Intro and DHEA-S Question

TammyDoubleB · December 2015

Hi, I am (not so) new around here. I'm 42; my husband is 43, and we have been TTC for 4 years. We have had 6 IUIs and a couple of medicated cycles without IUI. We are currently on our 3rd RE (don't judge). The first didn't monitor very closely; my husband didn't care for the 2nd,; and we just recently started seeing the 3rd.

After our initial testing with this new RE, we we were told that our best shot was IVF with donor eggs (primarily because my age and because of the number of failed IUIs). After insisting that I exhibit most of the symptoms of PCOS (even though I have never been officially diagnosed and have never been treated for it), the new RE ordered some additional blood tests. A couple of days later, they called me in for further testing. They said my DHEA sulfates were over 800 (831, I think). High end of normal is in the 200's. They wanted to see what my hydroxyprogesterone level is. They said if that's normal, they will order an MRI; because that most likely indicates a tumor causing excess secretion of DHEA from my adrenal glands.

So, it's Christmas Eve Eve, and I most likely won't hear from my RE anytime soon. So, I am freaking out and turning to Internet strangers. I don't know if I'm looking for distractions, advice or encouragement (though encouragement for my situation seems unlikely).

Edited for spelling error.

wifeinraleigh28 · December 2015

Welcome to our little corner of the Internet! I'm so sorry about what you've been going through, and even sorrier that they have left you hanging like this. I don't know that I can offer any advice, though it sounds like you are now in good medical hands. And as for getting through the holiday, just know that you have joined a wonderfully supportive community! I look forward to getting to know you better. *cyber hugs*

TammyDoubleB · December 2015

Thank you. Happy holidays!

BrightenMySky · December 2015

Welcome and sorry you are left hanging right now. I do not have any advice about the medical issues, but I did want to comment on your "don't judge" comment related to being on your 3rd RE to say good for you, you advocate for you and make sure you get good care. I had to see one of the other REs in my doctor's practice yesterday since mine was on vacation, and he was terrible, awful, horrible...made me realize how fortunate I am to have my RE (who was a recommendation from my PCP) and the difference it makes. Who you are working with is so important, I cannot imagine judging you for that!

KLake42 · December 2015

I'm sorry you got such unexpected news. I'm not an expert on elevated DHEA levels, but I understand there are a lot of different things that could be at work. I hope you get more information soon, and that what you learn helps you move forward to a place of better health.

RipleyLV426 · January 2016

It could not be a tumor! Don't freak yourself out by going down the rabbit hole called the internet! My DHEA is 511, and there are a number of factors that could get it that high for sure! Just wait for your doctors diagnosis, and try not to obsess (which is impossible). Please let us know how everything turns out @TammyDoubleB

TammyDoubleB · January 2016

Thank you...sorry I'm just now coming back to see your responses. Thank you all for taking the time to comment.

What else could it be, RipleyLV426 ? I know elevated DHEA-S could also mean PCOS (which is why I insisted on additional bloodwork in the first place), but Dr. Google said a level over 700 is more indicative of a tumor. (Yeah, I'm that girl...Dr. Google and I are close).

Initially, I said I thought my level was 831, but the RE's office called yesterday to say they are scheduling a CT scan. She said my DHEA-S level was actually 886. My hydroxyprogesterone was normal. Prolactin normal...seems like everything else was normal. So, she said that rules out Congenital Adrenal Hyperplasia. I asked what if it isn't a tumor, and she just said that they would treat me with antibiotics to get the DHEA level down but that it is definitely something we need to address.

Thank you, everyone.

RipleyLV426 · January 2016

@TammyDoubleB I hope it's not a tumor. And I am also getting my blood work done again! During my TWW I lactate! So my doctor thinks my prolactin levels could be way off. If it comes back high, I have to get a CT as well...We may be in the same boat

TammyDoubleB · January 2016

Oh no! I'm so sorry. Keep us posted. I hope you find answers soon also.

kaitielynnrichardson · January 2016

I have DHEAS levels in the 800s as well. I was put on dexamethasone to get that level to come down and it did the trick. Good luck!!

TammyDoubleB · January 2016

Thank you, @kaitielynnrichardson! Do you feel better since you got it in balance?

kaitielynnrichardson · January 2016

**Trigger Warning - BFP Mentioned*

@tammydoubleB, yes absolutely.. Interestingly enough, I started sleeping better and had more energy during the day too.. On top of that, I did end up getting my BFP. I am currently 18 weeks along. It was a long hard year of BFN after BFN, but once I sat down with my RE and discussed getting the levels in a good range, it took one month of letrozole, the ovidrel trigger shot and timed intercourse to get pregnant. I was shocked, and so was my RE!

TammyDoubleB · January 2016

Ah, congrats @kaitielynnrichardson! Thanks for sharing!

RipleyLV426 · January 2016

@kaitielynnrichardson Do they have you take it everyday? My doctor only has me on it from day 3 till the day of my IUI. I was wondering how effective that could possibly be! I was thinking of asking them to let me take it daily, but I have very little references because I don't know many women who've taken it.

kaitielynnrichardson · January 2016

@ripleylv426 I took it every day at night until I got my BFP, at which point I had to stop taking it. After baby is here, I plan on getting my levels checked again to see if I will need to go back on it. I would have been on it daily for 6 months had I not gotten a bfp in order to lower the level and keep it low for an extended period of time. I had really high DHEA-S combined with a few other hormone level issues, so my body was not producing any follicles large enough. Once the DHEA-S level came down, I produced one 18mm, one 14mm and a few 9mm follies..

tammybrowning · January 2016

Update: My abdominal CT scan was normal. Now, they have asked me to do a 24 hour urine test to check cortisol levels.

@kaitielynnrichardson, did you have any other symptoms besides fatigue and insomnia? Did your doctor give you a reason your levels were off?

kaitielynnrichardson · January 2016

@tammybrowning the most noticible symptom to me was more hair growth than normal. I actually started laser hair removal years ago and found it odd that I was still having to have areas treated. It would never go away!! As soon as I mentioned that my RE knew I needed the dexamethasone supression therapy.

RipleyLV426 · January 2016

@kaitielynnrichardson I wish I would have asked my doctor sooner about taking it everyday. I heard high DHEA levels can effect egg quality as well. I never understood why she only had me taking it on the days I was doing stims.

kaitielynnrichardson · January 2016

@ripleylv426 for what its worth, if I had not mentioned the hair growth issue, my RE wasn't going to put me on it daily either.. I am not sure what the threshold is for whether or not you take it daily, or just during your stim days? would be worth a conversation for sure. good luck to you!!!

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