[Chirley]

Hi liftaddict??,

I have a metabolic deficiency (unnamed and very rare) which prevents me from absorbing, retaining and perhaps utilizing copper efficiently.

I see my haematologist and up until recently was also seeing a Metabolic Medicine specialist and a Neurologist. I have been discharged from their care and now only see the haematologist. I have been referred to an Endocrine Clinic but haven't received an appointment yet.

When the copper deficiency was first discovered my haematologist gave me heaps of journal articles to read. I noticed that in a couple of the articles it was found that people with copper deficiency and a current OR prior history of B12 deficiency tended to have a poorer neurological outcome than people who never had B 12 deficiency.

I recommend that you see a Neurologist even if you don't feel you have a problem so that you have a baseline to work from in case you develop some problems in the future. Having said that, my neurologist was pretty much a useless waste of time so I hope if you do decide to see a neurologist that you get a better one than I had.

I have a suspicion that long term copper deficiency may cause long term bone marrow problems. This is just a suspicion and is based soley on my recent blood results. I used to have pretty much completely normal blood counts when my copper was supplemented and the copper level was in the normal or even slightly below normal range. For the last few months my blood counts are often low even with a normal blood copper and my platelets are always below normal now. My bone marrow seems to be more fragile than it used to be and my counts don't bounce back the way they used to. Because of this, I highly recommend that you have the copper deficiency and B12 deficiency fixed as soon and as
aggressively as you can so that any potential long term marrow impact is minimized.

The Mayo Clinic had a copper replacement protocol of Intravenous Copper Sulfate 2.8mgs (from memory) per day for 5 days and if necessary repeat in a few weeks time if the blood copper is still below normal. I have a regime of IV copper Sulfate 4mgs a day for 5 days every third week but this is only because I can't retain the copper (I excrete it in my urine). You shouldn't have this problem.

As far as I'm aware, there is no such thing in Australia as a haematologist who specializes in Copper deficiency and I doubt if there is any such thing in the US either. Because you have an existing absorption problem from your stomach perhaps your best bet would be to see a Gastroenterologist as well as the Haematologist.

Best of luck to you.

Regards

Chirley


I forgot to mention Cathy Bees husband was receiving IV injections od copper for a while but they didn't seem to help his blood counts so he stopped having them, perhaps you can ask Cathy about them.