Has anyone experienced their ferritin levels rising whilst having venesections?
I started at 1525, which reduced to 1300 after the first two. In December it was 1670 and after the fifth venesection it was over 1800. My team have cancelled further venesections while they investigate.
There is a suggestion it could be liver related but no bloods have ever indicated liver problems.
I am trying not to worry as I do feel well (I had Acute myeloid leukaemia (AML) and a Stem cell transplant) but can’t help wondering what may be causing my ferritin to rise.
Thanks in advance
Sue
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Hi @Suey.
It’s hard not to worry when you notice a change isn’t it.
Hopefully others can share their experiences with you.
When are your team getting back to you? Hoping you haven’t got to wait too long x
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Hi @Suey others might be able to share their experiences but perhaps after your medical team have investigated you might get more answers and it might be worth you writing down all your fears and questions and don’t forget and appointment is a two way process so make sure your questions are answered.
I know my thoughts and feelings would be all over the place with not knowing, that is natural.
Please do let us know how you get on, try and divert your thoughts and feelings.
Look after yourself
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Hi @Nichola75
I last heard from my SCN on Friday 12/1, I had to call her despite her telling me on the Tuesday that she would let me know what the Haemotology team discussed about me on Wednesday!
She said that they were going to talk to a liver specialist about me and that I would probably need an ultrasound so I assume I will get an appointment, but I don’t know when. I think I will give it this week and call her again.
Thanks for your interest.
Sue
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Thanks @Erica
I never used to worry about my health, but after a cancer diagnosis I seem to fear the worst. Hopefully I will get an appointment soon and get some answers.
I am keeping busy, we are doing some DIY while the weather is bad!
Sue
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I agree @Suey I never used to worry about my health before my blood cancer diagnosis either.
Why do we always fear the worst?
Please do let us know when you hear something and I am impressed on the DIY.
Look after yourself
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Hopefully you’ll hear from them doing but I agree, if you don’t, I would definitely give them a call.
Take care and keep us updated x
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Quick update @Erica @Nichola75
I had a call yesterday afternoon, ultrasound Monday, will be a long morning as I have to fast for 6 hours before it!
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That’s great - not to long to wait x
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Good news that you have the ultrasound on Monday, but yes, it will be a very long morning.
I have just had a call from the hospital giving me an appointment on Saturday morning for 8.30am.
I keep on trying to work out what time I need to get up to get there on time.
I’ll be thinking of you.
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Oh @Erica 8.30am! I will think about you too, hope the hospital isn’t too far, I’m only 20 minutes from mine.
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Erica I will be thinking of you on Sat please let us know how you get on. Nxx
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Hi had the same Acute myeloid leukaemia (AML) and a stem cell transplant. I’ve been having venesections for 2 years, started at 2800 got down to 900 autumn last year then had it tested again in December and it was back up over 1000. Nurses told me that it was common that it fluctuates a little. I have them every month and was hoping for it to end early this year. Consultant wants it to be 500 or lower.
I had Covid the week before the last test so putting it down to that. Liver and kidney function was normal.
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Thanks so much @Suey and @Derma the hospital is about 30 mins away on the bus or a 50 min walk.
I shall decide when I have looked at the weather forecast!!
Hi @Muzza from personal experience I can tell you that many blood tests do fluctuate.
I don’t think anyone really knows the affect of Covid on tests.
Look after yourself I think Covid can be nasty.
I was never told anything about potential high ferritin levels resulting from my blood transfusions pre stem cell transplant.
Was told around a year after the transplant my ferritin was 6777, which meant nothing to me, and would need to be reduced by Venesections on a monthly basis.
The level went down pretty quick, but did start to rise around the mid 3000 mark, but was moved to fortnightly Venesections and now my levels are below 300.
I’m having a small break until mid April to see how the levels settle, so hopefully won’t be seeing Nurse Stabby in the future !!
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Hi @Macamboy a great big welcome to our forum and thanks for your experiences.
I hope you enjoy your break till April, please do let us know how you get on
Look after yourself and please do keep posting I look forward to hearing more about you.
It must be nice to have a break for a bit. I hope your levels stay steady. Keep us updated 
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Hi @Macamboy
I wasn’t aware of the potential ferritin issue until a year post transplant either, and when I was told what a venesection was I freaked! I have a life long phobia of blood and am known to faint at the sight of it (I know, ironic to be diagnosed with a blood cancer!)
So far I have managed 5 without making a fool of myself, but my veins don’t like the procedure and sometimes no blood can be taken. Unfortunately in January my levels had risen from 1500 to over 1800 and the venesections were postponed until we found out why. I have been referred to the liver consultant and I am waiting for a scan, I’ve been told they aren’t considered urgent and are only done on Thursdays! Feel like I am in limbo and thinking that whatever is causing the ferritin to rise the only treatment will be more of the dreaded venesections.
Hope your level stays stable for many months!
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Hi @Suey perhaps I think you have done brilliantly with your venesections considering your phobia.
What helps me is drinking a hot drink beforehand and not looking but either talking to the nurses or think of my ideal holiday destination or meal etc
I hope the medics finds out what is causing your ferritin to rise.
We certainly are complex beings
Look after and be very kind to yourself and please do keep posting