Frustrated!!

Question

Been going round and round with my primary about just wait and see attitude;past 6mos. or so been feeling really drawn out,complete fatigue and other things.He has been doing Hep panels and noticed elevated levels of serum ferrittin around 364 saying very little to me at all except come back in a mo and heres some more labs to do in six wks.This went on 3x;After the 2nd time I started looking at the codes and looking them up getting more feelings of hopelessness. Did educate myself quite a bit but if I don't have the power to treat myself or get my doc to start thinking of solutions then whats the point?But did come to connect with a group that was legit and a name of a doctor;but have to get a referral from primary.But he seems to like the idea of me waiting another 8wks for same damn tests.Have no option due to financial ruins to just go,so I will see.Don't have my copies of my labs or I would post. serum ferrittin levels from 1st to last were:364,355,306. I know from these other experts;which include many specialists involved with this ironoverload. group that this is way too high for me,and they were right about at least one thing;that when he takes these tests it acts as many minor treatments that will make it appear to be getting better but in reality you have to have aggressive phlebotomies in order to de-iron so to speak, a full unit;500mls at least once a week for quite some time.I'd give alot just to not feel this sick;by the way my hep panels have all been negative,but have a few enzyme levels that are high.Sorry for the novel.But How the hell can you get your complacent and vague doctor to do the right thing???

zmombomb · Answer

please contact your insurance company and tell them you want another primary care provider and to stop all the current doctors you are seeing.  Tell them you are being used as a guniea pig and want off the merry go round.  Go to the nearest blood bank and ask if you can sign up to give blood just to get it out while waiting for the new docs to accept you.  What about the ER docs?  Can you try them and say, Hey, I need to let out some blood before it kills me, can you help me out?"  I can't understand why they don't have you hooked up to a vampire somewhere by now! LOL!  I truly hate doctors!  Where are you located?  I didn't get far enough in your profile to check that out~

sharatan · Answer

Trust me I have tried unbelievably hard at convincing both my pdoc and primary just this past thursday,they both shut me down and refused to give me a bloody referral;they seem quite chummy and share info often,but out of the kindness of their hearts(sarcasm)they did say to take another test(exact same tests)in 8wks;if still high then primary would give me a referral to the doctor I was recommended by the ironoverload.org member.I'm in a very horrible system and have been disabled for the past 10+yrs.both physically and mentally,been used as a billing scheme for sure.They are very cruel and unusual people for sure.And I have no other option of changing my primary now.So guess I will just have to wait.Sure wish I had a lawyer in my family.Take care all.thanks.

GSDgirl · Answer

I am not the most up on all the studies BUT the hemochromatosis NEEDS to be under control before the iron overload destroys your liver.  Find some legit studies and explainations and present them to your doc, better yet switch docs and get yourself taked care of.  Honest, I wouldn't sit back and wait until my liver was shot and then say "I told you so".  Good Luck

sharatan · Answer

yeah,but I just couldnt discover the right forum,sorry.And its weird that my doc keeps testing for hepatitis, guess he will just wait and see.And yeah,hemachromatosis is what was suggested,have all the dam symptoms but no good doctor.

GSDgirl · Answer

It sounds like you know what needs done, phlebotomies.  Did they mention hemochromatosis (sp?) for your condition?  

I don't know how to get your doc on the right track but you will definately feel better after you get that extra iron out of your body.

Like Frank said, If you don't have hep C you are in the wrong forum.  Good Luck

Denise