Hi, just back from the hospital. ferritin level up again by 200 so it is now 2500 and the hemoglobin is 116 and the transferrin saturdation is 93. I dont think it makes good reading but when I asked questions, I was told just keep on giving blood weekly and it will come down. But, it is not showing anty sign of that. Is it worth continuing with weekly blood letting if is not having the desired affect. Can't seem to get a hold of the consultant either. Glyn
Hi glyn
Sorry to hear your still having problems getting your levels down,there
Has to be a logically solution, I would demand to see the consultant
( almost certain the consultant would review each case with his
Underlings ) re weekly v fortnightly it's your body if your levels are no
Different fortnightly you tell them that's what you want??.
Have you discussed your predicament with the hemochromatosis
Society ,I would suggest you email them with a brief outline of your
Condition and treatment
Cheers philx
Thanks Phil, I will contact the haermochromatosis society and see what they say. It certainly wont do any harm in asking. I did ask the nurse if I could speak to the consultant but was told he was busy on wards but she would try and have a word with him later in the day. So, its back next week to give another pint. But, if it is up again, I think I will just stay there until someone can give me answers. Glyn
Hi Glyn.
The fact is your ferritin level is dangerously high. The number one priority is getting that level down. Many folk have phlebotomy treatment twice a week to lower dangerously high levels. If it was me, I would be urgently going down that road.
Do you have any infections, or inflammation at the moment...as this can make your levels elevate quite substantially?
Def phone the Haemochromatosis Society and seek their advice as well. I would be wanting an urgent appointment with the Consultant, even going private, and I'd want bi weekly venesections to really work at getting those levels down. Focus on key dietary tips as well....plenty of calcium and tea when eating meals...cut out or down on red meat. Don't eat anything with added iron which many cereals have, and most bread, cakes and biscuits...check the labels. Cut out too much vitamin C when eating meals...ie don't have a big glass of orange juice with your breakfast.
Hope those levels start coming down soon. Don't take any nonsense...demand action asap....keep us posted. Mike.
Hi, thanks for the info and advice and I shall post the outcome of my discussions with the Harmochrmatosis society. I am just baffled as to why the ferritin level will not gradually reduce given that I am on weekly venesections. I also have severe arthritis, exascerbated by the HH and the Consultant I spoke to on Monday last said that my ankle is, as he put it, dead, no movement, and beyond repair. My only option is to have pain relief injections which will be starting soon. I go from week to week hoping the ferritin level will be down and maybe next wednesday, it will be. Thanks again, Glyn
I wonder whether the very severe arthritis, with the inflammation associated with that is the key as to why your ferritin levels remain high. I remember in my treatment phase, I had a really horrendous sore throat...totally inflamed, and a virus infection. My level had been 320 at the time. During this awful inflammation I had, the ferritin level shot up to 870!! Funnily enough, the virus infection was caused by strong medication I was on for my painful iron fist..the medication lowered my immune system, and attacked I was by a viral infection, and up shot my ferritin level. I came of the medication...started to feel better a few days later. My levels dropped from 870 to 438 in one week. Then a few months later I was down to 21.
Only a thought to share with you....can only begin to imagine your frustrations with your level just not going down. As I say, make sure all is well on the infection and inflammation side of things.....all the best. Mike.
Hi mike+Glyn
When I questioned the consultant as to why levels drop differently
After v/sections he said exactly that, if you have any infection or illness
It will affect the way levels drop???
So mike you could be right,but surely the different consultants would
Pick up on this.
But Glyn I would most certainly keep mentioning your severe arthritis
To the haematology consultant (should you ever get to see them)
Also the hemochromatosis society, grasp at any straws going.
One just might be the trigger????
Cheers philx
HI, THANK YOU FOR YOUR ADVICE. II DID MENTION HAEMOCHROMATOSIS TO THE ORTHOPAEDIC SURGEON LAST MONDAY WHEN HE SAID MY ANKLE IS SEVERELY ARTHRITIC AND BEYOND REPAIR, NO OPERATION OFFERED, ONLY PAIN RELIEF INJECTIONS BUT I AM WONDERING IF THESE INJECTIONS WILL BE ANY GOOD AS HE ALSO SAID THE ANKLE IS DEAD BASICALLY, NO MOVEMENT AND SWOLLEN. . DONT KNOW ANYONE THAT HAS HAD THESE INJECTIONS TO ASK. SO IF ANYONE HAS HAD THEM, ANY ADVICE WOULD BE WELCOME. GLYN