january

I was diagnosed with locah yesterday by my endo after years of being overlooked. My primary doc put me on cortef about a year ago. Hormone levels improved significantly but was wondering if I would do better on dex. I take cortef in morn and afternoon and adrenal androgens are produced at night. Any suggestions. My primary aim is to grow my hair back on my head!!!!

Eva37

sugar - sorry, only just realised i havent answered your question.
locah is late onset congenital adrenal hyperplasia. Basically when a body cant make enough cortisol it makes too much testosterone instead, hence locah. Hope this makes sence
eva

__________________
PCOS, LOCAH, Lichen Planus, IBS, HS,alopecia - raised bp/ cholesteral. Wheat and dairy intollerance Meds: Spiro, Bendrofluazide, Amlodopine, Simvastatin, Met, Prednisolone, Colefac, multi vits,

Me - 41, hubby 36 son 11. Married 14 years

She is buffeted by the wind, but she does not sink.



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Karyan

Isn't it true that you can still have high cortisol levels with LOCAH?

postmortem

what diagnostic tests did they do to discover locah?

Eva37

you're welcome.

sugar - loach is late onset congenital adrenal hyperplasia it means that the adrenal gland doesnt give out the right horomone (cortisol), but gives out testosterone instead.
eva

__________________
PCOS, LOCAH, Lichen Planus, IBS, HS,alopecia - raised bp/ cholesteral. Wheat and dairy intollerance Meds: Spiro, Bendrofluazide, Amlodopine, Simvastatin, Met, Prednisolone, Colefac, multi vits,

Me - 41, hubby 36 son 11. Married 14 years

She is buffeted by the wind, but she does not sink.



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Eva37

sorry....... my puter is playing me up today........

karyn - i dont know about high cortisol levels, but i know that mine are low cortisol - high testosterone.

i got dx with a short syncathen test. It's a blood test, then you get injected with hormones, then after half hour have more blood tests.
eva

__________________
PCOS, LOCAH, Lichen Planus, IBS, HS,alopecia - raised bp/ cholesteral. Wheat and dairy intollerance Meds: Spiro, Bendrofluazide, Amlodopine, Simvastatin, Met, Prednisolone, Colefac, multi vits,

Me - 41, hubby 36 son 11. Married 14 years

She is buffeted by the wind, but she does not sink.



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BRbangle

Doesn't a similar thing happen in cases of adrenal fatigue? I am just wondering which tests would be needed to definitively diagnose LOCAH. I have read somewhere on this site that high DHEA-S levels are one of several markers of LOCAH.

BRbangle

January, why did your doc put you on cortef a year ago if you were not diagnosed with LOCAH until yesterday? Did you take cortef for other adrenal issues?

Eva37

i got a definate dx of locah with the syncathen test.

__________________
PCOS, LOCAH, Lichen Planus, IBS, HS,alopecia - raised bp/ cholesteral. Wheat and dairy intollerance Meds: Spiro, Bendrofluazide, Amlodopine, Simvastatin, Met, Prednisolone, Colefac, multi vits,

Me - 41, hubby 36 son 11. Married 14 years

She is buffeted by the wind, but she does not sink.



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postmortem

hey so did supplementing cortisol help lower testosterone levels?

SandV

I found this link that shows the similarities about LOCAH and PCOS. It also discussed LOCAH leading to PCOS.

http://pcoslady.wordpress.com/2007/0...s-tests-sites/

Hope it is useful.

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DH
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I (6/2/06)
DSS born 5/30/04

HSG 8/26/08 - right fimbria congested with hydrosalpinx
Ectopic PG 4/23/08 (8 wks)
Salpingectomy 4/23/08 (left)
Dx PCOS 1995

"Yesterday is history; tomorrow is a mystery; today is a gift. That is why its called the present."


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Eva37

thanks for the link, it's really interesting my endo told me that it's hard to tell when pcos starts/end and locah starts/ends that they overlap.
eva

__________________
PCOS, LOCAH, Lichen Planus, IBS, HS,alopecia - raised bp/ cholesteral. Wheat and dairy intollerance Meds: Spiro, Bendrofluazide, Amlodopine, Simvastatin, Met, Prednisolone, Colefac, multi vits,

Me - 41, hubby 36 son 11. Married 14 years

She is buffeted by the wind, but she does not sink.



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splashsmama

-BRbangle & Postmortem,
Here's a link talking about what LOCAH is and the blood test involved with diagnosing it. You can also have a genetic test run to see if you have it since it is a genetic disorder. I found the link very informative.
http://www.caresfoundation.org/produ...onset_cah.html

-Karyan,
According to the link above, which is an organization that deals with both Classic and Nonclassic (Late Onset) Congenital Adrenal Hyperplasia, a person with either form of CAH will not have high levels of cortisol. The blood test used for diagnosing this genetic disorder is specifically designed to detect low cortisol levels.

With CAH, these people lack the genes that contain instructions the adrenal glands (located on top of the kidneys) need in order to produce an enzyme called 21-hydroxylase. Without this enzyme, the adrenal glands are unable to produce cortisol.
When the pituitary gland below the brain senses that there is not enough cortisol present in the bloodstream, it releases a hormone called ACTH (adrenocorticotropic hormone). ACTH stimulates the adrenals to produce more cortisol. However, those with CAH have insufficient amounts of the enzyme 21-hydroxylase, needed to convert a precursor molecule called 17-hydroxyprogesterone (17-OHP) into cortisol. As a result, the pituitary gland continues to sense the need for cortisol and pumps out more ACTH. This leads to an overabundance of 17-OHP, which is converted in the adrenals into excess androgens (male steroid hormones, like DHEA-S).

Long story short, if you have LOCAH then you do not make enough cortisol. If you are diagnosed with LOCAH and your cortisol levels are normal or too high, then you do not have LOCAH.

HTH.

mamacat01

Do you have to have hair growth in order to have Locah? I have none, I mean I get 2 black hairs on my stomach that get plucked but that can't count. I don't have any facial hair at all.

Doris

have any of you had the ACTH test for LOCAH? I have that scheduled on August 6... how is that? Does the injection make you sick?