First set of blood tests reveal that my FSH level is now 14 point something.
Aaarrrggggghhhh!!!!
Doc said that the only thing the DHEA would do for sure was lower my FSH (which was actually fine at 7.4). Instead it's doubled. This is not at all good and naturally the doctor's office is closed and so I can't see/speak to anyone. I've been in tears since I opened the mail and saw those shocking results (I get copies sent to me). My free testosterone and DHEA-S levels are also stupidly elevated and I'm thinking I should stop taking the DHEA. ButvI'll wait and see how disastrous my AMH and Inhibin-b levels are, talk to the doc and then decide.
Taking DHEA was NOT supposed to make my situation worse, but so far that seems to be exactly what it has done.
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This is my biggest fear about all this stuff. I know it works, and that you just have to get it dialed in (which is bound to take a bit of trial and error), but it is still scary to think that it all might make things worse (even if that is an irrational fear).
ReplyDeleteReproduction just seems like such a tricky process!!
Anyways, I hope your doctor has some other options for adjusting your hormones.
Oh, how completely awful! I'm so sorry, and sorry this news got to come in the form of an extremely unhelpful letter! I wish I had encouraging words for you...I hope you don't have to wait too long before getting some good info from your doctor.
ReplyDeleteI'm really shocked by this. But I also think that the DHEA must be responsible, as I think it's the one thing you've changed? Is it possible that the testosterone has had some strange effect? I think I might have mentioned: I was on DHEA for several months. I stopped because of heart palpitations and because I hadn't had a baseline testosterone (oh, and the acne was a real pain, too). All of the above made me nervous and I quit, which was hard to do as it seemed to offer so much hope. But I remember at the time I was researching it that I found occasional stories for women on whom DHEA had had the opposite than hoped for effect.
ReplyDeleteBUT, I think the thing to keep in mind is this: DHEA leaves the system (I believe) in 2 weeks. I really believe this has to be the reason why your numbers are out of whack. Ergo, if you go off of it, it makes sense that your FSH will go down. Hang in there, P.. These are odd results and I just don't believe they're reflective of what is actually going on.
I'm so sorry to hear that. It's shocking to get that information without anyone to ask about it. I do hope that it's the DHEA. I've heard of plenty of women who get a high number only to have it resolve to a more reasonable level.
ReplyDeleteI'm sending you all sorts of good wishes and I hope that you get to talk to someone about this in short order. I'm hoping those AMH levels prove more positive. Loads of good thoughts being sent your way!
Dearest Pundelina,
ReplyDeleteI am so sorry about your results - to receive them in the mail without an RE to help you interpret them just adds insult to injury.
As one who took DHEA for 6 months and did copious amounts of research on it, let me tell you what I know:
1) On or off DHEA, your FSH is going to fluctuate. I am shocked to hear that your doctor said it would lower your FSH for sure, as this is absolutely NOT the case - it does not help to lower every woman's FSH - it helps some women over time, but not all. That said, my understanding is that DHEA is not likely to be responsible for increasing your FSH - if your FSH is higher this month, it's likely because on this particular Day 3, your ovaries are simply needing more prodding to get going - yes, it could change next month. Your FSH is yes, higher than they like to see for responding to IVF drugs, and yes, it does indicate a lower egg quantity (which AMH is an even more accurate indicator of), but take heart in the fact that your FSH is not super high. And remember there are many stories of women conceiving naturally during the cycles in which they have had very high FSH - much much higher than yours. Yes, DHEA will definitely increase your DHEA and free testosterone levels - this is expected by any RE who prescribes it and not thought to be harmful.
2) It apparently takes around 6 months or longer to see any positive results from DHEA, if they do happen (which, again, they unfortunately don't for all women). I forget how long you have been on it, but you may want to give it more time. Grizzy Eggs (not sure if you read her blog) was on it for 9 or 10 months I think before having a low enough FSH to do IVF (and she conceived, so she is a DHEA success story).
3) Something to keep in mind, too, is that you cannot look at just your FSH number - you must also look at your E2 (estrogen)...if your FSH is low, but your E2 is very high, that is the same as your FSH being high (I think I talk about this in more detail in one of my many DHEA posts on my blog, if you want to click on DHEA and read them). So when my FSH was 5.27 one month, it didn't mean much because my E2 was crazy high. And then when my E2 was great, my FSH was very high, unfortunately.
Although you haven't received the results you were hoping for, I hope that some of what I have written here is helpful to you. I think it's really important to have a doctor that will really help you to understand all these results and what to expect from trying DHEA, as well as what your options are for treatment - as you know, I have found an RE who specializes in POF and is not adverse to working with me and doing IVF with me regardless of my high FSH. Of course, he advised me to stop DHEA. Time will tell if that was the right or wrong decision for me.
I know it can feel like it (oh boy do I know), but high FSH is not a death sentence - it is one number and you can still conceive despite it.
Feel free to e-mail me if you want to chat about this more - sending you lots of hugs and love.
Love,
Maddy