Hi there, I am 3 years 4 months post transplant and have been told I need to commence venesections, I have my first on Saturday. I don’t know much about high ferritin levels, has anyone else been affected in this way …are there side effects to having high levels which I may be unwittingly suffering or to the treatment itself?
Thank you
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Hi Lisa. I’m afraid I am completely in the dark on this topic but hope all goes well for you and that there is somebody on the forum who can help
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Hi Lisa, gosh too medical for me, but I will be thinking of you on Saturday and please let us know how it goes, take care.
Hi Lisa, a venesection can be a common treatment for those with a blood cancer called PV [polycythaemia vera] and I have copied this information below from one of our booklets.
“This is one of the simplest and quickest ways to reduce the number of red blood cells in your blood and make your blood thinner. This is also known as blood-letting or phlebotomy. It involves
taking around a pint (half a litre) of blood from you. This may be done once a week initially and then repeated as often as needed. You may feel faint after the blood is taken, so replacement fluid can be given at the same time to help with this.”
The Anthony Nolan booklet 'The Next 7 Steps" discusses long term follow up and care following a transplant, and they discuss high ferritin levels, which is more common if you have had blood transfusions during or after your treatment. You can find the booklet here https://bloodwise.org.uk/sites/default/files/documents/Anthony_Nolan_Next_Steps_Digital.pdf or you can order one from Anthony Nolan if you’d like a paper copy.
The symptoms of high ferritin can vary, they may be fatigue, joint pain or abdominal pain - or you may feel okay it’s very individual depending on how high the iron levels are and what impact the levels are having on your body.
How are you feeling ahead of the venesection Lisa?
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Thank you so much Dawn I will have a look through the literature.
I’m not really worried about it but it’s just an inconvenience although I have been extremely lucky and never suffered with any GVHD etc my recovery was quite straight forward. I just hate the thought of having any treatment as it makes it feel like I’ve taken a step backwards .
Thank you again for the information 
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Very very happy to help 
I can imagine it feels like a step backwards, especially as you’ve been so well since your transplant but it’s very important to remember this may be a short term treatment which is aiming to help you remain well so you don’t suffer side effects of iron overload. Do you have much of an idea about how many times they think you’ll need the procedure done?
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Hi Lisa,
I had my SCT in October 2015, and about 18 months later started having venesections. I think I had them monthly for 6-8 months.
Like you I was a bit annoyed as it meant going back to the hospital day unit, which I thought I had got past. I quickly realised though that the achiness and fatigue I had been suffering was largely down to the ferritin overload, which itself resulted from accumulated iron levels from the many transfusions I had during my treatment. As a result I ended up looking forward to my venesection sessions, as I felt better!
In terms of the process itself - it is pretty straightforward, a bit uncomfortable as the needle goes in (but is fine if you get a good nurse, as most of them are). I used to take some cake and a large drink and have that at the end plus sit for about 10-15 minutes before driving home, just to make sure I was fine.
I am all good now and just go back for an annual check. Am signed up at a gym (which I never did before) and did a monster session with a trainer last night, my friend who I was with and is 5 years younger, with no treatment history, had to leave half way through! I still have some pain but push through it, things can be really good long term.
Best wishes, Brett
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Hi, Brett, a great big welcome to our community forum and your first post has been so valuable and I am sure you will have really helped Lisa. I am glad to hear you are now on annual checks. I am also very impressed that you have signed up at a gym for the first time and that you did a ‘monster’ session with a trainer last night. I am also a member of my local gym and I also do pilates and Zumba classes there and I won’t let younger whipper snappers get the better of me !!! Take care and keep posting.
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Thanks so much Brett, I do suffer with fatigue so maybe the venesections will help with that. I am currently training for my 2nd Manchester 10k so a boost in energy would be good.
Thanks again
Lisa
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Hi Lisa!
I had acute lymphoblastic leukaemia (ALL) and a stem cell transplant in 2014 (after relapsing) and recently started venesection (again). I had it a few times before I relapsed – though I can assure you the venesection had nothing to do with the ALL coming back! The process was much quicker easier than I remembered it: I was a bit disappointed that I didn’t even manage to open the magazine I’d bought specially for the occasion.
Learn from my mistake
Like Brett, I recommend taking a stash of food and making sure you drink well before you head off afterwards… I once made the mistake back in the day of not giving myself enough time (or maybe enough to eat/drink) after venesection before meeting a friend for lunch: fortunately he was a medical student and fed and watered me (he charitably gave up his Costa coffee) as soon as I started to feel a bit faint. Entirely my fault and entirely avoidable: eat, drink and take your time and all will be well.
It’s not a competition (but I would have won)
When I went in this time I happened to sit next to someone else getting venesection, though his was for his (genetic) haemochromatosis – he said proudly that his ferritin had hit its highest level before that session, at 1,400ng/mL… I said mine was at about 1,600, but the nurse looking after me corrected me to say it was 1,800 – the haemochromatosis guy was amazed and impressed (I humbly insisted it wasn’t a competition, but my nurse was keen to point out ‘her’ patient would have won, if it had been).
Ah, that might explain it…
Anyway, he told me a bit about the side-effects of ferritin overload (Dawn and Brett have mentioned them), which I’d never realised. I was particularly interested to hear it can cause fatigue, as I’d always assumed it was a difficult-to-define-precisely consequence of all my treatment (particularly the transplant) that I couldn’t really do much about on the medical side. I didn’t have enough venesection the first time around to find out whether it helped me feel less fatigued, but I’m crossing my fingers that this time it’ll give me the kind of boost my new haemochromatosis friend suggested it gives him.
How I deal with this 'extra treatment’
Both times for me the venesection started five years after the end of treatment – for me it felt like a kind of happy milestone, as though I’d finally reached the point where we didn’t need to worry about the leukaemia so much and could start dealing with other consequences. That meant I was actually excited about restarting venesection this time around, and when I had about the potential benefits it really felt like a positive move, as opposed to the more frightening treatment I’d had when trying to keep the leukaemia away.
That’s my take and my experience… Hope it all goes well for you; and good luck for the Manchester 10k! My excuse for avoiding sporty events is that I’ve got an injured ankle, dodgy knee and wonky elbow that I’ve not been able to do anything about while recovering from the leukaemia – but now, like with the ferritin levels, I have the space to start trying to sort them out!
All the very best,
George
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Hi Lisa
I don’t really have much to add to Brett, George & Dawn’s really helpful comments. I’ve had one venesection in the past which was maybe 18-24 months after my transplant but now at 5 years post-SCT, I’m in the same boat as you and about to start a series of monthly venesections.
My ferritin levels have been high on and off for the last couple of years but I suffer with frequent infections which can also raise levels so it’s not been very straightforward.
As well as the blood transfusions during treatment, in my case it looks like the genetic condition called haemochromatosis (that George mentioned) may well be the problem as I have just tested positive for two of the genes.
I’ve also really struggled with fatigue for the last two years so I am hoping that this “haemochromatosis guy effect” will work for me too!
I think a lot of us feel like recovery from a transplant is a bit of a 2 steps forward, 1 step backwards shuffle at times, but I am really heartened to hear that both Brett & George have had such positive experiences from the venesections so fingers crossed you (and I!) will have similar outcomes. (And I am going in on Monday and will take an enormous eclair!)
Best of luck with the treatment and with your 10k training!
Best wishes,
Gill
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Thanks George, I will make sure I take myself a little picnic. I hope your good health continues and I suppose our venesections are a small part to pay for the fantastic lifesaving treatment we’ve received.
And maybe I will win a competition 
Best wishes
Lisa
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Thanks Gill , a cake sounds good, any excuse.
Wishing you continued good health.
Best wishes
Lisa
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Hi Gill, a great big welcome to our community forum and I think this post and the replies really show me the value of this site. We are all here to support each other and I have found we are all very special, unique beings but that we often share the same fears, what if’s, thoughts and feelings. I have found that it is very difficult for a person without a cancer diagnosis to understand sometimes. Keep treating yourself and please keep posting how it is for you.
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Hi there,
I had AML April 2008 & SCT August 2008 & throughout my treatment had at least 19 pints of blood. It was explained to me that I needed to have regular venesections as I now had too high iron levels that could harm my liver (I seem to remember) & this would bring the levels down to normal. I just took it as another procedure to help me remain on the planet & had them until the levels were reduced.
There’s nothing to worry about & it’s just the same timing as receiving the bloods in the first place.
Good luck.
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How are you both, @GillM & @Lisa - you both mentioned you were having your venesections this weekend - I hope you’ve been taking it easy and some of the (brilliant) advice here was helpful! If you’re up to it, please let us know how you got on!
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Hi Dawn,
It was no problem at all and didn’t take very long. I was quite surprised at how thick my blood was and you could see little clusters of iron in it that looked like fatty deposits. Apparently the more venesections I have the thinner it will become.
Thanks for asking.
Lisa x
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Pleased to hear it went well Lisa, thank you letting us know!
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Hello Gill, I just wondered how you were? How have you been finding your monthly venesections?
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Hi, I have only just joined this site and was searching for people who had high ferritin, your post talked about that I wanted to ask what in your case was high? Do you know the number. Mine was 648 last blood tests. Thanks Al
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