Hi All. I have had 17 venesections in the last 20 weeks which has caused my ferritin level to drop from 225 to 12. This had led to me feeling tired most days but still able to carry on as normal. This morning my whole body felt so tired that I was struggling to get up which led to me not attending work (I work from my dining room). Really didn’t think it was possible to be this tired and not be able to sleep. I am hoping that my haematocrit has stayed low so that I do not need a venesection this week and next week.
Hi Adw265, Thank you for telling us about your situation. I am sorry to hear that you have had so many venesections and hope that your haematocrit stays low. It is awful to feel both tired and unable to sleep. Also very frustrating not to be able to work. I hope that you are getting the support you need from your medical team and your work colleagues. All you can do is take the best care of yourself that you can. I hope you feel better tomorrow.
Oh @Adw265 this certainly sounds like fatigue and there is nothing like it.
Perhaps talk to your medical team and tell them how severe it is, it sounds debilitating.
I will copy your post to the Blood Cancer UK nurse advisors and if you would like to talk to someone the Blood Cancer UK support line is there for you. @BloodCancerUK_Nurses
Take lots of care and be kind to yourself and please keep posting.
Thank you for posting on the Forum so we are aware of your symptoms and side effects of having so many venesections.
So sorry to read that you have really struggled over the last few days/weeks. I am not surprised to hear that you have such profound fatigue, that is a huge ‘blood loss’ you have had.
When are you next seeing or speaking to your Haematology team (hopefully it’s very soon)?
Are they monitoring your haemoglobin levels too? You may well need to some treatment, if your other blood counts are lower too. This may be a cause of you not sleeping well.
Are you managing to replace your fluids? Please keep drinking plenty. I am sure you’re told this all the time, but it does make a big difference.
If you have any future venesections booked, you may need to have replacement IV fluids running at the same time. This may be worth asking your medical team about.
My strong suggestion would be to actually contact them today and let them know how you are feeling. They may want to do an extra blood test and see what your other counts are doing.
Take time to rest and do appreciate that venesections can really exhaust you.
It takes a while for your body to replace what has been taken away.
Please let us know how things go for you.
Hi All. Thanks for your replies. I have a full blood count every week and with the exception of platelets everything else is within parameters. They have now (as of 4 weeks ago) started doing a weekly blood test for a Ferritin. Getting hold of the registrar or consultant is quite difficult and currently there is no plan to see me yet. I was.told.it would be 12 months after my diagnosis appointment which was January this year.
I have just received my latest blood test results and the Haematocrit has come.fown to 0.42 which would hopefully mean that I shouldn’t require a venesection for the next 3 weeks (or at least the next 2 weeks). That would be such a relief.
I do drink plenty of water. Around 6-8 pints a day and more on the day of blood test and venesection.
So I had fatigue at the beginning of the week meaning I had to take a couple of days off work and now possibly gout even though I’ve been on 300mg allupurinol since Nov 21. At least no venesection this week though.
I can definitely emphasise with how you’re feeling so you aren’t alone.
I remember passing out after a venesection and waking up surrounding by nurses with a defib… happy to say I was very quick to say I was fine.
As annoying as the fatigue and lack of quality of sleep is the inconsistency.
Most days I feel fine but others I’m absolutely whacked out and suffering with random symptoms.
It’s also incredibly annoying to describe those feeling when you’re not feeling them often when you have an appointment or in front of someone who can help.
I’ve been suffering with what appeared to be a chest infection so was invited to hospital to get checked over and not only was results showed I was fine as soon as I got to hospital I felt it too…
Felt like such a fraud but my hospital and staff are just amazing and I’m so thankful and fortunate to always be well taken care of.
I’ve reduced my work to accommodate and also make it easier for my employer (having an occupational health inspector on your side helps massively)
My ferratin is often below ten and feel like most if not all my symptoms are low iron (anaemic) related than cancer related but the vibe I get is my haemotologist is more interested in keeping my haematocrit levels down and platelet count low and if that effects my iron well tough… it’s a bit like if have a shower some water will be wasted and miss you completely
I managed to get my haematocrit level to 0.38 and was allowed to get a ferrinject to top up my ferratin and was fine for a month or two after.
The issue is it’s all counter productive low iron keeps red blood count low and high iron means more red blood cells.
As everyone has mentioned speak to your medical team and read up on low iron symptoms if you’re not aware of them already and then relay the ones you’re feeling to your team so the message gets sent home
Take it easy and keep us all updated bud
Thanks @Rammie18. I do struggle to get hold of the team and only get to talk to the nurses that carry out venesections. I honestly have no idea how long the venesections are going to go on for or when they are likely to change the frequency of them. Some of the results from the blood test were missing as the lab didn’t carry them out. I do know that my ferritin is now 10 having been 14 last week even though no blood drawn for the last two weeks. Don’t know what the Haematocrit is as it’s one of the tests they didn’t do. I just sound like a grumpy old man but it’s the mot knowing I find the worse part of all of this. It’s makes me more irritable (if that’s even possible) whi h makes me more tired and stressed and less able to cope. I keep thinking I should take some time off work but then (as posted earlier this year) I just feel a fraud as it appears most are going through a lot worse than not knowing.
It’s crazy that prior to ringing to work to call in sick that you automatically feel better once you’ve done and even feel in a position to work.
That’s because there is the anxiety and guilt and also pressure of admitting defeat or having to explain yourself or delaying the inevitable.
There isn’t a day where I don’t go into work but go in for a few hours do my thing and leave.
It’s been over 2 years for me and I’ve not figured anything out or what my short, medium and long term future looks like.
I’m being checked monthly and my medical team though at times I feel like as brill as my med team are and I’m being well cared for they are all singing off different hymn sheets.
Regarding work I’d lease with them to have set time off so you can plan appointments and know psychologically know you have rest days when you need them… see it as bringing Fridays earlier…
Regarding blood tests… full blood tests are often the only things regularly requested and they will basically show your red blood count, haematocrit Levels, platelet counts and white cell counts amongst others. You’ll most likely have venesections until your hct count regularly falls below a limit and they can correlate the impact of how much blood taken equates for how much your hct count falls. It seems this is different for everyone and takes time to observe and analyse soon as that’s done they will take into account the best course of treatment for you. Some Polycythaemia vera (PV) patients stay on aspirin and venesections others move onto other treatments… each have their pros and cons it’s really patient dependent.
What I do (it’s a bit sad) I’ve made a spreadsheet and enter all my levels and results from any blood test I have. I access these by asking my Clinical nurse to print it out for me (I know if you give them written permission they can email it to you). Other opinion is asking your gp to download your hospital results to their system and you can then access these on the NHS app. But as I’m in hospital quite often I just text my nurse a few days prior and say to leave the results behind the desk for me to pick up.
My ferritin is like 5 and I often have to request for this to be tested. You know you can request a blood test for either your Haemotologist or your gp. I would also get them to check your liver and kidney functions as as clots in those areas are not good. It’s always better to keep an eye on it. I know it’s awkward to ask and the fear of being told no is there but i see it as me helping them rather than working against them.
I would seriously ring your clinical nurse and tell them how you’re feeling and your angst and some advice about work. Sometimes you just need a professional to tell you the right thing for you to do to actually do it so it’s psychologically not your decision you’re merely following instructions.
It sounds like you and your med team are at the stage where you are figuring out the rate you body is reacting and the rates it’s working at and it’s massively frustrating as the only thing to do is watch and wait. It’s like waiting for a delivery. Which I think it’s why it’s important to fill the time when you are feeling fine to keep your mind active to make the wait feel shorter.
If your having no success with your nurse please do contact the support line as if anything they can lead your through the best route and what to say to your med team to best support you through these times.
Please do keep posting as I know how your feeling is not unique and often people don’t have the confidence or know how to write or where to start on a post so reading yours really does help others as well as yourself I hope
Hi @Adw265 I have been thinking of you and I just wondered how you are doing now?
Hi @Erica. I’ve had my blood test this morning and the results have already come through. This will be the third week in a row that I don’t require a venesection. Obviously over the moon regarding that but for some reason I just can’t help feeling down. It’s not so much the diagnosis of ET & Polycythaemia vera (PV) that worry me, it’s more the tiredness that comes with it. My consultant has said no to any extra iron as he thinks it may cause more harm than good, which I understand. I am trying to be more active but work just wipes me out mentally and I find it difficult to recover before I start again the next day. I am considering taking a break from work but that just doesn’t sit easy with me. Anne (my wife) wants me to as she see what I have to go through everyday. I have taken the email app off my phone so I can’t see work emails when I’m not at work (I do work from home but turn the laptop off every evening). I have no idea what’s best but I am happy that I have this forum to chat to as I don’t want to put too much on friends and family as I think it’s unfair to do that. And that’s probably part of the problem, I try to do everything myself and on my own as I don’t like burdening people as they have their own worries and stresses.
Oh @Adw265 I really feel for you as I remember how I felt when I was working it was just what felt a never-ending round of work - sleep - running a house, sleeping, but not feeling rested.
I was lucky as I had a lot of banked leave which I used to get 1/2 days off work.
I also could not rouse the energy to be pleased about things, I felt tearful, but monotone all the time.
Yes, I tried to do everything.
I was unable to ask for help or receive it.
What about talking to your employer and seeing if you could negotiate a shorter week or shorter days. You are entitled to reasonable adjustments and it is a win - win situation if you think it might help you psychologically, medically and practically giving you more time to do things and your employer keeps a valued functioning employee, I am great in hindsight!!
I do not deal with what personally stresses me well since diagnosis, it gets all too much.
Anne sounds wonderful, be kind to yourself and selves and spoil yourselves.
Good evening @Erica and All. Had a blood test on Monday and my haematocrit was 0.430 so it looked like not only this week but next week too would be venesection free. I had to take Thursday and today off as fatigue got the better of me. Went to GP and they did another blood test yesterday and my haematocrit is now 0.466 so I will definitely be having a venesection next week. Even though I haven’t had one for the last 3 weeks my ferritin is still 10. The consultant has again said no treatment is to be given regarding it (which I do understand). Will have to speak to work on Monday and get my duties changed to try and avoid stress. I am away tomorrow night in Penzance whi h will be a welcome break. I hope all have a good weekend. Take care.
Glad to hear that you are keeping the lines of communication open with your work @Adw265 and taking time off when the fatigue and stress gets the better of you.
So it looks like you will have another venesection next week.
Time in Penzance seems really quality time and a welcome break to me, well deserved and enjoy.
Be kind to yourself
I can totally empathise…
Your hct levels can fluctuate both up and down and it can due to lot of things like diet, exercise, hydration… I had a full blood count between 2 days and it showed a difference of 0.04 which doesn’t sound much to average joe but it does when 0.43 means no venesection and 0.47 does.
My ferritin is 4 at the moment but like you’ve said having low iron maybe actually helping you lower your hct values.
I’ve massively reduced my hours at work but so far it’s working well for me bar the good days when I feel fine but incredibly bored
Hi All. Feeling so tired and worn out out most days now. Took two weeks off work and returned yesterday but just can’t concentrate. I just feel agitated and depressed and Anne (wife) is trying to be so supportive which makes me feel worse. I didn’t have a venesection last week and not having one this week and will probably miss next week too but recovery from them seems to be taking longer and longer. Not sure what to do!
Oh @Adw265 I am so sorry that you are feeling so rotten
What are your medical team saying, don’t hold back on telling them how bad that you are feeling.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses just in case they can come up with anything.
Look after yourself
Hi @Erica I haven’t been able to get hold of the registrar or consultant. I have asked team that does the venesections if they could send a message asking them to contact me. My GP has sent them a letter too.
Hi @Adw265 great, let’s hope you get a response.
Please let us know how you get on.
Take lots of care