Tested Positive for Clots...then Negative. Really Worried. HELP please!

[chl_hobbs]

Hi all,

ive just been released from 3 days in hospital. It has been awful.
As some of you know, ive had chest pain (stabbing pain inbetween breasts) for 2 weeks. Ive been back and forth to the gp (who gave me naproxen despite me having inflammation on the stomach). Then during the weekend my right leg started aching and was so painful. It wasnt swollen or red but it hurt a lot at the same time as the chest pain.

So on Monday i was REALLY anxious, and was at the height of a panic attack... so yet again, left on my own (my bf was at work and my baby at her nana's) i rang urgent care and they said 'go to a+e' because i had chest pains. It's weird because i sort of knew theyd say that, it was like i was ringing so theyd give me 'permission' to go.

However, when i got there the dr took me very seriously (good) and said he'd repeat the d-dimer blood test (which id had last week and was negative at 294-just)which can indicate a clot if it's above 300mg (in my local hospital, although ive since read some hospitals use above 500mg as the range). He took blood, which took him several attempts and pain, and i waited for the results thinking if its negative i'll be happy and will go home.

Then a nurse came and weighed me. When i asked her why she said 'we need to see how much of the anti clotting drug to give you because youve tested positive in the d-dimer test'. At that moment i almost collapsed. I was sobbing uncontrollably, telling them i couldnt cope with yet another thing wrong, that i was going to die etc etc.

They wouldnt usually admit people with suspected DVT/PE but my mum rang them and said i mentally wouldnt cope if i was sent home, so they agreed i should stay in overnight and have my scans on my leg and lungs in the morning.

To cut a long story short, my lung VQ scan was negative and so was the leg doppler scan. I was so pleased... until...

I cant stop wondering WHY the d-dimer test has risen and indicated i had clots. It's driving me mad. The dr said that if i had a level of say 900+ he'd be worried, but mine was 358 (58 above norm) and apparently the d-dimer is sometimes non specific as it can be elevated if you have an infection, inflammation or clots.

I stupidly have been googling and found people whove had negative scans and then since died of clots because the scans missed it..and as i have no answers about why i have the chest pain and why my d-dimer was up i still am worrying that i have a clot.

Does anyone have any experience of this? Does anyone know anything of the d-dimer test? I do have a rather large (normal looking) bruise on my thigh that i got at the weekend, could THAT raise the d-dimer..? I just wish i knew, it's like im just waiting to die from it, like i think i'll be back in hospital with it and theyre wrong!! Please please help

Charlotte x

[crystal17]

Hi, ok well I know NOTHING about this kind of thing however I didnt want to just read and ignore it so firstly heres a hug as it must be very distressing

My gut feeling is that it would be the big bruise that may have raised it slightly - and remember it was only slightly raised - if they thought for a minute that you were at risk they wouldn't let you just go home.
All the best x

[chl_hobbs]

Thankyou, im a bit shocked no one else has responded on here as yet, i was going out of my mind last night and wanted some reassurance :( So thankyou for your reply xx

I went to my gp today, he started talking about the weather and i just burst into tears! He said that he'd just been to a meeting recently with a haemotologist and it was about the d-dimer test. He said that when suspected, they have to do one, and that if it is say 900+ then it's almost 100% certain that the person has a clot somewhere. He said that mine at 358 was above the 300 mg range but that it wasnt really that indicative of a clot because of how low it was. He said that in some hospitals the range is 500mg+ and that the haemotologist said that seeing as all sorts of things can cause it to be slightly elevated, the normal range is quite confusing.

Im still very doubtful, i still have the chest pains and in my head im ust waiting for it to kill me. The anxiety from it is making me so dizzy.

XXX

[Sazziesaz]

Hi, I had the same thing happen to me and ended up in A&E and I don't know the number but they were thinking of giving me the anti clotting injection as I was slightly over too, but then decided they thought it was slightly high cause I was fighting a virus. I was petrified as had chest pains and my leg hurt too. I too went home convinced I was going to die!

That was two years ago and now I really believe the chest pains were either caused by a pulled muscle or just plain old anxiety!

I know exactly how you are feeling and am sending you a big hug, I am sure the hospital would not have sent you home if they were even slightly concerned you may have a blood clot.

Hope you are feeling better now

Sarah x

[kingkong]

Hi Charlotte,

I am not a clinical statistician and hence I dont have experience interpreting statistical data associated with clinical tests.
The following might help you with a bit of relief and give you sufficient material to discuss either with your GP or the technicians in the lab.
To start with, I dont know about the specific test you are talking about.

When it comes to data interpretation, we have something called sensitivity. By sensitivty, we mean, how effective a test is in detecting something. I assume most of the clinical tests are 95% sensitive. Then there is another thing called specificity. This means, the test is effective in "not" falsely detecting something, when it is not present. I assume most of the clinical trials are 99% specific.

Depending on the percentage of data of people who actually have a clot ( which I cannot assume), the possibility of an actual clot varies broadly. For example if 1% have a clot, when the test turns out positive, the actual probability that someone has a clot, is around 48%. So half the people who test positive will be false positive.

Then comes the sampling errors etc etc.

One more variable you have to consider is, the linearity. For example, does the level of the change in measurement, change in proportion to the change in inflammation? If it is non-linear, how does it change? For example, does a 3mm inflammation cause an enzyme level at 100, then a 5mm inflammation cause an enzyme level at 200, and a small change in inflamation ( say 5.5mm) cause a massive raise in the enzyme level ( say 500?).

I believe these are not published on the net. Probably you can ask your GP when you visit him next time. That way, you will know if 358 is a concern.
In your case, apart from the inferential tests, you have had direct tests as well. This should corroborate the interpretation offered by the experts.

I dont want to bore you with any more statisitics, but I guess you would have understood how the data is interpreted.

Hope this helps.