Too much DHEA-sulfate, but no tumor???? I am soooo confused.
I have had a strange amount of symptoms sense having my daughter. She is three years old now but she came out 10 pounds and faceup!!!! I'm not even a very tall person either. Well, anyways, my doctor has only found high DHEA-sulfate levels in my blood. my blood cortisol levels were normal though, but she is going to have me do a 24 hour urine test for cortisol in my urine rather than blood. she also had me do a cat scan or mri (can't remember which one it was but I had to drink that nasty tasting stuff after fasting..... well with the DHEA-s levels she fully expected to see tumors.... NOTHING.... I am confused. Well now back to the 24 hr test... she is thinking Cushings syndrome... I thought that only had to do with cortisol?? where does DHEA come into that? not only that but cushings causes the high BP... but I DO NOT have that problem... in fact I've had the opposite problem... sudden drops in my blood pessure... almost like an addisons attack???????? I have the salt cravings the drops in blood pressure... but I believe my doc said my aldesterone levels were normal????? someone can't have two things wrong with the adrenals at the same time like cushins and addisons can they???? my doctor is one of the best in the state and I trust her... its just I'm sooooo confused with all my symptoms..... I have had problems with my digestive system.... it won't move regularly unless I drink lots of the nasty orange fiber drink every day.... I tried miralax and fibercon apart and at the same time.... didn't work.... just metamusil type orange psillum fiber drink.... I have to shave way too frequently... even nair doesn't keep it gone for a week..... And the WEIRDEST SYMPTOM I've had heat sensitivity.... like it makes me nausiated and dizzy .... not constantly, just some of the time... my symptoms aren't consistant either.... some days, I'm so fatiuged, i have to peel myself out of bed for even a doctors appointement...it is literally hard to get up in the morning.... and suddenly I'll have a week or two without a spell and can stay on task without feeling so ...off on my bodily functioning. Sometimes it seems like this problem with my adrenals cycles with my period... when its normal... I don't even know if I sound like I'm making sense, because my own symptoms are sooo confusing to me, let alone to explain to another..... oh I've also had weight gain that I can barely keep steady to not gain more, let alone try to loose.... I feel week a lot of the time.... I used to be such an in-shape, strong person...... if someone has the slightest suggestion on this, I would appriciate it!!!!!!!!! thank you.
I can tell you that some women who have PCOS (polycystic ovary syndrome), do have increased levels of DHEA and they will also have increased levels of testosterone. You might want to consider asking your physician to check your testosterone level as well.
What are the symptoms of polycystic ovary syndrome (PCOS)?
Not all women with PCOS share the same symptoms. These are some of the symptoms of PCOS:
infrequent menstrual periods, no menstrual periods, and/or irregular bleeding
infertility (not able to get pregnant) because of not ovulating
increased hair growth on the face, chest, stomach, back, thumbs, or toes—a condition called hirsutism (HER-suh-tiz-um)
acne, oily skin, or dandruff
weight gain or obesity, usually carrying extra weight around the waist
insulin resistance or type 2 diabetes
high blood pressure
male-pattern baldness or thinning hair
patches of thickened and dark brown or black skin on the neck, arms, breasts, or thighs
skin tags, or tiny excess flaps of skin in the armpits or neck area
anxiety or depression due to appearance and/or infertility
sleep apnea—excessive snoring and times when breathing stops while asleep
Both my testosterone AND my thyroid levels were NORMAL!!!! one more reason I'm so confused..... Also, my doctor has already looked into PCOS.... not that problem... I have three children and no problem getting pregnant..... my blood cortisol was also normal!!!! That is why my doctor is now looking at cushings syndrome.... What happens if I have to have an adrenalectomy????? One thing I don't get is that in cushings you get high blood pressure... I have drops in my blood pressure.... as low as 70 over 40-somthing..... my symptoms almost contradict each other.
I am here to tell you that you CAN have it both together.
It is called cyclical Cushing's. I had it.
I know many others that had it. My BP was also low. My cortisol tests were largely low, DHEA high, and I gained weight. Not everyone has all the symptoms or all the same symptoms.
Cortisol can be up and down like the wind. It fluctuates naturally anyway.
I did have PCOS too as well as thyroid and other issues so my picture was even more muddy though. And I had another pituitary tumor too. I was (am) a mess. I had high testosterone.
As for the normal cortisol, it can be a high CBG (cortisol binding globulin), lab error, or medications keeping it down, or time of day being wrong. All my cortisol was high high high at night - I never slept well but I was so low during the day that my 24 hour test averages were pretty normal but the 10 hour tests were very high!
It just takes a lot of testing and a very savvy doctor!
I was amazed to come by your posted comment. I also had a daughter 3 years ago and ever since then have had some things here and there that were odd. I finally had a complete hormone test done and found my DHEA and DHEAS levels to be high. I have also had some hair loss and irregular menstruation. I am in the middle of having some tests done by an endocrinologist, but at this point have no clear answers. Do you know any more information since you last posted?
Just came across your post,I see it is from a while back. I have an identical story and I am still looking for answers. I just wonder how you have been and if you have found any answers. All of this came about after my sons birth. He just turned 4.
I have a DHEA Sulphate level of 812 and my testostrone was normal. I am getting an appt with an endocrinologist. What did you find out with your condition? I don't have any of the symptoms of PCOS that I have read of anyways. I am just stressed to the max about this waiting game. How did your tests come back? any update?
This is an old thread so you may not get a reply from Grizz...
I am assuming you are female - but the endo may push PCOS anyway (seen that a lot) so make sure you get copies like you did and read up on what he or she is testing you on. Even though DHEA sulfate is an adrenal test - they need to go up further and test, IMHO, some pituitary as they need to test for other androgens such as LH and FSH to see what is going on to see if the signalling is off (not likely if testosterone is ok) and some other hormones like cortisol can effect DHEA sulfate as well.
I do hope they do some imaging as well.
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