second opinion

I'm pretty sure she would scare the hell out of me! I would find a new doctor

Hi deb94549

I would get a second opinion.  The whole reason we have phlebotomies is to drain the organs of iron.  Each time it is done the body uses the iron stored in the organs to replenish the blood that has been lost due to venesection. 

Having venesections twice weekly will probably make you feel very tired and even ill. 

How high is your ferritin?

Hi Deb,

None of them are really upto date with this condition I am afraid. I would ask gp to refer you to a heptologist/ gastro specialist he will only be interested in your liver but it sounds like it is what you need to reassure you of its condition. That way you don't tread on the other ones toes.

But young doctors are better clued up as they have only recently been teaching training doctors about this condition. I was told to join the https://haemochromatosis.org.uk/ society. You will get a bundle of the latest info, diet sheets, stats, trials genetic info explaining everything in laymans terms in a welcome pack, which alone is worth its weight. They send any new findings that the medical bods have straight to you. Knowledge is key and we have to be aware because so many medics are not. They need a truer reading of transferin saturation to know what your true levels are (fast for a minimum of 15 hours for that one).

Your ferritin alone is not a true measure of iron because it can raise with inflamation. Stub your toe, stomach gripes a cold or yes, something more serious. They have to push the importance of the liver because it is one of the worst symptoms and can be fatal if not caught. We are more likely to get the Liver problems if we drink alcohol and take suppliments ( nearly every one contains iron) drink vit c and eat things made with white flour ( all white flour is fortified) in the UK and USA by law. Those items can give someone with GH cirrosis.

I had two venesections a week for three months to force it down as quick as they could,because it kept bouncing. They do this sometimes because you are not dropping fast enough. Once at 50 they know if they just monitor and do the occassional venesection you won't get the nasty stuff. They must watch that you don't get aenemic though.SO In my oppinion your doc has not got the best bedside manner but it seems she is doing the right things. If in doubt still phone the help line 03030401101 they can and will answer any worries you have. I also joined the face book group ran by trainned people who along with us rust ones will help guide and support you. It is scary at first but I have got into maintainence and there is a good way forward. After your numbers are down. Good luck take care. From Ellen.

While in the process of reducing my ferritin levels, it suddenly shot back up.  It turned out my cold I had at the time of the blood test caused the sudden rise in ferritin.  My haematologist unnecessarily ordered more frequent venesections and my ferritin dropped to 13 the next blood test.

When ferritin is artificially raised because of something that has caused some inflammation or infection, it does not need extra venesections.  It generally rights itself.  From memory from an earlier post (but my memory is stuffed), your ferritin levels were not that high, and definitely do not warrant twice a week.  That is appropriate for levels well over 1000.

And you will not need a liver transplant unless you already have cancer of the liver and you would know that by now.  You are not going to get any worse than what you have now unless you stop treatment altogether.

I would have hoped that a young dr would have been taught the latest information regarding HH, but your dr must have failed that part of her training - not that they do much on it.  Unless you have misunderstood her, I would be asking for a second opinion or at least ask to be referred to a haematologist.