Blood Clots during pregnancy

[Louisa K]

wow I'm so shocked at how many of you are in the same boat as me!

I'm on daily clexane injections too, my tummy is to tight to inject there which i preferred so my husband does them in my thigh now which hurts!

I was diagnosed with a pulmonary embolism in my right lung after my first baby.

5 days post partum I felt awful, i even remember saying I felt like I was going to die and that I felt like something toxic was in my body. I had a crushing chest pain and was very short of breath. Oh and my blood pressure was through the roof!

I was a bit out of it when the midwife came round for a routine check, I told her how I felt and she just called 999 straight away. I was on warfrain for 6 months and made a full recovery. Was in two minds whether to have another pregnancy but am glad I did!

To be honest I don't think I would have ever had the PE if they didn't leave me to get so much swelling, my legs were huge, my blood pressure was sky high for about 2 weeks and I think these were my warning signs that my body was under pressure, but no they let me go 6 days overdue! I put that down to my PE, I really do!

I've had a fast heart (120 - 145 bpm) since christmas and have to wait until march to be seen, even with my history! shocking!!

Has anyone else had the fast heart thing, could it be the meds?

 

[petitpas]

Hi Louisa,
I am in touch with a girl who is also suffering from a fast heartrate following PEs. She was passed around doctors and specialists for a couple of years - nobody knew what to do, whether it was her heart or her lungs or what. It's only been over the past few weeks that she has been seen by the top honchos at Papworth hospital who are starting to figure it out. PM if you would like me to put you in touch with her.

I can't believe they aren't fast-tracking you, especially as you are pregnant and your body is put under more strain than usual!!!

 

[isolabella]

Hi Louisa,
I am in touch with a girl who is also suffering from a fast heartrate following PEs. She was passed around doctors and specialists for a couple of years - nobody knew what to do, whether it was her heart or her lungs or what. It's only been over the past few weeks that she has been seen by the top honchos at Papworth hospital who are starting to figure it out. PM if you would like me to put you in touch with her.

I can't believe they aren't fast-tracking you, especially as you are pregnant and your body is put under more strain than usual!!!

I've been in the same situation since my clots too, I'm not on any other meds apart from ventolin and have to say to every nurse or doctor I see look horrified that it's "normal" for me, not once though has anyone said it needs investigating so I'd be interested to find out what they say at Papworth. I had a lung op there 2 years before my clots and they are truly amazing.

 

[Louisa K]

Hi Louisa,
I am in touch with a girl who is also suffering from a fast heartrate following PEs. She was passed around doctors and specialists for a couple of years - nobody knew what to do, whether it was her heart or her lungs or what. It's only been over the past few weeks that she has been seen by the top honchos at Papworth hospital who are starting to figure it out. PM if you would like me to put you in touch with her.

I can't believe they aren't fast-tracking you, especially as you are pregnant and your body is put under more strain than usual!!!

I'll definately PM you because I'd like to know what they have found out.

I've also been pushed from pillow to post because no one really knows why my heart is going so fast. If I do anything it goes wildly fast and I get really out of breath.

Oh and apparently I was fast tracked! Can you believe it!

 

[Louisa K]

Hi Louisa,
I am in touch with a girl who is also suffering from a fast heartrate following PEs. She was passed around doctors and specialists for a couple of years - nobody knew what to do, whether it was her heart or her lungs or what. It's only been over the past few weeks that she has been seen by the top honchos at Papworth hospital who are starting to figure it out. PM if you would like me to put you in touch with her.

I can't believe they aren't fast-tracking you, especially as you are pregnant and your body is put under more strain than usual!!!

I've been in the same situation since my clots too, I'm not on any other meds apart from ventolin and have to say to every nurse or doctor I see look horrified that it's "normal" for me, not once though has anyone said it needs investigating so I'd be interested to find out what they say at Papworth. I had a lung op there 2 years before my clots and they are truly amazing.

Yeah a few people have said "well it might be normal for you dear" but my heart was definately not fast before my PE like you. It did calm down after I stopped warfrain but has started racing again since I became pregnant.

 

[isolabella]

Hi Louisa,
I am in touch with a girl who is also suffering from a fast heartrate following PEs. She was passed around doctors and specialists for a couple of years - nobody knew what to do, whether it was her heart or her lungs or what. It's only been over the past few weeks that she has been seen by the top honchos at Papworth hospital who are starting to figure it out. PM if you would like me to put you in touch with her.

I can't believe they aren't fast-tracking you, especially as you are pregnant and your body is put under more strain than usual!!!

I've been in the same situation since my clots too, I'm not on any other meds apart from ventolin and have to say to every nurse or doctor I see look horrified that it's "normal" for me, not once though has anyone said it needs investigating so I'd be interested to find out what they say at Papworth. I had a lung op there 2 years before my clots and they are truly amazing.

Yeah a few people have said "well it might be normal for you dear" but my heart was definately not fast before my PE like you. It did calm down after I stopped warfrain but has started racing again since I became pregnant.

it would definitely be interesting to find out what causes it.

I received a call from my GP today to say the hospital had rung him and told him what dose of tinzaparin I needed so he would do me a prescription. I took it to the chemist this afternoon only to find that they didn't have any in stock, so I went to the biggest one in our city and they didn't. The pharmacist was lovely and rang all the other branches in the area and no-one had it. I rang every single chemist in our city which is quite big and not one had it. I rang my local one in the end and asked them to order it for tomorrow. Again why is everything so difficult. I'd really psyched myself up to start it tonight and now it's going to have to wait another 24 hours.
I'm in such a foul mood my OH is doing my head in. I went for a lie down after almost losing it with the cat for jumping up on the table. I gave myself a talking too but I'm feeling quite murderous.

 

[petitpas]

Oh dear, those cats!
It's probably too late now, but you can have tinzaparin shots with a higher dosage - you just squirt out enough to get down to the dosage you need. There are lines on the syringe so you know how much to leave.
A day's reprieve doesn't sound too bad, though! How far along are you?

 

[Gabriella]

Hello everyone,
I am new in the forum and I find a lot in common with what you are telling. I just learned I am pregnant with 5 weeks. I have had two pregnancies losses in a row and my reproductive endocrinologist found out I have thrombophilia (genetic condition that forms blood clots) although I don't have any identified blood clot. I am currently on baby aspirin and have been having heparin injections for 5 days now (on my leg, I got used already and does not hurt anymore..) Does anybody have or know a successful pregnancy story after heparin? and does anybody knows why is it only dangerous when pregnant? why I do not form clots all the time, only while pregnant???..thanks!!

 

[isolabella]

Oh dear, those cats!
It's probably too late now, but you can have tinzaparin shots with a higher dosage - you just squirt out enough to get down to the dosage you need. There are lines on the syringe so you know how much to leave.
A day's reprieve doesn't sound too bad, though! How far along are you?

Thanks!
6+5 so it's still early. Did the first one last night and it wasn't too bad. OH was completely useless as he's needlephobic. I'm sure I'll get used to it and the end result is more than worth it.

 

[isolabella]

Hello everyone,
I am new in the forum and I find a lot in common with what you are telling. I just learned I am pregnant with 5 weeks. I have had two pregnancies losses in a row and my reproductive endocrinologist found out I have thrombophilia (genetic condition that forms blood clots) although I don't have any identified blood clot. I am currently on baby aspirin and have been having heparin injections for 5 days now (on my leg, I got used already and does not hurt anymore..) Does anybody have or know a successful pregnancy story after heparin? and does anybody knows why is it only dangerous when pregnant? why I do not form clots all the time, only while pregnant???..thanks!!

I know of more successful ones with it than without it when you've got these problems. The thing I keep telling myself is that it is what they do give women with reoccurrant miscarriages so the "side benefit" is that we should be safer than usual.

As far as I know your blood and body goes through so many changes through pregnancy as there's only so much and it has to supply 2 living beings. Blood clots to prevent bleeding and the diversion of blood to the placenta can be sometimes misunderstood as a bleed. Anytime we go through any operation or procedure we have to take anticoags. There is also the fact that during pregnancy you might not be as active as you normally are.

Be careful too of Vitamin K in supplements (which is in most pregnancy supplements) this is the clotting vitamin and it's found in food, but as my dr said you'd have to eat nothing but spinach and liver for it to do any harm, but just be careful.

 

[petitpas]

Hello everyone,
I am new in the forum and I find a lot in common with what you are telling. I just learned I am pregnant with 5 weeks. I have had two pregnancies losses in a row and my reproductive endocrinologist found out I have thrombophilia (genetic condition that forms blood clots) although I don't have any identified blood clot. I am currently on baby aspirin and have been having heparin injections for 5 days now (on my leg, I got used already and does not hurt anymore..) Does anybody have or know a successful pregnancy story after heparin? and does anybody knows why is it only dangerous when pregnant? why I do not form clots all the time, only while pregnant???..thanks!!

I know of more successful ones with it than without it when you've got these problems. The thing I keep telling myself is that it is what they do give women with reoccurrant miscarriages so the "side benefit" is that we should be safer than usual.

As far as I know your blood and body goes through so many changes through pregnancy as there's only so much and it has to supply 2 living beings. Blood clots to prevent bleeding and the diversion of blood to the placenta can be sometimes misunderstood as a bleed. Anytime we go through any operation or procedure we have to take anticoags. There is also the fact that during pregnancy you might not be as active as you normally are.

Be careful too of Vitamin K in supplements (which is in most pregnancy supplements) this is the clotting vitamin and it's found in food, but as my dr said you'd have to eat nothing but spinach and liver for it to do any harm, but just be careful.

Oh dear, here I go quoting two of you

Gabriella,
I was told that the reason that pregnancy is dangerous is because of the eostrogen levels going up. The risk of clots is also there when you take eostrogen-containing hormones such as the combined pill or HRT. So, after your pregnancy if you want to take bcps you will need to remind your doctor of your thrombophilia so that they don't prescribe you the wrong thing (that's what caused my clots!).

Isolabella,
I think the vitamin K rule only applies to warfarin as heparin works differently. That's why for my wedding I went back onto the shots and could drink and eat what I wanted

 

[isolabella]

My dr really is full of *%(£ he has proven he doesn't know what he's talking about. Thank God for this board! i didn't think the baby bleed thing sounded right but hey. i've looked into it more and it is the hormone interference like being on the pill which is the main concern.

The chemist told me to stay off vitamin k so I'm confused now. I see my midwife next week so i'll ask her. It does seem because we're not normal that people don't seem to know what they're talking about, what's worrying is that they're the professionals.

My OH has a real problem with these injections, he completely freaked on Saturday. I'd tried to explain to him previously why I'd have to take them etc but he never seemed to bother. Then whent it came to it, he went off on one saying he wasn't happy about me taking them because the pregnancy had gone well up to now and now we were introducing something new. I tried to explain to him why I was having to take them and really we didn't have a choice if we want this baby and me to be healthy. We had a massive row that night. I did my first injection on my own, very scared, whilst he had stormed off to his parents. I was really angry with him as I felt he'd let me down. Yesterday I made him talk to me about his concerns etc and I explained to him exactly what I'd been through in the past. I told him to look up stuff on the internet etc. He did and felt a lot better. What doesn't help is that he's completely needlephobic so that adds worry because he knows it's going to hurt me and doesn't want that. I do understand but fgs Men!!!!

Anyway sorry for rant. He found this when looking, thought it might be some use to someone else.

Pregnancy

Pregnancy: Category B:

All pregnancies have a background risk of birth defects, loss, or other adverse outcome regardless of drug exposure. The fetal risk summary below describes the potential of INNOHEP® to increase the risk of developmental abnormalities above background risk.

Fetal Risk Summary

INNOHEP® is not predicted to increase the risk of developmental abnormalities. INNOHEP® does not cross the placenta, based on human and animal studies, and shows no evidence of teratogenic effects or fetotoxicity.

Clinical Considerations

Pregnancy alone confers an increased risk for thromboembolism that is even higher for women with preexisting thromboembolic disease, certain high risk pregnancy conditions, and a history of complications during a previous pregnancy.

All patients receiving anticoagulants such as tinzaparin, including pregnant women, are at risk for bleeding. Pregnant women receiving tinzaparin should be carefully monitored for evidence of bleeding or excessive anticoagulation. Hemorrhage can occur at any site and may lead to death of mother and/or fetus. Pregnant women should be apprised of the potential hazard to the fetus and the mother if tinzaparin is administered during pregnancy. Consideration for use of a shorter acting agent should be specifically addressed as delivery approaches.

Data

Human Data - Fifty-four women pregnant or planning to become pregnant with conditions requiring anticoagulation received INNOHEP® in an open-label, prospective, pregnancy dose finding study. (See Clinical Pharmacology, Special Populations, Pregnancy.) Patients received 50 to 175 IU/kg/day, with dosing starting as early as prior to conception or as late as 32 weeks gestation. Duration of exposure ranged from 3 to 463 days (median 159 days). From 55 pregnancies, there were 50 live births, 3 first trimester miscarriages, and 2 intrauterine deaths at 17 and 30 weeks. Approximately 6% of pregnancies were complicated by fetal distress.

Approximately 10% of pregnant women receiving INNOHEP® experienced significant vaginal bleeding. A cause and effect relationship for the above observations has not been established.

Animal Data - Teratogenicity studies have been performed in rats at SC doses up to 1800 IU/kg/day (about 2 times the maximum recommended human dose based on body surface area) and in rabbits at SC doses up to 1900 IU/kg/day (about 4 times the maximum recommended human dose based on body surface area) and have revealed no evidence of impaired fertility or harm to the fetus due to tinzaparin sodium. There are, however, no adequate and well-controlled studies in pregnant women. Because animal reproduction studies are not always predictive of human response, this drug should be used during pregnancy only if clearly needed. INNOHEP® does not cross the placenta.

Cases of "Gasping Syndrome" have occurred in premature infants when large amounts of benzyl alcohol have been administered (99 - 404 mg/kg/day). The 2 mL vial of INNOHEP® contains 20 mg of benzyl alcohol (10 mg of benzyl alcohol per mL) (see WARNINGS, Miscellaneous). If INNOHEP® is used during pregnancy, or if the patient becomes pregnant while taking this drug, the patient should be apprised of potential hazards to the fetus.

Nursing Mothers: In studies where tinzaparin sodium was administered subcutaneously to lactating rats, very low levels of tinzaparin sodium were found in breast milk. It is not known whether tinzaparin sodium is excreted in human milk. Because many drugs are excreted in human milk, caution should be exercised when INNOHEP® is administered to nursing women

 

[petitpas]

Isolabella,
I can't believe how insensitive your OH was! Basically, and I really do have to be blunt here, taking heparin is a question of life or death not only for the baby, but mainly for you.
Here are some stats to throw at him:
If you did get a clot (and you are obviously at risk) and it travelled to your lungs you would have a 30% risk of dying - pretty much within minutes!
60,000 people die in the UK every year from clots. Thrombosis is the number one cause of maternal mortality.

The most common after-effect (occurs in 30-50% of leg-DVT sufferers) is Post Thrombotic Syndrome where for the rest of your life your leg will keep swelling up and be in pain, possibly stopping your from walking and causing long-term disability.

Two posters on here have rapid heartbeats, making it difficult to do anything physical. My Mum had a DVT after giving birth to my little sister and almost lost her leg as a result (post-partum DVT is why you need to take blood thinners for at least 6 weeks after giving birth)

The general consensus is that with a second incidence of clotting, you will be put on blood thinners for life. This would mean very regular blood tests and a constant risk of bleeding or having a stroke. So, it is generally a good idea to prevent a second incidence.

I wonder whether it is because your OH isn't aware of clots. It's not exactly the most talked about illness. Maybe you can liken it to diabetes? If you had that and needed to inject insulin on a daily basis he wouldn't have a problem with it, would he?!

Tbh, I would be reluctant to get my DH to give me the injections. I am a recovering needle-phobe and therefore am very specific as to how I like it to be done to cause minimal pain (i.e. inject suuuuuuuuuper-slowly). Though admittedly I had nurses come round my house every night for a week before I dared give myself my first injection lol

As for the vitamin K, I suggest you either ask to speak to a haematologist or another pharmacist and then ask them to explain the difference between Warfarin and Heparin. Otherwise, do you have a DVT-clinic where you are? Most hospitals now have specially trained nurses and doctors working there and they can give you more specific information.

Generally, when you are not pregnant, Warfarin is the preferred blood thinner. It is cheap and comes in pill-form, but you need to keep your diet somewhat consistent if you want to avoid having to give blood and change your dose all the time. You should definitely NOT avoid vitamin K altogether. If you avoided vitamin K completely you would have to cut out pretty much everything green and healthy and that is never a good idea. Things you should avoid are cranberry juice (that is a guideline as research is not very conclusive) as well as herbal teas and alcohol (they mess with your INR levels).

Heparin is the other alternative and most low-molecular-weight-heparin (LMWH) is safe during pregnancy. Heparin works differently in that it does not affect your INR level. So vitamin K and other things that could change your INR level do not change the effectiveness of the heparin as your INR will only be around 1.0 anyway. The thing to watch out for is the platelet count, so you should have regular blood tests to monitor that. This is something you should definitely ask your doctor and midwife about.

I am surprised that you are not being followed by a consultant during your pregnancy, just because someone should be monitoring your blood and plan for the delivery.

Sorry for all the boring stats. I'll stop now before everyone goes to sleep

 

[isolabella]

Wow do you want to be my Dr? sounds like you know more than them and funnily enough I trust you more!Thanks so much. I agree with everything you say about OH and Drs etc and i think it's contributed to me feeling quite low about it all today. Things are better with my OH as he seems to understand more. I have my first MW on 12/2 so hopefully she'll get to refer me to hospital.
I was on warfarin for 6 months after my PEs and i actually bought the blood test kit to save me going to the hospital every week. I would do it phone the haematologists with my inr then they'd tell me what dose to take!

 

[petitpas]

Wow, Isolabella, you are super-kitted out
I had to go to the hospital all the time where they took elbow-blood rather than finger-prick tests. I hope I never have to go through all that again!

I'm glad that all my research and experience helped someone out.
I just got quite clued up because I wanted to know what's going on and because so many health professionals didn't. It's shocking how basic information, such as about stockings, is just not available!

Your midwife should really know about clots and referrals and all. Otherwise, just call the haematologists you used to see. That's what they told me to do when the time comes.

Good luck with everything
Pip-the-non-doc

 

[isolabella]

Professor Pip Sounds better! Thanks hun