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Referral to St Mary's?

(3 Posts)
elc19 Thu 06-Feb-20 16:07:55

Had my appt with local specialist today.

Well, what can I say really? Being tested for thrombophillia screen, MTHFR, ANA, lupus, thyroid AGAIN. I’ve had all these tests already, ANA positive, MTHFR positive... she admits this is beyond her knowledge as my case is so complex?! On the waiting list for another operation for my endometriosis, will follow up when genetics testing comes back from baby. I just feel like screaming and shouting and crying until they refer me to somewhere bigger and better. Apparently I’ve had their protocol, progesterone, aspirin, clexane injections, high dose folic acid, vitamin D etc. They won’t test for killer cells as they “don’t see the point” where the fuck do I go from here???? I’m so disappointed and angry and upset.

How do I get a referral past my local hospital? I'm going insane here, 8 losses and they can't do anything for me? seems crazy I haven't been referred on, they won't test DH for anything unless genetics come back dodgy.

I am losing the will to live with all of this.

LASandOtto Thu 06-Feb-20 17:10:07

Hey OP!

I think you can ask to be referred by your GP to somewhere like for example Dr Quenby in Coventry. I don't know where you're based but it might be worth travelling for this? Also Prof Lesley Reagan at St Mary's in London is meant to be very good and you could explore being referred there, I don't know much detail about how to go about it but I think I read somewhere on a thread here that you can definitely get referred to Coventry from anywhere in the country after 3 losses.

I'm really sorry to hear you're feeling low and sad and I'm very sorry for your losses. It's such a grim and difficult time when wanting to seek answers and there's seemingly one hurdle after another to overcome.

I'd speak to Tommy's as well as they will be able to give you some excellent advice on what they'd suggest are feasible next steps.

I've had NK cell testing done privately at the ARGC in London. It's expensive but the results told me what I had guessed already, I have high NK cell values and am being treated with IVIGs once a month or so until it improves. I know there's debate out there on whether it has any scientific backup but I read a research paper and it had some very positive results for this so I went ahead. I've also got an auto immune disease as well which is why I thought the NK cells could've been a factor with my MCs.

Wishing you all the best! Hang in there thanks

elc19 Thu 06-Feb-20 20:07:03

Coventry is a 2.5 hour drive compared to 45 mins to London, just seems so far for us especially as we will have to keep going back.

I will have a chat with Tommy's, thank you for that recommendation!

The consultant said today even if it's positive they don't like giving IVIGs because of the side effects and because I'm already being treated with prednisolone she doesn't see the point. They won't test DH for anything unless genetics on baby come back not good.

I've got an autoimmune disease too but they aren't sure which one, been tested for loads all negative what I do know is that I have acute angiodema.

This is all so confusing and frustrating.

Thank you so much for replying and the info you have given, I'm really grateful. Wishing you lots of love and luck xxxx

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