Tommy’s referral for recurrent MC - is 4 months normal?

[MummyV2021]

Hey there lovely ladies in my phone! Bit of context - I’m 39 and have 1 child - 3.5yo little boy. I had 2 early MCs before him in quick succession (he was my 3rd pregnancy in 4 months). We decided to try for #2 last August. I had a chemical in September, an early MC at 6 weeks in December and a MMC at 10 weeks (measuring 6) in March for which I had a D&C.

Given my history I have been referred to recurrent miscarriage clinic and am waiting to hear about first appointment - I’ve had my initial blood and genetic test results back both of which were normal. I went to the GP on Monday to request a referral to Tommys to see if that would be quicker than waiting for NHS.

I’ve had my Tommys referral through today and had an appointment booked for 5th September. Whilst I’m grateful the referral has been processed so quickly and I have an appointment, it is a lot longer to wait than I expected! Has anyone else had this? Does this seem like a normal amount of time to wait? I honestly have no idea whether that is fast, normal or slow! It might be it’s quick and I’m just impatient due to my age and worrying what waiting that long will do.

We’re going to keep trying in the mean time as I suspect I might be hyperfertile and might just have to face more early losses til we get a good quality embryo to stick, plus the NHS referral might come through and get an appointment quicker - you never know!

Sorry for everything you've been through. I don't know about Tommy's wait time but if I were you I'd phone them up and see if they can advise.

In the meantime, do you have any money to have further testing privately? E.g. it would be beneficial to have your partner's sperm tested. I am similar to you in that I get pregnant very easily but also lose them easily and I've done a bit of reading after the latest one and I was surprised to read that poor sperm quality (sperm with DNA fragmentation) is now thought to be a big cause of miscarriage (there is a little bit about this on Tommy's website too). I imagine you're already on various supplements but it might be a good idea for your partner to go on some too - off the top of my head vitamin E and C are meant to improve sperm quality for a start. It's also worth looking into any health issues/medications he has and whether they affect fertility.

Good luck for the future.

I’m sorry for your losses @MummyV2021
I’m under Tommys and was referred last May and my first appointment wasn’t until the November. After that first appointment though my consultant said her wait time is then 1-2 weeks wait if I ever wanted any other appointments or had another loss. It’s just that initial wait which is unfortunately long

Thanks @Vick99 and sorry to hear you’ve experienced similar. Are you still on your journey? I hope you’ve got your answers. Good point on the supplements for my husband - probably worth looking into. We’re probably not at the point of exploring paying privately yet - I’m going to wait to hear about the NHS referral too and go from there.

@Figtree11thanks for sharing your experience. How are you finding it so far? Part of me feels like I’ll probably get pregnant again before I see them in September so I might call them if that happens and see what they say as the GP wasn’t particularly helpful and said they wouldn’t prescribe anything like progesterone without consultant input first and I wonder if that would be the thing that would help my situation in terms of actually staying pregnant

@MummyV2021 ive found them good so far. They have done loads of blood tests, and I was told to start progesterone from a positive test.
I did get pregnant again and had scans at 7 and 10 weeks, but unfortunately I had another missed miscarriage. The ladies who do the scans are absolutely lovely. I am now awaiting my cytogenetic testing & have an appointment with the consultant in 2 weeks. I do feel looked after & supported though even with having another loss

@Figtree11I'm so sorry to hear you’ve had another loss. But really great to hear you’re being well supported. Do you have to go to them for the scans? Or can you arrange to have them more locally? We’ll be going to Coventry but it’s a 2 hour drive, so not sure I’d be wanting to trek over there regularly (although obviously worth it for the support and if that’s the only option).

@MummyV2021 thank you, it’s awful going through it again but it has helped knowing I’m already under their care.
My scans were at Coventry, but I’m just under an hour away so it wasn’t too bad for me. But parking can be awful! I didn’t ask about scans locally but they didn’t mention anything either.
My first appointment with the consultant was in person & had blood tests. But I had another appt with her, and the one I have coming up are over the phone

I am so sorry for your losses.

I know it's an annoying wait. My friend has also been referred there and it's taken around 4 months to be seen as well. She thought it would be a years wait so she's really happy she's being seen in a few months. Xx

Seeing as your losses have all been very early I would definitely say you should be on progesterone as early as possible in your next pregnancy. Sounds like you might need to push for this....could you maybe call your local hospital's early pregnancy clinic as soon as you're pregnant and ask? And/or push hard with the GP. Given your history I would say it's essential - I'm amazed they haven't offered it already even without seeing the consultant.

My journey has now ended - I'm lucky enough to have 3 children already so any more would be a luxury which just isn't justified by all the heartache of the journey.

Thanks @Lolalu09- yes I guess it’s all relative isn’t it… for one person that’s quick whereas for others not. I think for me, I definitely expect to fall pregnant again soon so wanted to make sure I was seen asap to support that, but I guess I can cross that bridge if/when it happens.

@Vick99thanks for your input. based on other people I’ve spoken to I 100% agree and was really hoping I could push this with the GP but they were adamant they wouldn’t prescribe unless explicitly instructed by a consultant and I’m waiting for my hospital referral to push with them. I know other women in my area have also struggled with this and having the referral as a blocker. Although someone I know basically drove to Tommys in Coventry at 5 weeks pregnant to get the progesterone prescription and they did facilitate that so I could always to down that route with it!! I also know someone who works at my hospital who’s happy to help me push for it there once I’m pregnant again, so I feel like I’ve got all my ducks in a row as much as possible for now. It is really frustrating, progesterone helps so many people in my situation so I don’t understand why it’s not easier to prescribe - surely it would save so much time/money on referrals and tests to try that first!

Sorry to hear your journey has ended if you did want another. Amazing you have 3 children, but doesn’t change the hurt if you wanted more. Like you say, it does factor into the decision of opening yourself up to the heartache of trying for more though.

I'm sorry for your losses, I had two last year and had a referral to the NHS reoccurring miscarriage team. I was told this team has a minimum referral time of 12 weeks post miscarriage as there are certain tests that can't be completed for 12 weeks after miscarriage. I had my last miscarriage mid December and my appointment came through at the end of march, however by the time the appointment came through I was already pregnant again, I conceived immediately after my last pregnancy and I'm now 20 weeks. I was on progesterone from 8 weeks when I found out I was pregnant and 16 weeks prescribed through the epu

It's incredibly frustrating that pregnancy care (in fact all care) is such a postcode lottery, where I am it's very easy to get a progesterone prescription. I know some trusts require an early scan before they will prescribe progesterone (to check it's not ectopic) so next time hopefully you can push for a very early scan and then get the prescription. A bit immoral but I would even make up ectopic symptoms if needs be to get that scan - after all, if the progesterone prevents another miscarriage you would be saving the NHS time and money in the long run!

@Superscientistcongrats on your pregnancy! So lovely to hear it’s worked out for you. And thats really interesting about the 12 week thing - although why don’t they just tell you that?! That’s the thing that’s been most frustrating is just the lack of communication or even just giving you an idea of what to expect. So it might be I get seen by the NHS clinic sooner. The advantage is that I’m on their radar, so if I do get pregnant it should give me some leverage in pushing for early scans/interventions hopefully.

@Vick99you’re so right, it’s such a lottery and so unfair. Good tip on playing the system to get a scan, I certainly wouldn’t be above doing that!

It's definitely worth a call to the epu once you get a positive test. My epu has a "rainbow room" for reassurance scans at approximately 6-7 weeks after a loss.
This time around I didn't have a lmp as I conceived before my period returned. I phoned the epu for advice about reassurance scans and progesterone. They got me in to have my HCG measured to determine if it would be worth scanning me and if not when they could. The results came back at over 100k so they scanned me the next day where I found out I was already 8 weeks and left with a prescription for progesterone.

I was referred back in January after my miscarriage and I’m still waiting for an appointment - I was told it would be around the 6 month mark, I’m from Birmingham x

@Superscientistthanks for sharing, I’ll bear that in mind. I don’t know how our EPU operate but would hope they’d be willing to see me in my circumstances.

@firsttimemom99xit sucks that you’re still waiting, must be so hard. It’s good they gave you a time frame to help with expectations though I guess.

Hi I’m currently going though my 10th miscarriage 5 chemical pregnancies 1 blighted ovum 4 non viable pregnancies that are missed miscarriage as always just a cystic area at 6 week scan and a full on bleed 7-8 weeks along. I do have 3 DC. 2 straight forward pregnancies and then 2 x MC then DC then the remainder mix of chemical pregnancies and MC’s.

I am devastated at the moment just been for 6 week scan and usual diagnosis : Pregnancy of unknown location have had bloods taken for HCG and then a repeat - I am completely sure of my dates and know exactly where this is heading. I am 43 years old.

For first time ever today at the EPU the nurse said we would refer to the recurrent miscarriage clinic - my GP or EPU’s nurses have never suggested making this rererral and I am devastated that even I overlooked as I just marched on.

Last week I was looking at Tommy’s website and I think I would prefer a referral here rather than the NHS. So will go speak to my GP any advice would be really appreciated about Tommys or the NHS referral system.

i believe that Tommys provide the NHS service. My GP referred me to the recurrent miscarriage clinic and he told me that Tommys run it. So I think it’s one and the same if that makes sense? Your GP can definitely refer you. If someone corrects me then I may be wrong, but that’s how it was explained to me for my referral

@DCmum95 that’s not the case where I’m based as I’m on 2 waiting lists - the Tommy’s one and the one at my local hospital. They are different and might be to do with whether you are more local to a Tommy’s centre maybe or whether your local hospital doesn’t have a clinic.

@NKH82i am so sorry to hear what you have been through and that you haven’t been offered more support or a referral sooner. Check with your EPU what their referral is to, as mine arranged it all and I got a letter to say I was on the waiting list for my hospital RMC clinic. But I then made a separate appointment to see my GP and asked them to refer me separately to Tommy’s which they were happy to do as I met the criteria and you definitely do. I was advised to keep on both waiting lists and see which happens first.

I have my Tommy’s appointment still on 5th Sep and haven’t yet had my appointment through for my NHS one. But that might be because my hospital are now aware that I am in fact pregnant again (currently 10 weeks). If all is fine at my 12 week scan I will cancel the Tommy’s appointment but it’s good to know it’s there if anything is in fact wrong.

Definitely explore all your options! I hope you get the support you need and get some answers! Wishing you all the best xx

@DCmum95 - thank you for your input really appreciate it as I have no real idea where to go from here.

@MummyV2021 - that is really interesting I am going to speak to EPU and my GP on Monday. I am definetly going for the Tommy ls referral as I think they will accomodate/ support more in terms of prescribing progesterone from a BFB as I think that my losses are very early so may have something to do with hormones - not sure tbh as there is lots of information out there which is sometimes conflicting. I really don’t understand why the GP’s cannot prescribe based on previous history. Hope all goes well with your pregnancy and upcoming scan xx

Just an update for information purposes: I have had letters through for both RMC at my local hospital which is in November and Tommys Coventry - this appointment was originally for early January so a 4 month wait. I emailed the secretary and shared my journey so far and she has re-booked my appointment for early November and also shared she has put me down for any cancellations.

Glad to hear you’re getting somewhere @NKH82I just today cancelled my appointment at Tommy’s Coventry for 5th September due to a successful dating scan yesterday 🥰 so right now do not need it - hopefully that appointment goes to you or someone like yourself to expedite your process! Really hope you get your own rainbow soon 😘

@MummyV2021 -What a wonderful update. I’m so glad to hear you have had a positive dating scan and hope you have a smooth pregnancy ahead🥳🥰. At this point I have paused TTC just think it’s best to see what the referrals come to and move on from there.