Dhea rant (sorry!)

[Orla9298]

On the topic of DHEA, it’s not fair what a lot of us are having to do. Fair enough our consultants are recommending we take it, but none of them will follow us in that journey to monitor what effect it’s having. Nor do they tell people to buy the micronized version. Nor do they tell us what dose or when to stop, or what to do if you get pregnant or what do do if you do 4 or 5 back to back rounds like me and many others. I feel like I’m so often trying to “advise” people about the dose or where to buy when they haven’t been told, but I worry massively about giving bad advise as it’s not my place to but so many worried women ask. It’s been 3-4 years of consultants recommending it left right and centre but no one yet taking control of it.

As a positive, my “attempts” at getting pregnant have been better each time (ivf fail with no transfer, ivf fail with a double embryo transfer, to them a natural BFP followed by miscarriage) throughout 11 months of DHEA.

I actually do think it’s the dhea as my estrodiol was menopausal without it and now it’s in the normal range after 11 months dhea. But what the hell am I supposed to know??? I’m doing my best with no help!

Has anyone ever found a consultant to be more helpful than the above? Or any literature with more info than “it starts with the egg”?

I’m getting so frustrated because I feel like I am getting close to sorting out the issues stopping me having a baby yet I’m still miles away as no one will follow anything through.

I’m so sorry for the negative rant. I always try to be positive in here and try to share anything helpful. But I’ve hit a wall.

[Scarlett13]

You're right! If it wasn't for the forum and google I would have been at a loss today! I was told to take it but not how to buy it, not how much to take, I don't think I've bought micronised though - what's that? Does it make a difference? Not that it's your place to tell me like you say! And I always feel I need to google the pros and cons of taking things....it sounds good but more explanation and advice would have helped!

[Orla9298 in reply to Scarlett13]

Hi lovely. As far as I know, it’s pretty important that it’s micronized (means it’s more effectively absorbed) and lots of consultants recommend biovea website which is not micronized, without even realising this. To buy micronized you have to buy from the US. I’m not sure if it’s allowed to recommend but I used biovea non micronized dhea without knowing for my first round, then the micronized brand MRM via the website ipumpshop for my second round which was better, and for my natural BFP. I would recommend the MRM brand and using the website ipumpshop.

What freaks me out, is if my estrogen was menopausal before dhea, and dhea fixed it, then when I got pregnant, what damage did it do stopping dhea?

We are just on our own with it too much and it’s not fair.

I’m seeing an endocrinologist for my thyroid and I have chosen one who mentions that they have interest in hormone related infertility. I’m going to do my best to get some answers

Xx

[Scarlett13 in reply to Orla9298]

I'm seeing if my order can be cancelled. Do you pay about 30 dollars for shipping? Hope you've not caused any damage stopping the use of DHEA but we are so in the dark?! If you get any answers from your appointment please update me and good luck! X

[Orla9298 in reply to Scarlett13]

I don’t think I paid $30 shipping, I chose the economy option and I still got it pretty quick.

I miscarried just 10 days after my BFP and after stopping dhea. I hate that I’ll never know why but it worries my not knowing.

I wish you lots of luck xxx

[Scarlett13 in reply to Orla9298]

Oh goodness I'm so sorry - it's such a worry not knowing if there is or isn't a connection between the 2? Xxx thanks for your help

[vic77]

my cycles got better too after dhea and had best cycle though still bfp when took micronized. we are taking a break over Xmas but I am now wondering if I should keep taking it while trying naturally then Orla9298

[vic77 in reply to vic77]

ooops sent too soon...I stopped it after egg collection and haven't taken it since then and have had a fet just there and 2 frosties left so I wasn't planning on using it unless I went for another fresh cycle. I will ask my consultant about it when I see her next week and let you know what she says as I may go back on it now while we are having a break and ever hopeful maybe just maybe we might fall pregnant naturally. I totally agree with all you said above too though. our consultant was pro dhea xxx

[Orla9298 in reply to vic77]

I think it’s worth taking to try naturally. In the book it starts with the egg, she made references to trials using dhea for ivf and commented that some of the women conceived naturally before starting their Ivf x

[Loopielu]

Interestingly my clinic actually say on the PG test notes that ladies taking it must stop if they get a positive result. It’s amazing how little info on it that there is... xxx

[Orla9298 in reply to Loopielu]

Yes, that’s what I did. Then I worried that it might have a negative effect as that’s what kept my estrogen at a normal level, so worry that it will have dropped when I was pregnant. If I ever get a BFP again I’m going to ask them to test my estrogen after coming off it x

[SJA14]

Sorry I can’t help with any extra advice - it just doesn’t seem to be out there!

It’s interesting that you say some consultants recommend taking it. I asked mine about it and they said it’s dangerous and I shouldn’t take it. I even asked if I took it anyway if they would just monitor me to check if I get any side effects but they said they wouldn’t do that. So now I feel like I can’t take it (who wants to against medical advice?! That would be a bit scary) or I have to completely change clinics. I’ve been through 3 cycles with them and they know my history so a bit reluctant to move but also a bit disappointed that they won’t let me try this.

I really wish that they would do some more research into this or at least develop a blood test to detect if you need it or monitor you if you do... just seems to be no help around for this at all. Very frustrating!

Good luck, I hope you find some answers xx

[Orla9298 in reply to SJA14]

It’s supposed to help quality as well as quantity and I would say it has definitely helped me

If you have tried 3 cycles with your current clinic, you could consider transferring Your notes to another clinic? They have to do so for “continuation of care”. I did 2 rounds at an nhs clinic and when I moved to another clinic they transferred everything, and I didn’t need to pay for a single other test to start round 3 xx

[Hidden]

Can I just ask why people know it's better to take micronised?

[Orla9298 in reply to Hidden]

It says so I’m it starts with the egg, and in lots of other online sources x

[Hidden in reply to Orla9298]

Ok, I havent read that, I looked at loads of online resources before I started taking DHEA and not one thing I have read mentions micronised.

[Orla9298 in reply to Hidden]

I think the non micronized will still have an effect, it just isn’t as easily absorbed so maybe not as strong x

[ClarabGlasgow]

I agree everything I know about this is self read or from you lovely ladies! Sorry to hear about your miscarriage. I haven’t started taking yet as I was thinking to try vitex first to see it helps stop the brown spotting I often get in the days leading up to af. I also read that it might be useful to get android/cortisol tests before taking this bit have no idea where I’d get it done. I can send you the article if it helps? I was going to ask gynae about how I could get these levels checked as I have an appointment in December . I will let you know x

[Hidden]

I ladies I know there is a lot of confusion over this and I just wanted to say that I'm with a private clinic in London and was told to buy miconised form of DHEA as it is better absorbed and i was told to take 25mg 3 times (i have low ovarian reserve) a day for 6-8 weeks up until ec and then I would need to stop. I've been taking for a couple of months and im now at the start of treatment. I haven't noticed any side effects but a cyst did show on one of my ovaries at my last scan and I don't know if they are related. My consultant advised an online address where I could buy the dhea so if anyone needs this pls message me. Someone wrote on here a while ago saying that the nhs were beginning trails for dhea so I think it will take some time before we get some concrete advise but I figure that there must be some evidence if they are doing trails xxx

[Heidide in reply to Hidden]

Yes please can you let me know where your consultant recommended..? Thank you,

[sandra81]

I did my ivf in South Africa. The doctor told m they used to routinely recommend it to women for egg quality but they stoped because they did not have evidence that it worked to improve egg quality