Are weekly blood lettings enough for long term high Ferritin?

You have not told us what your HFE gene results are, what your ferritin level is, your TS% and your serum iron.  All this information helps with answers.

It is a pity you were ignored when your ferritin level was 468.  My dr took 9 years to diagnose with a ferritin level more than double that - and I was donating to the blood bank every 3 months as well.  I was diagnosed when my hips broke up from avascular necrosis.

I am afraid that researchers state that the arthritic pain caused by HH does not go away - ever.  Your brain fog might do so, depending on your levels and how long you were left undiagnosed at a very high level.  But the success rate is high on that one.

Not many people mention the tingling arms and legs nor burning soles of feet, but I am glad you did.  After my hip replacements, one of them botched, I am in continual pain and recently found that my 'burning' feet have become insufferable and I find it very difficult to walk (especially while on a holiday when I was walking a lot).  I had put previous pain in my feet down to my hip replacements - I felt I was walking on the wrong bones in my feet.  Now, even in bed, my feet are burning and also a sort of numb/tingling sensation - but I still feel the pain.

An x-ray decided my spine was ok, so now I will be sent to a neurologist because it sounds like a neuropathy.  Generally, people with diabetes have this problem, but my glucose level is very normal to low.

I had left side chest pain (like in the heart muscle) for 12 months prior to treatment.  This was the only symptom that actually dissipated with venesections for me.  The fatigue and body pain (bone and muscle) still continues 18 years later.  (Symptoms started 26 years ago.)

However, we are all different, with different results.  But you still have a long way to go.  Just keep going with those venesections.  That is virtually the only thing we can do - and remember, it is better than chemo.

I have heard of some people having venesections twice a week.  I personally knew of a young man diagnosed at 22 with a ferritin level of >4000 (he was brought up on a cattle property eating red meat 3 times a day).  I expected that he would have been venesected twice a week, but they stuck to once a week.  Might have been more to do with travel to town to have it done.  His fatigue was extreme too, but it was originally put down to the physical hard work.

i found it best to keep a spread sheet of my Iron Study results so that I could see what was happening.  I eventually worked out what was my optimal level - e.g. at what level I felt best (make notes).  Always ask for copies of your test results if you are not doing so.  With this spreadsheet you will get a better picture of what is happening to you.

While I have been on maintenance of 3 months nows, I now time my IS for just before my venesections to get a correct picture.  I ask my hemotologist for pathology request forms to enable this to occur.

My haemotologist has tried me on 4 monthly to my detriment, so I do not allow that to happen again.  However, now all my levels are starting to stay low, so instead of decreasing frequency, I am going to try reducing the millilitres per venesection.

Anyway, keep talking, let us know your levels and genes - this gives us a better idea.

I am homozygous C282Y, my husband is homozygous H63D, and our son is compound heterozygous C282Y/H63D with a ferritin level of 772 at age 22.  All discovered as a result of my diagnosis.  Same as the young fellow from the cattle property - not related - but symptoms were obvious.

Read Prof Pierre Brissot (France), Prof John Crowe (Ireland), Prof Lawrie Powell (Brisbane, Australia).  There are many more, of course.  If you want to google a symptom, google "...... and iron overload" , rather than haemochromatosis.  It is a lot all at once, but we have to educate ourselves on this to get the correct treatment.

My ferritin was 1,377 and they only proposed fortnightly phlebotomies.I don't think they will do yours more frequently.I was hoping that I would feel better when I got to the 400s.If you still feel tired it seems I'll have to wait a bit longer(970 two weeks ago).

For a guide, go to Iron Disorders Institute - helpful forms and charts - hemochromatosis reference chart.

Those with homozygous C282Y don't usually have problems with Hb keeping up, but twice weekly may be a bit of a stretch for some of us.   I was weekly for a few months after diagnosis and did not have a problem with my haemoglobin.

I meant to say in my previous post that I have been in maintenance mode of every 3 months for years now.

My husband who is homozygous H63D no longer has to have venesections since being treated for hodgkins lymphoma with chemo and radium therapy.  Coincidence? - no one knows, yet.