Feeling rather blue: So I've been at a... - Fertility Network UK

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Feeling rather blue

Rubylou01 profile image
15 Replies

So I've been at a fairly useless clinic for the past 5 years - managed 2xICI and 1 egg collection with 2 embryos at the end. All chemicals/ failures. I had a consultation with one of the consultants about my treatment. He dismissed any supplements other than folic acid and vitamin D. Said my AMH (12.07) and FSH (9.9) were pointless to know and that at aged 44 I'd need at least another 5 cycles and it was just a matter of luck. Just spoke to a Spanish clinic and while they offer a whole lot more (PGT-A testing, double stimulated cycles, uterine tests etc) I got the same vibe: come off the DHEA, all you need is a multivitamin and folic acid, your diet doesn't matter but good to follow if you do get pregnant, at your age it's the quality of your eggs are the problem. I didn't even bother asking about my thyroid levels which are very slightly out (according to Rebecca Fetts research) as knew it would be dismissed as well. Are all clinics like this or do any of them look at you holistically and try and work with you to try and tweak anything? I know I am 44. I know my eggs aren't the best. But I want to do anything and everything I can to make this work. Am I expecting too much or is this just the norm? Any words of wisdom welcomed xx

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Rubylou01
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Football61 profile image
Football61

Hi, sorry to hear you’re having such a tough time. I carried out two IVF cycles with my own eggs last year, when I was 44. Like you, my AMH is also quite high (11.5), but I’m afraid that it didn’t work out for me because my eggs are really poor quality. However, I did find my clinic in Harley Street to be very supportive - and they were always tweaking things and treating me as an individual. I was on Folate, Vitamin D, Ubiquinol, Levothyroxine and DHEA (why did they suggest you come off the DHEA?). My clinic also gave me Growth Hormone injections. I’m also a strong proponent of PGTA, as 90% of eggs are unfortunately abnormal at our age. Wishing you the very best of luck. Please feel free to DM me if I can ever help x

Rubylou01 profile image
Rubylou01 in reply to Football61

Thank you Football - you always provide lovely words of encouragement. I was so sorry to read about your PGT-A results; testing is something I definitely want to do as well as I don't want to waste time/ any false hope. I think the growth hormone and Levothyroxine are things I am not aware of / taking. Otherwise Ive been following Fetts recommendations. The Dr said DHEA wasn't recommended for me as I am a good responder - but testosterone and DHEA-S tested in Jan and I was at the very low end of normal. And tbh since being on it my skins cleared up, I've got more energy and generally feel better so I don't want to stop taking it. Plus I'd rather look to the research/evidence of improvement in success rates of over 40s when using DHEA than their opinion which was that it could effect "other things"...since they didn't even seem to care about my baseline bloods it just seems a rather arbitrary opinion? And then I guess that leads me to: do you just not take their advice if you don't agree with it? And then: why would I use that clinic?! Feel like I am going back to square one. I really thought Spain was going to be the answer but thank you as will go and look into your one as well if you're happy to provide the details and the Dr you are seeing? Xx

Football61 profile image
Football61 in reply to Rubylou01

Thanks, that’s really kind. My clinic said that my Thyroid looked ‘fine’, but that it needed to be ‘great’ to fall pregnant - which is why they put me on Levothyroxine. The Growth Hormone is supposed to give embryos a bit of ‘ooomph’ and energy to take them to Day 5 blastocysts. I think the jury is still out on the evidence/research behind this, but I figured it was worth a shot. DHEA was one of the first things that my clinic recommended. My AFC shot up after I’d been taking this for a few months, but no idea whether this was due to DHEA (and AFC tends to fluctuate month to month).

Just to say that I have now moved onto donor eggs. The donor clinic suggested all sorts of new investigative tests, which would have set me back hundreds of pounds and delayed the process. I knew instinctively that I didn’t need the tests - the problem was my age/egg quality, not the condition of my uterus. And so I did politely push back (after doing some research).

I’ll message you the name of my first IVF clinic, which was in Harley Street x

Rubylou01 profile image
Rubylou01

Thank you so much - and that's really interesting about your thyroid. Ive been toying with the idea of seeing an endocrinologist and think will just go and do it - but I really like that your clinic considered everything holistically which seems to be what I've been missing. I have also been debating donor eggs but must admit I think I'd like one last go. Although I said that about my first/previous round of IVF. Thank you for your help - very much appreciated xx

WHeatherW profile image
WHeatherW

So sorry you're experiencing this. I'm 38 and just had my first round fail and my consultant is less than positive to me. Said nothing really impacts results and she "doesn't see the outcome changing!" I know they talk very matter of fact and certainly don't sugar coat anything but it's really hard to deal with. Fingers crossed your result changes xx

Rubylou01 profile image
Rubylou01 in reply to WHeatherW

Thank you WHeather...I keep hoping :) And I know they can't over promise anything but it just feels very dismissive. Tbh I just feel like a cash cow. But am sorry to hear you're dr was less than helpful as well. I just don't understand why more advice isn't given on preparing for ICI and IVF by clinics as there is actually quite a lot of evidence out there about improving your outcomes through diet, supplementation and cleaning up your products, etc. xx

WHeatherW profile image
WHeatherW

I know, it’s insane! Even if supplements, healthy diet, acupuncture etc could potentially improve things by a small percent, wouldn't you think they would recommend / support us with this?! Xx

CyclingAddict profile image
CyclingAddict

Have you done EMMA, ALICE and ERA testing? That made a huge difference for me. My consultant literally timed everything to the hour based on my results. If your TSH levels are anywhere near 2.5 or over, you possibly need medication prior to transfer. Good luck!

Rubylou01 profile image
Rubylou01

Thank you cycling addict - no to the tests as it's not something my current fertility clinic offers. The Spanish clinic said they would only run through any uterine tests after I'd produced a decent embryo - so only ERA on offer I think. I just would quite like a clinic that does everything /offers anything but I guess can always organise these myself, so thank you for the advice. Research on options going to take place in about 5 mins! And my TSH level is 2.26. I heard 1-2 was optimal but again, current clinic not concerned about any of this - presumably because it isn't over 4.5 xx

Twiglet2 profile image
Twiglet2

essentially that’s the stage I am at (age 42) and my clinic have said I can try supplements etc if I want (even suggested one if I was going to) but their official recommendations folic acid and vitamin D. As I’ve had a few miscarriages (and a healthy pregnancy) I have to concur with them now that it is egg quality. I’ve tried all the supplements for months in that stupid book and got less eggs collected in last round so honestly i’m not wasting my money on more tests or more supplements going forward. I have looked into DHEA but my AmH is decent so I wouldn’t touch that personally too many risks. At my age it is just going to take more tries to get the perfect embryo. I’ve had 11 embryos transferred over the past 3 years since the birth of my son (8 transfers) with 3 miscarriages/chemicals so sometimes it is just a matter of keeping trying I feel. I was offered PGTA testing but as I only get 1 or 2 embryos each fresh round now I don’t bother and just transfer back fresh as it’s quicker. If I were to get more than 4 embryos I would though. Not sure if that perspective helps any but it’s a fine balance between clinics trying new things and just wanting to keep taking your money for things not proven by HFEA in my opinion. One thing I am going to talk to my clinic about is lowering the dose of my stims as I trigger after I my 7 days of stims with some racing ahead of others and I wonder if we took it a bit more slow and steady amid we could improve quality and maybe even quantity (I was on lowest dose at age 38 with my son) I asked before and they said it was more risky as might get none but I could do it if I wanted to I think it might be worth trying so I’m going tonne that discussion again xx

Rubylou01 profile image
Rubylou01 in reply to Twiglet2

Thank you Twiglet. I understand what you are saying; I guess I just don't feel that anyone is bothered about checking whether anything else underlying might be going on - it's just all blamed on my age (which I accept is a problem). And that's great if youre clinic will listen to you - I do think they should be monitoring us a bit more closely as am pretty sure my estrogen was through the roof the last time xx

Lyndsbaby profile image
Lyndsbaby

Try Serum in Athens. I have had 3 failed IVF treatments with them but each time they tweak things to see if something else will work better. They also test pretty much everything so they do have the full picture.

Rubylou01 profile image
Rubylou01 in reply to Lyndsbaby

Thank you :) xx

Nursejess profile image
Nursejess

My AMH was 0.110 5 years ago when I started IVF and I am 8 1/2 weeks pregnant now. Egg quality and egg reserve was my issue along with thrombophilia. My doctor did tell me the DHEA wouldn't help me. I did multiple rounds of IVF with pills and injections. I've had 5 total embryos, 2 tested genetically normal. Are you getting genetic testing on your embryos? I'm been told doing a frozen embryo transfer is more successful than a fresh embryo transfer. Have you had any luck yet?

Rubylou01 profile image
Rubylou01 in reply to Nursejess

Thanks Nursejess - that's really exciting for you. If I could get 5 with 2 normal id be over the moon but expect my success rate will be much lower. My current clinic doesn't offer PGT-A. I was told by the consultant I'd need at least 6 rounds to get enough eggs to bother testing which would cost me about £48k and then £5k to send them away to somewhere that could do it so unless I had the money he wouldnt bother! They just plan on keeping popping them back in and presumably sending me away with a thumbs up and a pile of needles and suppositories for luck. Sadly no pregnancies....only chemicals. But I have also heard frozen better. And Spain at least was offering double collections to gather as many eggs as possible - as apparently your body responds better the second time round. ... Xx

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