TEG testing on nhs before ivf?

[Ayooshi]

Hello I have been diagnosed with Sticky blood syndrome after 3 miscarriages, my last one with ivf and a new partner. I was wondering if anyone knows if I should be having a TEG test done before my next ivf cycle starts in a week? I’m not sure if this is something anyone else has had done before getting pregnant to see how much blood thinners they should be on when pregnant if that makes any sense!!

[MaryF Administrator]

The first step is to make sure you have a Hughes Syndrome/APS specialist in place to help both you and any future pregnancy and also your GP, to manage your care. These are the tests usually done: ghic.world/hughes-syndrome/...

The test you mention does look at how your blood behaves re surgery and anaesthetics, not sure how it relates to testing it before pregnancy rather than trauma. I enclose an explanation: lifeinthefastlane.com/ccc/t... The tests above, from the charity, include clotting times, which is what needs to be noted, your specialist would also be looking at a whole range of blood tests including B12, Folate, Ferritin, D and a full Thyroid panel. Please look at the specialists listed on the charity website, and also under pinned posts on here. Please put any energy you have at this stage to get the right medical consultant in place. MaryF

[Ayooshi in reply to MaryF]

Thank you for your reply, I will be making another appointment for my GP to refer me, I am still waiting for an appointment for the rheumatologist to come through it has been atleast 2 months since my ivf clinic referred me, I have read the information in the link you sent me, thanks and I hope to discuss it further with my clinic

[Ash0507]

I'm going to be trying soon too and I'm on clexane which is what was advised to take during pregnancy as warfarin was too dangerous. Have you got a specialist you can talk to?

[Ayooshi in reply to Ash0507]

Thank you for your reply, I only have my ivf clinic doctor which I will not be seeing now until my ivf course starts. Have you been prescribed clexane before you have conceived? I have heard of people taking some baby aspirin whilst ttc or in preparation but not clexane

[Ash0507 in reply to Ayooshi]

Yes it was an option before I started but remained on it. I remember her saying that it would have to be on it the 9 months then 6 months after it but I prefer clexane to warfarin as was getting really poorly on it including bleeds when the dosage was way to high

[Ayooshi in reply to Ash0507]

Have you had any clots or anything like that? If I understand correct you have already been taking blood thinners generally? I haven’t been taking anything. I haven’t been seen by a specialist as my ivf clinic did the aps screening which came back positive and because they will be the ones in charge of monitoring any pregnancy I will be taking what they prescribe me. I am tempted though to just start taking baby aspirin everyday myself. 🤷🏽‍♀️

[Ash0507 in reply to Ayooshi]

I was on warfarin but went onto injections. But yes was in blood thinners anyway however got told if I wanted to fall pregnant then that's the best treatment

[starships]

I paid to have this test done as the NHS would not prescribe me Clexane due to the gestation of my losses and I really felt I needed it. It showed I needed 150mg of aspirin daily instead of the standard 75mg usually prescribed along with clexane. I think it was about £450 including consultation. It was the best money I have ever spent as I have two beautiful children. Wishing you he best of luck

[Ayooshi in reply to starships]

Thank you for your reply, I’m sorry for your losses, were you diagnosed with sticky blood syndrome after your losses? Were you being looked after by a specialist who would not prescribe? Yes this is the test I feel I need as my miscarriages were all at different gestations and I have endometriosis on top. Can I ask where you had this test done? I was hoping it would be as simple as them online ones like medichecks 😕 it is expensive but all worth it, that’s a beautiful ending to your story 😃

[Ayooshi in reply to Ayooshi]

Just to as aswell I have tried searching on google for a private TEG test but nothing is coming up!

[starships]

I was diagnosed with Hughes after my second miscarriage and only prescribed aspirin (as per the NHS guidelines) I went to st Mary’s in London and saw Raj Rai who was wonderful. You need to book time on the TEG machine as it tests your blood while you are connected to it. I think there are only four in the country. There is one at Liverpool women’s, one in Scotland and one in Ireland. The wait for Liverpool was longer at that time so we travelled to London. My GP did the referral and I organised the appointment though the consultants secretary.

It was certainly worth the travel and expense.