Thread by @taracdennehy

Question for #NEISvoid #SpoonieChat #MedTwitter #TeamClots

Does anyone know what might cause *intermittently* fragile & hard-to-access veins other than differences in medications?
Sometimes I get blood drawn with zero issues, but at other times…

#TW blood, bruising, IVs next:

Photos #1 & 4 are from blood draw attempts. Photo #2 is the only successful IV my entire first week in the hospital. Photo #3 is from a blood pressure cuff seemingly rupturing a blood vessel in my arm.

All of these happened at times my INR & PTT were clotting on the quick side.

This kind of reaction & being an “impossible stick” happens almost every time I’m sick enough to go to the ER, but only rarely when I get blood tests at home/in the community. In fact at home I’ve been a relatively easy stick.

Correlates w/autoimmune flares & reticular patterns.

Only tested once for APL antibodies & was negative.

When tested, INR & (a)PTT are on the fast side, occasionally abnormally fast.

D-dimer almost always high (range ~487-2,681 ug/L FEU); has been consistently elevated since 2011. LDH 258-515 U/L.

I keep asking to test for endothelial damage, do some clotting investigations, etc., but get told it is “too experimental” (because I haven’t had a DVT/VTE—that we know of). [Downside of publicly funded health system.]

I do not have any vasculitis diagnoses, but relapsing polychondritis has a high comorbidity rate with vasculitides and I do have Raynaud’s. And get what looks like livedo-type patterns on my skin.

I really think something is going on with my blood vessels and would like answers.

Oh, and just adding: Not a function of dehydration, temperature, or medications. Because I’ve been an “easy stick” with almost no bruising and an “impossible stick” at every possible combination of all three.

At this point I have a pretty strong hypothesis that something is going on at the micro-level—quite potentially amyloid #microclots. (I can’t rule out having had COVID. I did have a brief but intense upper respiratory infection w/dyspnea in Feb 2020.)

But if I can’t convince someone to do the right tests I’m honestly not sure I’ll get answers. But I’d love any suggestions to add to the differential.