Recurrent Miscarriage - Tommy’s Referrals from Scotland

[R12]

Hi all,

Hoping someone on here might have any experience with referrals from Scotland to south of the border.
We have had recurrent miscarriages (3-4 in last 18 months), and after a couple of disjointed blood tests they have not found a reason.
I have a variety of other symptoms which I expect are linked, but my GP surgery is extremely unhelpful and not willing to investigate. The male GP I spoke to dismissed it as period pains, and the female GP just prescribed pain killers.

I have asked for a referral to the Tommy’s clinic in Coventry - my GP said in Scotland such referrals have to come from a consultant, so they are unable to refer me (but asked the consultant to). The consultant says she would not be able to get funding for it, thus won’t refer me. The consultant took 3 months (and several phone calls to reception to chase it up) to basically just send a letter saying no. I was devastated.

I spoke to the clinic themselves and they were very helpful (and confirmed they have several Scottish patients, referred by their GPs), but obviously can’t actually do anything until I have a referral. They said they can’t take me if I funded it myself either - so the GP is my only hope.

For context, we live in a small village in the Highlands/Islands health board area (so the attitude of the GPs is not totally unexpected) - the consultant we saw was in Glasgow, as that is our nearest (still around 1.5 hours drive away). It does mean that whilst our GP would access funding from Highlands & Islands health board, the consultant would be accessing Glasgow & Clyde.
Neither of us has any children.

I feel like nobody is listening, and nobody cares - I’m at my wits end. We’ve been forced to go through 3 (confirmed - although I think there was a 4th too) before they would even look at me. How many more do we have to have before someone will take me seriously? 😔

Hi
I'm so sorry for your losses, its so heartbreaking. I've also had 4 losses in 12 months.
I've had no experience with Tommy's but I have been under the nhs reccurent miscarriage clinic. They've now discharged me as 'unexplained'.
We've eventually paid for private testing which has showed up somethings that the nhs didn't test for. I'll be on steriods and heparin injections next pregnancy.
We're also having karyotype testing on myself and partner, which is the last test we can have.
I know it's not an option for everyone and it's very disheartening these aren't avaliable via the nhs. If it's an option for you maybe it will be a quicker route.

Thanks for replying and I’m really sorry to hear that - glad that you have managed to get some help though.
Do you mind if I ask which private clinic/what tests you went for? I have had a bit of a look for private tests etc online a while ago, but most of the clinics coming up seemed to be focused around IVF.
We did ask for karyotyping but the consultant said the lab would just decline it so she wasn’t even going to try. It’s on my notes to be asked for next time 🙁
Fingers and toes crossed for your next pregnancy ❤️

Hi @R12
I totally feel for you as I recently had my 3rd miscarriage. The 3 miscarriages rule to ‘qualify’ for investigations is just modern form of cruelty in my view. Plus getting pregnant again is never a guarantee so every pregnancy should matter.
I went to see Dr Rai privately after my 3rd miscarriage at St Mary’s London as the waiting time on the NHS would have been 8 months and time is not on my side. Plus the GP and I had no idea I can be referred to Coventry (even after my 2nd miscarriage which maybe would have prevented the third). It seems that my GP practice doesn’t have basic information about how to deal with recurrent miscarriages as I really wanted some answers after my second one and the GP said it is not possible. I tried to get some answers by going privately but no reasons were found mainly because I think the 3 miscarriages rule is so ingrained that I felt my concerns were dismissed mainly on the assumption that 2 miscarriages is still something common. So only some basic blood tests were done.
Now I do not know if going as a self funded patient is an option for you but Dr Rai saw me quickly ( got an appointment within a week) and he did some more extensive investigations; he found some issues so I have a plan in place for my next pregnancy (if I have the privilege of getting pregnant again).

@R12 so sorry you are going through this. I’ve seen Raj Rai at St Mary’s privately after my second MC. I think his tests are quite limited -he mainly looks at thrombophilia.

I actually think fertility clinics can be more comprehensive- looking at thrombophilia plus male factor (DNA fragmentation), anatomical causes and immunes (the controversial NK cells).

My IVF clinic (in London) did all of this. Let me know if you’d like to know more details.

Have you tried seeing a Reproductive Immunologist?

I've had 3 MC's with all tests coming normal, even the fetus testing came as normal DNA. Now, I'm seeing an RI, and his testings are much more extensive and he has found some problems. I will take some immunosuppressants on my next IVF cycle.

There are Facebook groups where people have cases like yours/mine and they have a list of recognised RI's all over the world.

Most of these RI's have remote only appointments, you don't have to have Face to Face appointments.

@Kari4596 it sounds like your experience of the GPs has been similar to mine sadly - they kept just telling me it was bad luck. It’s frustrating, as I know my body and know something isn’t right but nobody seems to believe me.
I’ll have a look at Dr Rai, thank you.

@sweetpea2000 thanks for the pointers - it sounds like it might be worth us looking at a fertility clinic. I’ve thought about the NK cells tests etc (got details of the implantation clinic by Prof Brosens), but I think there may be other factors at play which I’d like to get sorted out first to give us the best chance.

@Cherry35 I haven’t - I wasn’t aware there was such a thing. It sounds like this is perhaps the best bet for me, because although all NHS tests came back normal, there are other things that suggest to me there may be an immune issue (for example I’m not allergic to anything but have an extreme reaction to insect bites - even midges , I come out in really itchy spots that can last months/up to a year depending on the insect). I have tried to stay away from Facebook groups etc incase anyone sees as we haven’t told anyone about our situation (dealing with my own sadness/upset is bad enough, I don’t want to have to try and cope with other people knowing/the pity etc). I will tentatively have a look though - I guess at this stage it would be nice to have a bit of support from others in a similar position.

Thank you all got taking the time to respond - it’s been really helpful. Hope everyone gets their much longed for baby eventually 🤍

@Amyb87 Can I ask what private tests you had carried out and where? Thanks in advance