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New to ITP, Moderna 5 months 3 days ago #71213

  • PoppyLapine
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Hello! I just wanted to introduce myself and tell my story.
I'm 27 year old female and I was just diagnosed with ITP a month ago.
How I got to that was back on Jan 10 2020 I had to do a routine exam with my family doctor. He asked if I had ever had any bloodwork done before, which I hadn't. He decided I should probably get that and some other tests taken care of, just to be on the safe side.
Unfortunately, it was his last day at my clinic, so once I did those said tests I got passed on to a temp doctor who read my results and then gave the notes to the new permenant doctor who told me my iron was low, which made sense because I had terrible pika. So I got put onto an iron supplement and had to go in for bloodwork 6 months later, then I got my dose lowered and then had to go back in again 6 months later. Which was Jan 20 2021 and as soon as the results came in I was told I needed to do a CBC on Jan 26, then the very next day my doctor called me to let me know my platelets were at 44k and that my platelets had actually been in the same range a year ago, but they hadn't given her the full report, just the notes that the temp doc had left for her. So she told me not to get concerned, but there could be chance of it being nothing or something serious, in any case she wants me to see a hematologist. Of course, I was concerned. So I went and saw my Hema and he ran various tests to rule out everything (the only one he didn't feel the need for was the bone marrow sample test, so we skipped that unless something else comes up) and then finally he had me try the 4 days of dexamethasone, and sure enough on April 7 it raised my platelets to 128k. So then I was officially diagnosed with ITP on April 12. Which after much reseach, I think I may have had ITP for a long time. Ever since I was young I've bruised like a peach, felt fatigue, would have lots of dizzy and feeling clammy spells (plus some other symptoms), which my mom was concerned about when I was a child, but my pediatrician wasn't, and in turn thats why I was never concerned by my symptoms when growing up, thinking they were just normal. Deffinitly feels good to know why I have felt the way I do and what has caused it and how it wasn't just normal.

And now about my exsperiance with the moderna vac so far, on the day I was diagnosed I asked my hemas professional opinion on getting the covid vaccine. He said it will be fine, we'll just do a CBC once a month for 3 months while I'm getting my first and second dose, just to keep watch. Well, got my first dose of moderna on the 4th and then next CBC was the 10th. My platelets dropped to 31k (lowest I've been yet), so got a call yesterday, now I'm going to get CBC weekly till my next appointment with my hema in July. So, that my story so far, it's been a crazy first half of a year for me.

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New to ITP, Moderna 5 months 3 days ago #71214

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Protocol is not to treat unless count is below 30. I wonder how up to date your haemo is with treatment guidelines & would ask for his reasoning and evidence base for giving you steroids with a count of 44.

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New to ITP, Moderna 5 months 3 days ago #71215

  • PoppyLapine
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He said he just wanted to see if it would raise my platelets, that way we knew it will work in the case my platelets dropped to low or if I were going to need surgery in the future for anything my platelets have to be higher to do it, so with just a short steroid treatment we can get them up enough to safely do surgery, but other than those reasons he really doesn't want to use steroids if we can help it. He did inform me 44k was a great range and he didn't want me to do anything to treat my platelets, just monitor.

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New to ITP, Moderna 5 months 2 days ago #71218

  • mrsb04
  • Away
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1886
  • Karma: 7
  • Thank you received: 540
Thank you for that Poppy. Glad to see you are just being monitored

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