Anyone with low hemoglobin due to hydroxycarmbamide?

[gbeam]

my hemoglobin is 10 at the moment, my hemp at last visit said he might have to change my medication not sure what to. i am feeling really tired at the moment, no energy at all. has anyone else suffered similar> i am due back to see hemp 5th September.

[gset]

Mine is just 10.6 and my WBC is also low so he said the same if it does not improve. Tired but never know if this is the drugs, the condition or working too hard. How long have you been on the drugs. I have taken them for 5 years

[gbeam]

Hi gset, i was only diagnosed last July with ET, so just 14months the Hu was and is working to keep my platelets low from 920 at the beginning to 360 now but my hemp has now noticed

my hemoglobin is dropping at each apt. i feel tired, legs feel really heavy, i am also out of breath quite quickly my GP has told me i am anemic at the moment but he can't prescribe me iron as this will mess up my bloods at my next apt, i am signed of work till i see my hemp. do you have ET? has your hemp mentioned what drugs they may try next? i presume the Hu worked for you with no nasty side effects before this happened.

[Balenciaga]

This should be looked into further, ie more blood tests. I had low iron a few years ago, my consultant did more investigative blood tests & found my B12 was low, so I've been on B12 injections every 3 months since then; more recently, my haemoglobin was low so, again, he did more investigative tests & found my ferritin was the prob, so I now take a daily iron supplement: these supplements do not raise my platelet count. I was diagnosed with ET in 1995 & been on hydroxycarbamide ever since; my platelet count never stabilizes (fluctuates dramatically in fact) but don't let any medic put you off taking supplements: always be prepared to fight your corner & ask for further tests - you are the one suffering & dealing with this on a daily basis, not them.

[gbeam]

hi,

thanks for your reply, i was checked for B12 levels and the GP said they were fine, not sure about my ferritin levels i will ask at my next visit. i do need to be more assertive, i do always take a my notebook with me with questions, maybe i just don't ask the right ones, but i am learning.

[Balenciaga]

Surely you are 'under' a haematologist (or is that what hemp stands for?) & not just your GP?! GPs know v little about MPDs & low haemoglobin/iron can be caused by many different blood factors that a GP wouldn't necessarily think about testing. If your next appointment is not with the haematologist for some weeks, phone the haematological dept & arrange to be seen sooner: you have the right to do that, you are on chemo for goodness sake (& no-one is going to do it for you).

[gbeam]

yes hemp is my hematologist, such a long word, my levels have been dropping and he is aware of this and he has been changing the dose of HU to see if there was any any improvement from 11.4, 10.4, 10 he said if it drops to 9.4 by my next visit he will consider changing my meds. i have had full bloods to check other possibilities, i wasn't sure how serious a problem it could be. i see my hematologist every 8 weeks at the moment. i will call them tomorrow. thanks for your advice.

[Balenciaga in reply to gbeam]

Lmk how you get on: my haemoglobin was about 8 when my consultant agreed to do more investigative tests (actually, I could tell he was slightly panicked: lol) & that's when he realized my ferritin was low & causing the problem. Don't worry about it though because that doesn't achieve anything: just insist that they look into further - I know it's hard especially when you feel so low. Over the 17 years I've been on hydroxycarbamide, I've had all sorts of 'problems' which I've found difficult at times but staying calm does help & if you've got someone willing to go with you (which I never did), that definitely helps (power in numbers!). You could also insist your consultant sends you to a more 'senior' consultant (if you look on the MPD support group site based at St Thomas', London there is a list of professors etc): I did this a few years ago (& went) & it's really made a difference to how my consultant relates to me.

[gbeam]

i will let you know how i get on. my husband always comes to my appointments, he takes the day off so we can enjoy some time together afterwards. i have requested a referral to Cardiff to see a specialist, still waiting! i am going to the forum in Cardiff in October. i went to the London one last November and found it really helpful. have you ever attended any forums?

Gill

[Balenciaga in reply to gbeam]

Funnily enough, I did this year... Cambridge: it was interesting tho I didn't learn anything I didn't already know but then I am v long in the tooth (1995 diagnosis). It's good you have a supportive husband: just got rid of mine, after 25 yrs, cos he was so unsupportive. If you've been waiting a long time for that Cardiff appointment, chase them up: they often need a jig in my experience!

[Balenciaga in reply to gbeam]

Hi Gill

Has anything been done about your anaemia?

[gbeam]

HI,

Thanks for remembering me. i have been on iron tablets for over a month, my ferritin levels were low. i am now feeling a great. i am actually seeing a MPD Dr next week as i asked for a referral and it has finally happened. i am hoping to see Dr Steve Knapper in Cardiff. i met at the Cardiff forum last week and he seem such a nice Dr so i am actually looking forward to my appointment, he did ask me why i request the referral. i told him i just wanted to make sure i was taking the right meds and getting the correct treatment he said he was looking forward to our chat next week. how are you keeping?

[Balenciaga in reply to gbeam]

Sorry for the delay: your reply didn't come through as an email like the other stuff on this site does! I'm glad I decided to have a trawl through & see if you'd responded. You should put something about this on this site because several people have written saying they think they can't have supplements: it's madness!

Good that you've got that referral: lmk what's said & I'm so pleased you're feeling great.

I'm just the same (I have other illnesses). I wrote a blog some days ago about being treated at the sleep centre: you might find it interesting as my excessive tiredness is nothing to do with any of this MPD business (lol). It's been v interesting to read about other people having the same complaints/symptoms as me but the lack of good sleep is a real killer. Isn't it appalling that you had to go on this site in order to get the low ferritin diagnosis (although marvellous too because we can all now access info that was previously kept from us)?!

All best wishes

[gbeam]

hi i did read your blog and as you said access to all this info can only be good news, its a window into other patients worlds.