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Re : New here- long term effects of HELLP?

Posted: Sat Jun 13, 2009 01:39 am
by annegarrett
Just jumping in--I had HELLP with my third (96) and preeclampsia with my fourth (99) and in very early 2000 I was diagnosed with an autoimmune disorder (sarcoidosis). When I first suggested my sarcoidosis might have been why I got preeclampsia/variants in three of the four pregnancies, my very excellent perinatologist pooh-poohed the idea (even though we knew Lupus, another autoimmune disease, was a risk factor). Fast forward--we are good friends and he rescinded that early opinion and now believes my autoimmune disorder (inflammed system) was what set the preeclampsia/HELLP in motion. Autoimmune disorders are hard to diagnose. I had a lung biopsy in 2000 and a few years later saw a new doctor who informed me I had NO issues whatsoever (my lungs were normal). But I've been sick since then so we know I do...and the lung biopsy said otherwise...my point is that my underlying issue is what made me sick during pregnancy.

Am very sorry to hear about your losses. I had a loss years ago and wonder now if there is a connection...

I'd actually add to check out the American Autoimmune and Related Disease Association: http://www.aarda.org/patient_information.php

Feel free to write us privately or on the forum.

Re : New here- long term effects of HELLP?

Posted: Thu Jun 11, 2009 02:27 pm
by l_scheeler
Thank you all for your responses. I think my losses were probably a "symptom" of an underlying AI condition as well. My primary care doctor made the referral and appt. for me to see a rheumatologist just yesterday. She wasn't sure whether to send me to the rheuamatologist or hemotologist. Hopefully I am on the right path with the correct specialist now! My appt. isn't until next month and I'm sure I'll have a ton of questions then!

Thanks again!

Re : New here- long term effects of HELLP?

Posted: Thu Jun 11, 2009 01:04 pm
by bonnie
I am so sorry for your losses.

As both Caryn and Catherine have said, I do think that you should ask to see a rheumatologist (or an internist) to check for any underlying disorder. An elevated cRP (c-reative protein) indicates some level of inflammation, but doesn't specify what the cause of the inflammation is.

Again, I am so sorry for your losses.
Bonnie

Re : New here- long term effects of HELLP?

Posted: Thu Jun 11, 2009 11:41 am
by caryn
I, too, would be more inclined to think that the HELLP and the recurrent late pregnancy losses were more likely related to some sort of underlying condition that only causes you problems when you're pregnant.

Inflammation markers and borderline lupus might mean that you've got an immune system that's chronically pissed off, for whatever reason (genetics? an autoimmune condition like psoriasis?) and that could compromise the ability of the placenta to implant properly and stay implanted, since that requires very complex negotiations between the mother's body and the placenta.

Do you have a MFM who was involved with your births and has your records? It might be possible to get somewhere working with that doctor, even though you're not pregnant, because they have more experience hunting down these underlying conditions when they're related to pregnancy outcome.

And then, as Catherine says, a rheumatologist would be excellent.

Re : New here- long term effects of HELLP?

Posted: Thu Jun 11, 2009 00:45 am
by catherine
Hi Laura and welcome to our forums. I'm so sorry that along with the joy of your son, you've had to experience so much heart-wrenching loss.

Usually recovery from HELLP is rapid and complete. That's because livers regenerate well (which is why they transplant so well) and kidneys come with an amazing reserve which means that even with damage, there's enough capacity to keep us running for years. That said, some women "unmask" their future "chronic" hypertension, which essentially means that they've "fast forwarded" to the hypertension that was somewhat pre-destined. Are you still hypertensive, or did your BP eventually go back to normal? Beyond that, it's becoming sadly clear that women who experience an episode of preeclampsia and/or HELLP are at quite elevated risk of cardiovascular problems in life, possibly we did a bit of a number on our piping and it bites back as we get older!

That said, I'm wondering if your HELLP syndrome, combined with your history of pregnancy loss, might not be a symptom rather than the cause of your current health issues? The reason that I mention this, is that sometimes it can be a first "warning sign". When I had HELLP my MFM screened me for Lupus and some other auto-immune syndromes just for this reason. I know that we have other posters who have active auto-immune issues and who have only had sucessful pregnancies when this has been effectively controlled. Consequently, if I were in your situation I think I would be asking my primary care provider for a referral to a rheumatologist who really specialize in auto-immune disease syndromes (not just arthritis).

Hopefully, some of the posters with these kinds of issues will join in soon. Let us know what you find out....

New here- long term effects of HELLP?

Posted: Tue Jun 09, 2009 02:32 pm
by l_scheeler
Hi! I experienced PE & HELLP in Feb. 2004 with my 3rd pg. and only living child. He was delivered at 31wk5d, weighing in at 2lb, 10oz. Thankfully he was and still is healthy! He spent only 4 weeks in NICU and came home a month before my EDD!! In Nov. 2004, I got a disturbing call from my primary dr. that my liver enzymes were elevated and to stop taking bp medication. Enzymes returned to normal after stopping medicine. We assumed the elevation was due to meds. Now 5 years later labs show elevated c-reactive protein (CRP). I'm told this is a marker for inflammation or infection of which I have neither. Blood worked tested borderline for Lupus and I have ALWAYS tested negative for any type of clotting disorder even though I clearly have something going on (while pg. anyway). I believe that this may all go back to the HELLP and my doctor is beginning to think so too. She is trying to figure out what specialist I should see next. I haven't been able to find a lot of information about the long term effects of HELLP in mothers. I'm wondering if anyone else has had unexplainable problems or elevations in blood work long after delivery?

Sorry, this is sorta scattered, I was trying to keep it short!

Laura

~Joey~ 11/9/00- 20wks & ~Makaylin~ 2/19/03- 23wks both lost to placental clotting issues

DS 2/18/04 born 30wks&5d due to PE & HELLP

~Ryley~ 8/15/07- 20wks, again due to clotting issues despite daily fragmin injections & baby asprin