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Recurrant miscarriage care - or lack of

(10 Posts)
Skattikat Wed 12-Apr-17 14:19:30

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I have had three miscarriages in the last year and was referred to a specialist. He spent 5 minutes in a room with me asking me questions and then sent me for blood tests to check if I had a clotting disorder. The test results came back saying that I had a protein c deficiency and a borderline result for my antithrobien count. He discharged me and reordered the tests to double check the antithrobien count. He advised me to keep trying for a baby and take aspirin as soon as I found out I was pregnant and then come and see him at whipps cross straight away and they would give me weekly injections. I had the tests done again and all my levels came back normal. The results were completely different to the first tests. I contacted to the GP who wrote to the specialist and heard nothing back. In the meantime I have become pregnant again. I went to the hospital and asked to see the specialist and they advised me to wait for an appointment from the midwife, then I would have a scan and then see the specialist. I still didn't know if I am supposed to take the aspirin or if I still need the injections so I went back to the GP and explained this and she arranged for me to see a consultant at the EGU and have a scan. She printed off my blood test results and I went there today. The scan showed nothing but as I am between 4 and 5 weeks they don't know if this means a miscarriage or not. They took my blood and told me to come back on Saturday. I feel completely helpless and have no control. I didnt even see a consultant to show my blood tests too as once they saw the scan they obviously don't think it is worth me speaking to anyone. I have a very short cycle and always spot before my periods and occassionally experience flooding. None of this has been investigated by a doctor. I don't feel like any steps have been taken to help this pregnacy and now the viability is in question there won't be until they can determine if it is worth it. I'm just wondering if anyone has any advice on if it is worth being seen by a private specialist for this pregnancy or having a consultation. I just want to feel that I am being looked after and that I am being listened too but I don't know if it is too late to get in touch with someone at this stage.

JCleRoux Wed 12-Apr-17 19:46:46

Hi OP. I am so sorry for the way you've been treated. flowersMust be very frustrating as this is a very important think happening to you and it seems as if health care providers are not giving it the attention it deserves. Could you maybe try your GP again and see what they suggest about a private scan?

Skattikat Thu 13-Apr-17 17:22:27

Hi, thanks for the reply. I could but I'm just not sure that it is worth doing at this point. The scan yesterday didn't show anything and so I don't think going for a scan privately is going to yield any different results. What I really wanted was to talk to someone to find out if I should still be taking aspirin if my last blood test results came back normal. The specialist just tested me to see if I had a clotting disorder and didn't check for anything else because my original test results came back with a problem. I just feel like they still don't know what is wrong and that I feel in better position with this pregnancy than I did with the last. i thought they were supposed to test for everything but this doctor spent five minutes in a room with me and didn't even really ask me any questions. He looked for a problem and found one and then didn't look for anything else but then the second set of tests showed my results to be normal and he had discharged me by then. I feel like I don't have a chance with this pregnancy. That I am going to miscarry before I have even had a chance to sit down with someone. I didn't want a scan yesterday because I knew it would be too early and then they would just focus on that and not try and treat me. All I wanted was to try and talk to someone about my blood test results but the GP said if I went for a scan then I could see a consultant and they would be able to advice me after and that it didn't matter that it was early. Once they did the scan they just treated it as an PUL and then sent me away. Anyway, this is probably repetitive and I know sounds really negative but I just feel completely helpless.

Dozer Thu 13-Apr-17 17:29:57

Very sorry you're going through this. Prof Lesley Regan's book on mc is very good and emphasises that clotting tests need to be done very carefully or you get false negatives for clotting problems. Could you seek a referral to St Mary's in London? I paid for private appointment and tests (approx £1000: less if you and your partner have already had the genetic tests done).

Dozer Thu 13-Apr-17 17:30:09

They take NhS referrals too.

PenelopePuddleduck Thu 13-Apr-17 20:39:53

So sorry to hear about your experiences Skattikat. It's such a worrying time. You shouldn't have been discharged from that consultant without further tests or some sort of discussion. I find it terrible the number of people on mumsnet who aren't getting the recommended recurrent miscarriage investigations.

If you look at the royal college of gynaecology and obstetrics guidelines you will see the tests you should be having-karotyping (I believe now only done if there have been genetic tests during previous miscarriages that indicate genetic factors), all the blood clotting tests, and a scan of the womb and ovaries. Some of the clotting tests do need repeated but Dozer is right they do need to be done correctly in case of false negatives.

In your case I would consider calling the hospital and asking for the consultants secretary as a matter of urgency, explain that you haven't heard back from the consultant & that you're now pregnant and very worried you have been left without any information. It may be that they can treat you with the originally planned treatment if you shout loud enough (not that you should have to)! I've heard them doing this for others, even if they don't have a definite diagnosis, but just in case.

I'm sorry I can't comment on the protein s deficiency. What are the injections you would be getting? I've been diagnosed with antiphospholipid syndrome after 3 miscarriages and have been given aspirin to take, starting from before conception & then heparin when they confirm the pregnancy is not ectopic. If it's similar I don't think there would be harm taking the aspirin (many women take it anyway).

Thinking of you and hope you get the right support x

Skattikat Thu 13-Apr-17 23:03:34

Thanks all for your kind replies. I have decided to start taking the aspirin anyway. I think protein C is just something that stops your blood clotting. The first test the result count was 62 and normal was anything above 72 but the next test it was 92. Just seemed such a difference and I asked GP to get in touch with doctor but she never heard back. I have been given appointment to see consultant (or one of his team) on Saturday at 11 but I am supposed to go back to the EGU on Saturday at 9.30 for my blood test results. The EGU said to cancel the appointment and say I am under their care but I feel reluctant to do that just in case everything is ok. Just don't know what to do. I'm not sure what injections they were but think it might be same. It's on a letter I have. Thank you again for your advice. I really appreciate it.

Skattikat Thu 13-Apr-17 23:06:20

And I'm sorry for all your losses and hope that you recieve the right care and go on to have a successful pregnancy xx

Itscurtainsforyou Thu 13-Apr-17 23:22:12

Sorry for what you've been through op. It may be that they're talking about giving you hcg injections (I had these), but in your shoes I would start taking low dose aspirin now.

I hope all progresses ok. If you're not happy with the care you're getting it may be worth seeing if you're near a rainbow clinic (Edinburgh, Manchester or London, maybe others too) who specifically care for women who've previously lost pregnancies - they're both compassionate and are up to date on the latest research to improve pregnancy outcome.

Good luck

limon Sat 15-Apr-17 16:44:27

If you haven't already steed the aspirin, atart it. I had three miscarriages in a year - then a fourth pregnancy during which I took aspirin from bfp and my dd is now a bouncing five-year old. All the best x

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