newly diagnosed. initial levels were just under 1000 so they did genetic testing !. time to start pheblebot, so another test 3 weeks later and levels are at almost 4000. is this normal to jump that much. been super careful to what i eat. anything else to check. i have to twist my drs arm to do anything
Hi Its crazy isn’t it - I’m newly diagnosed too (April 2025) and Ive got to say its been a very steep learning curve indeed. You are absolutely right about GP’s mine has been utterly useless too!! I’ve now had 5 venesections - So few because my doctor sat on the results for weeks before referring me to hepatology!!! I have had little to no meaningful input from anyone and despite the venesection I have yet to see any specialist about my diagnosis and apparently the waiting list is looking like it could be after Christmas before I even get to see anyone! So the venesection continues “blind” - The whole situation is utter madness. What makes matters worse for me is that on this site there doesn’t seem to have been a very active HH community since around 2016. I very much hope your levels are starting to come down now. Sorry I can’t offer any advice, but how are you getting on in general 18 months on?