Thread by @angryhacademic

wee update:
had a couple of pretty good weeks which has surprised me. everything in life is tolerable. still worse than before my last relapse, but if life stays like this, i can work around it. tho i usually feel "good" pre-relapse, so hoping it's not the calm before the storm

had TWO dr apps this week:
1. at the nutrition clinic: anaemia has resolved so i can stop iron supps, just got some follow up apps to check my haemoglobin, B12 etc stay stable

2. GP: spoke to advanced nurse practitioner. i was sorta ready to put up a bit of a fight as it was...

to discuss tests & meds recommended by a private dr. she was absolutely lovely tho, & shocked how much ive been suffering

- agreed to D-dimer: if elevated 1 month after anticoagulation ends I may be indicated for longer term anticoagulation as i have a high risk of further clots

- agreed to fludrocortisone (YAY!)

- agreed to increasing famotidine (from 20 to 40 mg/d)

- didn't agree to steroids, but said i can call back if i relapse

- didn't agree to melatonin but not at all shocked by that, esp as we asked for 9 mg!

- agreed to tests for antiphospholipid tests but after discussing with a GP, they werent keen on doing things piecemeal so referred to haematology, should be in 2-3 weeks
bit concerned as ive heard haematology arent up to speed on the type of clotting seen post-vaccine
#TeamClots

but hopefully (if i need them) the solution will be something standard (like APS or DASH score)

So overall, very happy with that outcome and glad they were happy to help like this

i'll add also that the nurse COMPLIMENTED me on being a well read & "clearly very intelligent" patient & she REALLY listened to my concerns & explained things well
i cant stress enough how much of a difference medical professionals appreciating patient expertise makes
#MedTwitter

simply by listening and explaining her POV compassionately i came away content despite not getting everything i was hoping for. if the practitioner was dismissive, we could have had the VERY SAME OUTCOME but i would feel belittled, angry, and gaslit

#MedTwitter

lastly, some weird blood results
in A&E in Dec, my WBC were slightly high. Sort of expected in that situation & werent alarmingly high


Bloods yesterday: they havent changed much, & now my neutrophils are slightly elevated too with slightly low eosinophils

(urea also a bit low in both measures, assuming low protein diet)

No signs of current infection, and as above, my general post-vax symptoms are "good"

maybe immunostimulation is helping me:
but no idea why it's happening (PCR yesterday was negative too)

will see if they calm down, and will discuss with haematology but ideas welcome about wtf my immune system is doing (beyond the possibility that there is some low level infection). in terms of potential immune modulators, im on loratidine, famotidine, ketotifen, statins, aspirin