Elevated d-dimer

[TorturedSoul]

Hello, it's me again. Something is just confusing me and I wanted to see if anyone had any insight. I definitely have autonomic dysfunction and have probably had it all my life. I pretty much have symptoms every day.  However I've had 2 crashes that have lasted a year each. This past crash was horrible. Feeling of weakness in my limbs every time I ate, suffocating feeling at rest (that eventually was helped by salt water twice a day) extreme lightheadedness regardless of vitals (thank God for acetyl l carnitine and aloha lipoid acid) nausea, hyperventilation episodes, weakness...it felt like my whole system was just shutting down. My breathing was shallow. Limbs felt like jello. And nothing showed up at hospital (went 4 times). The only thing that showed up was an elevated d dimer. So they scanned me head to toe to see why. Of course the radiation worries me but I felt like I was dying. Anyway they never found a clot. They didn't scan me all in one day. This happened over the course of a few months Bc my symptoms were unrelenting. What I can't wrap my head around is why is my d-dimer coming back elevated?  It did when I had a crash a few years ago as well. I always have symptoms on a daily basis but during these crashes I would go back and forth to hospital with extreme symptoms. I don't know how I made it out of this last one. I thought it was the end. I don't know if anyone has any ideas as to why these levels are elevated during crash. In fact in the beginning of this one I had an ache behind my shoulder blade. Night sweats with a heart rate that wouldn't go down  short of breath. Drifting and waking up hyperventilating. D dimer elevated and yet CT scan was clear. What gives?

[Guest KiminOrlando]

My d-dimer is elevated too. They don't know why. They are watching it. It has been years.

[E pots]

On 4/15/2021 at 4:22 PM, TorturedSoul said:

Hello, it's me again. Something is just confusing me and I wanted to see if anyone had any insight. I definitely have autonomic dysfunction and have probably had it all my life. I pretty much have symptoms every day.  However I've had 2 crashes that have lasted a year each. This past crash was horrible. Feeling of weakness in my limbs every time I ate, suffocating feeling at rest (that eventually was helped by salt water twice a day) extreme lightheadedness regardless of vitals (thank God for acetyl l carnitine and aloha lipoid acid) nausea, hyperventilation episodes, weakness...it felt like my whole system was just shutting down. My breathing was shallow. Limbs felt like jello. And nothing showed up at hospital (went 4 times). The only thing that showed up was an elevated d dimer. So they scanned me head to toe to see why. Of course the radiation worries me but I felt like I was dying. Anyway they never found a clot. They didn't scan me all in one day. This happened over the course of a few months Bc my symptoms were unrelenting. What I can't wrap my head around is why is my d-dimer coming back elevated?  It did when I had a crash a few years ago as well. I always have symptoms on a daily basis but during these crashes I would go back and forth to hospital with extreme symptoms. I don't know how I made it out of this last one. I thought it was the end. I don't know if anyone has any ideas as to why these levels are elevated during crash. In fact in the beginning of this one I had an ache behind my shoulder blade. Night sweats with a heart rate that wouldn't go down  short of breath. Drifting and waking up hyperventilating. D dimer elevated and yet CT scan was clear. What gives?

How long to pull out if it?  I'm on 9th week.  Doing 6 liters h2o. Salt. Hard to eat so weak.  

[Pistol]

@E pots - whenever I got that bad I went to ER for IV fluids, which always makes me better. Nothing else would help once I got that bad for that long. 

 

[TorturedSoul]

It took a year for me to get out of the last crash. I don't understand why I have crashes like this every few years. I don't understand why my d-dimer is elevated during these crashes as well. I may have EDS so I was thinking is this vascular (I have some skin symptoms) and the d-dimer is reflecting bleeding that's happening somewhere in my body? Are these crashes because of some sort of internal bleeding. Hemoglobin is always normal though. CT scans are clear. I don't understand what's affecting my blood flow. I don't understand why both of my children are showing symptoms since they were babies/ toddlers they have always displayed symptoms of autonomic dysfunction. This last crash felt like death.  I never knew a person could feel that ill with no diagnosis or clue as to why. Just felt like my blood flow was severely impacted. It felt like blood wasn't reaching my lungs/ brain. I still struggle but nothing like last year. I can only pray it doesn't return to that extent 

[MomtoGiuliana]

So sorry.  I have also had severe crashes every two or so years.  No identifiable trigger.  Between the crashes I feel pretty well.  I agree that is is amazing one can feel this poorly and have something benign.  IV fluids are the only thing that helps, and only bc it keeps me from having to lie down constantly.

I've never had elevated d-dimer that I am aware of.  The only thing that gets out of whack for me is potassium goes a bit low.  Sometimes magnesium too.  And this is despite eating and drinking--no vomiting or diarrhea.

[diamondeyes]

I know I'm very late to this conversation, but wanted to add that I had an elevated D-dimer twice last year and was diagnosed with POTS in August 2022. Docs could never explain why I had the elevated D-dimer, but now I'm thinking maybe it was somehow POTS-related...?

[Pistol]

@diamondeyes Over a year ago I was hospitalized with COVID pneumonia and my D-Dimer was elevated. Directly following the hospitalization I developed a severe auto-immune reaction ( reactive arthritis and vasculitis ) as well as sepsis. I was under the care of an excellent rheumatologist who continued to monitor my labs even after getting better. My D-Dimer stayed elevated along with my inflammation markers for quite a long time but dropped to normal once all of the inflammation was gone. When I researched this I read that D-Dimer is often elevated during inflammatory events despite the absence of clots, and the rheumatologist conformed this. 

Currently there is more and more proof that dysautonomia can be related to problems with the immune system - whether it is auto-immune or from the innate immune system is unclear. So I am wondering if maybe in your case the onset of POTS and the elevated D-Dimer could have been triggered by an infection or inflammatory condition? Maybe you had COVID and did not know it? I am just speculating, of course. 

 

[Diannna]

I have never had COVID , but my D-dimer has been elevated for over 7years now and they say it's because of my fibromyalgia. Clots in my lungs over 20 years ago. None recently, but high d dimer. I just say well that is the weirdness of being me.

[Nin]

On 4/26/2023 at 7:34 AM, Diannna said:

I have never had COVID , but my D-dimer has been elevated for over 7years now and they say it's because of my fibromyalgia. Clots in my lungs over 20 years ago. None recently, but high d dimer. I just say well that is the weirdness of being me.

I've been diagnosed recently with anti phospholipid syndrome which causes blood clots. I also have pots and anti phospholipid syndrome and pots are connected. Just wanted to let you know because it's something to think about

[BaPon]

On 4/15/2021 at 1:22 PM, TorturedSoul said:

Hello, it's me again. Something is just confusing me and I wanted to see if anyone had any insight. I definitely have autonomic dysfunction and have probably had it all my life. I pretty much have symptoms every day.  However I've had 2 crashes that have lasted a year each. This past crash was horrible. Feeling of weakness in my limbs every time I ate, suffocating feeling at rest (that eventually was helped by salt water twice a day) extreme lightheadedness regardless of vitals (thank God for acetyl l carnitine and aloha lipoid acid) nausea, hyperventilation episodes, weakness...it felt like my whole system was just shutting down. My breathing was shallow. Limbs felt like jello. And nothing showed up at hospital (went 4 times). The only thing that showed up was an elevated d dimer. So they scanned me head to toe to see why. Of course the radiation worries me but I felt like I was dying. Anyway they never found a clot. They didn't scan me all in one day. This happened over the course of a few months Bc my symptoms were unrelenting. What I can't wrap my head around is why is my d-dimer coming back elevated?  It did when I had a crash a few years ago as well. I always have symptoms on a daily basis but during these crashes I would go back and forth to hospital with extreme symptoms. I don't know how I made it out of this last one. I thought it was the end. I don't know if anyone has any ideas as to why these levels are elevated during crash. In fact in the beginning of this one I had an ache behind my shoulder blade. Night sweats with a heart rate that wouldn't go down  short of breath. Drifting and waking up hyperventilating. D dimer elevated and yet CT scan was clear. What gives?

Hi. Have you asked them to check your phosphorus levels? I was recently hospitalized with critical low phosphorus. D-dimer was also elevated. But D-dimer is a very nonspecific indicator. It is good when it’s normal. But not very helpful when elevated. Here is an article to I found helpful:

J Am Heart Assoc. 2018 Jul 3; 7(13): e008854. 

Published online 2018 Jun 30. doi: 10.1161/JAHA.118.008854

[little_blue_jay]

On 6/16/2021 at 9:12 AM, MomtoGiuliana said:

 I have also had severe crashes every two or so years.  No identifiable trigger.  

Do you still get these severe crashes every couple years? 

Did you ever identify any trigger(s)?

[MomtoGiuliana]

On 12/27/2023 at 9:28 PM, little_blue_jay said:

Do you still get these severe crashes every couple years? 

Did you ever identify any trigger(s)?

I have not had a crash since 2020 (knock on wood).  I have had episodes of feeling poorly but nothing like the relapses of the past.  I think it could be hormonally mediated.  I am now in menopause.  And honestly feel better than I have felt in years.  I know many people (generally) complain about menopausal symptoms but for me it's been a relief from some symptoms.

[little_blue_jay]

On 12/29/2023 at 9:57 AM, MomtoGiuliana said:

I have not had a crash since 2020 (knock on wood).  I have had episodes of feeling poorly but nothing like the relapses of the past.  I think it could be hormonally mediated.  I am now in menopause.  And honestly feel better than I have felt in years.  I know many people (generally) complain about menopausal symptoms but for me it's been a relief from some symptoms.

Well that's good news! Glad for you! 

But not for me lol  I'm only 47, my mother was still menstruating at 53 so I've potentially got years of this left before I get relief 😅 

[MomtoGiuliana]

On 12/31/2023 at 10:13 PM, little_blue_jay said:

Well that's good news! Glad for you! 

But not for me lol  I'm only 47, my mother was still menstruating at 53 so I've potentially got years of this left before I get relief 😅 

Age 48 and age 50 I had some of the worst most disabling flare ups of my life.  I was not technically in menopause until this year at age 55.

I wish I had advice in retrospect but I don't know what would have helped make it better.