Has anyone actually experienced inter... - ITP Support Assoc...

ITP Support Association
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Has anyone actually experienced internal bleeding?

conquerator2
conquerator2

I am asking, because this is usually the most prevalent and looming threat that doctors like to point out. Internal, or more specifically cranial bleeding can be deadly but has anyone actually experienced it?

I have read one case of stomach bleeding (not deadly) and two cases of brain bleeding (deadly, but both infants) and outside of this, it seems hard to find (which is good, don't get me wrong).

On one hand, I understand why doctors bring it out; for one they need to double-check themselves and make sure you do know about the dangers.

On the other, my lowest has been 1, I've been hospitalized thrice and aside from being in a safe, controlled environment, there's really no benefit as all current medications can be administered without hospitalization.

Lastly, I do understand that ITP and symptoms are highly individual. Some people get symptoms as soon as their platelets drop below 50. I've been fortunate that even when I reached my lowest (1) the worst I had were bleeding sensitivity (nose, bruises but no actual bleeding), one case of bleeding (a small bloodstain I found in the morning on my pillow, with a dried bruise in my ear) and general fatigue, with a very slight head ache sometimes.

So in conclusion, I understand why doctors stick to guidelines and why hospitalization (in my case with 19 and later 3 and 1.6) is done. However, aside from injuries I wanted to gauge how often these steps are actually justified (including emergencies, if any were had) and then the question of the hospital stay itself which I usually find stressful and mentally demanding (the return home afterwards is very rewarding though).

I know this is a somewhat sensitive topic, but I'd really be curios to see what experience others had and how they feel about it. I know some people decided to completely forego this life style and stop going to doctors altogether and I am somewhat partial to choosing that path myself... Thank you for participating :)

14 Replies
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Hi my lowest count has been 28 so not too bad. I have never been on medication and don’t intend to. I have a private haematologist that I go to see if I feel I need to the last time I went was November 2017. I have monthly blood tests and if I have a lot of bruising I have extra blood tests and if under 30 weekly blood tests I was taking a cocktail of vitamins and I was averaging 42 i decided to stop them and that’s when my count dropped to 28 so I took them again and blood went back to 50. I have decided to have a parasite cleanse as I have heard that can help some people so will update when that is completed

I was admitted to hospital with a count of 2. I told the doctor I must be the healthiest patient in the hospital as I felt 100% normal apart from one small bruise and a couple of blisters in my mouth. I got up and dressed at 8 o’clock every morning and had a walk rount the hospital. In the afternoon after the doctors rounds I would meet my wife in the hospital coffee shop. The doctor said he was glad to see I was not in bed thinking I was ill, but to be careful and not leave the hospital incase something happened.

They released me after a week with a count of 12, now 4 years on Eltrombopag and have a count around 150.

So my platelet level for bruises is below 12. Would I stop medication and not take my doctors advise, no.

That's a similar story to admission as well. I am also on Eltrombopag now, on 50 mg (lowering the dose not happening for now). At the time it did feel somewhat weird to be in a hospital with similar symptoms, so they did three times. Last time even when I had 1 they gave me an infusion of steroids and Nplate and sent me home. That was considerably nicer :) Though steroid therapy (3 days of high doses) was pretty tough the first time :D

I have been on 50mg Eltrombopag for 4 years now. Doctor has discussed lowering the dose but he is concerned my platelets will collapse back to 0 and that Eltrombopag my not work second time.

I have not really had any side effects to 4 years of Eltrombopag but I am concerned about what it is doing to my body long term. However it is allowing me to lead a completely normal and active life.

That does make sense. I believe the recommended use should not exceed 1 year at a time but since it's helping you it's probably simple because it's a new drug and they might not be sure what long term effects it might have. Might as well have none, though! It's been the most pleasant treatment for me so far but we'll see how long it remains effective for me. NPlate certainly provides more of a one time boost though (1 - 450+ in a week, but then followed by a drop on week 2)

Great question . Thank you. I am not a bleeder. Lowest count 8. No hospital. Now ritux.

I've had ITP 15+ years, have only had one nosebleed, on no medication except for blood pressure. Counts from 0 - 80 and never been hospitalised but I would never ignore any doctors advice or question medication as my father died from internal bleeding 40 years ago (no idea if it was ITP or not but he suffered internal bleeding for 30 years before he died).

conquerator2
conquerator2
in reply to Morgan

I am sorry to hear that Morgan. Were there symptoms in your father's case?

No he would bleed internally every 5 - 10 years and be hospitalized up to 6 months each time, maybe from a plane crash in the 2nd world war, never had an official diagnosis to my knowledge, had his spleen removed, Banti's disease was mentioned as a possibility in early medical papers but we had nothing more up to date. He was laying a carpet when he had the final bleed so I wouldn't advise anybody to do heavy lifting.

conquerator2
conquerator2
in reply to Morgan

Thank you for sharing this!

Hi, you do know that bruising is BLEEDING right and can drop your hemoglobin and hematocrit significantly! In my case fall of 1 foot on a carpeted floor resulted in a 0.9gm drop in hemoglobin over a 12 hour period (1gm drop is equivalent to 500ml blood loss). With out intervention, I continue to bleed for three days. I went to ER and received 3 units of random platelets ( HLA matched would have been better), to stop further bleeding. I have labs drawn weekly before my Nplate injection thus I have very accurate records.

Had I hit my head, a 400ml blood loss in an enclosed area (cranium), would have resulted in severe brain injury or death. You must live in UK and a platelet count of 1 means 1000, my lowest 5,000 during Rituxan treatment and I received by weekly platelets. I live in Chicago, Il USA our doctors are moore aggressive in preventing brain bleeds. Be well:) Georgia

See, it clearly depends on how an individual's body can handle this. Your answer is valuable to see how different things can be. It's also worth pointing out that one's body can compensate for the loss in number in size. My platelets are up to twice as big when low compared to higher levels (7 to 14+) which might be helping too.

I've also wondered about internal bleeding and bleeding in the brain - I've always assumed that if I had bleeding in my brain I would have a severe headache. When I asked my rheumatologist she said you could have a slow brain bleed where the symptoms won't be as noticeable. I've been hospitalized twice for low platelets - the first time I was at 5 and the second at 18 - in both cases I was taking all my medication as prescribed and didn't really have any symptoms either - just petechiae when I was at 5. In fact, the day before I went to the ER I was at an amusement park, going on all the rides so I probably could've really hurt myself. I think the best thing is to familiarize yourself with your own symptoms.

According to a very prestigious, local hematologist (who I will not name, but let's just say she runs one of the highest doctoral positions there are, and has for years now) the body is able to keep the internal synthesis in tact down to 1 / 1,000 and prevent internal bleeding. This was shown through an internal observation trial (so nothing official you can read, unfortunately :/). When platelets drop below 1,000 however, this is no longer true and internal bleeding may occur. Granted, I think there are people who might have had bleeding with higher values, but this gives me personally a peace of mind since my platelets did drop down to 1k and I am still here.

So just an interesting tidbit I suppose.

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