Next consultation after bad news - help with questions please!

[Orla9298]

Hello all,

I'm sorry for the long post below, but I figure there is such a range and wealth of experience on here that you could all help me workin out what questions to ask at my next appointment which is next week.

We got really bad news at my final results appointment, I'm 32 and as well as low AMH of 2.3 I have high FSH of 22.5 (NHS won't consider you for IVF if your AMH below 6 or FSH above 10. Even my consultant wasn't expecting such high FSH results and seemed genuinely surprised and saddened for me. Charts always have a good temp rise after ovulation, ovulation sticks do give me an ovulation result, and my day 21 progesterone test was high enough to suggest ovulation had occurred too! Despite his he said with my bad results I'm unlikely to be ovulating.

He said I'm definitely not eligible for NHS IVF, as it is so unlikely to work, because at levels that high I'm unlikely to have ANY response to even the highest doses of drugs. At that particular appointment we said we might still try privately, and he said he understood our need to do so, but sort of gently said its not likely I would get any eggs. My scan in investigations did show 4 follicles one side and 5 the other. We have been TTC for 14 months with very well timed BD. Husband is fine it's all me.

So... He said he would give us another appointment in 2 weeks for us to go away and think and come back with all our questions. He suggested donor eggs are going to be our only chance

I'm lost to what to ask. What would you all ask? I want to exhaust all questioning that might be useful to me. Is it worth asking about clomid? Why on earth do I look like ovulating if he says I'm probably not? I've read about testing hormones at different points in the cycle, not just day 3, to get a better picture of your cycle, should I do this?

Thanks all xxx

[City74]

Hi Orla. I'm sorry to read about your results. It must be a really hard time for you and no doubt you have loads of questions.

There are loads of ladies on here who will be able to advise you what to ask and about different possibilities. I just wanted to wish you all the best.

[anna0908]

Hi. From my experience I would say there is hope in all sorts of ways. My amh is better than yours at 5.1 but follicle count was worse (4) and age not on my side (37 when treatment started). Fsh can vary a lot between cycles, and amh is the more consistent value. Our consultant said age was still a factor on success rates and you have that on your side. You don't really know how you will respond til you try and the results can only be a guide to treatment. We've had 2 cycles and got 5/6 eggs each time. Last cycle was better with 4 turning into blastocysts. We were facing deciding on donor eggs after none of our embryos on the first cycle got to blastocyst, and with a bit of time I felt ok about that route. However, due to a better response 2nd time, we are hoping we still have a chance with my eggs. It depends on what you feel you can realistically afford, but we wanted to give my eggs a go first to see if it might work. I have seen success with own eggs with numbers worse than yours, but I think it's worth thinking about the donor egg route alongside to give yourself time to feel ok with this. This is a tough journey but there are always options. I still feel hopeful I can get that bfp xx

[Orla9298 in reply to anna0908]

Thank you for your positive message, I know, I keep finding it somewhere in me that it all might work. My consultant was SO negative but not in a mean way, just like he didn't want me to have false hopes. We have a private consultation also 2 weeks after this NHS follow up. We aren't well off, but paying for a few cycles isn't out of or reach. The NHS consultant has offered to re-test my AMH and FSH in 12 weeks, I might retest privately before then. It's the FSH that was a real nail in the coffin he sort of suggested. And from my own research and FSH of over 20 means a less than 1% chance with IVF. How was yours and how much does it fluctuate?

My sister has also offered to be an egg donor for me , although she doesn't have kids yet and she and her husband are trying so no idea how it would all work. The thought of that is quite easy for me to accept, as we are close and like twins despite me being 4 years older. An anonymous donor a little more strange but definitely ok too.

Thanks for your lovely message I'm so hopeful for you and us both xx

[anna0908]

I think it's definitely worth a second opinion from a private consultant. I felt completely written of by the nhs and refused funding. Our private consultant has been really good - not giving us false hope but made us feel we had a chance. My fsh wasn't too bad at 11 but my follicle count was so low that I feared the worst. But i have seen fsh from others swing from the 20's down to under 10 in another cycle. I felt I had to give a go with my own eggs so that I didn't think what if. We then based our decision on the next cycle on how the first had gone. I also think the private consultants have more experience dealing with the poorer responders and will make the protocol such that they will get the best response for your circumstances. We haven't got lots of money and have set a 3 cycle maximum. What will be will be, but are soon to have 2 frozen blastocysts transferred from my 2nd cycle - that was way beyond expectation for my 'numbers'. I think one of the hardest things is how much waiting there is! I have had to learn patience like never before! There is a forum on fertilty friends which has a board specifically for high fsh/low amh, and might give you some ideas of people who have had success or gone on to donor eggs. I found it really useful to get realistic expectations. Xx

[Orla9298 in reply to anna0908]

Thank you Anna, I think of all posts you've given me the most hope. I agree about a private opinion, I went to an open day and the consultant listened properly to what I raised as a concern, things that the NHS consultant pushed aside.

I totally agree it's the waiting time that is a killer, I'm naturally an impatient person, waiting weeks for a follow up feels insane to me when you just want to get moving! But on reflection it probably gives time for things to sink in.

Thanks for letting me know about the specific forum too ill take a look.

I hope to see some positive news from you and wish you all the luck in the world xx

[DianeArnold Partner Nurse Fertility Network UK]

Hi Orla9298. Just wondered whether you would like me to email you a list of questions for you to look through before you go back. it's too long to add here, but if you email me in confidence to [e-mail] I will send it to you. Good luck! Diane

[Esmes2013]

I can relate to this my AMH is 2.7 but my consultant disregards my low score because I have got pregnant 5 times naturally in the past year. The sad news is all resulted in early losses and I am now booked in for nk killer cell test. My FSH was 10.6 and LH was 6.5 after taking dhea for a month my FSH went down to 8 and my LH to 3.4 so do some research on it there is hope for us low amh ladies I am 41 now and even my NHS consultant is thinking I have nk cells as I can't get pregnant now so we shall see. Don't give up hope I've stalked loads of forums about low amh and high FSH and ladies have some amazing positive stories X