I was diagnosed with ITP in March 2012. I've tried almost every treatment under the sun. Nothing really works without creating a new issue. Just taking it all one day at a time!
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I've had ITP since March 2012. I've been chronic since 2014. My counts are usually all over the place. But without treatment my baseline is between 6k - 12k without being symptomatic save bleeding gums when I brush.
I, also, have a disorder called May-Thurner's Syndrome that is a compression of the iliac vein in my left leg that causes clots. Went into the hospital in August of 2019 for that. After I came out from that my symptoms have been INSANE. Periods are simply absurd. I can't leave my house when on my period because of the flow. It isn't just a flow it's a deluge. Including massive clots. It seems as if my period takes what little platelets I have and says, "these are mine now." I lose a tremendous amount of blood this way.
In February of this year (pre-covid) I had my period for almost a month. Was soaking through a pad about every hour. I was also an idiot and went to a renaissance festival. because I had been cooped up in my house due to bleeding so much. I passed out in a port-a-potty and my fiance has to call the emergency responders onsite. Yes, I was an absolute idiot, I know. I was, at the time, out of work due to a company lay off (pre-covid) with no insurance). I was taken in an ambulance to the hospital where my CBC came back with a count of 3k (I honestly thought they'd be at 0) and my hemoglobin was 6. Needless to say, they kept me overnight. Got my platelets to 30, gave me a transfusion of platelets and blood and sent me home.
Now, many months later, a new job with new insurance and I am Iron-deficient Anemic on 65mgs of iron 2x a day. Appointments with Hematologist is coming next week and then gynecologist in November. I've already discussed with my Primary care physician my desire to have a uterine ablation. She is on board with it as long as my hematologist and gynecologist is as well...so fingers crossed and prayers please.
I'm not sure why my period all of a sudden decided to be unmanageable. Maybe because I'm closing in on 40 next year? Who knows.
Just needed to vent to some people who know what I'm going through. I hope everyone is healthy as can be and in good spirits. <3
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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Sounds dreadful. May well be hormone relate. Fortunately I'd had my menopause by the time I joined the ITP community.
Are you allowed to take TXA with your clotting problem?
I wanted to chime in because before I was diagnosed my periods were exactly as you described! Once I was diagnosed, I was able to correlate heavy periods to low platelets. Some months my period was super light and my platelets at that time happened to be higher (not normal levels, mind you, just closer to 50K+) My hematologist wanted to have me do the ferritin(?) IV treatments for the anemia but I declined and decided to opt for supplements. I have felt much better, but that could also be because my platelets have stabilized to a normal count lately. Anyways, I do hope your periods get better because that is no way to live!! I used to dread it...12+ days of hell a month, no thank you!
I had a similar experience. My period lasted a few weeks with heavy bleeding and clotting similar to yours. I was also peeing blood. When my platelets were brought up my period went back to normal. I had two iron (ferritin) infusions to treat the anemia. Anemia can definitely bring you down!
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