HELLP 7 years ago.. Still Sick. Please Help

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

HELLP 7 years ago.. Still Sick. Please Help

Postby armymp » Sun Jun 30, 2013 11:07 pm

Hello... I had Severe Pre-E and HELLP 7 years ago. I was at 32 weeks and my son was in the NICU for a month. The doctors didn't even bother to tell me I had HELLP. I found out days later when a NICU nurse told me she had had it too.. I had no idea what she was talking about. Turns out I did have it very severe too... nice of them not to even tell me or my husband.
I was doing OK for about the first 6 months after delivery, then my health just started going downhill. I have been to 26 doctors so far and noone can or will even try to help me. I have been laughed at, yelled at, and talked down to by doctors sooooo much. When they can't figure out what is wrong they get mad at me and say I just want to be sick. NO... I was very, very healthy and in the Army before this happened... now I can't even function on most days... why on earth would anyone want to be like this?
I recently found a lady who had HELLP and she told me they should have sent off my placenta for testing after HELLP and they should have done a thrombosis panel.... they didn't do either. They never checked anything else after I was released from the hospital. I went to the VA last year and ask my Gyno if my health problems could be from the HELLP, she said that noone is ever the same after HELLP and that I just have to live with it.... wow.
I'm not living at all right now... I'm just going through the motions to get through life. I'm miserable 99% of the time.
Has anyone else had chronic health problems after HELLP?
I'm desparate to feel better... my son has never known a fun, energetic, happy mother.... it breaks my heart.
Thank You
armymp
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Re: HELLP 7 years ago.. Still Sick. Please Help

Postby MomTimesThree » Wed Jul 03, 2013 02:28 am

I'm sorry you've had such a difficult road since your son was born. I don't have experience with HELLP, but I'm sure one of the many moms here who does will chime in soon. What have your symptoms been? I hope you're able to find the right doctor to listen with an open mind to your concerns and help you find the cause.

Best,
Lauren
2008-Our Baby Girl, PTL born too early at 30w6d, Fought so hard... Forever Loved & Missed
2010- Lil' Bro, Pre-E at 29 weeks... Induced at 36w6d, Born 37w
2012- Lil' Sis, Super-imposed pre-e at 25 weeks, PTL & GD at 35 weeks, Evicted 36w
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Re: HELLP 7 years ago.. Still Sick. Please Help

Postby sarahkm » Wed Jul 03, 2013 10:02 pm

Wow!
Where do you live? I'm in Illinois and can help you find a doctor if you are in this area!
Have you been to see a Maternal Fetal Medicine specialist?
Have you had any blood testing done with the doctors that you have seen? Have they checked for lupus, thyroid issue, or other autoimmune disorder?
Get your records from the hospital. See why they decided it was HELLP syndrome. They should have absolutely not withheld that information from you!

I had HELLP almost 7 years ago and my son was still born due to placental abruption. I ended up in acute kidney failure but my kidneys mostly recovered and I'm now pregnant again. You don't continue to have HELLP syndrome, but there can be long-term problems due to having HELLP syndrome, or there are problems that are uncovered because of HELLP syndrome.

Maybe this website could refer you to a better doctor?

Message me privately if you need to. I'd like to help! Sarah
Sarah (41)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
Expecting again-due date August 16, 2013 (Folic Acid, LDA, Prenatal vitamins, BP meds, Vitamin D, Slow release Iron)
Elias Nathanael born healthy 07/28/2013 at 37 weeks 2 days, 5#11oz. No signs of HELLP or preeclampsia! Tear noticed in placenta after delivery.
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Re: HELLP 7 years ago.. Still Sick. Please Help

Postby armymp » Wed Jul 03, 2013 11:14 pm

Thank you. I have never heard of a Maternal Fetal Specialist. I will look it up. I have spent thousands of dollars testing. I have been tested for all of the common stuff, thyroid, lupus, Lyme, Rheumatoid Arthritis, Sjornes, even Cushings. I was diagnosed with hypothyroidism but when I went back to start my medicine the doctor told me that I wasn't hypothyroid and that I just needed to stop going through McDonald's drive through. When I argued with him and told him I don't even like fast food, he told me that I was subconsciously going through McDonald's drive through. An endocrinologist looked at all of my labs and told me "getting fixed" would fix my problems. Like a dog or something. The doctors here are jerks.
My symptoms are
Extreme Debilitating Fatigue
Heat Intolerance: Headaches, migraine, dizzy, nausea
Sweat all of the time
Muscle Weakness
Joint Pain
Sunlight Sensitivity with eye pain
Hands and feet go numb
Dizzy Spells and lose balance
Feels like bugs are crawling on arms and legs
Painful knot in lower abdomen... much more painful during period
Mood swings
Irritability



I've been DX with
Sleep Apnea
Insulin Resistance
PCOS
Thyroid Goiter and Nodule
Endometrial Hyperplasia
Fatty Liver
Low Progesterone
High Testosterone
Low IGF-1
Low GABA
Low Serotonin

Like I said I have been to a lot of doctors. None of them can put the pieces together. I was perfectly healthy and active before this happened. I actually had to get out of the Army because I couldn't perform anymore. Im so tired of living like this.
Every time I start researching on my own I keep coming back to this...it seems like the HELLP was a huge turning point when all went wrong.
Oh.. I went to the doctors office to get my medical records... I ask several times if my delivery hospital stay was in the records and they said yes. I paid $45 and NONE of the hospital records were in there. It's really like they are trying to hide something.

Thanks again
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Re: HELLP 7 years ago.. Still Sick. Please Help

Postby tree » Thu Jul 04, 2013 03:31 pm

Sorry to hear that you are going through all of this. I had HELLP 4 years ago, and it absolutely sucked. We were very lucky and came out of it quite healthy, eventually. I had many of your symptoms for a couple of years. I went through a bunch of doctors and tests for all of the same autoimmune issues during the first two years after my daughter was born, and they weren't able to find anything either. My liver issues resolved in a couple of months, and my blood pressure went down to "normal" in about the same time. I kept the baby weight (and then some) on during that time, and I decided that it was causing a lot of my problems. I have been much healthier since I lost it. I still have major issues with joint pain, and I will just have to deal with that until it gets bad enough for a diagnosis. I also spent a bunch of time and energy getting my hospital records and trying to find an answer. I think that was all part of a healing process that I probably needed to go through, but it didn't help me get any better physically. There were no magic test results or useful answers in there.

All that said, many of your symptoms could be related to thyroid issues. Many people with thyroid problems have to get tested several times and work with a few doctors to get them sorted out. It might be worth going down that road again. Thyroid problems can make you gain or lose weight uncontrollably, screw up your metabolism, and make you really really depressed.

Now that I am on the other side of it, I have to admit that 90% of my problems with fatigue and sluggishness were due to depression. I refused help for a very long time, and relatively few doctors were willing to suggest that I needed it. Because of that experience, I always recommend talking to someone to find out if that could be part of the problem. I didn't want to do it, but I had to for my daughter and my husband. I am sorry that your doctors have been jerks. That really doesn't help. I hope you can find someone who can help you figure it out. Failing that, I hope you can find a way to reclaim some part of your old life back on your own. I had to take baby steps to get there, but reclaiming my health was totally worth it. I went from 100 mile bike rides and long backpacking trips before I got pregnant to almost dead in nine months. It took me two years after that to try to get healthy again, and I am now feeling at least as fit as I ever have.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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Re: HELLP 7 years ago.. Still Sick. Please Help

Postby sarahkm » Thu Jul 04, 2013 05:40 pm

I guess my response is similar to Teresa's. Many of your symptoms go along with hypothyroidism so I would still pursue further tests and treatment for that. I was also wondering about chronic fatigue syndrome and/or depression to go along with it. There certainly may be something going on with your reproductive hormones too. I was certainly not as active as you or Teresa before I went through HELLP, but I am 20# heavier than before I had Nathanael (and of course before my current pregnancy). I think my endurance and energy level dropped also. I also have been seeing a psychologist for the last 3 years to help me get through some other difficulties in the last 7 years (marriage stress,job loss, deaths in family, husband's job loss, adoption stress, etc., etc.) I was initially diagnosed with depression and tried medication, but the medication caused problems with my blood pressure right away so I never continued it. At this point, just talking with the psychologist (talk therapy) has been enough and I'm in a better place.
I really hope you can find a good doctor to help you. I don't think a Maternal Fetal Medicine Specialist would be the right doctor right now. Probably an endocrinologist. My sister is in TN also (far eastern). Doesn't UT have a medical school?

Please keep us updated! Take care! Sarah
Sarah (41)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
Expecting again-due date August 16, 2013 (Folic Acid, LDA, Prenatal vitamins, BP meds, Vitamin D, Slow release Iron)
Elias Nathanael born healthy 07/28/2013 at 37 weeks 2 days, 5#11oz. No signs of HELLP or preeclampsia! Tear noticed in placenta after delivery.
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Re: HELLP 7 years ago.. Still Sick. Please Help

Postby armymp » Sat Jul 06, 2013 12:54 am

Thanks.. thyroid does make sense but I just can't find a doctor that will consider it because my stupid TSH IS normal. I know all of the other thyroid hormones need to be considered but I can't find a doc that knows that too.... it's really ridiculous. I had Post Partum Depression and got put on antidepressants, it took 8 different ones to find one that even came close to working.... mow I am stuck on them and can't get off. I saw a therapist for a few years after giving birth... it was free at school but I have graduated now. BUT... I have found a lot of research saying that Post Partum Depression can really be Post Partum Thyroiditis but most doctors don't understand that. I have been to 3 Endocrinologist... they all were so rude.... with talking to many people with hormone issues... they all say they hate Endocrinologists.... I have to agree.
I have also seen an Integrative Medicine Doctor and an Osteopath and they both dismissed thyroid. The functional medicine doctor was the one that told me to stop going through McDonald's drive through. He is the leading thyroid doctor in this area too..... nice huh.
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Re: HELLP 7 years ago.. Still Sick. Please Help

Postby tree » Sat Jul 06, 2013 04:00 pm

I am really sorry that you are still going through this. I know it sucks. I felt better after I quit going to doctors and stopped trying to figure it out. I had a little relapse last year, and just the crappy-go-round of feeling terrible, constant medical testing, ER, more waiting rooms, and the expectation of an answer bummed me out beyond all of my expectations. I was able to manage my symptoms and just stop trying to figure it out after six months of doctors and labs this time. I decided put all of that time and energy (and money) when I am feeling ok into going to the gym, riding, skiing, and running again. I feel pretty good most of the time now. It has worked well for me. I don't recommend this approach for everyone. I adopted it from my Mom who has dealt with chronic illness her entire life. She is a complete medical mess, but she doesn't let it mess up her life unless she is actually in the hospital or recovering from it. She reminded me that while chronic illness stinks, you aren't sick all of the time (if you can manage your symptoms) and need to take advantage of the days that you feel good.

I found that the antidepressants made me tired and almost narcoleptic. I really needed them when I was on them, but I could only stand it for a few months. I had to wean off VERY slowly over another two months to avoid the flu-like withdrawal. Talking with a therapist helped tremendously, even for just a short time. Any chance you can find someone? I hate being the person who obviously frustrates most of my doctors. They don't like being stumped either, but that is no excuse for acting like jerks. The therapist I saw helped me get some perspective on dealing with all of that. She also encouraged me to get back to doing the things that I love in order to feel like myself again.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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Re: HELLP 7 years ago.. Still Sick. Please Help

Postby armymp » Sun Jul 07, 2013 03:29 pm

Hey tree, unfortunately I have tried that approach too but I'm slowly feeling worse. I feel like I need to get this figured out to go on. I used to go to the gym everyday and hiked and biked... all kinds of stuff. I have tried several times to go back to the gym... I start slowly and try to work my way up but it has the opposite effect on me now. Whenever I workout I'm basically bed ridden for days after. When I do manage to to force myself to workout I get migraines and dizzy and nausea. Even doing normal everyday tasks like doing the dishes or changing the sheets puts me in bed. I just can't function anymore. So frustrating.

Thanks
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Re: HELLP 7 years ago.. Still Sick. Please Help

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