Upset and frustrated: Hi Everyone, This... - Fertility Network UK

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Upset and frustrated

Rach2585 profile image
21 Replies

Hi Everyone,

This is my first post so apologies if it is in the wrong forum or feed. I am 31 and myself and partner have been TTC for nearly 14 months. I was recently referred to the women's hospital for further investigation. My partner's sperm count was fine and my hycosy came back that I had clear tubes. However, my amh was only 0.68 and I was told that I was negligible for ivf funding based on this.

They've told me I now have to wait for an fsh test on 2-4 day into my next period. If this comes back at a level that's either too high or too low then they won't find ivf. To add insult to injury, I have a bmi of 30.7 and the specialist also seems to think that I am just one of the minute percentage of women who has a rapid decrease in amh and there is no rhyme or reason.

As you can imagine, I am devastated. I left without asking anything else and just cried. To be honest, I have now read up on low amh and there seems to be many questions that I still have unanswered. Trawling through many sites, I have come across women who swear by vitamin d intake and I have started this over the last week as well as trying slim fast. I am now wondering if people have similar situations and what they have done.

There are some sites that mention follicles but I wasn't advised of this last time I went. Does this have an impact? Also, I am still ovulating and having periods (albeit, around 21 day cycles) so is clomid not an option? I've also read that people have had injections before to boost ovulation but again I am unsure if this would be an option for me. Sites have also mentioned dhea but again I have no idea what this is or even if I am eligible for this on NHS?

I feel that I can't really speak about this to family members as they will only worry but I am really depressed about the situation and what is best to do. I worry about work too as I am a teacher and have been getting time for appointments but I worry that if this continues then I will be questioned about this and wonder where I stand.

If anyone can offer any advice, I would be more that grateful. If only to lift the depression. I feel that everyone around me is pregnant or has just had a baby. Not that I am jealous of this as I am delighted for my friends but I just wonder if and when it will be my turn :(

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Rach2585
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21 Replies
Cyantist profile image
Cyantist

Hi Rach,

It's hard not to feel down when you're trying for a long time and it just doesn't work,

I assume your AMH is 0.68 pmol/l, rather than ng/ml?

I know that for a lot of people IVF if necessary and the only option, but I honestly think for a lot of people it's all the additional things that go alongside the IVF that help.

We tried for 10 years before we had IVF (all investigations came back fine) and I think a large proportion of why we were successful with the IVF was all the supplements and additional lifestyle changes. Although we didn't have any issues identified, hubby was told to take various vitamins, I was given proxeed, plus a ridiculously high dose of vitamin d, then there was no alcohol and a much better diet for both of us. How much vitamin d are you taking? I think I was put on 50ug a day.

I've heard good things about DHEA but didn't take it myself. It's something that you can just buy yourself and I don't think it's really expensive.

These changes might improve your results enough to qualify for IVF. Do you know how many cycles you'd get in your area anyway, and how long do you have to have been trying? In my area it's at least 2 years so you wouldn't be eligible yet anyway, but I know this is one of those things that varies between areas.

Sorry for so many questions!

Rach2585 profile image
Rach2585 in reply toCyantist

I know Katy's, I was shocked myself when I realised my amh should be around 14ish for my age group. My clinician tells me a lot of women put off having children until thirty and have established careers which is why there has been an increase in fertility issues in the UK and Europe. I am annoyed to think that women are not advised of this in their early twenties to ensure they make a decision as to whether or not they want the test before choosing to leave it till, in their eyes, too late. Surely the cost of such blood test is minimal and people would have the option. I'm pretty sure there would not be as many people leaving it until 30s but it's not widely advertised!

I agree wth you Cyantist. I'm in a catch twenty two because if I put it off then I run the risk of losing all eggs entirely whereas if I have another amh it could have a different reading - something I am going to ask about when I go back. She spoke to me about donor eggs and the likes but if I'm honest I don't really want to go down that route. I know lots of women have done and with great successes but just don't think it would be right for me. I'm just wondering why nothing was said about clomid when she gave me the amh result. Do either of you know if I could still have this regardless of my amh or does this qualify as ivf treatment only I was lead to believe that clomid was something that could be tried (before she found that my amh was too low) without applying for ivf funding. It seems strange that she didn't mention this when I got the result of the bloods? Xx

katya38 profile image
katya38

Hi Rachel I can really sympathise. I've been through a failed icsi. I thought my amh was 4.8. That was when I was 36 by the time I eventually had the ivf and was 38 it had dropped to 1.6. Couldn't believe it. So think ovarian egg reserves can drop so fast. It is scary. I was told after that donor eggs were our only option. So your levels are very low I'm afraid. Sorry just wish someone had told me quite how low mine were. Didn't find out how low until after treatment failed. I only got 1 egg and I was on highest possible dosage. There are things you can do that may help tho bit I'm not sure how much. Lots of people take dhea to help egg levels and the book it starts with the egg is meant to be very good. I'm a teacher too so can sympathise xxx

Rach2585 profile image
Rach2585

Thanks so much for both getting back to me, I really appreciate it. I am currently taking 25ug of vitamin d, Cyantist. I didn't know that you could buy dhea over the counter but think I'll wait to buy any until after I have my next appointment. It does say that she should be exercised with precaution whereas the vitamin d is ok to take with out consulting. You have to have been trying for at least a year before you get referred and as far as I know you are eligible for three rounds if you don't have any children. She's already told me that I would only be eligible for one, if my fsh comes back within range. If not, then I won't be entitled to any.

Katya38, she told me that if my fsh comes back within a decent range, then I could choose to use my own eggs or a donor but I'd only be eligible for one or the other as they would only find me for one course, given the low rate of amh. I'll have a look at the book and then ask about the dhea next time I go.

Thanks so much for the advice, both of you. It's just really disheartening isn't it? Xx

katya38 profile image
katya38 in reply toRach2585

It's pretty awful. We re now about to start the adoption process. I am amazed you're so low you're only 31. I was upset too my amh wasn't checked before treatment as I was so shocked when I found put how bad results were xx

Cyantist profile image
Cyantist

It is really frustrating. It's good your area gives so much funding, but I know that doesn't help if they will only let you have maximum one. Hopefully your fsh will at least be in normal range.

Would delaying things a couple of months be a possibility and having the AMH retested? AMH can vary a lot (mine was measured as 4.7 and 2 months later they retested it and it was 10.7 and that was before taking any supplements or anything) and if a higher measurement meant you'd get another 2 cycles it would be worth it. But then if the value doesn't go up you've wasted time. This whole infertility thing is just full of difficult decisions.

One thing though, even if your AMH is really low that's only an indication of egg reserve, not egg quality and as you're young the quality will hopefully be really good. There's lots of people who have has success with levels lower than yours, so it's not really fair that they won't provide funding based just on that

Rach2585 profile image
Rach2585 in reply toCyantist

I know Katya, I was shocked myself when I realised my amh should be around 14ish for my age group. My clinician tells me a lot of women put off having children until thirty and have established careers which is why there has been an increase in fertility issues in the UK and Europe. I am annoyed to think that women are not advised of this in their early twenties to ensure they make a decision as to whether or not they want the test before choosing to leave it till, in their eyes, too late. Surely the cost of such blood test is minimal and people would have the option. I'm pretty sure there would not be as many people leaving it until 30s but it's not widely advertised!

I agree wth you Cyantist. I'm in a catch twenty two because if I put it off then I run the risk of losing all eggs entirely whereas if I have another amh it could have a different reading - something I am going to ask about when I go back. She spoke to me about donor eggs and the likes but if I'm honest I don't really want to go down that route. I know lots of women have done and with great successes but just don't think it would be right for me. I'm just wondering why nothing was said about clomid when she gave me the amh result. Do either of you know if I could still have this regardless of my amh or does this qualify as ivf treatment only I was lead to believe that clomid was something that could be tried (before she found that my amh was too low) without applying for ivf funding. It seems strange that she didn't mention this when I got the result of the bloods? Xx

katya38 profile image
katya38 in reply toRach2585

I'm afraid I don't really know anything about clomid it was never offered to me. I agree with you Rachel I strongly believe it should be more widely known that women are at great risk of not having children by leaving it into their 30s. I wish I'd known but didn't meet my husband until 31. We were going to go with donor eggs but I was never 100 percent happy. It just wasn't right for us. And still no guarantee of success with risk of loosing all our life savings. I feel like a weights been lifted since we were approved to start adoption. Good luck xx

Rach2585 profile image
Rach2585 in reply tokatya38

Wishing you the best of luck for the adoption xx

KittyK profile image
KittyK

Hi my dear. All.i know is that I don't have periods/ovulate and since NHS don't fund IVF in my area I was only offered clomid to force me to ovulate. I unfortunately was immune to it and didn't respond but I swear clomid is only if you don't have a cycle. Hope that helps and good luck! Xx

KittyK profile image
KittyK in reply toKittyK

I don't know a lot about what's offered where you are or what's suitable for you but if you're ovulating and your husband has good sperm can you not try IUI first? Maybe ask them about that if you can. It's cheaper and less invasive than IVF but obviously may not suit everyone so have to check first xx

Rach2585 profile image
Rach2585 in reply toKittyK

Thanks for getting back to me. I haven't really discussed IUI but it's something that I will ask the next time I see her so thanks for letting me know x

Orla9298 profile image
Orla9298

Hi lovely,

Well, I can certainly relate to your post!!!! A lot will now depend on your fsh result. I was in a similar situation and my fsh result came back BAD after having amh of 2.3, my fsh was 22.5 which is terrible!!

Please don't lose hope as from everything I have read age is still on your side (and mine!). I'm now starting ivf on 2nd Feb after being in the awful limbo you describe but I let it go on for too long from referral in march 2016, didn't get seen until June, then I've been fighting and retesting my fsh and amh ever since trying (and failing) to get in nhs boundaries.

I have massIvely improved my fsh but decided I can't wait any longer in case my fertility declines. I got it down to 9.8 and they want lower than 8.7. I've been seeing a medical herbalist who has brought my fsh down using vitex. The lower it is the better you will respond to ivf.

You're right you can take a lot of supplements to help yourself - I highly recommend buying the book "it starts with the egg" asap as it tells you all about what you can do to help yourself. I'm taking dhea but I wasn't comfortable abou doing so until I had read the dhea section of this book.

I know just how you are feeling, I have even ended up off work with anxiety, it's been the long process that hasn't helped me.

If you need to talk feel free to get in touch and good luck. It's so hard to stay strong xx

Rach2585 profile image
Rach2585 in reply toOrla9298

Thanks for replying. Someone else also mentioned the book so I'm definitely going to buy to see what else I can be doing. It is frustrating and I suppose now I just have to wait to get my fsh and hope for the best. If not, it's back to the drawing board. That said, I do have a lot of questions I want to ask when I go back. I just didn't ask a thing when she told me about the amh level and the implications of it. I just broke down and wanted to get out of there. Stupid really because now I feel like I could be doing things to help boost certain levels and don't have a clue because I didn't bother to ask. I'm just thankful that I have boards like this whereby I can read up on advice that others give. Work is stressful, given the job but I think it's also a blessing because it does take my mind of things if only for a few hours. I suppose I've just got to keep positive until I go back and know more. Please keep me informed of what happens with you because it seems you are just that bit further ahead and I'll know what to expect. I think half the time it's the limbo, like you said, that you are left in which makes you feel so deflated xx

Cyantist profile image
Cyantist

I was also told there was no point in clomid if you're already ovulating. If you're short of eggs, then giving you something to make you release more is probably going to be counter productive. If things hadn't worked out for us I don't think I'd have gone down the donor egg or sperm route at all either. Though it's amazing the things you say you'd never do, that when it comes to it you end up doing so you can have a child!

Regarding age - I've seen more people talking recently about not leaving it too late and there was loads of backlash from people complaining that you can't plan when you meet the person you want to have children with, and that is happening later and later these days. But then we started TTC at 24 so being young made no difference to us.

Rach2585 profile image
Rach2585 in reply toCyantist

I know what you mean. I just think it's madness really that you go on the pill from a young age to ensure that you have a minimal possibility to get pregnant for the reasons you mention above, only to be told that it's seems to appear too late. I just think the option should be there for women to find out at an earlier stage so as it saves a lot of heartache when getting to a later stage in life and being told there is minimal chance xxx

mannamay profile image
mannamay

Hi hun! I'm so sorry it happened to you...I faced this amh problem but the reason was simply my age..I can imagine how do you feel with all this. with my 0.78 Iit was a bit stupid to even try OE IVF but I did it and regret I didn't start straight with DE then I probably could be a mother of 2 kids now. Hope your fsh will be ok! wish you all the best! x

Rach2585 profile image
Rach2585 in reply tomannamay

Thanks so much for replying and it is terribly frustrating. I suppose I just have to play the waiting game now and hope that the fsh comes back normal. If not, I don't know what line to go down next. Wishing you the best of luck with the rest of your journey xx

mannamay profile image
mannamay in reply toRach2585

yeah it is ant the waiting game must be exhausting, anyways even if it's not perfect you have other ways and it means a lot. thank you for kind words but my journey is over it's just permanent joy and happiness of being a mother. don't forget to smile hon x

Marylyn profile image
Marylyn

RACH ask your dr to check your vitamin B12,folate ,iron ferritin ,vitamin D .I had a success story of a client who tried 4 yrs to achieve IVF & hormones.I asked to check her Vit d & b12 .4 mths later with b12 methyl sublingual spray she achieved the much wanted pregnancy a little boy nine months later.i am telling you this as vitamin b12 & low folate can cause a lot of infertility.Here in Aussie Drs know nothing about Vitamin deficiency or their symptoms.The OCP ,hormones, antiacids,antidepressants,steroids.nitrous oxide all deplete Vit b12 Drs won't tell you this.Good luck Low folate & Vit b12 in men can be a problem too with infertility.

Rach2585 profile image
Rach2585 in reply toMarylyn

Thanks so much for replying and for the advice. I'll look into it the next time I am there. I have about 30 questions I now want to ask her so behopes there is a positive out them for me. It's refreshing to hear all the stories about successful journeys even people have been told that there is minimal to no hope. I only hope that I too can achieve something similar xxx

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