Just back from the hospital giving yet another pint of blood which I do on a weekly basis. Today's results were ferritin 2285, transferrin saturation % 94 and Hb 125 Up from last time. Spoke with the Consultant Doctor and he says that my arthritis is preventing the levels decreasing. I suffer from severe arthritis in my joints amd I just wonder if anyone else has been told this. Glyn
Hi Glyn
Really sorry to hear levels not come down again, it must be soul destroying
That you cannot see an end to things.
My levels never moved 2weeks ago.another one tomorrow and I don't
Expect it to move again?? I've had chronic sciatica for 10" days.
Still we still have to keep going no matter how long it takes.
Cheers philx
First of all arthritis is not keeping your ferritin elevated. In order to get your ferritin levels down you need weekly phlebotomies. I went weekly with 3 little children for 2.5 years. I was diagnosed at age 35 with a ferritin level of 3300. I had no complaints of arthritis at that time. Now at the age of 59 I have had a right and left hip relplacement due to arthritis. I also have arthritis in my feet and wrists. This is damage from iron storing over the years. You must be aggressive in getting the levels lowered, it will take time but they will come down. I have had issues with arrhythmia's when my levels were high. Diabetes, cardiomyopathy and chirrhosis can also come into play. When you do get your levels down the arthritis will still be there, damage has been done.
Hi, thank you for your reply. My ferritin level has never been below 2000, always hovering around 2300 on average. the TS% is currently 94 and always been in the nineties. I will persevere with weekly phlebotomies, but it would be upifting to see a reduction. I am listening to the Doctor who suggested arthritis plays a part in preventing the levels going down. I also have carpal tunner, diabetes and had an ablation to destroy a tumour on my liver. My main concern is that the iron is still storing in my body but I dont know to what extent and where. Glyn
Hi, thanks for replying. Disappointing results today. I thought it might start to come down given that I am having weekly phlebotomies and the nurses always say, maybe next week.... The Consltant Doctor says arthritis is part of my problem. My left ankle in particular has severe arthritis and basically dead, no movement and beyond repair. My ferritin level has never been below 2000, currently 2285 with ts% 94, far too high. I will persevere with weekly phlebotomies in the hope that it will start to reduce. Glyn
I remember my levels would stay about the same but they eventually came down. I was very naive back then. I never thought it would take 2.5 years to be < 100. I use to think maybe I should have gone twice a week. I tolerated it well. How long have you been under treatment and how much blood do they take each sitting?
Hi Glyn. So sorry to hear of your struggle with this. When I went for my years worth of weekly phlebs, there was a chap there I used to chat to in a very similar position to you...constant pain with arthritis and constant high levels. In the end he told me they had to aggressively treat him, and he had phlebs twice a week for a good few months. In the end, down the levels came. When my treatment came to an end, the last time I chatted to him, he was at 500. He had been over 2000! So, do stick with it, and maybe push for twice weekly. Very difficult I know, and draining, literally! Wish you all the best. We're all rooting for you. Mike.
Hi Mike, thanks for your message. I shall see what the test results are next time and if there is no improvement, then I shall have to insist on speaking with the Consultant about what course of action is best. All my levels were up, hb, ts% and ferritin so I need to consider twice weeklys although I have to say I am not looking forward to it. Glyn
Hi, I have been giving blood for about 18 months now and each time it is 500ml. and this week's results were al up, viz., Hb, TS% and Ferritin. I dont relish twice weekly but if that is what it will take, then I will do it but I shall wait till the next test result and see what the results show, Glyn
My total saturation is 76. After 23 years of phlebotomies and a ferritin of 60. The saturation still remains hi?
Hi Mike, last evening I had a 'new' symptom to add to the growing list, A nagging pain on the left side of my chest. Bothered me most of the day and night, but this morning it doesn't seem as bad. Just wondered what this could be. I'm thinking as my ferritin level is not coming down, that perhaps iron is continuing to store itself in other organs, viz., heart but then again, maybe I am over-reacting. Your thoughts are appreciated, Glyn
Hi Glyn. My heart used to flutter quite a lot which always concerned me. My consultant just dismissed it. Happens still from time to time, but just ignore it. I'd say it's always worth getting that checked out only because of our condition. May have been a muscle issue or a variety of other quite innocent things. But, as we're iron folk, it won't harm to get it checked out. We can't help with over reacting...if I suddenly get a random twinge, and it's in my right abdomen, I think oh no..my liver! Let me know your progress, and I wish you well. Mike.
Will do, Glyn