Recurrent DVT missed miscarriage

[maggie75]

sorry - long ...

I have just had an erpc for a missed miscarriage that was discovered at my 12 week scan. The pregnancy stopped at 10+3.

After diagnosis of the mmc I was having a leg scan on a separate outpatients appt in vascular surgery and they found a massive DVT at the top of my left leg. I was admitted as an emergency, they did the erpc and then began anticoagulation (clexane).

This is my 3rd DVT. I had one in my last (successful) pregnancy and was managed with clexane throughout. This pregnancy i was on 40mg clexane a day. Didnt stop the clot though.

My question is, has anyone had experience of recurrent DVT and miscarriage? They have done thrombophilia screens in the past and not found anything. Have been referred to Haematology for investigation. Will be warfarinised as of monday for 6 months + so can't TTC until that has stopped.

My DH and I are very sad about all of this. The mmc, the DVT, also have venous leg ulcer, not being able to try again and am just generally very worried about my health again. Its floored us a bit really. I have a healthy 3 yr old dd, so am very lucky in that respect.

Also, am sick of treatment without proper investigation - my mum and brother have both had DVTs as well. Has anyone gone private for investigation into clotting disorders? Am desperate for answers adn the NHS is like banging my head against a brick wall. Its taken me weeks to get diagnosed with a clot -they even missed it on a scan in A&E 2 weeks ago.

Im cross posting on 'Health' in case anyone there has experience. Many thanks.

[jasmine51]

I'm not sure I can answer your question but I have thrombophilia. It was diagnosed as a result of the MTHFR test - is that the one you have had?

[maggie75]

Sorry - not sure what the tests were. Always just referred to by docs as 'thrombophilia screening'. will ask the Haematologist when i see them.

jasmine - can i ask how thrombophilia has affected you? any dvts? and what is your management?

I have been sent home with my dvt, whereas the previous dvts treatment started in hospital with heparin being given intravenously for 3-5 days. Worried they havent managed this correctly. GP seemed unworried though (though was unphased/uninterested as always)so perhaps management has changed. Feeling paranoid and worried about everything I guess.

[jasmine51]

Well my thrombophilia is related to being homozygous MTHFR. This condition has a number of repurcussions including clotting issues - and if I understand it correctly, that can mean clotting problems of either kind (too much or too little) although I might have got this totally wrong. Anyway, I was labelled as thrombophilic and have been taking aspirin every day. My blood has been tested roughly every month and there has been talk of heparin but because I have no history of clots in me or my family my treatment hasnt been escalated.
It doesnt sound as serious as your issues. When you get pg again, I would certainly insist on being monitored by an EPU. I begged my GP for that but got blanked. I spoke to my mw bless her and got an appointment with them the next day. They are my lifeline, giving me scans and checks every 2 weeks, I cant thank them enough.

Another option that has occurred to me is a referral to the rmc at St Marys in Paddington. You would have to go private but if you explained your history to them they might agree to take you on for proper testing without having to have the oblilgatory 3 mcs? just a thought

Good luck xxx

[maggie75]

One of the Gynae registrars also mentioned a condition called SLE (Systemic lupus erythematosus) to me, as apparently when Im hot I present a typical marker of the condition - a butterfly like pattern on my face. So this is another avenue to pursue to try and point the health profs in the direction of.

Apparently this condition causes clotting issues - its an auto immune disorder. Dont really know anymore than that at the mo.

Anyone out there with any exp of SLE? Only an area for investigation at the moment tho.

[Shamechanger]

Maggie the test you've had is one of the ones that when positive, along with other symptoms, can be a marker for lupus (SLE), which amongst other probs can cause clotting and MC. TBH I don't know if your result is positive though. Can you ring your consultant and ask if your Anti DNA test result was positive? The family history is interesting. Do you have any other health problems, arthritis, migraines, raynauds or anything? The butterfly rash would def be indicative.

[laurabethmcd]

Hello Maggie,

I am so sorry for your loss.

I have Protein S Deficiency Syndrome which increases the risk of blood clots, this is hereditary and runs down my Dad's side of the family (My Papa, Uncle, Aunt and Dad have all suffered from Blood clots Pulmonary embolisms - although being healthy).
I have known about my disorder for 10 years or so and have always been given the advice that when I became pregnant to contact my doctor immediately etc etc.

To my delight we discovered I was pregnant last year but had a mmc at our 12 week scan (even though I saw a consultant from a different trust who told me not to worry about anything the day before my scan). Then in July we suffered a second mc.

After what seems like forever and with alot of questions, a consultant has confirmed that there is a link between my protein S and mc and will administer clexane to me as I took an allergic reaction to aspirin when I was asked to trial that.
I have been told that I will need to take clexane from when I find out I'm pregnant right through until around 6 weeks after I give birth.

As you are suffering from DVT's I don't even know if what I have written is relevant, however Protein S is linked to DVTs - so it might be worth being asked to be tested for that?

I feel like I've had one hefty fight with the NHS over the last 12 months for someone to take me seriously (contrary to my medical notes). We also received conflicting information from consultants within the same hospital, which was confusing! I have to say that the care I did receive when things went wrong was lovely.

Take care
L

[maggie75]

Hi Lauren

Im sorry you have had a such a tough time as well, fighting with the NHS to get the correct care and have health prof take you seriously is all too common it seems by looking at the boards here.

I took clexane from 9 weeks in my first pregnancy (60mg twice a day as treatment for DVT) and took 40mg a day in this pregnancy as soon as I has a BFP. It worked first time, as I have my lovely 3 yr DD to prove it - so good luck. You get used to the injections and they arent too bad after a while. Worth it.

Ive heard of Protein S and its def one that they test for- nothing has come up on the screenings before, but am going to try again.

thanks and good luck.

[maggie75]

Laura - sorry - misread your name as Lauren. Still waking up!

[laurabethmcd]

Hi Maggie,

Thank you, fingers crossed for all of us - I hope 2011 brings us everything that we wish for :o

Reading other people's experiences has helped.

Laura x