IVF with low AFC AMH - advise and recommendations please

[GreenandBlack22]

I’m 38 with low AFC, low AMH and high FSH. TTC for 4 years and have history of 1st trimester miscarriage in 2020.
In April my results were AFC: 3, AMH: 2.9, FSH: 9.7 and which has worsened further in Oct AFC: 2, AMH: 0.7 and FSH: 14.9. In July we tried first round of IVF at Guy’s hospital and had to cancel the cycle mid-way as I was not responding well and had only one follicle. Since then, my cycle has been messed up and we’ve not been able to have another go at IVF on NHS.

We’ve not had a great experience at Guy’s hospital and considering if we should go private for another go at IVF before we consider using an egg donor. The whole process has been dragged for too long and having a toll on my mental health. We have funds saved for couple of rounds of IVF privately, but not feeling positive if there is any hope given my diminishing reports.

Looking for advise on if its worth giving another shot at IVF privately using my own or if we should go with an egg donor. Also, any recommendations for clinics in London that have good results with low ovarian reserve will be greatly appreciated. I’ve seen a few posts that have suggested Create for low ovarian reserve, and wondering if it will be worth it to have an initial consultation with them. Any idea how much private clinics charge for an initial consultations in London?

Thank you!

Hi there, I could sort of written this myself so I wanted to write back to you. I am 42. AMH 1.6 AFC in Oct was 2, in Nov was 3, FSH was 13.1. I also had a cycle cancelled with Guys on Monday (self funded) due to only one follicle. They left me sat next the elevator crying whilst the finance lady worked out my refund..holding the Emotional Support Leaflet with Dr Wright written on it (the DE "expert"). Enough said. It was awful. I had already had a scan/consultation with Create St Pauls in October, but I found the follow up admin/emails/contact with patient coordinator very chaotic and poor. I went with Guys at the last min as my friend had been there, all be it as an NHS patient when she was 38. My experience was awful and I would not recommend it to anyone. The same day I got kicked out of Guys with my leaflet, I walked round to St Pauls and (gently, non-confrontational) complained that my experience had been poor RE admin after my scan and consultation (think it was about £200 for both, can't actually remember) and they could not have been more helpful. Faultless. I was seen by a member of their team after waiting for 10mins, then the doctor I had my consultation with in October met me again on zoom the following day and went back over the treatment plan. I am now signed up with them for a gentle modified multi-3 cycle package. I will stim Dec, Jan and Feb. Freeze anything I can in Dec and Jan. They will collect any eggs I have (even just one follicle) and ICSI the egg at each retrieval. Fresh transfer in Feb (if there is something to transfer). Then go back to the frozen (if there are any). My mantra - One Good Egg.

So, I am writing to say, it is not impossible, although I have no baby to say this will work. I wanted to share my plan. Our numbers are low, but that does not mean there is not one good egg in there (the consultant also said that). It is just harder to find, will likely cost more, emotionally draining, and might might might not work. But it might work??). And I can look back on this stage of my life and say I tried everything to conceive my own child before I looked at other options.
My cycle was/is regular going into this. It wasn't though - and for the past 18 months I have had acupuncture and drank chinese tea. This has really sorted this problem out. Now 28 days 3 days bleed fresh good colour/flow. I am taking all the vits from It Starts With an Egg book. Eat really healthy and 2 months ago started buying all of my veg/fruit organic. No alcohol at all this year and 6 months ago completely stopped caffeine. Spot on with my BMI and exercise a few times a week.
I am not giving up, and I wish you all the best with whatever you decide is right for you x

Have a look into duo stim. My amh was 2.1. Did it last year with great results. Currently 33 weeks pregnant.

It is very expensive just to warn you xx

@onewishplease Thank you for taking the time to reply. It sounds like we're both on a similar path. Would you mind sharing roughly how much it cost with Create for 3 cycles please? Also did you consider duo stimulation?
I also read that taking DHEA and growth harmones help, but NHS don't do that.

I had scan today and only had one follicle, and very conflicted if it's worth trying privately to try a milder approach. Mainly thinking of impact on mental health dragging out the process and finances.

Wishing you the very best for your cycles and fingers and toes crossed for you! x

Thanks @CR7 I read about duo stimulation but unsure if that will have any effect on me given I've had only one or two follicles recently. Would you mind sharing what your AFC was for duo stim please? I spoke to the NHS Dr about it today and she dismissed that NHS don't do it coz it's not proven to work.

Sending lots of positive vibes for the last leg of your pregnancy x

@GreenandBlack22 I don't actually know my afc from last year I'm so sorry. I did nhs one round and got one egg which they froze on day one. God knows why. Went private with care, did duo stim and got 13! Seven made it to blast and 3 made it through pgta.

Nhs do not do it, she's correct. I hadn't heard of it at the time but in was the perfect candidate for it. Short for time (was 41) and amh dropping drastically. Went from 4.2 to 2.1 in six months

The benefit for me was any small
Follicles I did have that didn't make the grade from collection one, were re stimulated during the second round so I got more eggs with the second part x

I have ordered a DHEA test through Welza, it arrived today (£42 inc delivery) and I already have dhea that I got through iherb. If I come back low when I send away next week I will start taking them. It takes 3 months but I don’t have time to wait. I also ordered the melatonin which I wasn’t taking (recommended in ISWAE book) The quote from Create is an eye watering £17500 for everything I listed above inc drugs. You can pay min 20% then 12 monthly payments interest free for the remainder.@GreenandBlack22
Hi @CR7 Please could you say what hospital you used? This cycle (this month) I had 5 follicles on day 4. (After 10 days stims) Day 14 my right ovary was empty, my left had 3 - 10,14,15mm. Day 17 these follicles were 9,11 and 17.2. So Guys cancelled.
I didn’t get any decent feedback on why they had shrunk, over the weekend and only one grown, when I continued to stim for another 2 days. The nurse said maybe the sonography got the measurements wrong on the Friday..and blamed my low AMH.
Does this sound familiar to your situation?
I hadn’t heard of duostim despite hundreds of hours research on frickin MN, I just hadn’t seen anyone mention it before. Maybe this would be better??????

@onewishplease I used care in Manchester. I'm also had a lot of problems with getting my lining thick enough

@CR7 hi, thanks for this info. Is is possible to look back at old notes, it would be so unbelievably helpful to know how you got from 1 egg with the NHS, to 13 with the duostim - that is obviously a fantastic result and to hear more would be so helpful.

@onewishplease I gave my entire NHS file to Care after I did a subject access request and have not asked for it back as yet. I'm so sorry I can't help further with the AFC number x

@onewishplease Thanks for the info. Did Create suggest you take these supplements? I'm taking the basic ones but not DHEA or Melatonin. I have booked an appointment with Create next week, and looking into if I should have consultations with any other clinic.

No they didn’t. I know it can do more harm than good if you take when you don’t need but decided to test, and take if I am low. I think I am low, as I have a lot of the symptoms. RE the melatonin. I read some really positive stuff on it and I don’t think it does any harm. Having just had my first cycle, and feeling quite low (because of all of this) a lot of the time, my sleep hasn’t been great. So it should help with that, I was thinking sleep helps follicles grow?
I should also add that there is a £1200 “discount” if I pay deposit in November which takes it down to £16,300.
We talked loads about Duostim since it was mentioned on here, but have decided to stick with this plan, and go for first collection next month.
Can you have acupuncture and tea whilst you wait for consult and see if it brings your cycle back on track?

Ok, that’s for the info x