1 year TTC what next?

[ImpatientlyWaiting26]

Morning,
Looking for some emotional support and positive stories! My partner (35) and I (36) are approaching the year mark of ttc. Both our best friends announced pregnancies last week after trying for just 1 month. I'm massively struggling with the emotional toll of ttc and I honestly believe something would have happened by now if it was going to. Here is our testing timeline. I would appreciate any advice on where to go next.

• Bloods - all within range. I have Hashimotos hypothyroidism controlled with Levothyroxine.
• Semen analysis - all within fairly high parameters
• Sperm DNA fragmentation - no issues
• Vaginal and semen microbiome - both had very low lactobacillus and high bad bacterial load so was treated with 10 days of antibiotics. A retest in January now suggests I have 98% lactobacillus which I'm pretty chuffed with!
• Ultrasound and HyCosy - all clear although it was super hard to find my cervix and I have a backwards tilted uterus which apparently causes no issues for conception.
• Accupuncture for me fortnightly since October. Wondering whether to stop as I am not seeing any benefit.
• Supplements- both take a prenatal and probiotic. I also take coq10, myoinsoitol, vitamin D and omega 3.
• In general we are both healthy but my partner drinks a fair amount. I have recently stopped alcohol.
• My cycles are anything from 29 days to 36 but still considered regular and I'm definitely ovulating.
• Use preseed and also used the ferti-lily cup for the first time this month which gave me a UTI.

I have an appointment with an NHS consultant this week. As we are in Surrey, I have read that we have to try for 3 years before IVF will be offered. I have no idea what to do in the meantime. Should I be asking about Letrozole even though I'm ovulating? Can immune factors be tested on the NHS? Would love to hear others experiences.

TIA xx

Hi @ImpatientlyWaiting26 , sorry to hear you're in this position, it's a really horrible journey and so hard to deal with others pregnancies when all you want is to be happy for them.

It sounds like you guys are unexplained but I don't understand why you have to be trying for 3 years to qualify for ivf on nhs as most trusts are 2 years for unexplained. Can you discuss this with the clinic when you see them?

I personally did ask for letrizole while waiting as I ovulate late in my cycle and they agreed to a 4 month course for this unmonitored. Sadly it didn't help and I am now in my two week wait following a frozen embryo transfer.

Unfortunately or fortunately it sounds like you are doing everything right. My husband enjoys a drink or too as well but did really cut down 3 months before ivf to get the best results which I appreciated. I don't suppose you're in a position to go private for ivf if you needed to? Xx

@Eagerlywaiting1990 Love the name similarity! I have my fingers crossed for you! The 2 week wait must be incredibly difficult following FET.

Surrey Heartlands require 3 years of trying before IVF referral which would make me almost 39! Though, I do wonder if this requirement is shorter for those over 35 which I will enquire about. We have started to save to go private so hopefully will afford a few rounds if needed while we wait.

Did you find Letrozole regulated your cycles? Mine can be quite long (up to 36 days) so I'm wondering if medicated rounds will make them shorter. The risk of multiples scares me a little. I'm surprised they don't always monitor you when on the medication.

Do you mind me asking how long you waited before staring IVF? Part of me wonders if a year is too soon. Then again, I'm getting very impatient and anxious so wondering whether just to push on with it! Age is also a factor for me as I'd like to have more than one child.

Thank you for sharing your thoughts and experiences!

@ImpatientlyWaiting26 haha I noticed that too! It's well seen I chose my name a long time ago...yours resonates much more 😂.

Yeah I think definitely enquire if it's different for those over 35...I find that mind blowing that they insist on 3 years. I'd be inclined to lie to speed things up if you can.

My cycles are the same as yours and can range from a nice neat 32 days to a horrible head fry of 38 days. They actually didn't really make a difference...I wasn't even on the lowest dose -50mg if i remember correctly. My last cycle on it actually made my cycle 39 days which was a new record...although I also did acupuncture that month so i don't know if the two just didn't go together.

We started ivf last June which marked 2.5 years of trying. I personally don't think you're too early to be considering ivf - the wait was the hardest part for us and I obsessed over doing everything right for a long time which compromised a lot of who I am xx

Hi @ImpatientlyWaiting26 it sounds like you've done lots of testing already and made lots of great lifestyle changes. We worked with The Fertility Suite who look through all your testing and history with a fine tooth comb to see if there's further testing we could do/if any of the 'normal' test results actually weren't (e.g. my Thyroid results were deemed normal even though mt TSH was too high to be optimal for fertility, and I have high TPO antibodies)

However you might get help quicker to go to an IVF clinic especially one which is good at things like immune issues/natural killer cells. We have found this to be an issue and while we aren't through it yet, I'm glad we are getting help from consultants who know about this stuff! We started our IVF journey after a year TTC, following a TFMR and if you're considering it and can afford it, I'd say look into it sooner rather than later as it can be slow going xx

@Eagerlywaiting1990 I know, 3 years seems crazy! I did extend the truth at my initial fertility nurse appointment and said it had already been a year, but at that time I thought the IVF wait would be 2 years! Now kicking myself for not making it longer.

That's a shame about the Letrozole. I guess there is no evidence to say it will work if you are already ovulating but at this rate I am willing to try anything to regain a sense of being in control.

Thank you @Orangewillow. I follow The Fertility Suite on social media and have found them so informative! I do have a suspicion about immune issues but honestly have no idea where to start. I have been recommended Lynne Chapman via Fertility Solutions but don't see anything about immune issues on her website. Also considering The Lister Clinic.

Do you have any recommendations on clinics? Do you feel your high TPO to be a factor? Wondering whether to get mine re-checked even though my NHS consultant feels that it makes no difference so long as my TSH is optimal for fertility.

@ImpatientlyWaiting26 I guess you could say it's been 18 months without contraception in total but only monitoring ovulation etc for a year which is what you considered 'actively trying'. You're only doing what everyone else does. I wasn't able to feign the truth as I'd had my coil taken out so it was very obvious. 😂

Yeah definitely push for letrizole, trying something is always better than feeling stuck in limbo. Xx

@Eagerlywaiting1990 This is a great plan! Thanks for the tip.

Hope you are finding some relaxation in this nerve-wracking period! Keep us updated.

@ImpatientlyWaiting26 I'm at The Lister with Dr Thum who i was recommended for immune issues, he's lovely. So my high TPO indicated there could be something up with me immunity wise so I did the NK Cell testing and it came back with an issue and im now on steroids ahead of a FET. He's also the first person who actually wanted to treat my slightly high TSH. I haven't made it to a FET yet but I rate them very highly for IVF based on experiences so far, they seem a knowledgeable and thorough team.

Immunology seems a bit of a thorny area, some people disregard it entirely, but for others it's been the key issue to overcome and made all the difference. I did have a consult with an Nhs ivf clinic who agreed about putting me on meds for high TPO but they didn't have much to say regarding immune stuff. Dr Thum is pretty recommended for that (fertility suite recommended him to me also), or someone called Dr shehata, not sure what clinic he is at but somewhere in London

@Orangewillow Interesting you should say that because I just listened to a podcast by Dr Thum! I guess my predicament is whether I should go straight to him without having ever experienced a pregnancy or miscarriage. Do you feel immunology is something still worth exploring in this case? I'd much rather know ahead of IVF than test retrospectively.

@ImpatientlyWaiting26 I think generally immune testing is done when there's been recurrent miscarriage/implantation failure but I had neither when I had mine done, it was the TPO antibodies that flagged it (and failure to yet pregnant again, although I also had adhesions so that seems to have been more of the issue) so it might be something they would look at even if you've never had a pregnancy.

My advice as someone who spent months going between different private providers would be to go to a clinic where they test for and treat everything to make your life easier and get more joined up help. The Lister is an IVF clinic but we didn't discuss it as an option for a while, I didn't feel like it was the default solution for them

@Orangewillow Thank you, that's great advice! I guess we will go straight to the Lister as it looks as though they are very thorough. I am determined to leave no stone unturned. Wishing you the very best with your FET. x

@ImpatientlyWaiting26 happy to help! Hope you get some answers soon. Thank you, I'm in for another scan later today and very nervous it's going to be another cancelled cycle!

Sorry to jump on, hope that's okay!

Im also wondering about immune testing, my doc said it's not needed but I just wanted to hear the opinion of someone who is a little further along in their IVF journey than I am.

I've got some euploid embryos. For my age (30) I don't have amazing egg quality but I wouldn't say it's terrible either. From 4 rounds and 45 eggs I can't remember how many were mature, how many on day 3 etc but I know we made 14 blastocysts, and 10 of those euploids. I would hate to waste the embryos I worked so hard to get, but my doctor advises to "just transfer one" without doing any testing on me before. I had 1 healthy pregnancy, conceived naturally, and 1 miscarriage at 6 weeks from a failed transfer.

He's refusing to do immunology, or EMMA / ALICE.

I've had a hycosy, the many scans that come with IVF but nothing else really. Should I do immunology? If so, what exact test do I ask for?

Hi @sotif

I kinda feel the same. We haven't even began the process of IVF referral but I already know that I want to leave no stone unturned. For me immunes make sense as I have an autoimmune condition and another suspected one. I plan to meet with Dr Thum at the Lister to discuss options for testing.

Have you done a vaginal microbiome test yet? I believe the vaginal and uterine microbiomes can be linked so it is worth doing a vaginal microbiome and treating this if needed before moving to a more invasive/ expensive ALICE EMMA test. I recommend Screenme.

Ladies, I don't mean to throw a spanner in the works but I would recommend looking at the HFEA site which regulates ivf services and covers the evidence base. There's very little evidence for alice, era and emma xx

@ImpatientlyWaiting26 @Eagerlywaiting1990

I've done a vaginal microbiome test from Daye which came back all clear. Waiting for my period to do the Fertilysis uterine microbiome (I think it's very similar to ScreenMe in terms of process?)

What about immune testing? Should I try that before a euploid transfer? No autoimmune conditions that I am aware of, but I did have a slightly high TSH (not actually high for daily life, but above 2.5 so needs to be lower for IVF)

@sotif Your consultant would be best to advise. My understanding is that immunes are only a concern in repeated miscarriage/ implantation failure and those with autoimmune conditions who have never achieved pregnancy. It's incredibly rare!

Great news about your Daye results. Chances are your endometrial results will be good also!

@sotif if your TSH is over 2.5 your clinic might prescribe you low dose levothyroxine, mine was 3.1 and now down to 1.1 with the meds. My GP wouldn't prescribe unless TSH over 4 and was unaware of the desired level for fertility. Its cheap on private prescription though, about £15 for 8 weeks supply

@Orangewillow yes yes the thyroid is all fine in the sense I've had levothyroxine prescribed. I just mentioned it in case it's associated with something else that I haven't considered, like people with TSH > 2.5 often also have ... [immune issues or microbiome or whatever else]

@sotif ah I see, no not that I'm aware of, from the discussions I've had with my doctor anyway!