my periods and shroud my ovaries in cysts! He is so frustrating and "ladida" about it, it ticks me off.

Sorry this turned into a rant about my endo, haha

Pink Nails · 11-02-2009, 01:59 PM

The whole thing is confusing. I think my testosterone tests normal as well but since DHEA is a precursor to testosterone I am considered to have excess androgens because the DHEA is twice as much as the high range or normal. DHEA is a mild androgen that makes estrogen and testosterone.

I also have adrenal issues like anxiety and I think BCP made that a little worse - sadly since it made the other symptomes of excess androgen better becuase BCP has hormone binding gobulin that eats up the excess hormones floating around in the blood stream. Without BCP my HBG is low which is sometimes due to hypoglycemia.

It is a whole big mess the pcos, locah, hypoglecemia mess I might be somehow stuck in but no endo can say for sure. However even considering that I am healthy. I am athletic and my body so far had coped well considering the constant assult of wacked out hormones. That is why I believe I can get better. My body jsut needs to make a correction somehow so I can reverse course. I do my part with healthy diet and exercise I need to somehow get the hormones doing their part.

miss62 · 11-02-2009, 02:11 PM

is there any herbs for dheas?I have the same problem and I cant find sth natural for adrenal androgen.I mean there are so many herbs out there licorice,spearmint....but mostly they are effective on total T and ovarian T.
the only herb that actually helped to lower my dheas was saw palmetto but I kind of had some side effects from it.since it lowers estrogen and androgen I actually saw the results.my estrogen was way too low after taking it.

uuugh..I'm so frustrated,just wanna be normal again.I had another blood test done today this is my 7th time in the past couple of months and still wondering around with no treatment.
sometimesI think why bother with blood works.all they do is giving you spiro at the end.
I'm going to ask my Dr for Androcur,I've done alot of research and I think the best one is Androcur even with all the side effects.

tlcrowe · 11-02-2009, 05:32 PM

I haven't found anything for lowering dhea/dheas, but I was taking Saw Palmetto, Green Tea, and Flax seed for their anti-androgenic qualities. Outwardly, it seemed to lessen what little hirsutism I did have. I think they probably work more on testosterone like you said.

Vitex was a miracle herb for me though as far as AF went. It gave me my first AF in 5 months and then I had one each month after that, perfectly spaced out. My first time being regular in two years, not to mention, it really helped with cramps and PMS.

Pink Nails- I'm right there with you. Aside from goofy hormones, I'm totally healthy. Sometimes hypoglycemic, but otherwise fine. Sometimes I think a lot of these issues stem from just being athletic and underweight, like depleted estrogen because I don't have much body fat and you said athleticism increases androgens or something along those lines? That's interesting.

It is a shame that BCPs help but come along with so many other unwanted mood side effects. Come to think about it, all this crazy hormone stuff started happening shortly after I stopped taking the pill after over a year of being on it.

Colleen87 · 11-14-2009, 05:06 AM

Maybe we are a new type of pcos, thin, late to start menarche, normal cortisol/ATCH, high DHEAS.

miss62 · 11-14-2009, 12:55 PM

I dont know,I had a 17 hydroxy progesterone test for the frist time in my life aqnd it was high enough to send me for the acth stimulation test.also my androtenestione was on the high side.the strange thing is that my dheas was still normal.so I dont know where the hell all the androgen has been converted.
still trying to figur out where I got this gene ,my parents never had any problem with severe acne or hair issues.I just think I'm lucky I dont have classic cah,even though I haven't dx with Ncah either but what els could it be.the only symptom I dont have is extreme short height and early puberty.

Pink Nails · 11-16-2009, 04:34 PM

Quote:

Originally Posted by Colleen87

Maybe we are a new type of pcos, thin, late to start menarche, normal cortisol/ATCH, high DHEAS.

I might fit that description except I got my period when I was 13 - but that is a normal age not necessarily early. My mom got hers at 12 (she doesn't have any androgen issues). I don't know anyone in my family who has any androgen issues at all - just me. My mom has hypothyroid though and my Dad had a putitary tumor.

My DHEAs is high but testosterone isn't. 7 years ago when my DHEA was double the highest side of normal my testosterone was at the top of hte normal limits. Now that my DHEA is just high the testosterone is actually low. The BCP must have helped me even though my androgen excess is adrenal. I have been off BCP for 3 month as my hormones have stayed where they were at when I was on the BCP. I hope it stays that way permenantly!

Also I ovulate. I have a nice 27 day cycle.

The endo still says I have NCAH anyway but I think I just stress way too much.