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Miscarriage/pregnancy loss

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Miscarriage, heterozygous for PAI-1 and not sure what to do now

5 replies

Ginger84 · 31/12/2023 14:48

Hello all,

I had a missed miscarriage in May this year at close to 11 weeks. Everything was normal and I was shocked to discover that the pregnancy had not progressed past 7 weeks at a scan I did when I had some slight spotting. The miscarriage happened soon afterwards naturally at home, which was an agonising and traumatic experience. I haven’t been the same since as this was a very much wanted pregnancy.

I am currently 39 (and DH is 43) so time isn’t on our side at all. I have a 5 year old DD which makes things a bit easier, but I grew up as a very lonely only child and really wanted to give her a sibling. It is also something she has been longing for. With her pregnancy, I had absolutely no problems at all. After this miscarriage, I went privately to Mr Rai at St Mary’s and did some tests that were all normal but the PAI-1 revealed that I am heterozygous for PAI-1 and my TEG levels were slightly elevated. Mr Rai then recommended that I take 150mg of aspirin and low weight heparin injections if/when I get pregnant again. I asked for a report for my diagnosis from him to share with my GP after having two chemical pregnancies in July and September but unfortunately he didn’t give me any reports confirming my diagnosis. His secretary said she will follow up with him, but then three months later she also stopped responding to my follow up emails. I don’t think it is unreasonable for me to ask for a follow up report from my consultations… but here we are.

Now I really don’t know what to do? This ghosting attitude is also adding to my anxiety and feelings of frustration as I have a diagnosis that the GP doesn’t recognise and thinks I made up since I have no reports confirming my diagnosis. I only have the tests and no prescriptions and she doesn’t understand these tests. I don’t know if there are any other gynaecologists out there (London based) who I can go to privately. Did anyone out there get a diagnosis related to PAI-1 and TEG by other gynaecologists in London who you can recommend to me please? Unfortunately, Prof Regan has the same secretary so I don’t think I can go to her since she also works closely with Mr Rai. I just don’t want to go to anyone who wouldn’t understand the implications of this diagnosis.

Also in Feb 2024, it would have been 1 year since we started TTC and I will be turning 40 in March. In that one year, I have had 1 miscarriage and 2 chemical pregnancies. What can the NHS do to help me? So far, they have done nothing. Do they offer any help to someone like me? I feel so alone with zero help or support. On top of that I get some mean comments from parents at my daughter’s school with regards to her being an only child (as if there is some sort of competition in this regard among mothers) that don’t make things any easier.

I apologise for the long post - but I feel very hopeless rights now 😢

OP posts:
Longbarn5 · 31/12/2023 15:54

Ginger84, sorry to hear that you are having these issues. Just wondering if your own GP would be able to contact the consultant and ask for the report. I think it would be unprofessional for him to refuse this but just my view xx

Ginger84 · 31/12/2023 20:25

@Longbarn5 Thank you so much for responding. I appreciate it. I asked my GP to contact them directly and unfortunately she said she cannot do it as I went privately and it is now not up to her to communicate with that consultant - so very frustrating. I managed to get her to refer me to St Mary’s though and will get in touch with them accordingly. Hopefully being referred to them directly where that consultant is based would help.

OP posts:
Longbarn5 · 03/01/2024 20:31

I do hope you get the answers you deserve, good luck xx

BeautifulBirds · 03/01/2024 20:50

Sorry to read about your losses.

Could you do a SAR to get the medical information you require?

BeautifulBirds · 03/01/2024 20:51

I'm sure the Nice guidelines are over 35 and TTC for 6 months require further investigation.

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