Every time I have a blood test I bleed for hours- literally hours. It’s making me phobic about having blood taken.

[Bagelsandbrie]

I will preface this by saying I have a lot of health issues - Addison’s, lupus, sjorgens, asthma etc etc. I take steroids, although not at a very high dose, mostly as a replacement dose for cortisol (Addison’s) so although I suspect steroids may be contributing to this they’re not the main cause. And - my platelets are fine. I have them checked regularly because of my lupus issues.

So why does this happen?! The last time I had a blood test done 3 weeks ago the nurse bunged a plaster and pad on after checking it seemed to have stopped, off I went, got home and it was dripping down my arm. Sat down and put pressure on and elevated my arm. Every time I tried to take the pressure off it would start again. It took 4 hours to stop and I was a nervous wreck worrying it would start again.

This has happened to me quite a few times. Another time I’ve left the doctors and wandered to the shops only to feel my arm is wet, I’ve glanced down and the blood is coming through my coat!

I am getting really stressed because as part of my health issues I have to have regular bloods (every few months) and it’s getting to the point I’m really phobic about it! I’m worried it won’t stop and I’ll have to go to hospital / won’t be able to drive home from hospital if I need a blood test there / blah blah.

Is there anyone who does bloods who can offer some advice or reassurance? The nurse who has done the last one wasn’t worried she just told me to apply pressure and sit still! But surely this isn’t normal?!

That doesn't sound right at all. They should be checking your clotting time and clotting factors.

I'm assuming you aren't on blood thinning medication?

@RavingAnnie

That doesn't sound right at all. They should be checking your clotting time and clotting factors.

I'm assuming you aren't on blood thinning medication?

Thanks for replying.

I am assuming they have. I will double check I think.

Not on any blood thinning meds.

My anxiety over it now is so awful even though it’s been 3 weeks or so since my last one I find myself staring at my arm as if it’s suddenly going to start bleeding again.

I don't see how your platelets can be fine if this is happening, tbh. That or you have some sort of related clotting or anaemia issue.

Have you got a chance to talk it through with your GP? Or is that easier said than done?

I am thinking maybe I should speak to my Gp about it but I have so many problems I feel like they’re just fed up with me.. I keep thinking when I need another test I’ll bring it up then. But maybe I should mention it now. I do have anaemia (which they have never found a proper cause for except linking it to my lupus).

Had this bleeding issue only started since being on steriods, or all your life? Did this happen as a child? If you have given birth, was there any bleeding issues then? Any problems with heavy periods or issues with dental extractions? Does anyone else in your family have the same issue? Do you drink much alcohol?

Von Willebrand is the most common bleeding disorder. It has 3 degrees of severity and those with a milder, level 1, maybe not even know they have it. I'd certainly get it checked.

@Hairyfriend

Had this bleeding issue only started since being on steriods, or all your life? Did this happen as a child? If you have given birth, was there any bleeding issues then? Any problems with heavy periods or issues with dental extractions? Does anyone else in your family have the same issue? Do you drink much alcohol?

Von Willebrand is the most common bleeding disorder. It has 3 degrees of severity and those with a milder, level 1, maybe not even know they have it. I'd certainly get it checked.

That’s interesting. I’ll google.

Never had this as a child. Definitely a recent ish thing, last few years maybe. I’m 41. Diagnosed with everything in 2017 and it’s all gone downhill since then!

I did have a lot of bleeding when I had my son 9 years ago but that was because I had a placenta prévia and had a c section and I lost 2.5 litres of blood and had 2 transfusions. I healed well from the surgery though, no issues with that.

I can’t understand why the nurse(s) aren’t bothered by it.

Have you discussed this your doctor and have they investigated it?
I'm not sure why they havent if you have told them about this, I'd assume any doctor would investigate this.

I wouldn't expect a nurse to be qualified to investigate this.

@Porfre

Have you discussed this your doctor and have they investigated it? I'm not sure why they havent if you have told them about this, I'd assume any doctor would investigate this.

I wouldn't expect a nurse to be qualified to investigate this.

I think because the nurse has never been worried about it I’ve never thought I should make a big deal about it - which is why I posted here to see if it was really that unusual or a worrying thing to happen.

Absolutely speak to your GP about this, you're not making a fuss

The nurse presumably doesn't see the full picture?

You need to ask to be referred to a specialist haemotologist centre. I had similar and worse (post op internal bleeding) but blood clotting etc tests always came back normal. Was referred to a specialist hospital (addenbrookes) where they do more thorough blood testing and found out I have a bleeding disorder related to clotting but more complicated. They insisted all 3 of my daughter's got tested and they are the same.

Thank you so much everyone. Really appreciate the replies and feel justified in making a fuss now..!

Yeah speak to your GP.
They refer you or do more tests

I saw that you are also anaemic. Have they ever tested your stool for microscropic blood? Are you stools ever dark, tarry or black? Ever had a colonoscopy? If you don't have another reason for anaemia (vegan, heavy periods etc) I'd be concerned that you might be loosing it into the bowel- even if its so slow its not visibly noticeable in stools.

I take blood as part of my job. Its not uncommon, for patients to be sitting on the chair and all fine, but once they move their arm around and stand up, blood can start again. I would find it concerning how you describe though that it took 4hrs to stop bleeding!!! This is FAR from normal. Does this also happen if you nick yourself shaving or cut yourself?

Ask them to take it from somewhere else might mean you have a dodgy vein... I’ve always had blood taken from my left arm and one time a nurse insisted taking it from my right arm, I was bleeding for 3 hours. I d warned her because the same thing had happened years before. I always make sure now it’s taken from the left arm.

Doesn’t sound at all normal... definitely get checked out. I suspect the nurses you have told thought you were exaggerating and didn’t realise the extent of the issue. If they had understood properly, they wouldn’t have let someone walk out and bleed through their coat!

Thanks everyone. I’m going to contact my doctors surgery and ask them to do some tests re clotting etc. I don’t know if they’ve done those specific ones so I’ll find out.

I agree you need to get your clotting checked. I listed to this today https://www.chrisbeatcancer.com/brooke-goldner-md-healing-lupus-and-autoimmune-disease-with-plant-based-nutrition/ about a doctor tat had lupus and healed it. Thought it might be of interest.

Did u get to the bottom of it ?