Yeah! My numbers dropping but I hurt like hell.
Posted , 4 users are following.
Hello everyone I had reason to be elated last week when my venesection nurse shared my latest figures. Numbers falling quickly surprising them all, I was told If it continues I could be in maintenance by February *waves arms and punches air* I wish I could just hold that thought alone in isolation but as there often is, there is a down side. 😯😕 I am experiencing prolonged discomfort in my ankles hips and shoulders... What is going on? It is worse if I get up after sitting quietly, feet up chilling ... I try to get up and all hell seems to let loose and I walk as if I am crippled for some minutes, the aches only ease with prolonged movement. This morning my neck joined in the game. It must be a game because I thought finding Haemochromatosis , coping with the terror of brain fog that made me question my sanity and the acute exhaustion, the yellow skin, the perforated esophagus , and monthly cistitus were the worst I would have. Once the weekly venesections since July, began symptoms eased and some faded into the distance, I even got my head round the anemia, as numbers dropped I was hopeful the worst was over and with maintenance on the horizon I would get my mojo and semblance of normality back. Now! W TF! What is going on? Please if anyone has had this experience please tell me. Do I go to the GP or the Gastro that sent me for venesections? I look forward to your responses. P.S. it seems, Just because my liver isn't in trouble, doesn't mean it's over
1 like, 5 replies
zach76568 ellen12819
Posted
This is a normal response, I also had the same. I am 40 now and they found mine when I was 23. My ferritin was off the charts as well. I can assure you that it will get better. Your body will respond differently with the removal of iron. Patience is not in my vocabulary either, but when you get to maintenance phlebotomy- everything will fall into place. I had similar reactions when I was going weekly blood removal. Just don't let them over bleed you. We can become anemic, as they did to me years ago. Unfortunately you have to be your own advocate, because the doctors have not figured this disease out completely. People in this group are very educated, and most have had your same issues. They have helped me as well. At the very least, your not alone. I to had to come to this chat room because my doctors years ago had no clue.
sheryl37154 ellen12819
Posted
Omega 3 is supposed to help with lubricating joints. The best response I got was when I decided to take 100mg aspirin every day to treat thick black blood which was very difficult to venesect. Amazingly I got an extra benefit. My body pain (bone/muscle) was relieved as it seemed (to me) the thinning of my blood flushed out the cells holding old iron deposits. I felt lighter and walked faster. I still have short days due to fatigue but I do manage to do more before I fall in a heap.
ellen12819 sheryl37154
Posted
I take omega 3,6,9 combined and enzyme q 10. I buy the best i can afford, but not aspirin as my blood is running better now. My Ts is down to
31% and SeFn is 91, hb 142. ( though I think these numbers may be transposed) ...
What make and value q10 do you take? Thank you for the reply.
sheryl37154 ellen12819
Posted
It is bio ceuticals but I don't have a current bottle (capsules), and I think they only have one strength. I just googled it and it is excel 150mg.
Also Vit D3 helps with aches and pains and a hundred other issues - I was very surprised how important it is. The same brand drops forte really work and you can see that it does via blood tests as does Vit B12 (injections).
You might not need Omega 6 as our body is capable of manufacturing its own.
ellen12819 sheryl37154
Posted