DHEA? : Well I was the lowest I've been... - Fertility Network UK

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DHEA?

GiantPanda
GiantPanda

Well I was the lowest I've been so far last week. Crumpled on kitchen floor sobbing episode. I've been trying to get my 2nd cycle of a package of 3 underway, but keep getting scuppered by cysts, endless cycles, sleepy ovaries... Plus the clinic's invoicing has been less than transparent and even our liason person is confused by it and sent us into a panic by asking for money we'd already paid etc. I then decided to cancel the cycle I'd just started as 6 days in with tamoxifen and 150 bemfola (doing natural modified) I had a single folly at 3.5mm. Crap. Consultant wanted to scan again on day 9, but that would have meant I had to pay £600 instead of £400 to cancel, so I took the matter into my hands as I didn't see things would improve.

We've decided to have 2-3 months off from ivf due to all the stress. We are pretty much resigned to the fact that nothing will work. Just want to finish the cycles and draw a line - but I know I have to keep a glimmer of hope.

Ive got a bottle of dhea in the cupboard that an nhs nurse said I might as well try, but current consultant has advised against. I'm wondering if I should just take it and see if it might make a diff? I'm 42 (just!) with v low amh/high fsh so its been a massive stuggle to just get one egg (didn't fertilise).

Anyhow, any advice welcome. Xx

37 Replies

So sorry to hear that you're feeling like this, this journey is so very tough and there are days that we just fall into complete despair I'm glad you've still got that glimmer of hope which is so important to keep. I can't comment or give you any advice on using own eggs sorry we decided to go straight to donor, I'm also in my 40's. I think having that couple of months will help you and give you time to think things through. All the best to you and here if you ever want a chat xxx

GiantPanda
GiantPanda in reply to Abaco

Thanks very much. We were told by nhs to go straight to donor but we wanted to try my eggs. Won't have money for anything else after this even if we wanted to! Good luck with your journey - I've got a lot of admiration for those who go down the de route. Thanks for offer of a chat. Xxx

Abaco
Abaco in reply to GiantPanda

You've got to do what feels right and is best for you, for us that was using donor eggs but even this route is so very difficult and has its own hurdles and obstacles. All the very best to you xxx

Oooh honey, althought I don't have advice I am sending you huge hugs, you've been through so much! Ivf can be so full of set backs, and there's always something (or the whole thing) that doesn't go as planned, it's just so disheartening. I totally understand what you mean about wanting to get it out of the way... We're currently on our 4th IVF, and our cycles 2 and 3 have been so challenging that in my mind we're just going through the motions because we'd prepaid with a refund scheme, we've had so much disappointment that before we started this cycle I considered we had 0% chance.... However each cycle has been different from the other that I now have a tiny glimmer, maybe 1% chance. It's such an uncomfortable feeling to have no control when all you do is try your absolute best and on top of that when you have financial errors from the clinic, we'll you can just do without that! You're absolutely right though that it's important to keep that glimmer of hope!

Why has your consultant advised against DHEA? I took it consistently last cycle and inconsistently this cycle but I have no idea if it has made an inch of difference. I am trying to downplay the guilt, as I always think that things haven't worked because of something I've done, not done, eaten, taken, not taken etc.... I've realised this self-blame is really unhelpful and I feel tons more relaxed about all the extras this time round. I just need to take the drugs they ask me to take and anything else is a bonus.

I have everything crossed that your next attempt goes more smoothly, you really deserve for things to go well xxx

GiantPanda
GiantPanda in reply to Bumbo

Thank so much for your reply. Yes exactly how we feel - we've paid and going through motions, and powerlessness is so hard. It's encouraging that you're feeling more hopeful this cycle. You've been through a lot more than me by the sounds of it - as I think most people on here have, so I appreciate you taking the time to offer support. My consultant said he thinks dhea complicates things, but at this stage he seems to be just trying different things to see if anything happens, so it's made me think perhaps I should just take it. Dh wanted me to go with the advice, so not sure I should tell him what I'm thinking. You're right about self blame not being helpful either. Good luck with your next round. You deservd it too. Xxx

Hidden
Hidden

I'm sorry you're going through such a rough time. IVF is just so rubbish, it changes you but you need to tell yourself that you will be a better stronger person because of it. It sounds like you need a break, I've just finished my first failed cycle and am also taking a bit of break, I need to feel like me again. I don't see any harm in DHEA, I also have low amh/high fsh and was advised to take it for 3 months. We got 3 eggs in the end (2 fertilised). If you haven't read the book 'It starts with the egg' then I would advise you do. Here if you need a vent x

GiantPanda
GiantPanda in reply to Hidden

Thanks for your reply! Sorry your first round didn't go well, but it's positive that you got some fertilised eggs. Hopefully after your break you will get a stage further. I've seen lots of people mention that book so I should look it up. I know what you mean about not feeling yourself. From the very start I've felt like an animal in this process - hence my handle! Good luck with your next cycle. Xxx

GiantPanda
GiantPanda in reply to Hidden

Ordered that book - coming tomorrow! X

Hi GiantPanda, I’m the same age as you and decided against taking DHEA - I couldn’t find a clinic that would support it and reading up online I found that some of the side effects could be irreversible. I made the decision with my OH that my own health was more important at this point. That said, I think there are people on here who have taken it and has success. Good luck with whatever you decide to do xxx

GiantPanda
GiantPanda in reply to 7AVA

Thanks for your repky. I know - I've read mixed things which is why I've been hesitant, but I think the pills are a low dose, so I'm leaning towards the might as well give it a go side. Good luck to you. Xxx

gcw104
gcw104 in reply to GiantPanda

Oh and I’m only taking 50 mg instead of 75mg for now I was also a little hesitant taking them due to no tests been done it’s always a worry your making the wrong choice.

Hi I’m not doing ivf but have had 2 mc in a row I’m 38 and have had no tests I’m taking dhea and ubiquinol have had no major side effects. This is my 2nd cycle hoping my eggs are healthier.

GiantPanda
GiantPanda in reply to gcw104

So sorry about your experience. Its good to know you've not had any side effects. Good luck. Xxx

I'm definitely a supporter of DHEA. It didn't get me a bfp but I did get to blastocyst stage whereas in my previous cycles they all perished by day 3 and I had more follicles! I can't say for sure of course but what have you got to lose?! That's how I looked at it anyway. I did ask my embryologist and he said there is small studies that support it but no huge evidence base....said it was up to me. However by the time if finished my NHS cycles and went for my review appt the consultant asked if I wanted yo try again he would recommend DHEA.....i said I'd already done it and he replied I did wonder! We obviously moved on donor eggs but do I think it helped....yes! I didn't have too much side effects apart from perhaps greasier hair, the odd more spot, more emphasised hormones....like sore breasts at ovulation time. If you Google Dr Norbert Gleicher DHEA he has some you tube videos of why he supports it and he's quite a but name in fertility in New York! Best of luck with your decision! Massive hugs to you too honey, hope the time off helps!!xxx

Hey Cinders! Thanks so much! That's really encouraging. I will look at the YT clips. I'm figuring Ive got nowt to lose at this stage. We're trying to emulate what we did the one cycle that almost went right - and that was mainly eating loads of fresh fish and salad, so maybe the dhea will give an extra boost. Hope you're doing ok, and hope your mum is too. Xxx

Well I've got no evidence to support that made the difference but I was at the point where I just thought, it can't be any worse!! Might have just been coincidence but maybe not! I'm good ta! Mum is doing amazing, still sore but although it was confirmed as lung cancer there is no further treatment required....so very lucky to have caught it so soon....blessed!! Thanks for asking!🤗xx

Sorry you have been in a bad place, ivf and the ups and downs are evil.

I really think dhea brought down my fsh and did help me - after a while on it I suddenly conceived twice and also got blasts. Hope you feel a little stronger soon and your cycles go a bit better. I had cyst cancellations too and one much poorer cycle and it’s so frustrating xx

Hi Orla. Thanks for replying. I know fron your post that you've got a lot on with decisions just now, so I hope you get a positive way forward. It's interesting that you have been having dhea as I think we are still with same clinic? What dose have you had and did you take it along side the ivf drugs? I'd be worried about telling the consultant I'd had it when he told me not to.

We were advised after our 3rd failed ICSI cycle to go for Donor eggs. We refused at that point because we still had 1 cycle left on our Access Fertility programme and, as we were on the refund programme we would need to complete the cycle in order to get the refund in order to pay for a donor cycle! Fast forward & I'm now 24 weeks pregnant on our 4th cycle using my eggs.

Out of the 3 previous cycles we only got to transfer once, 2nd cycle only 1 egg was collected & failed to fertilise overnight. 3rd cycle the 2 remaining embryos died before transfer.

I took DHEA & Ubiquonol for 3 months in preparation for the 4th cycle and ended up with a really good quality embryo which was transferred along with 1 not so good. I am 100% that the difference in my egg quality was to do with the DHEA & Ubiquonol!

It never improved the quantity of eggs but most certainly improved the quality! I asked the consultant after our first failed round about DHEA and he gave me a leaflet but said that because my AMH was 9.2 then he didn't think that DHEA would prove to be beneficial to me.

We didn't tell the clinic that we were taking DHEA for the 4th cycle and, as I didn't seem to have any major side effects I took them both for the recommended 3 months before we went for cycle no 4.

We put a lot of trust into Doctors/Consultants and, quite rightly so but, if we had listened to our consultant we would be heading for a donor egg rather than now being pregnant with a child that is 50/50 mine & my husbands!

Thanks so much for sharing your story LorraineB and massive congratulations! It's great to read such good news. I know I might not have the same result, but I'm always really happy to know someone else has 😊. I know what you mean about questioning consultants' decisions. I love mine, but last cycle he'd said he was going to try one thing with drugs dose, and when it came to it, he prescribed something else. When I queried, the choice was placed with me. What do I know? It felt like when you watch a makeover show and the hair stylist says to the person 'this is what will suit you', they do the style and the person is transformed. Then I go to a salon myself and ask them to do something that will suit me and they go 'Well what do you want? Have a look through these magazines.', and then I always walk out looking like Brian May (I have curly hair). I want to do everything in my power not to end up as Brian May at the end of this process! Sorry about the analogous ramble - but I think you're right. I started taking 50mg of dhea yesterday. I want to try the ubiquinol too. Where did you get yours and what dose? Thanks and congrats again. Xxx

Brian May has lovely hair!!!!

I was quite lazy with my ubiquonol & got it from Holland & Barrett which, I think was slightly more expensive than ordering online but it meant I could start it the very same day!! I took 300mg daily.

The only other with DHEA is that the micronized version seems to work better but you need to order that online! I think I got mine from MacPhersons labs??

Good luck x

Thanks LorraineB. My closest H&B is tiny, so not convinced they'd carry the ubq. I've ordered some online. Oo will check if my dhea is micronized. Have been shocked at how cheap that is online. The nhs clinic who sold me it charged me £40 - same online: £15. Fertility support a licence to print money... Xx

Mar3344
Mar3344 in reply to GiantPanda

Hi GiantPanda which NHS clinic did you get your DHEA from? Only seen it for sale from USA. Thx

GiantPanda
GiantPanda in reply to Mar3344

Hi Magda. When I checked the dhea I got from the clinic, it wasn't micronized, so I've ended up getting the stuff from the USA. From what people have said on here and from what I've read, the micronized stuff is better as works more effectively and reduces side effects. I think the original non-micronized stuff I got was a lot cheaper online - called Eurovital. I was surprised that the clinic were even selling the other stuff if its not meant to be as effective. Made me even more glad I left them.

Hi GiantPanda, I’m looking to buy DHEA and was going to buy it from Biovea but would rather buy the micronised version. What website did you get it from the US, I can’t find it anywhere? Thanks x

Hi Siobhan. I got it from Mcpherson Labs, Texas. Www.dhea-uk.com. The website looks a bit dodgy, but comms were good and my first order was quick to arrive. I've ordered another bottle, but this seems to be taking a bit longer to get here. The US clinic that first recognised the benefits of DHEA sell their own brand, but it's very expensive apparently (Mcpherson is exxie enough...). Someone else on here might be able to give you more info if you were interested in that. Good luck with everything! Xxx

Thanks GiantPanda, I read another woman had issues with this website as her package got stop at customs and the company wouldn’t give her a refund and said it was in the T&Cs. I presume you have never had any issues getting it delivered.

Also have you just decided to take this of your own accord or have you spoken to your clinic about using it. Someone told me that you need to get your testosterone tested as it shouldn’t go over 2 but Ive read Rebbecca Fetts book It Starts with the egg and she doesn’t mention anything about monitoring your testosterone levels she just recommends 25mg 3 times a day for 3 months.

Any advice would be great as I’m just a little nervous taking something without guidance from my clinic.

P.s I have my first follow up after my failed cycle on the 11th of Dec so will mention it then but I’m on the NHS and not sure if they entertain it and not 100% tested but I really want to give it a go anyway.

Thanks xx

Hi Siobhan, just to chime in here. I would ask your clinic if they have any objections to you taking it. I ordered mine and had decided I was taking it before I asked my NHS clinic even if they said no (naughty I know) but they didnt have any problem with it and they now recommend trying it! Oh and I took the 75mg (3x25), didnt get my BFP sadly however I did get better quality embryos. Good luck.xx

Thanks Cindrella, glad to hear they were supportive of it. So did you get a prescription off them or where did you source your DHEA?

Also have you been getting your testosterone levels checked if is it safe to just take it for the recommended 3 months at that dose?

Sorry for all the questions xx

I got mine from Biovea as this was the easiest place at the time but they do say that micronised stuff is better but hard to get your hands on. I didn't have my levels checked.xx

Yes I was going to buy mine from Biovea but I’m trying to get my hands on the micronised version.

I’m sorry to hear it didn’t work for you last time. It’s great to hear you got better quality embryos though. What are your next steps are you going again?

I only got 2 eggs last time and none of them fertilised. So I’m hoping to at least get a bit further this time xx

Im currently doing treatment with DE now so fingers crossed!xx

Oh best of luck with it. My sister is also about to do a new cycle with DE aswell with a clinic in Barcelona. I’ll keep everything crossed for you xx

Thank you! Feel free to have a nosey at my old posts to see if you think DHEA made a difference as I did post up ages ago my egg numbers collected and embryo info etc. Good luck to you too!xx

Thanks, Im new on here so still navigating my way around but just managed to look at your page and you sound like you’ve been through the mill. Very similar story to my sister so I know how hard it must be for you but great that you are going with DE and please God you’ll get your little miracle.

I feel like my journey is just beginning compared to all of you on here but regardless of how many times you e done it getting that phone call to say none have fertilised was the hardest thing so I’m trying to do as much research as possible to see if we can make some improvements for next cycle.

Thanks for all your help so far and good luck xx

Ahhh welcome! Hope you find this sight really helpful, everyone is so supportive and it keeps you as sane as you can be doing treatment! I guess I have been through the mill a bit but still trying to fight on until there is no fight left I guess! Those calls are awful but you can only do what you can, hopefully this next cycle will be more successful for you!xx

Thanks, yes it has been really helpful everyone is so supportive. It’s hard when you have so many questions so it’s great to speak to others in the same situation.

Best of luck with your DE cycle, I’ll be looking out for an update xx

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