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High FSH, Miscarriages and back to square one - just want to cry

(16 Posts)
CakeWouldBeNice Sun 26-Jul-15 11:21:25

I have just had my second miscarriage of the year. The first was a mmc at 13 weeks (in February) and the second I miscarried at 9 weeks. The bleeding has finished and I've had a negative pregnancy test so I know we can start ttc again now.

In between the two miscarriages My GP did some blood test and found that I have an FSH level of 17 (day 3 - in April). A month later it came back as 22 (in May). The GP told us that she was surprised we had managed to get pregnant and that if we did get pregnant again the chances of miscarriage were greatly increased because of poor egg quality. She said that our best bet of a successful pregnancy was IVF with donor eggs but that the NHS couldn't fund this. We looked into the costs of this and there is no way in hell we could afford it. Then I found out I was pregnant again. Then I miscarried.

I feel stuck in a cycle with no real way out. We are desperate for a baby but can't afford IVF. And feel like if we manage to get pregnant again naturally we are just going to be stuck having miscarriage after miscarriage. I'm currently taking so many supplements to try to improve egg quality but we can't really afford these either and I have no idea how we are going to be able to manage to take them in the long term.

I just feel completely lost and don't know what to do. Does anyone have any advice?

SesameSparkle Mon 27-Jul-15 21:20:41

Hi Cake
I'm sorry for your loss. You may find further support and advice in relation to your miscarriages on the miscarriage threads in this forum. Do take the time that you need to grieve for your loss. You might ask your GP whether it is possible to be referred for further fertility or miscarriage investigations. It is possible for women with higher FSH levels to conceive naturally and go on to have successful pregnancies. Only you will know whether this is hope enough when there is also the risk of further pain and loss. Best of luck to you.

Lauren83 Mon 27-Jul-15 21:24:52

Hello

Sorry for your loss, I had a MMC at 8.5 weeks in May after ivf number 4, we moved to donor eggs for cycles 3 and 4 as my FSH was 23, we have been trying 7.5 years. Most areas fund donor ivf. Do you know you definitely won't get funding?

CakeWouldBeNice Tue 28-Jul-15 06:00:33

lauren My GP told me that the NHS won't fund IVF with my own eggs with an FSH level that high and that they never fund IVF with donor eggs. However when I was in hospital recently with the miscarriage the doctors there said that one or two other (minor) things she had said had been wrong so maybe that was too? How would I go about finding out.

sesamesparkle We're definitely going to carry on - at least for now. It just feels so much like a game of roulette with the odds stacked against us, and I really wish I could find something - anything - that would increase the odds even a little bit. confused

Lauren83 Tue 28-Jul-15 15:41:54

Yeah mine told me incorrectly I had to be trying 2 years when Infact if you had a known issue like endo and no tubes which I had they would refer you after 6-12 so they told me wrong. The FSH bit is correct mine only fund own egg if it's under 10. Call your CCG today, ask to speak with who deals with assisted conception funding, ask they email you the criteria. If it does fund donor eggs and your nhs clinic don't have donors you can ask to be moved to a clinic that does, that's what I did.

CakeWouldBeNice Tue 28-Jul-15 16:09:48

Lauren thank you so so much. flowers

Lauren83 Tue 28-Jul-15 16:17:02

No probs, for the transfer my gp contacted the CCG 'effective use of resources' dept to request an individual transfer of funding from St Mary's to Care Manchester, you can only go to a clinic where they have a contract already but most CCGs use a few. If they def won't fund donor look into what areas near you do, maybe your parents address for eg? Or friends? When it's 9k a go you need to do what you can

CakeWouldBeNice Wed 29-Jul-15 10:09:54

We would also be Care Manchester.

Chattycat78 Wed 29-Jul-15 18:13:27

Just to throw another angle into the mix, it's possible that the miscarriages are just bad luck or there is another reason for them which is not linked to the high fsh. I've done quite a lot of to research into high fsh (mine was 12) and doctors assume you have bad quality eggs but the fsh test does not show this- all it shows is that u have less eggs so they assume they are bad quality. Not necessarily the case though- egg quality is more linked to age than anything else. I did ivf last year due to my high fsh- there was only 1 embryo but it was excellent quality and is now my 6 month old ds- so clearly not all of my eggs are bad. There are also tonnes of other similar stories online- too many for it to be a coincidence in my opinion.

Chattycat78 Wed 29-Jul-15 18:17:04

Also just to say I'm really sorry for your losses. I would be tempted to get sone testing done if u think you're suffering from repeated mc (rather than just assume its to do with the fsh).

Lauren83 Wed 29-Jul-15 18:36:24

Cake what's your CCG? Mine was Oldham and was Tameside and Glossop before that. I'm having recurrent MC tests at St Mary's. For me with my high FSH and low AMH I had 5-8% chance of success but with donor it was 60% so easy decision for me. Are you at St Mary's now? As you say they won't treat ladies with an FSH over 10

CakeWouldBeNice Wed 29-Jul-15 19:16:14

Lauren My CCG is North Lancashire.

I'm not anywhere really now! My GP runs their own fertility clinic in house and did my FSH levels through that, but the second time she did them I actually got pregnant and have just miscarried. The usual IVF provider for this CCG is Care Manchester. My GP said they couldn't refer me as they don't pay for IVF for anyone with an FSH over 10 and they don't pay for donor egg IVF.

However she also said that they couldn't pay the AMH test and the follicle scan, but I rang Care Manchester and they said this was wrong. But then I found out I was pregnant so everything went on hold until after the miscarriage.

When I had the miscarriage the consultant at the hospital (who I really trust - I've had two miscarriages under him this year and he has been fab) asked who had done my FSH test and then "Hmmmmmm THEM" hmm and implied he had heard of other people having issues with my GP-led fertility clinic. So he offered to see me instead and I'm seeing him in three weeks so hopefully we should get some things cleared up then.

CakeWouldBeNice Wed 29-Jul-15 19:19:28

ChattyCat - I'm 38. And with an FSH of 22 they are pretty convinced that it's likely to be an egg quality issue. But the hospital consultant isn't ruling anything out. They supplemented progesterone in the last pregnancy in a bid to help prevent miscarriage.

Do you know what other things it could possibly causing miscarriages?

Lauren83 Wed 29-Jul-15 19:32:57

What's the GP led clinic? I run the northwest boards on a fertility forum, and the donor eggs and POF ones too and I can't think where it is? Ladies with high FSH can have a successful pregnancy yes but you are as you know at an increased risk of loss due to your FSH and age, if I had loads of money I would of kept trying own egg, I know I could of gone for an unmedicated natural cycle but is low reserve ladies usually need an aggressive stim and you can't do that with a high FSH. The recurrent MC tests are same as level one immunes. I had them and paid £1,200 for Chicago tests at care to check my NK cells as last cycle I asked for gestone, Pred and clexane and got my first BFP and I have endo so suspected I would have high nk cells and I do, so having intralipids now too. Did you have progesterone in pessarie form? I always bled before OTD on all my ivfs and had a very short luteal phase naturally so I had a feeling the pessaries werent enough that's why I asked for PIO (prog in oil injections) care have been amazing and agreed to everything I wanted to try x

Lauren83 Wed 29-Jul-15 19:35:19

To be honest if your losses were earlier I would of suspected a prog issue or Immunes issues even Hydrosalpinx if you were having chemical pregnancies but to get as far as you did I would be swaying towards a genetic issue? I can't remember the exact % but read something recently at each age what % of embryos are genetically abnormal and it was very high x

CakeWouldBeNice Wed 29-Jul-15 19:53:27

I had them and paid £1,200 for Chicago tests at care to check my NK cells as last cycle I asked for gestone, Pred and clexane and got my first BFP and I have endo so suspected I would have high nk cells and I do, so having intralipids now too.

I don't know what any of those things are.

The GP clinic seems a bit ad hoc to be honest. I'm not entirely convinced they know what they are doing. The do basic level tests through the clinic and then refer to Care for anything else. But the GP says I don't meet the criteria for the referral to Care, though I'm not sure she's right

They think it's a genetic issue too given my age and my FSH.

The progesterone was pessaries.

The problem is we have no money for anything. £1200 is more than we earn in a month and we have no savings. So anything not on the NHS probably isn't going to happen sad

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