I must confess I don't like this at all - When I first started the venesection they just allowed the blood to flow freely via the tube. Now they effectively drain it via the syringe so that the syringe acts like a pump with them drawing back & fourth on it with their hand - Not very nice as a few times the bloods gone absolutely every where - They say its because its not free flowing I personally believe this as more to do with the time your effectively sitting in the chair and they have other patients waiting in the clinic so to speed it up they use this method
Hello Paul, I've never heard of the venesection being done like this.
I've been having venesection once a week for a couple of months now. Mines always done by just inserting a tube and draining the blood. It takes 5 minutes.
How long was it taking you.
Regards
Dillinger
Hello Paul
I have had a venesection done this way too when my blood would not flow.
Basic question I know, but do you drink plenty before venesection? I find that I have to start getting hydrated at least 2 days before. Being a needle phobe I don't use the standard venesection pack with that huge needle but have a much smaller needle. Because the needle is that much smaller I make sure that I am well hydrated and I take a squeezy ball to help it along. For me it seems to make a difference how tight they have the tournaquet (hope that's the right spelling) as well. Some nurses pull it so tight I get left with an indentation on my upper arm for hours afterwards, but I have to say, the tighter the faster the flow.
Have they told you why they are using this method? How long did it take letting the blood flow freely? Sorry for all the questions.
My venesection (the actual blood taking and not all the blood pressure, prep etc,) takes from 20 to 25 minutes. I am usually taking up a bay for nearly an hour.
I hope you can return to the method that you are used to.
Best wishes
Marie
Sure you have yours done local to me to 
Mine takes approx hour thats them taking your BP before & after and prep for the candula. Although now I have saline to but all in all bout a hour half. The Matron did it once and was happy the speed on which the blood was flowing out and just allowed it to free flow - However its being done via syringe lot more now which I must confess does make u feel a little nauseouss to say the least
Hi Marie
Lets put it this way Thames & drink Doesn't make no odds on how much you drink at all that was their initial reaction but its absolutely nothing to do with this although I do think it helps to hydrate yourself to plump up your veins. Mind you I was weeeeing so much on the section day that I thought about getting some huggies at one stage its no joke when your on a train in London and your busting for a wee. Personally speaking I think its the trained eye & hand and caring nature that does the job and gets the blood free flowing - Had junior nurse do my section and I must confess not even a mark on my arm and absolutely no syringe at all. Very careful and up to the job! Although she did say she wasn't suppose to be putting the candula in she did it better than the two sisters who run the ward. The Matron was fantastic to! very gd at her job. Its cert a real eye opener sitting on a unit. The other thing is bruiseing my veins are in pretty gd shape but some nurses will stick the needle in on the outer part of the forearm which actually makes me feel really unwell - Did have to say the other wk enoughs enough try the other arm as she wasn't hitting oil boy have I got a bruise there now as she was wiggling the needle about for ever it seemed - I alternate my arms each Wk norm have no prob
Hi Paul just to say they couldn't get any from my veins and after prodding for a couple of sessions gave up trying. If it continues you may like to investigate Exjade which I am on as a chelation instead. I started at 950 in October and was down to 230 by April and I am now on a break until the Autumn. I haven't had any side effects.
Hi Lisa
Well mine is almost down was a 1000 at begining Jan following being diagnosed late Dec, its now down to 350 - need to get it down to 50 apparently. Just be glad once its done pain in the arse to go every wk but I guess you have to go once every few Mths to ensure it doesn't spirial back up again once the target value is reached - Mines done that once even though I go every Wk it shot back up - not by loads but a few ML.
You can drink green tea after your meal and have a yoghurt too, they will help keep it down. Good luck!
I'll remember that
Tx
Paul
Hello again Paul,
I saw my consultant yesterday. My level was 1421 when I started venesection about 2 months ago. It's currently 698.
Hopefully if it keeps dropping at this rate I'll be below 50 by Christmas.
It is a pain in the arse going every week , it's a pain trying to organise it around work.
The nurses where I go are good as gold. Also when you sit there looking at all the poor sods that are there to have chemo you realise that there are a lot worse things to have than Haemochromatosis
Your dropping at a fast rate - Quite agree about there being far worse out there. Its cert no fun having needles stuck in your arms each Wk but it could be worse! - Glad to hear things are working for you
Paul.
Yes, me too last venesection. 2 hrs and 4 attempts to get less than 400 mls. My blood is often black and thick as it was that day. 3 nurses had a go. Drank one cup of tea and 5 glasses of water while in the chair - had to have a pee break. I believe the waiting can be a problem, so I try to walk up and down the corridor waving my arms around like a madwoman. Getting cold while waiting - sometimes I am offered a hot blanket.
Sometimes it goes easy, others like above. I am also fighting fatigue and body pain even though I have been 'deironed' for years. I began thinking no wonder I feel like I am dragging around a heavy chain and anchor, plus the body pain if my blood is so thick and black like that.
When I complained to haemotologist, it must have been the nurses fault. Of course it isn't, although some a better than others. No answers to my problems - I just should not be having them because I am 'deironed'. So off my own bat, I decided to try thinning my blood down with aspirin.
100mg daily with breakfast. Within less than a week, I started to feel like I WANT to do things, walked faster, lighter. Because I now go to the gym 2-3 times per week to try to regain some strength and muscle lost over the years therefore pushing myself even further I still do crash and burn and while I get to a point after dinner that I can't remain upright anymore, I can take stuff to bed with me to continue to do while propped up.
My next venesection is due mid June. Can't wait to see what happens. I am not advocating it. But so far it is working for me. So it is under personal trial. I missed two days of taking the aspirin and really noticed the difference, then realised I had missed two days - aspirin has days marked on the press out bit.
I had thought of asking nurses to set up a saline solution feed at same time, but that could mean that they were collecting more saline than blood. So I will see how I go.
The weird thing is that all the time in the past, whenever a dr has tested my circulation on my ankle and groin points, they say it is very good. My oxygen level pre venesection is never less than 99% so one would think everything was perfect. it goes up to 100% after venesection, which could be a telling point. My BP is always low to good too.
Hi Paul
My sister has her venesections in London. Which hospital do you attend? My sister goes to UCLH.
She has lots if problems with different nurses, some better than others and she gets really stressed if she is called by a nurse that she has had a bad time with. She now asks to wait for another nurse with whom she feels comfortable with. They are quite good and allow her to do so.
Looking at Sheryl's post using Aspirin, my sister does the same. She takes Aspirin the night before and the morning of the venesection. She swears by it. She is also a needle phobe like me and has a canula like myself.
Although she has not had as many venesections as I have had, her veins are not fairing as well as mine. They are now taking the blood from the under side of her forearm. Ouch!
Both my sister and I have had the situation where the nurse misses the vein and then twists and pulls the needle, that really hurts and I have to tell them to stop as it makes me feel quite queasy and it feels like I am going to pass out. I find that sometimes they think they are in as they see blood in the tube only for the blood to stop running as they have passed right through the vein. That's when I get the nasty bruising.
Interesting that the nurses where you attend say that it makes no odds on how much you drink. I am asked every time I go whether I have had lots to drink.
Best wishes
Marie
Hi Marie
Have mine done at Bartshealth - which is where I work to I know UCLH well having worked out in cancer services there
Well must confess some of things you say I have deffo encountered. Most nurses are rather gd but you always get the odd one Or two who can be a little harsh shall we say. I've had that where they put the needle in and can't hit vein so wiggly it about and yes your absolutely right it does make you feel like your going to pass out - noticed I go cold to. I did have to say the other Wk enoughs enough can you try the left arm. but I have a big bruise on the underside of the fore arm for the want of her trying. When they insert it in this area it really does make me go cold.
Asprin thins the blood so I guess maybe it as some benefit along the way.
Until late Dec last year I had never even heard of Iron Overload let alone Haemochromatosis. But thinking bout it now I lost my dad in his early 70's and from what I read the iron builds up in the organs until you have organ failure whether that be liver, heart etc so having lost a reasonably fit dad its highly poss he might of had this. As it was a heart attack that took him. Suppose yes moan about all the venesections but end day if it saves ya then its worth it
Since telling a few people about this I hear they have gone and got their self checked out as iron content seems to be over looked by GP's in blood test results - Mine was 800 ML in 2013 but wasn't picked up on by my GP Was only that I kept getting reoccuring mouth ulcers that my GP thought I was lacking Vitamin B that it got highlighted my iron content was high hence being refered last Dec
They did initially think I wasn't drinking enough water prior to section but like I say I was drinking gallons of the stuff but still felt very unwell - indeed I did pass out on the unit but don't think they noticed it as I was laying down but just remember the room spinning and feeling like I was in another world - seemed like ages but prob was minutes until I come round from it - horrible feeling as you totally lose control!
Paul
Hi Paul
Like you, I had never heard of haemochromatosis before being diagnosed. My diagnosis took a long time and by the time I was diagnosed with ferroportin disease (haemachromatosis type 4) my ferritin was 5000. It has taken three and a half years to get down to my target of 200 and an now in maintenance phase.
I was horrified at first when I found out what the treatment was, needles and blood and not very good with either, but it didn't take long to realise that there are a lot more people worse off than me. I am fairly relaxed now with the thought of lifelong venesections as long as I can continue with the smaller needle.
My sister and I have no idea which parent we have inherited the gene from as both were dead when we were diagnosed. My mother died at the age of 47 from a heart attack and my father at the age of 72 from lung cancer. He was quite fit and did not have many health problems but he was a smoker, so I guess the cigarettes got him in the end and not haemochromatosis. On my mother's side, her father died at the age of 67 from a stroke and his brother at the age of 55 from a heart attack. The heart attack was a big shock as he had cycled everywhere and was a very fit person. From this family medical history we are assuming we have inherited the gene from our mother's side. We have notified all of our relatives and left it up to them to get tested. So far we have not heard of any other member in our family with it.
Have you been in the new cancer centre at UCLH? It is much improved on the old building and a much better place to wait for your appointment.
I am lucky that I have not felt unwell from the actual venesection but if I overdo it on the following day I get a bit dizzy, so I try not to have too much going on for a couple of days afterwards.
Best wishes
Marie
Never heard of this. I was a little slow in the beginning they said my blood was thick. .as my ferritin went down it was faster. In 7 months of weekly treatments.. i am at 167. i noticed that drinking tea with every meal or milk. Really moved the numbers..but when i used the cranberry pomegranate juice, which chelates iron.. i really improved. I did have a glass of wine now and then..with cheese.. my liver was tested recently and my counts are on the low side of normal. I started at 1600. I googled everything on the subject. Tried lots of things.
I think your blood is just a little thick for niw. Weird barbaric way to get it out.
Hi Marie
Must confess having what resembles a darning needle stuck in your arm first thing on a Monday morn isn't the best way to start your week off
Tend to just want to get it out of the way so always hop for a Monday slot. Mind you the clinic is very busy so I have to book way in advance
What’s got me wondering about all this iron overload business is it was a young locum who picked up on this initially - My own GP seemed somewhat vague about it all and seemed to think no one in the practice had ever been diagnosed with this before. Had me thinking is this a new thing within the medical world because they are looking more at our genetics now and how they affect us
Sure I worked across the Rd to the new cancer unit – Is it on Huntley St ? Cannot keep up with all the new builds being erected across the capital particularly in the NHS. I know they have just relocated the London Chest to Barts hospitals main site
I did get told by the consultant that the type of Haemochromatosis I have was inherited from both parents so each parent would be a carrier of one of the genes and that’s resulted in me ending up with it. My mum had hers tested and her content is 100 and no trace of it so I reckon my dad prob had both genes . Although his not around to be tested but its highly poss he did have it but having said that he did donate blood when he was younger so I cannot see them letting him do this if he was a carrier
Other thing is I see my blood being binned each Wk following section yet there’s other people sitting on the unit opposite me having infusion for low iron – I did ask about becoming a donor but apparently they are very strict on donating blood now and it can take up to 2 years to be accepted on the register. This poss could be because I am a carrier but the consultant seemed to think it was a simple process to become a donor but the units job was just to get my levels done to a acceptable level
Paul
PS. Any new people reading my convo’s who have just been diagnosed don’t blow a gasket 
I’m sure each individual is totally different in what treatment they undergo and their reaction to it – I know reading up via the net when your just been diagnosed with something is something we all do – not always wise as people do differ
Yeh I did think that when they started pulling the blood via a syringe it was a bit barbaric but from what I've since found out is they do this because its taking to long to come out naturally. They are effectively just pulling the blood via syringe then pushing it back so it fastens up the process - Personally think this is more to do with the time you’re occupying a chair in the unit which on telling some people they think it’s absolutely dreadful and should be allowed to flow out naturally
Paul
Hi Paul
Yes, it is on Huntley Street.
My GP didn't think of testing my ferritin when I kept going back to him. My overload was eventually picked up by having an MRI scan for something completely unrelated. It was at that point that I got referred to a haematologist. It took another two years after that because I didn't have the classic hereditary haemochromatosis. At first I was diagnosed with hyperferritinaemia, then hyperferritinaemia cataract syndrome and eventually ferroportin disease after a genetic test to check for a mutation in the ferroportin gene. All the while my ferritin was climbing and no one could understand why, especially as I hadn't inherited two copies of the HH gene.
It was good to finally get a diagnosis and start the treatment to get the ferritin down.
Having a first thing in the morning slot is no good for me. I prefer an afternoon session which gives me time to drink lots of water. As you say in your ps note, we are all different and anyone following has to find what suits them. I have found all the contributors to this forum very helpful and I hope we are being of some help.
Best wishes
Marie
Hi Marie
Had feeling was Huntley St - I use to work in cancer research across the Rd
Cert have been through the mill then - No fun for someone who doesn't like needles! Least your on the right track now
Must confess drinking lots water is a real pain - I drink water throughout the day normally but on appointment day its harder as my slot is at 10 am each Wk so guzzling water down me before hand is a bit of a task
Oh its always gd to talk to people in the same boat as you I find - compare notes
Paul