Bloody blood and ferritin! ☹

[Porphyriamaniac]

Been for my second venesection (blood removal) today, it went great, I seem to tolerate it really well. My blood pressure didn't drop as far as last time and It comes out lovely and quick, probably due to the fact that my body needs rid of the thick, black, horrible shite. I'm told it'll turn a nice red colour eventually. I'm a bit disheartened though, as my ferritin levels have gone up rather than down 😩 just feels like further to go now but I'm sure I'll get there in the end. The nurses at the clinic have never de-ironed anyone with my condition, they see to Haemochromatosis and polycythemia so they and myself have no benchmark to compare in reality. Just a little update for my 'blog' on here so I can look back and see how far I've come...one day. Love to you all, thanks for reading, Stacie. Xxx

[Debbs73]

Hiya. Like you I have to have venesection. Got diagnosed with genetic haematomchrosis a few years ago . Don't worry about ya ferratin levels going up mine have gone up on a few occasions but gone bk down again . I was having them every wk, but my levels on last test is now at 62. The nurses say that's ok but one of my consultants suss that's to low. I now have my venesection every 6 wks now.

[Porphyriamaniac in reply to Debbs73]

Hi Debbs, thanks so much for your reply 😊. It's good to know they can go up and down, I know I'm not the only one now. I'm on every 2 weeks at the minute, mine has to get below 50 and be kept there for me to remain symptom free from the porphyria I have, it does seem quite low though. I look forward to when its less frequent, i don't find the bleeding too bad it's just a bit weird and something we have to get used to. Xxxx

[Debbs73 in reply to Porphyriamaniac]

Hiya. Yeah it is nice to know your not the only one as sometimes it does make you feel like that. What level do your nurses want you to get down too? My lowest is 42 which meant I didn't need to have any blood taken fir about 6-8 wks. However last test came bk at 82 so they only took 250 rather than 400 that they normally take. I didn't realise until my consultant told the haematomchrosis affects your joints which will explain alot as since the age of 18 I've had joint problems. Which I've explained on my introduction. I also suffer from fibromyalgia too. X🙂

[Porphyriamaniac in reply to Debbs73]

Hi Debbs, it has to be down to 50 and kept there to stop my symptoms, it's currently over 300. I thought I had haemochromatosis as my joints are bad too but it must just be general arthritis with me, there weren't any mutations on my genetic tests. Luckily no fibromyalgia, I've heard it's painful. I hope ferritin will soon get down, every 6 weeks sounds good to me 🙂. Xxx

[Debbs73 in reply to Porphyriamaniac]

Yeah u will get there. I remember the 2nd venesection I had and saw the size of the needle my son took me and his words were " mum have u seen the size of that f@@@@@g needle ". Yeah mine's genetic so my son had to be tested but thankfully he's clear. I never even knew I had it as know symptoms or so I thought, now looking bk when first suffered with my joints aged 18 diagnosed 2015-2016 aged 42 could I of had it bk then. Omg fibro is horrendous my whole body hurts to touch. Ifyou don't mind me asking how old were u when first diagnosed? Xx🙂

[Porphyriamaniac in reply to Debbs73]

Hi Debbs, sorry I've not been on for a while. I was diagnosed with porphyria in January at age 33 but I've been having symptoms since I was around 30. Yeah, you could of had it back then but it can take years for iron to build up to symptomatic levels and we women lose blood every month in period form, which often leads to later diagnosis. Im glad your son is clear though 🙂. My porphyria could be genetic too but they don't test as penetrance is low, meaning even if you've a faulty gene it likely will never affect you. My kids know my weird symptoms so if either of them were to start, we'd know what it was, hopefully not though. Off for third venesection today ☹ needle is massive! but I don't find it any more painful than a blood test. Xxx