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IVF ICSI Funding/Eligibility- advice please.

(25 Posts)
JT2013 Fri 05-Jul-13 10:03:08

Hi to everyone

Sorry to post for help straight after joining but I'm so confused about NHS funding for IVF. I didn't even know you had to be trying for 3 years until last month! The fact that the HFEA and PCT criteria do not correlate doesn't help.
I am 39, neither me or my partner have children. His SA came back very low (very very few sperm seen, but what was there appeared to be normal) and has being repeated. Results are due on Monday.
I on the other hand have low AMH (4.0 pmol/L) and slightly raised FSH so not looking good there either!
What I'd like to know is if my partner's repeat SA comes back just as low, will I get automatic funding or will my low AMH/high FSH cancel out my eligibilty? I live in East Sussex so I would be really grateful if anyone has any experience of treatment here.
Thanks very much for reading!

lozster Fri 05-Jul-13 13:07:03

Hi there - best way to get answers is to ring your PCT and ask them. Criteria vary from PCT to PCT in terms of who is eligible and for what. Each PCT has a PAL (patient liaison) service who will help you.

For what it is worth - I don't think you necessarily have to have been trying for 3 years. this would be pretty silly if you knew you have blocked tubes for example! AMH is not an NHS paid for test so it is unlikely to be used to confer eligibility automatically by the PCT. I can't recall the cut off points for AMH, but mine was v. low (sub-fertile) and I still got 3-4 eggs each time, one of which went to blasto and is now 36 weeks in me. Anyhow - best not to speculate here - call the PCT and ask them to take you through their criteria as that is what will govern the treatment that you get.

All the best

heartj Fri 05-Jul-13 17:23:07

Hi, you haven't said where you are having the tests performed that you have had done (gp or by gynae derpartment at hospital) but I would suggest that you push everything forward as quick as you can.
The upper age limit for fertility treatment on the NHS tends to generally be 39, normally need to have been referred to the fertility clininc and then actually commence the treatment by 39 and 6 months old. The PCT's were abolished in March this year and replaced by clinical commissioning groups so you need to contact them to find out the criteria for where you live. You do not normally have to wait 3 years if you have a know cause of which male factor would be classed if it is low enough. It is definately worth speaking to a consultant at your local hospital to check the cut off points as you would not want to miss out on a free go for the sake of a few weeks or something. The NICE guidlines are that it should be offered for up to age 42 but one of those criteria is that you have to have a reasonable AMH level but I do not know if any of the commissioning policies have incorporated those later ages. i know my area certainly hasn't.
I have found that you need to chase, chase and chase it bit more to get things moving at an anywhere near reasonable rate when trying to get treatment on the NHS. You also have to have had blood tests for all sorts before they can refer you so I'd find out the criteria and all the things they need done to beable to make the referral and start ticking them off, even if it means getting a few tests done privately to get the results quickly.
Hope this helps, I am by no means of an expert but have found the whole process of getting referred so slow I would urge anyone starting out to get all the knowledge they can and then push, push , push!!!

Hoophopes Fri 05-Jul-13 21:42:12

Hi, each area has different criteria so agree you need to phone up to find out your area. Eg where I live you get one free cycle of Ivf/ICSI ( that includes before it clomped and a set number of IUI attempts before IVF. Other areas near us allow two. Age is a criteria. The rules here last year ( do not know if changed) for eg were:
- female aged 23-39
- neither partner can have a child for free NHS treatment
- BMI has to be between 19 and 30
- have to pass a welfare check
- neither partner to smoke
- either have a medical reason for needing Ivf or three years of trying ( if no diagnosed medical reason)

As each area varies worth finding out ASAP due to your age.

CaipirinhasAllRound Fri 05-Jul-13 23:07:33

I was able to find out about my PCT on the internet. I'm East Berks and unless there is a diagnosed reason for infertility - which there isn't for us - here you have to have been trying for 3 years and be under 35 (i know...) to get 1 funded go at IVF. ICSI was never discussed for us so not sure about that

JT2013 Sat 06-Jul-13 17:57:07

Thank you so much everyone.
Lozster- thanks for the reassurance re eggs and congratulations! Unfortunately for unexplained fertility the wait is 3 years. The consultant explained it as most women will become pregnant within 3 years of trying so you have to be trying for at least that long to be referred. If however, there is a problem- low sperm count, blocked tubes, etc, referral can take place immediately. It's ridiculous.
Heartj- I had my first NHS gynae appointment at Pembury hospital on 20.5.13, which was a GP referral. Does that mean I'm in the system? Had an ultrasound which was normal and showed ovulation that month. Days 3/21 tests, LH, etc and partner's SA repeated. Results due on Thursday when I'll have HyCoSy and gynae consultant appointment. The AMH test was done privately at Benenden.
I'm worried I've shot myself in the foot-at the last appointment the Dr seemed confident a second low semen analysis would be enough for referral but Benenden have sent a copy of AMH to GP. I'm worried they'll see my measly 4.0 pmol/L and see me as a low responder so not worth the funding.
As you say, I need to stop speculating and phone the CCG or wait for my appointment.
The funding criteria seems to be deliberately complicated. Wouldn't be like this if men had babies.
Thanks again all of you for being so willing too help- I'm a primary school teacher if anyone needs school advice! X

Hoophopes Sat 06-Jul-13 19:58:32

Hope tests go well. You are definitely in the system and sounds like they doing the tests quickly. Took us 13 months from first referral to having repeat SA's, my bloods ( done several times), a HyCsy etc. when we did the Ivf we had an a scan to check how many follicles I had (11) which is what my hospital used not an AMH test. Some private hospitals look at AMH counts etc and do not treat people with lower counts but many do!!

lozster Sat 06-Jul-13 20:16:04

JT - that 3 year criteria is a nonsense. Who's to say how long you have been 'trying' for unless there is some big brother monitoring system in your bedroom checking for sexual activity and/or condom use.

I didn't mention this earlier as I don't want to give you false hope but I am 41 now, treated by the NHS at 40 after one failed nhs full cycle, one failed private full cycle and one failed NHS frozen transfer. You could have knocked me down with a feather when I got a call offering a final nhs full cycle at 40. I was told this was as there had been an unreasonable delay in treating me when I started the process. A couple of years back I did indeed make a complaint about some of my treatment but I had no idea they would offer me this. I feel so lucky and the prejudice against nhs funded IVF angers me a lot.

One thing you could do, and I did before my final cycle, is take DHEA. This is a non-licensed (but not illegal) drug that you need to order from the states (google micronised DHEA). I took this on the recommendation of both my private and NHS consultant. In fact, although I ordered my own, the private consultant had a stash in his filing cabinet. There is some evidence to suggest that this helps conception in older women with low AMH.

I just looked up my AMH - it was 4.27 so close to yours. I always got eggs on a cycle. Don't be discouraged by tales of women who get 18-19 etc - often a good proportion of these are immature and won;t fertilise or develop well. When the NHS offered the final (successful) cycle they did ask me to do another AMH to check it hadn't dropped further. It was then 5.03 so not significantly higher but they were happy to go ahead.

I think what kept me sane in all of this was always having a b plan. My final, on the last cycle, b plan was to go for donor treatment in Cyprus (v. high success rate, anonymity, instant availability and a good choice of matches as my colouring is dark). We were also scoping out adoption routes too. Obviously this may not be for everyone but it's worth thinking more broadly than just the nhs treatment so there is always a chink of light around the corner for you.

Good luck

JT2013 Sat 06-Jul-13 21:36:39

Hoophopes- thank you. 13 months is a nightmare wait. I hope all is well for you now? Fingers crossed that I have follicles there! X

Lozster- what a lovely story, someone is obviously looking after you! My sister had 3 failed private cycles while on the waiting list 8 years ago, my niece was born on the NHS go and 2nd niece from a frozen embryo 3 years later. Your story makes me feel a lot better as you're as close to me in terms of AMH, age, etc. I've heard about DHEA, off to Google it now and order some.
Regarding the 3 years, stupid me didn't realise or I'd have lied to my GP about how long I'd been trying. That's what I've advised my TTC friends to do. Thanks so much for taking the time to reply. I bet you're counting the days till the baby's here! X

JT2013 Wed 10-Jul-13 20:29:42

Hi again

I have a HyCoSy booked tomorrow with a consultant appointment straight after. The trouble is I started my period today and I know the test can't be carried out- I also know there's a 3 month wait for the next one and I'm 40 in January.
In the meantime, my partner's 2nd SA has come back ridiculously low again so the chances of me conceiving natural even if my tubes are fully functional tubes is minute.
Shall I just keep the appointment and play dumb so I get my time with the consultant or let them know in the morning and risk them cancelling? Is a HyCoSy a box that needs to be ticked or will we getva referral on the basis of my partner's very low sperm count?
Thank you so much in advance.

HoopHopes Wed 10-Jul-13 20:49:33

Definitely see the consultant no matter what. They must be used to women having to change Hy appointments due to periods varying on their times. You will need the Hy before you would get NHS treatment such as IUI of IVF I would have thought as they would need to ensure you do not have blocked tubes( if you do they can often be unblocked solving the problem!) but do ask!!

Is your dh taking lots of supplements still, no alcohol, no caffeine etc etc?

Let us know how it goes

JT2013 Wed 10-Jul-13 20:58:13

Hi HoopHopes
Yes, bless him- after our Benenden consultation (a freebie as we have basic cover but it doesn't cover infertility) he'd just had his first abnormal SA. He's been taking Wellman Conception religiously, as well as wheatgrass and also has stopped using his laptop on his lap!
The consultant said 3 months is how long it takes for a proper chance at a turnaround SA but no difference.

HoopHopes Wed 10-Jul-13 21:07:44

My dh took Menevit as our clinic suggested that plus 1000mc ( can't remember unit but high) of vitamin C which amazingly helped motility and numbers over 6 months!

JT2013 Thu 11-Jul-13 07:19:04

Thanks- I've never heard of Menevit, will Google that later!

HoopHopes Thu 11-Jul-13 22:15:24

We had 7 yrs ttc, failed ICSI and 6 months on high dose vit C and Menevit we had a natural bfp(care clinic recommended it as it has all the supplements they recommend for make issues such as lycopine, zinc etc in one tablet!) have to buy from Aus or NZ but the chemist online we used were just like ordering from anywhere and cost inc shipping was not too pricey!! I have 6 immune issues that should prevent natural pregnancy so the dr did not believe us when I told him, sent me for blood tests and saw us himself before theatre to confirm it!! So for me I am a big fan, as dh had so many SA we saw the results improve. Other people may say other things but we followed advice of our fertility clinic. Also had 80% fertilisation rate of my eggs ( just not many eggs) when average was 60-70%)

JT2013 Fri 12-Jul-13 21:27:25

That's excellent.Just goes to show nothing's ever 100% with fertility! Good for you, nice to hear good news, I'm ordering Menevit.
Had some devastating news yesterday-couldn't have hycosy as I was on my period, but the consultant saw us anyway. Lovely man, but had to break the news that my AMH was <4.0, not 4.0 as I was reading it from the slip. Apparently, that's how Glasgow RI report results? He was annoyed as he said there's a massive difference between 4.0 and 0, but not to worry as clinics go by FSH which hopefully was lower than the 14 it'd been previously. If so he could refer us right away due to 2nd low SA. Looked at my most recent FSH result-it was 26.I know no clinic will touch me now. Cried my eyes out, obviously. Haven't stopped since really, partner doesn't know what to do or say to help.
Apart from having to accept I'll never have my biological child, I'm struggling with the idea of being menopausal at 39-because I presume that's what my AMH/FSH means? I have no other symptoms.
Looking at DE options in Spain on Consultant's recommendation.
Sorry to offload!!

lozster Sat 13-Jul-13 00:34:40

Sorry to hear it was bad news for you. I never managed to establish if the AMH score = menopausal - my consultant was always vague on this and suggested not. On the DE my consultant worked with a clinic in northern Cyprus to deliver joint monitoring and treatment ( I established this would be around 10k. He said two interesting things to me 1) that I was 'guaranteed a child' (I took this with a pinch of salt 2) that de in effect stops the clock so the panic of being late 30s ceases - this buys you time to mourn your biological child/decide if this is for you etc

I'd really recommend going on to fertility friends. There is a thread just for de and, if I recall, one for low AMH where you may pick up some info on whether a clinic would treat you with your own eggs.

For what it's worth, getting my first AMH result was one of my low points. I simply went to bed and cried. I was devastated so I know how you feel. Hang on in there.

lozster Sat 13-Jul-13 00:38:05

Also consider the dhea - if you started on that now, you need 3 months to see a difference so you could do this while you make up your mind about next steps. It's not expensive.

JT2013 Sun 14-Jul-13 00:12:43

Hi lozster
Thanks for your support, it's really appreciated. I'm still feeling like a total failure at the moment.
I ordered the DHEA when you mentioned it in your first post, also Menevit male and female-just waiting for them to come so I can get started. The consultant actually recommended them and said he'd test me every month to see if we could get it lowered but to think seriously about DE and gave me some endorsed Spanish clinic details. He worried me when he said he was sending my partner (now fiance-he proposed today, trying to take my mind of it I think!) for tests to look for any chromosomal cause of his low sperm count.
Thanks for the clinic info, I'll have a look at that.
You're so right about the late 30s breathing space- I wouldn't want to be at the school gates when I'm 70 but at least I know I might have a few years t play with now.
I don't know if this happened to you, but I'm finding myself getting really upset and angry about how women are never really told the biological reasons for fertility decline. Also about being fobbed off with "have regular sex" by two doctors when I was 38 and had been trying for a while. I didn't put off motherhood, I just hadn't met the person I wanted to have children with. Had I known about the steep decline after 35, I'd have had some eggs frozen. I'm sure it will pass.
Has your pregnancy been stress free?

lozster Sun 14-Jul-13 04:18:35

Luckily I was taken seriously early on by my gp, I'd been off the pill for years and had been using ovulation kits do was 90% sure I wasn't ovulating. A locum did the old keep trying speech when I was either 37 or 38 but she did also run the bloods and these were picked up by another gp who rang me immediately and referred me on the basis that no egg = no baby. I then had major issues with the fertility clinic though giving me clomid when I should really have gone straight to ivf. Then after all that I found out about AMH so had that done - I know it isn't definitive but its the best option out there so why they were so coy about offering it I don't know.

If its any comfort egg freezing isn't a panacea.
The fertilisation and defrost rates though better than years ago, are not as good as for embryos.

Re fertility education, i wish I had known the range of ages at which ovarian failure can happen and the low chances of conceiving per month even with normal levels of fertility. Or rather i wish my oh had known this as he was way more laid back than me. I also wish I had known quite how long it can take to go through the process of realising you are not getting pregnant, having tests, having multiple treatments etc. I have a comforter in the cot ready to go at the moment that I got free with a bottle of fabric conditioner seven years ago when my little one was a twinkle in my eye. I've thought about putting it on the fire so many times.

There's a lot of prejudice and assumptions made about older mums that makes me cross. Not just in the daily fail but also in real life. My bosses comment to me when I told her I was pregnant was 'that was a late call'. Luckily I was in a good mood and let that one slide though really I should have smothered her with a seven year old comfort blanket!

Pregnancy after ivf is just the same as any pregnancy. I have worked until 35 weeks and been well. I did have a 1:4 downs risk due to age and an abnormal level of one hormone. An amnio came back clear. I don't know how you feel about chromosomal testing, but it is one advantage of de that your odds will be better as the egg is younger. It did take me a while to get my head around de which is why I was freaked to be offered my last nhs normal cycle. However, I have always believed strongly in nurture over nature which I think predisposed me to be open to this route and to adoption too. I think there are two key things that can help you on this journey (sorry thats a bit of an icky expression!) the first is to be open to all routes to parenthood and the second is to be prepared for a long haul.

Good luck!

lozster Sun 14-Jul-13 04:24:10

Sorry, meant to say re: decline after 35 that this is a generalisation. I suspect that mine tipped early 30s. I say this I had some symptoms that in retrospect suggest it to me. AMH is an indicator of the here and now situation but all the studies on this are c

lozster Sun 14-Jul-13 04:25:55

... Studies are cohort not longitudinal so the trajectory of individual change is not known ie you could tip very quickly or slide slowly. I believe a study is currently underway tracking this.

HoopHopes Sun 14-Jul-13 21:51:23

Hi, firstly sorry to hear your news about results. Good to hear you have at least now a dr that is suggesting what can be suggested to improve natural conception whilst weighing up options of assisted fertility.

Second,y congrats on your engagement!!

I know how frustrating it is whilst undergoing tests and choices and options. I wish I had gone private for testing straight away, as 13 months for the NHS to get to point of offering Ivf for me was too long!! Especially when someone else the same age as me at the same hospital had same tests etc and was ready for treatment in 6 months!

JT2013 Thu 18-Jul-13 22:04:03

Thanks lozster and HoopHopes for the replies- sorry for the late response, I've had to finish 32 schoo reports this week. I knew if I logged in I'd be on here for hours...
lozster you should write a book! I'm a primary school teacher and we're doing (a very watered down) sex education unit now. It's made me think how we are told from an early age that fertility is a given and that our main concern should be how to prevent pregnancy. It's such a shame that early motherhood has almost become an indicator of low education and aspiration. My 30 year old colleague was talking to me during the week about how she plans to have children when she's "about 35"- I think I worried her sufficiently for her not to assume it'll be that easy! Well done for holding off on your boss but what a lovely thing that you can use the comforter in a few weeks. Yes, OH was very blase about my age too- and he was so adamant that he didn't need a SA that I thought he had a brood of children holed away somewhere! With you on the nurture vs nature thing as well.
HoopHopes thank you for your congrats, I didn't think it would make any difference to our relationship but it's really helping when we're going through this. I know infertility and all the treatments can put a strain on a relationship, couldn't bear that on top of everything. Awaiting our Menevit, Elevit and DHEA now!
My consultant was lovely- very matter of fact but sympathetic and looking for options.
In a strange turn of events, his secretary phoned yesterday very excited (almost more than me!) with the news that the FSH test he did at my consultation came back at 5.8? He thinks now that my ovaries are prone to 'playing up' and I could be slightly polycystic without any other symptoms apart from irregular periods. He urged my partner to see his GP for karyotype testing ASAP to rule out genetic abnormalities causing his low sperm count. Partner went yesterday evening, his GP hasn't heard of it so we'll try to get it done privately.
I don't know if this means he will refer me on the basis of one good FSH result and the fact that my ovaries are temperamental? I plan to ring his secretary back tomorrow, but I really don't want the disappointment of being told "no".
I'm waffling again- sorry! x

HoopHopes Fri 19-Jul-13 21:18:33

Hi My dh did karyotyoe tests. The gp would not do them, and our nhs dr was not enkightened either but our private one suggested them, as they are fairly expensive ( but a lot cheaper than losing NHS funding for Ivf!!) so we had them done privately and all were clear!

Can you ask the hospital to either authorise the test or to refer you for a quick private test, as it is only a blood test.

Great news on the result by the way!! How long have you been ttc? If poly cystic is the issue is there medication they can offer you to keep things balanced for you to aid natural conception whilst you wait fr assisted conception?

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