TOPIC:

Hi!

I'm new to this condition. I don't know where to start. Sorry if this is long.

I'm 32 years old. I've always been healthy. I got married 2 years ago and this past January my husband and I decided it was time to start having babies. We conceived right away and it was fantastic.

Then in March I started bleeding a bit. I was really freaked out as this was our first pregnancy, I was told by friends who've had children that bleeding can happen but that it doesn't mean anything. The doctors ordered bedrest for a week. The blood was more like "spotting" but I bled alot on one specific day.

I was told to go to the hospital by a clinic dr so that they can start checking my blood for pregnancy hormone drops. My hormones were continuing to rise but they could not see a fetus on the ultrasounds. They toyed with us about a week and a half saying yes and no for the miscarriage. It was mental torture...I just couldn't stop crying. Finally they classified it as a missed miscarriage (the placenta was still making the hormones but the fetus was no longer there). They gave me Cytotec (ironically a drug that makes you bleed out and get rid of the uterine lining and whatever sac is left of the pregnancy).

With all the bloodtests they did (I think I was pricked at least 5 times during that week and a half) they kept coming up to me asking if I'd had a history of low platelets. I had no idea what platelets were (and at that point I couldn't care less...the baby was our main concern). I was refered to a hematologist. The hematologist I went to see did 2 rounds of tests (checking for lupus and other diseases that might cause it) and did not explain a whole lot (I didn't like him very much). My last visit ended with him telling me it's ITP and the body's going to heal itself. Needless to say I'm in the process to get a second opinion.

Now my new hematologist has taken new blood tests to see if he can find any sort of proof that my anitbodies are killing off my platelets. He's also sending me for a spleen scan to see if I have its oversized. This hematologist told me as well that the miscarriage and the ITP might be related. His theory is that my antibodies could have attacked the fetus. I'm at 41 now for my platelets...during the miscarriage it fluxuated between the 40-50 mark. I have regular physicals every year and you can see the platelet count go down from year to year (but still being in the normal range). They started going down about 2 years ago but I don't remember being sick. The only thing that I remember is that my husband and I were immunized against hepatitis A & B that year.

I'm scared. ITP by itself is a hard diagnosis to take but when you're planning a family it's devastating. I was wondering if anybody has gone thru miscarriages after they've been diagnosed with ITP and if doctors had offered possible explanations of it? I know about the whole "it might something that was genetically wrong with the fetus" excuse but I find it a very strange coincidence that both happened at the same time. As well, I've read somewhere that the autoimmune gene that caused ITP can be "awakened" after immunizations...have any of your heard of that before (my hematologist had no idea if that can actually happen).

Any help would be greatly appreciated. We're holding off on kids now. I don't want to go thru that kind of pain again. I need some kind of answers before we try again.

Thanks, Jo

Hi Jo. I wish I could answer any of your questions for you, but I'm a little past the pregnancy option, got my tubes tied 14 years ago! I just wanted to say that I'm sorry for your loss. I went through that a few times as well, miscarriages but not due to ITP. Hope you can feel the cyber hug! I'm more than sure someone will chime in with all kinds of help for you.

Thank you

I can't imagine how you got thru a few a these. It's been 5 months already and I still get sad. It's very hard not blaming yourself for it, especially if this was caused by my ITP. Sometimes I think we should just bite the bullet and just try again even if everything is not figured out yet. I dunno.

Jo:

I'm sorry to hear about the miscarriage. That must be hard. ITP itself does not contribute to miscarriage, but there is a condition called APS that has both ITP and miscarriage as a symptom. It can be diagnosed with a blood test. It might not be a bad idea to ask to be tested for it if you haven't already. I have had the antibodies for APS on and off for years.

harvardatoz.demo.staywellsolutionsonline.com/71,AZ_d0036

Hi Sandi,

I got blood test results this week and you were dead on. I have an antibody called lupus anticoagulant which has been said to be an antiphospholipid antibody. It's scary...I was reading that even with meds I have a 50-80% chance of keeping the pregnancy. The 50% thing is freaking me out. And I was also reading that this can be a stand alone condition...some people have it without having ITP. These women have to go thru 3 miscarriages before the drs start looking into it. I guess I should feel really lucky for that.

I'm so sorry to hear about the diagnosis. APS antibodies are scary. I fear that more than the ITP. Are you going to treat at all for prevention even when not pregnant?

The funny part is that the hematologist never once spoke of treating it. His comments: "Come back when you're pregnant". So I'm really confused. I have a bleeding disorder but with clot-forming antibodies. How do you even treat that?? What has your hematologist told you? I know for sure that he won't treat the ITP...I'm at 41 and he says that the treatments are worse than the condition (even though I'm covered in bruises and I have petecchia and nose bleeds).

Well, your symptoms are odd for a count of 41. Most people wouldn't treat at 41. You also want to watch getting counts too high because of the clotting risk.

My experience with the APS antibodies has been weird too. I had my hematologist and rheumatologist pass me back and forth four times before I finally said 'enough' and found a hematologist that would deal with the APS. My ITP hematologist simply admitted that he didn't know enough about it to know what to do. The final conclusion was that since I'd never had a clot, the protocol is t take a baby aspirin a day. From what I've read, that is correct, but they don't know if it actually prevents a clotting or not. I have the Anticardiolipin Antibodies which are different than the LA Antibodies though.

You asked how it's treated. Most of the time, they don't do anything unless someone actually clots or is pregnant. If those occur, blood thinners are used. We've had a few people here on blood thinners who have had low platelets at the same time. It was a juggling act, but they did it.

Scary.

I have another apointment with the hematologist at the end of the month...I'll ask him about the baby aspirin. I think it makes a lot of sense. It makes alot more sense then just sitting pretty waiting for something bad to happen. I'm also looking into changing my diet towards a more macrobiotic one. I'm even looking into Reiki as an alternative treatment.

Anything is better than just doing nothing. I think it's digusting how doctors give you no hope. I asked him if people go into remission from ITP and he said no.

Whaaaaaat? People go into remission from ITP ALL the time. I've been in remission for 6 or 7 years. OMGoodness - maybe you need a new hemo?

APS is different, especially the LA. It does not go into remission.

I have a close friend with APS (but not ITP) and she had a very successful pregnancy and delivered a beautiful little girl this past year. Once you are pregnant they go into a routine of precautions and meds to avoid clotting. I will say she did lose one full term as a still birth BEFORE they knew she had the condition. So it is something you need to deal with when pregnant.

As for "can't go into remission" my friend might disagree. She is being treated homeopathically and although not totally out of the woods, things look pretty good from what treatment she has had so far.

Is she still showing antibodies?

The last time I checked with her, no. That was a month or so ago. She's not ready to say it's no longer an issue, but she's working that way......

Lots of info here including a section on pregnancy and APS..

www.apsfa.org/

For those in the UK it tends to be called Hughes Syndrome..

www.hughes-syndrome.org/

Thanks alot guys. I really appreciate all your input. It's comforting to see that other people have experienced this and that I am not alone.

I'm actually on stress leave right now. The APS was really hard to accept. The two hematologists I've spoken to were not very helpful or reassuring. I'm actually thinking of maybe contacting a 3rd one. I feel kinda weird doing so though...I have this feeling that I'm taking advantage of the healthcare system.

I'm going to try speaking with an OBGYN that treats high risk pregnancies. Maybe that will reassure me a bit. I've been reading about miscarriages, stillbirths and premature babies when you have APS. And the juggling act with ITP and bloodthinners is scaring me. I know that no doctor can garantee that all those things will not happen but if they could explain how everything will be looked into once I'm pregnant that would be a giant step. Instead I got a "come back to see me when you're pregnant" from the hematologist and the OBGYN that took care of my miscarriage.

I'm trying to be proactive in a maze of misinformation and confusion...I think it's the feeling of total loss of control and helplessness that's scaring me.

Luna - when I first found out I had the antibodies, I had nightmares every night. It does take some getting used to.

Keep going until you find a hematologist you are comfortable with. I have one hemo for ITP and one for the APS. I really haven't needed either one in a while, but the APS doctor I have was reassuring. It's been 5 years since diagnosis and I haven't had any problems. I have the Anticardiolipin Antibodies though and they come and go. Those can be different than the LA Antibodies.

Thanks a lot That really made me feel better.

I was curious...did you do anything specific to get rid of your ITP or it just went away by itself?

I'll be grilling my hematologist more when I see him after my spleen scan...I'm writing down all my questions that I have about the APS and ITP and if I don't like his answers I'm going to try another hematologist. If this condition is going to be with me for awhile I need a doctor I can trust.

Well, I had several things going on at the same time when ITP went into remission. First, I had just finished Rituxan for the second time. Second, I was diagnosed with Lupus and began treating that. Third, I ended up on Prednisone for serum sickness that I got from Rituxan, and haven't been able to get off of it since. Since ITP can be secondary to Lupus, sometimes treating that can control the secondary disorders. It may be the combination of factors that keeps the remission going. I don't know that I'm rid of it for good; I wouldn't be surprised if it appeared again one day. I'd gladly go back to dealing with that if I could trade it for the Lupus. I would not want to have to deal with ITP and blood thinners at the same time though.

It's hard to get answers because there are so many unknowns and no one can predict what course all of this will take. Each person is different. I remember getting a lot of "I don't knows" at first and feeling frustrated, but after I started to research, I understood why they couldn't tell me much. I did not have to deal with pregnancies though; I'd already had three children. The weird thing is that I had blood work when I was 19 that showed that I had the antibodies back then. It was before I had my kids, and I'm surprised now that everything went so smoothly with the pregnancies. Back then, the test that I had was a common test for syphilis that was mandatory before you could get your marriage license. It came back positive, even though there was no WAY I could have had syphilis. Years later, it was found that the test (VDRL), can have false positives and those antibodies are actually related to APS. No one knew that at the time though or when I had the babies. Research just hadn't gotten that far. It was assumed that if you had a positive VDRL, you had syphilis and they gave you a shot of penicillin. I was young and just did what they said, even though I was embarrassed to be accused of having syphilis.

"Patients with the antiphospholipid syndrome can have a variety of antibodies to molecules called phospholipids in their blood. These antibodies include VDRL/RPR (a syphilis test that can be falsely positive in these patients), lupus anticoagulant, prolonged PTT, and cardiolipin antibody. As mentioned above, the anticardiolipin antibody has also been found in patients with the immune disease systemic lupus erythematosus, which is characterized by the production of a variety of abnormal antibodies."

www.medicinenet.com/antiphospholipid_syndrome/page2.htm

"Antiphospholipid syndrome (APS), in relation to pregnancy, is characterized by the presence of antiphospholipid autoantibodies in association with repeated fetal loss and complications such as pre-eclampsia, retarded fetal growth or placental insufficiency. This syndrome constitutes a heterogeneous group of circulating antibodies against anionic phospholipids with the most important ones being Anticardiolipin Antibodies (ACA), a positive Venereal Disease Research Laboratory test (VDRL) and lupus anticoagulants. False-positive VDRL results do not constitute diagnostic criteria for the syndrome due to the low sensitivity and specificity of the test. However, high levels in pregnant women should serve as a warning of the presence of antiphospholipid antibodies."

www.ncbi.nlm.nih.gov/pmc/articles/PMC2948133/

It is possible to have successful pregnancies with the LA antibodies. It may not be easy, but it can be done. My daughter has antibodies that can cause miscarriages too (anti-thyroid antibodies) and it upsets me to no end. She will definitely have to plan her pregnancies in advance and be very careful the entire time. She is 26 and has no plans for a baby right now, and I worry that she won't have children because of that.

Hang in there. You will learn to deal with this as time goes on. When you must, you do what you have to do, and you will.

I had my apointment with my hematologist today. Once again he totally floored me with his arrogant attitude. I asked him about the aspirin idea for the APS...he told me that nothing has been proven that it helps. He also told me that he's refering me to his colleague who would treat the APS with bloodthinners once I get pregnant but continued to say that he can't garantee that he'll actually treat me. He'll see me to assess my case but since I only have one miscarriage it's totally at his discretion if he treats me or not. He said that he might need to have a history of 3 miscarriages even with a positive test of the Lupus Anticoagulant. That just sounds totally wrong to me. That antibody causes miscarriages...I miscarried...it's not rocket science.

I really don't know what's wrong with the hematologists over here. I'm seriously thinking of getting a third opinion. I don't want to be their guinea pig to see if my next pregnancy will miscarry without the meds or not. I actually lined up 2 high risk obstetrician apointments next week (each in different hospitals to avoid misinformation)...I'm hoping that they make more sense than my hematologist. We'll see.

Sorry to hear that. There are so many unknowns about APS and it is difficult to make treatment decisions. Aspirin is not guaranteed to work, I do know that. I was told to take aspirin for three reasons - 1. APS antibodies, 2. because I have Lupus and atherosclerosis is common in Lupus patients, 3. I have had a mild heart attack.

I'm not sure what the protocol is with how many miscarriages a person should have before being treated with blood thinners, but it seems cruel to wait until someone has three. All I know is that they usually won't use blood thinners until a person actually has a clot, or has enough miscarriages for a doctor to justify it.

I had to have two hematologists too - one for ITP and one for APS.

Good luck with your OB's and let me know what they say. Good for you for getting second opinions!

I went to see 2 high risk OBGYNs...at different hospitals...to see what they would tell me. The first one said that he would follow my pregnancy but he would not advise to treat the lupus anticoagulant with blood thinners. He said that the chance of bleeding into my brain (because of the ITP) while on the bloodthinners would be too great...and that one miscarriage is not proof enough for him that it had anything to do with it. He says that he needs see at least 3 miscarriages to confirm that the lupus anticoagulant is making the placenta clot and causing my miscarriage. He was very blatant about it and could not understand why I was getting emotional & upset about it.

The second dr basically hinted at the same thing...one miscarriage is not proof enough to ask for treat for the lupus anticoagulant even if it does show up in my blood tests. She didn't say how many miscarriages it will take to have them take it seriously. She scheduled an apointment with their in-house hematologist (this is a children's hospital that has a special dept of high rist obstetrics). The hematologist apparently takes care of all the pregnancies with blood-related issues. I guess that I will get better information then. Hopefully.

Well, if they are all saying the same thing, it must be protocol. I'd guess you have to try to trust in that. Good luck; I hope it all works out for you.

Hey guys,

Thought I would update you on how everything went...I haven't been on here for so long After seeing the in-house hematologist they saw that my platelets had gone down to 18 and they put me on 100 mg of steroids for the next 5 months. I had really bad joint pains in my knees and my hips because of it. I put the idea of pregnancy behind me and decided to focus more on trying to get well.

Fast forward to today...I'm 5 months pregnant It's far from an easy pregnancy. I started bleeding at 6 weeks in and they decided to try IVIG treatments on me to avoid another possible miscarriage (my platelets had dipped down to 18 again as well). The treatment worked but I was terribly sick...massive migraines strong enough to make me vomit. I was hospitalized for 2 days. They now have to give me pre-medication to avoid the side effects of the IVIG treatment. I would go maybe 2-3 weeks then needed another treatment. They added 5 mg of steroids to the mix hoping that the treatments would extend to at least 3-4 weeks. The steroids took alot of time to kick in but it seems to be working now...my last treatment was a bit more than a month ago.

As for the lupus anticoagulant...they said that they will not be giving me any blood thinners for that because there is not enough proof that it was causing APS. They said that my antibodies were higher then normal but close to the limit. They also said that they have to have 3 instances of miscarriage before they take a more serious look at that possibility.

Up to now everything is ok...baby is growing and nothing was unusual at the ultrasounds. It's hard not to be worried though. I would give anything to have a boring uneventful pregnancy. I love the high risk OBGYN and hematologist that I chose though...I feel comfortable with them.

It's something to tell your baby about when they turn 21! Xxxxx

Im new to the group....im 32 and was diagnosed with ITP 5 years ago...my husband and I are trying to have children. I was late on my last cycle so when I went for a routine check up with my doctor they checked my counts and they were down to 44(my normal is about 75) I told him I was about two days late. So he ordered a blood test and it came back positive.Got all excited then the next day I started bleeding. I have had a spleenectomy....and still have to take 20mg daily of prednisone(which to be honest I hate) Doctors are not suppose to tell you not to try and have children...but in the long run am I just hurting myself?

Hi The bleeding doesn't necessarily mean miscarriage. Try not to think about it and stress yourself out (I know that it's easier said than done). I gave birth to a healthy baby boy on May 19th 2013 and I am pregnant again For my boy I was bleeding at the beginning. It's super stressful...even more because we have ITP. But there's really nothing we can do If it's meant to be it'll be. My first pregnancy was a miscarriage. It wasn't my fault or anyone else's...which was hard to accept...it just wasn't meant to be. Stay positive and keep hoping. Know that alot of people have been in your shoes...and we are all sending you our well wishes.

Hi all the beautiful ladies,

i am new to this group but really need some advise, please!!

I was diagnosed with ITP at the age of 4 years and have had my spleen removed at the age of 13. I am now 29.

My fiance and i fell pregnant the first time in 2012, and we were thrilled as anyone can imagine. I miscarried a week after i found out that we were expecting. We were devastated and it took us 2 years to conceive again.

I feel pregnant and found out on our 8 year anniversary that we are definitely going to have a baby.

|I went for my first scan and the ultrasound confirmed that i was 6 weeks and 4 days pregnant.

everything went well. I was very sick for a few days with nausea, but i was happy to feel that way, because it is a good sign, as i was told.

On the 5 October 2014 i was swimming and got out to go to the loo.
the toilet was filled with blood. we rushed to the hospital and the doctor on duty told us that it could be a bladder infection.
the following morning we went to the doc and he did an ultrasound and there was no heartbeat, again.

I could not believe that i would have to go through another miscarriage. our hearts were broken

I went in the Wednesday to have a D & C done. I was 12 weeks.

I now still have pain and it has been a week but the doc said that the pain will eventually go away, it was because i was so far.

he also told me that because of the ITP, it might or might not happen again.
He said that the antibodies in my blood are attacking the blood of the fetus.

PLEASE, can some one help me with more direct answers if I will EVER be able to conceive and carry the baby full term.

I am shattered. I want to be a parent more than anything in this world.

PLEASE HELP

My platelet count came back this morning at 70

Frittes:

I am so sorry to hear about the loss of the babies. I can't imagine how hard that would be.

I do not particularly like the explanation that the doctor gave you. ITP does not attack the blood in that way. Most women with ITP do not have trouble conceiving or carrying a baby. I would suggest that you get a good Hemo or OB and have some testing done. Some people with ITP can have something called Antiphospholipid Syndrome. It is an autoimmune disorder that can cause miscarriage, and low platelets can be a symptom. If you do have it, you would need aspirin or blood thinners throughout the pregnancy to carry to full term. You may not have APS but it's good to rule it out (or get treated if you do test positive).

APS and Pregnancy Complications

Women with APS may have difficulties with pregnancy. During pregnancy, women are at higher risk of developing blood clots and preeclampsia. In APS, pregnancies are thought to be lost because blood clots form in the placenta and starve the baby of nutrition. Some women may have trouble getting pregnant, while others may experience repeated miscarriages. Blood clots that develop in the placenta can cause fetal growth problems, fetal distress, preterm birth, or pregnancy loss.

Expert care and close monitoring of the pregnancy is essential by a doctor knowledgeable about APS. During pregnancy, physicians may recommend low doses of aspirin and daily injections of the blood thinning drug, heparin. This gives the fetus about an 80% chance of survival, a drastic improvement from the 1980's when fetal survival was around 20%. The therapy is started at the beginning of pregnancy and halted just before delivery to reduce the risk of bleeding during childbirth. Soon after birth, the treatment resumes for about six weeks because of an increased risk for clotting in the postpartum period. In a more serious case preeclampsia may set in towards the end of pregnancy and a planned premature birth may be necessary. Heparin can cause bone loss, so women may need to take additional calcium during pregnancy. In addition, women need to be monitored for development of a low platelet count.

Over the long term, many doctors recommend women continue to take a low dose of aspirin to reduce the risk of developing dangerous blood clots. Many women with APS are unaware they have the condition, but it can be diagnosed with a blood test. Doctors may consider the diagnosis when a woman has repeated, unexplained pregnancy loss.

If you are trying to get pregnant or are pregnant it is very important to let your doctor know immediately. Continued use of warfarin may cause birth defects. The doctor will change your medication to a different blood thinner that is safe. Using proper treatment, women with APS have about the same risks as other women during pregnancy.

APS pregnancies are not normal. Normal pregnancy is 40 weeks. In APS, it is more common to deliver the baby between 30-35 weeks, and between 3-5 pounds. Heparin protects the placenta partially, but not fully so that the baby gets enough nutrition to survive longer in the mother. Once born, the babies do fine.

Many women who have problems with APS during pregnancy are completely fine when not pregnant. Others do go on to develop problems with clotting. Currently there is no way of telling which women will be unlucky, until a clot actually occurs.

Infertility has also been linked to antiphospholipid antibodies. Testing for these antibodies is becoming routine in infertility clinics.

People with antiphospholipid antibodies have an increased risk of developing one or more of the following problems:

Blood clots in veins, particularly deep vein thrombosis (DVT)
Blood clots that go to the lungs (pulmonary embolism)
Blood clots in arteries
Miscarriages – these can occur at any stage of pregnancy but are most common in the late first trimester or early second trimester
Pre-eclampsia, eclampsia, fetal growth retardation, premature delivery
Heart attacks, angina
Strokes
Brief stroke-like episodes called transient ischemic attacks (TIAs), for example, loss of vision
Decreased levels of platelets (small blood cells involved in blood clotting)
Heart valve problems, sometimes requiring valve surgery or valve replacement
Persistent or transient blotchy, lacy bluish rash (livedo reticularis)
Skin ulcers, most commonly on the legs or feet
“Catastrophic” APS – a very rare, life-threatening syndrome in which clots form in small blood vessels of multiple organs (such as heart, lungs, brain, kidneys)

www.apsfa.org/aps.htm#9

Hi Frittes,

Very sorry that you have to go through this My heart goes out to you. When I was receiving IVIG treatment at the hospital during my pregnancy I spoke to a pregnant lady that didn't have ITP but had a disease that her anti-bodies were attacking the baby's platelets. When she was not pregnant she was not sick. The treatment that she was receiving to avoid internal bleeding in the baby was also IVIG. I'm not sure what the disease's name was but I was able to find this: www.pdsa.org/resources/other-platelet-disorders.html

The disease sounds like Fetal Alloimmune Thrombocytopenic Purpura (FAITP, FAIT). It could be totally unrelated to the fact that you are sick. It's worth looking into and asking your hematologist if this is what he meant. But I agree with Sandi...it would not be the ITP by itself that would cause it. APS could be another possibility as well as she's mentioned.

Good luck and don't give up. I hope that you find answers.