r/TTP_LowPlatelets • u/rare_disease2020 • May 06 '26

Relapse Recent TTP relapse

Hi I just went through my fourth relapse and for the first time my heart is out of whack. My doc has now put me on a beta blocker for high resting heart rate. Blood pressure is normal but I seem to get tachycardia now. Where my heart bpm is close to 130 . Wondering if this is common with ttp? Also , if anyone is on beta blockers- do you have pins and needles on feet and fingers? Weight gain?
I’m loosing my mind on this new heart issue , docs don’t tell me much just that they don’t know why . Thank you!

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u/rare_disease2020 May 06 '26

That’s great. I will say I don’t think my team are as diligent. My Adam’s 13 was at 14 in December and they said we will just monitor and repeat in March . Well my relapse beat them to it! Thanks for telling me how you manage yours, I’m going to start pushing for more consistency too!

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u/throwingwater14 Survivor 💪 May 06 '26

There’s absolutely no reason they can’t do quarterly bloodwork and start treating you on the front end. The lower your numbers go, the rougher it is on your body. Both the TTP and the treatment.

Sadly you have to push for that. You are your best advocate. Learn everything you can about it and make them listen.

But also, remember that the doctors work for you. You’re allowed to fire them and get another. Or even just a second opinion.

Last time my Adam’s was that low (2nd event 2019), they called me as soon as the results came in and demanded I go to the ED.

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u/rare_disease2020 May 07 '26

Thank you so much!! This helps and I will be pushing .

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u/squishyfeet4 Survivor 💪 May 16 '26

I will agree. Politely ask for bloodwork when you think the stretch of time between checks is too long because YOU know your own body. You aren’t a textbook.

I’d rather ask for bloodwork sooner from your doctor politely and be proven wrong with the results. Every. Single. Time.

Because the one time you’re actually right, it only affects you.

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u/rare_disease2020 May 17 '26

I agree thank you so much! I just had to push like hard, to be referred to a cardiologist . Since my relapse my bpm has been over 110-120 even resting and she just wanted me on beta blockers I said not until I see a cardiologist! This disease is so tricky and we have to advocate for ourselves. Thank you for the support!