*update* Am I overreacting about blood disorder?

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here
shadow2356
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Re : *update* Am I overreacting about blood disorder?

Postby shadow2356 » Fri Sep 05, 2008 11:04 pm

quote:I could finally blame the pre-e/HELLP on something, and now I still can't do that. it is like I am back to square one.

I felt the same way after my preconception consult when they found nothing wrong. I figured if they found something we could treat it and move on. Now what? The MFM doctor I went to said on face value the risk is 30 - 40 % for me. On the flip side that means the liklihood of not getting it is 60 - 70 %. Not too bad when you look at it that way. Although, if I do get pregnant again I am sure I will be scared to death the whole time.

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bordergurl72
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Re : *update* Am I overreacting about blood disorder?

Postby bordergurl72 » Fri Sep 05, 2008 02:19 pm

I just got a call from the doctor's nurse with my results, and she said they were negative! I was very shocked, and didn't expect to hear that. She told me the IgG and IgM numbers, and they were negative. I even had her repeat it, and made sure the MFM saw the results as well.

I know the MFM said he thought it would be negative since all my other results were negative and there were no clots found, but I really thought it would comeback the same as before (which was borderline)

Anyway...I guess I am kind of back to where I was. After I left my pre-conception consult, with him telling me I had a 30% chance of getting it again..I told myself and DH...if it is positive for ACA, we are making the appointment for the big V, and if negative, I was going to find another MFM to get second opinion. So, I am still on the fence.

Thank you everyone for helping me with your advice and feedback this last week, it was very stressful at times. One thing that I felt comfortable about with an ACA diagnosis was that I could finally blame the pre-e/HELLP on something, and now I still can't do that. it is like I am back to square one.

deerhart
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Re : *update* Am I overreacting about blood disorder?

Postby deerhart » Tue Sep 02, 2008 05:17 pm

Well lets just say that my ERISA numbers were super super high (we are talking double of normal on many of them and one over triple the high normal) and my hematologists recommendation for treatment was NOTHING. That's right nothing, nada, zilch. Other then in pregnancy, I am asymptomatic and treatment would not really do anything (there are no symptoms to treat). She did recommend no more kids. In fact my numbers were so bad that she doubled checked with me that my file was correct and that I had 2 living children born after 35 weeks (her words, not mine, my numbers were so bad I should never had carried either pregnancy to viability, go home, hug your kids, you have two little medical miracles)

Yes I could be a walking time bomb, but like you I had no clots noticeable in my placenta (they believe they were all in my veins and such). Thankfully I had never been on birth control so I have never had a reaction to it (and never will be on birth control because of my test results) and I haven't had any other "symptoms" except for excessive clotting during my cycles (always have probably always will do to the disorder).

I spoke at length with my hematologist and she said that without having active symptoms, the risks of the treatments would most likely outweigh any benefit I would have. Considering my age (I was 26 at the time), lack of symptoms, the ever decreasing likelihood of more children (my husband did get snipped shortly thereafter) and no other thrombosis events I could sit and wait for something to happen, if it ever would.

With that I do take precautions (ie getting up and stretching etc) as most people should to help prevent DVT's and I am aware of the signs and symptoms of a blood clot, but other then that I just go on, again symptom free. I would never know I had this if I hadn't of had problems in both pregnancies.

The hematologist I saw was well aware of blood clotting disorders and pregnancy. She is the lady all the docs in my area tend to send their reoccurring miscarriage ladies too. I was the first one she ran into though that had PE and wanted tested for blood clotting disorders (now this was back in 2003 and the info connecting the two was only about 2 years old). It took her about 10 minutes of research to find the info and agree to run the tests.

Again, you will probably get different answers from different docs, but also from person to person. Your not just looking at the condition itself, but also your personal history and what makes sense for you. While these conditions can raise one's chance at a stroke, there is more to look at then just the blood clotting disorder. You must also look at the general health of the patient, any other symptoms, other lab tests, blood pressure etc..

kara
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Re : *update* Am I overreacting about blood disorder?

Postby kara » Tue Sep 02, 2008 12:49 am

I see a rheumatologist, too. I would see a larger city doctor....Milwaukee, Madison or Chicago. If you want my docs names, send me an email.

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Re : *update* Am I overreacting about blood disorder?

Postby dja » Tue Sep 02, 2008 01:14 am

Hi there. I just wanted to contribute my experience to all this. I found the whole diagnosis of a clotting disorder to be distressing and confusing. I have ACA + and positive for LA. But my levels of ACA were sort of moderate and there was some other oddball indicator (speckling?) that resulted in my ending up seeing a rheumatologist. What he explained to me was that there wasn't a huge amount of research out there on women with my clotting issues, no prior clotting problems, but an early pregnancy loss. He ended up recommending long-term blood thinner treatments, but admitted that other rheumes might see the situation differently. I hope you can find the right specialist to help you understand what is going on. Best of luck!

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bordergurl72
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Re : *update* Am I overreacting about blood disorder?

Postby bordergurl72 » Mon Sep 01, 2008 10:55 pm

Kara...

Thank you so much for the reply. I was super calm about it, until yesterday when my friend started telling me about her SIL and I looked online, and then all bets were off, and I was super anxiety-ridden. And I haven't been that way in a while, and it is no fun :( Especially when I hear I should take baby aspirin asap. And as you said, Kara, I really don't want to take anything until I speak to a Dr. I am very weary about taking any medication. I took the pill for 17 years, but quit after my daughter, and reading the side effects after 17 years of taking them! I won't take anything unless I really have to. Even cold medicine freaks me out.

Kara, what type of doctor do you see for your LA? A hematologist?

I am not sure of the number, I actually did not ask my Dr on purpose, because I know how crazy and obsessive I would get, and look it up. I have been down that road before, dissecting the numbers of a blood test result only to find out later I didn't need to stress about it. Therefore, I don't want to know, until this blood test result comes back.

Ok, so here is a question I need some opinions too...assuming, this does come back positive as the previous one did...and I make an appointment with a hematologist...do I do to one at a big city teaching hospital, or a local one in my small town? I won't name specific hospitals or anything...I will just say, we recently move from Chicago (where all my current Drs, including MFM and OB are) to a town just over the Wisconsin border (Kenosha). I am sure there are hematologists here, and it would be tons of more convenient, but since ACA is not very well-known, do you think I would be better off doing the drive, paying the crazy fee in parking, and going to a big city Dr? We are actually planning on moving back to the city in the Spring..so I guess if I go to a Chicago Dr, I won't have to switch later <----ok, maybe I answered my own question.

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Re : *update* Am I overreacting about blood disorder?

Postby kara » Mon Sep 01, 2008 10:27 pm

Hey Anne,

Take a deep breathe. Even with a slightly elevated ACA, they are probably not too concerned (tho I'm not a doc), especially considering you got as far in pregnancy as you did, and because there were no obvious clots in the placenta, and assuming you haven't had recurrent miscarriage or blood clots outside of pregnancy.

As for the baby aspirin....please do talk to a doctor first. False positive tests can happen. The lab in Utah is one of the best labs for these tests, but even they can make mistakes. Also, certain meds and even pregnancy hormones can throw the sensitive tests off. Even a slightly elevated ACA doesn't mean you'll have a blood clot outside of pregnancy. I have lupus anticoagulant that ranges from really whacky to mildly elevated, and no treatment is prescribed, as I haven't had any problems outside of pregnancy. Often it's only during pregnancy that a slightly elevated level will cause problems (because pregnancy is also a hypercoaguable state).

I went through all these tests in the last year and a half and the wait is horrible and the anxiety is worse. If your doc thought you were in danger he would have prescribed something.

So until the results are back try to breathe. I'm very impatient, so it was the longest 3 weeks of my life.

Do you know what number your levels were?
HUGS!

haileysmom
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Re : *update* Am I overreacting about blood disorder?

Postby haileysmom » Mon Sep 01, 2008 07:12 pm

Have you consulted w/ a hematologist? They should be able to go over the disorder w/ you and let you know if you need to start on LDA.

I don't think that just because someone has a clotting disorder that they're on their way to a stroke. I don't know anything about your particular disorder but w/ mine disorder and others, the only time to be be careful is pregnancy since we tend to clot more at that time, and avoid standing/sitting for a very long period of time (6+ hrs). Also no birth control w/ estrogen and no smoking. I don't need to take a LDA daily but I do anyway.

There can be risks w/ LDA as explained by my hematologist. Since it increases bleeding time you may need to wait if surgery is required and some people have stomach issues.

I wouldn't freak out, talk to your Doc and learn more about it.







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bordergurl72
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*update* Am I overreacting about blood disorder?

Postby bordergurl72 » Mon Sep 01, 2008 05:39 pm

I am not pregnant. But I did have a pre-conception consult with an MFM last week.

I know I already posted about it, so I won't bore you...but basically, it looks like I might have ACA...I tested for a bunch of blood clotting disorders last summer, but the Dr said everything was fine. Well, this Dr said that looking at those results, my ACA is only slightly elevated. He is retesting it by sending it to some lab in Utah, but I am pretty sure that is where the first Dr sent them, so I am pretty positive it will come back positive again.

He thinks it might have been a false-positive since I did not have clots in the placenta with my daughter, and no other results came out positive, but I am weary about this.

I am a total worrier, so I tried not to look anything up, but this morning, I couldn't help myself, and now I am in total freak-out mode.

I also spoke to a friend who has a SIL with this, and she told my friend to tell me to start taking baby aspirin asap to prevent a stroke. the MFM didn't tell me to do that yet, and I am nervous to start without speaking to a dr.

On top of this, I realize I also have elevated cholesterol, and have always had high platelets (even though I had HELLP, my platelets did not get dangerously low), so that is making me even more nervous. I feel like I am a walking stroke.heart attack waiting to happen.

I mean, I must of had this ACA since at least last summer since that is when the blood work was taken, and I have been ok so far, but now I am totally freaking.

I have pretty much decided 99.9% that DH will be getting the big V, and no more biological babies are in the cards for us...but I am so worried I will die suddenly and not live to see my daughter grow up, and she will grow up without a mom. This has been my anxiety since the day she was born.

Should I not be freaking out so much about this?

Thanks for reading.


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