* Author Topic: Very low AMH - what does it mean?  (Read 1419 times)

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Offline Frumafran

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Very low AMH - what does it mean?
« on: 22/11/15, 08:20 »
Hi everyone, I haven't posted for a while as been referred for IVF on the NHS and was feeling really positive, until a couple of days ago when my bloods came back to show I had an 'extremely low' AMH (all they would say is that it was less than 2). They said that it is still possible for IVF to work but that they will have to use v high doses of all the drugs on long protocol to try to get me to respond. I have been feeling utterly devastated by this, as what I'm reading is suggesting our chances of success are incredibly low, but then I'm coming across success stories that give me hope...I  don't want to kid myself that we have a better chance than we do to avoid crushing disappointment at the end! Has anyone else had a low result and got a BFP on IVF? I am reading a lot about donor eggs and wondering if we should go straight to that if our chances of it working with my eggs are so small. Would be lovely to hear from anyone, I just feel so despondent, trying to get back to my usual positive self but can't stop getting upset at the slightest thing that reminds me of what I might never have. 2 of my best friends announced their pregnancies last week and almost all of my friends have 2 kids now so this forum is such a lifeline :-[

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    Offline Lilly83

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    Very low AMH - what does it mean?
    « Reply #1 on: 22/11/15, 08:27 »
    Hello

    Firstly so sorry to hear this  ^hugme^

    My AMH was 2.2 and I tried own eggs once and got 4 eggs with 100% fert which I was pleased with but when we tried again my FSH had gone from 8.9 to 23, like you say with low AMH they want to aggressively stim you but they can't with high FSH so we moved to donor then, for me though it was a financial decision as I didn't want to waste a cycle on a small chance, if however I had enough money I would of kept trying with own eggs

    My NHS clinic wouldn't let you cycle with AMH under 2 or FSH over 10 but many ladies on here have success stories with much worse numbers than me xx

    Offline ScaryButExciting

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    Very low AMH - what does it mean?
    « Reply #2 on: 22/11/15, 09:06 »
    Have a look at Create - they specialise in low AMH and are on NHS funding list... Good luck x

    Offline CrazyHorse

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    Very low AMH - what does it mean?
    « Reply #3 on: 22/11/15, 10:13 »
    My AMH when measured in April 2014 was 1.8, and my antral follicle count is usually about 3 (across both ovaries). My FSH was about 12. You can see my own-egg treatment results in my signature -- my son should be born in the next week or two. Sometimes it does work out! And, if it doesn't, donor egg is still an option, although it is an awful lot to get your head around.

    I will say, though, that I did not get good results from high stims. (Not even that high -- my UK consultant was, quite rightly I think, very conservative about stim dosages and would not go above 300 iu / day, because he felt it wasn't good for egg quality.) On long protocol, I ended up stimming for 18 days because my ovaries were so slow to wake up from downreg; I did get 3 eggs (a good haul for me) which all fertilised, but it was the one IVF cycle where we went to egg collection and got a BFN. 2 out of the 3 embryos showed multinucleation, which didn't happen on the other two cycles where we went to EC, and I suspect it was linked to the long period of stims. The cycle that finally worked for me was mild IVF, and I only stimmed for 8 days; the resulting embryos had virtually no fragmentation, which we'd never achieved before.

    Unfortunately, though, you almost certainly won't get mild IVF on the NHS. It's worth keeping in mind, though, that there are other protocols beside high stim that sometimes work well for low AMH ladies if your NHS round fails. However, it depends on if your budget can stretch to private treatment. Your money will go much further if you go abroad for treatment (I wish I had gone to Czech Republic on my 2nd cycle instead of my 4th!), but there's a lot of logistics involved, and it's a good idea to make sure you can still afford to try DE treatment after your OE cycles if they just aren't working for you.

    How many NHS rounds are you eligible for, and will they fund donor egg? If paying for private treatment is not realistic for you, then looking seriously at donor egg straight away might be a good choice, particularly if you only get one or two chances on the NHS. Unfortunately, one of the things about very low AMH is that, due to getting so few eggs every time, you will most likely need more cycles in order to find that golden egg.

    It's really, really hard to decide which path to take in this position, and sadly it often comes down to money in the end. I wish you lots of luck with your decision and your treatment.  ^hugme^ ^hugme^ ^reiki^ ^reiki^ ^reiki^

    Offline Padellina

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    Very low AMH - what does it mean?
    « Reply #4 on: 22/11/15, 12:29 »
    Hi Crazyhorse, may I ask you which clinic abroad have you used? It is lovely to hear about your success story. I wish you and your family all the best xx
    I am due to start my 1 IVF on January. amh below 1.1, 6 tiny follicles, 38 years and decent FSH and I will be on LP. Fingers crossed!

    Frumafran, I completely understand your concerns and I am in the same boat. It really helps to hear other ladies' experiences. I also found this website as a precious source of useful info and I now feel more prepared when I speak to doctors. I wish you all the best. The donor eggs is something we have been offered too, although our NHS won't pay for it. Initially it did not seem an option for us. However now I feel very positive about having that as an option and very grateful to lovely ladies that give us this opportunity. I just need to try with my eggs first
    I wish you all the best
    Xx

    Offline CrazyHorse

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    Very low AMH - what does it mean?
    « Reply #5 on: 22/11/15, 13:16 »
    Hi, Padellina, thanks for your kind words. Reprofit was the clinic I used in CZ, and I went with them specifically because mild and natural IVF are among their standard offerings. Overall, I was reasonably happy with them. HTH!

    Offline Frumafran

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    Very low AMH - what does it mean?
    « Reply #6 on: 22/11/15, 17:00 »
    Thanks for all your responses, means a lot :) can I choose where to have the NHS-funded IVF then, as long as it's on the NHS list? I thought I had to go to my local one in my CCG area? I really hope I'm wrong though as Create looks amazing! I think I just have to take some deep breaths and get through the next few weeks, even if it's just confirming that IVF isn't working. Congratulations crazyhorse, very exciting! Need to get researching clinics abroad I think, and decide if plan B is mild IVF, donor egg IVF or adoption. My husband is so logical and says we should cross that bridge when we come to it, but I need to have a plan I think, to take back a tiny amount of control of my life!

    Offline Padellina

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    Very low AMH - what does it mean?
    « Reply #7 on: 22/11/15, 18:41 »
    It depends on your CCG. I was referred to a local hospital but then I decided to go to another one. They submitted a funding request on my behalf and made a case on why I should be treated there (I wanted to be there as it is closer to work and also because I have a Lupus and the hospital has a specialised clinic where I go for regular check ups. It felt like a safer option for me) However I know about other ladies that chose other clinics and got NHS funding. The best thing to to is to read your CCG guidelines and give them a call if you have any question (I read the same advice given by Lilly months ago in the forum and so happy I gave them a call as GP are not always the most helpful ones!). Good luck!

    Offline Lilly83

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    Very low AMH - what does it mean?
    « Reply #8 on: 22/11/15, 19:22 »
    It's usual your CCG will have a few different clinics they use, like Pad says ring your CCG and ask who they have contracts with then find out the levels each clinic accepts before you choose (they will be ones within your area not further afield)

    Some let your choose from the start, others will send you to the NHS one by default but on appeal sometimes you can go to a private one as long as it's listed, I had to put a transfer of funding request in to my CCG to move to Care Manchester on the grounds I needed donor eggs and St Mary's couldn't provide, it helps to have a reason to want to go somewhere else

    If you speak to them ask them to email you their assisted conception criteria document as it's always mega useful to have and I referenced of loads


    Good luck! Xx

    Offline Frumafran

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    Very low AMH - what does it mean?
    « Reply #9 on: 22/11/15, 21:19 »
    Thank you - I'll get onto it tomorrow!  :)