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akamaimama 09-14-2009 09:53 AM

Elevated H&H, Jak2 negative... Hemochromatosis,PV...Looking for answers!!
Hello friends,

I have some questions about some recent troublesome blood labs....I'm looking for answers and would appreciate ANY input you can offer. I know many of you have been through the ringer figuring this stuff out, so I'd love to pick your brains.

I'm a 39 y/o mother of a two and four year old...non-smoker, below/healthy weight. No prior health problems. Went in for a routine physical in July and was told my iron levels were high (H&H and transferrin saturation). Waited a month to re-test and transferrin saturation went down, but the hemoglobin went up from 15.8 to 16 and the hematocrit went up from 46.4 to 47.6. My GP initially thought the high iron was a result of taking prenatals for the better part of five years.

I was referred to a hematologist who found that my ferritin (iron storage) looked normal, and my transferrin saturation had come down a bit (from 78 to 61). My iron had come down from 232 to 181. She found similar results on the H&H tests--both were still elevated and this concerned her. So she sent my blood out for tests for the hemochromatosis and polycythemia vera genes, though she didn't think I had hemochromatosis because my iron storage looked normal.

As far as hemochromatosis, I carry only one hemochromatosis gene--so I don't have hemochromatosis.

I came back negative for the Jak2 mutation. My erythropoetin (sp?) levels were normal (don't know the exact result but they were neither low nor high).

Today the hematologist called and said she wants to wait for a month or two to re-test the blood, then possibly do a scan of my belly/organs, and then if that doesn't turn anything up do a bone marrow biopsy. She is not concerned at white blood cells look normal, as do the other seems to just be the H&H that are confusing/disconcerting at this point.

I am freaking out that I may have PV or another bone marrow disease, or possibly a tumor of some sort, and have pushed her to re-test my blood this week and schedule an organ scan (I'm assuming the h&h levels will again be high).

Any thoughts?? I've read that carriers of one hemochromatosis gene can still have elevated iron readings. Any experience with that?? Does anyone know if it's possible to just have high H&H readings with no underlying disease? She said it may ultimately be "idiopathic," but I don't want to wait 6 or 12 months to determine that.

I should say that I feel fatigued quite a bit (though I have two toddlers and rarely sleep more than 6 hours, so that's not surprising), I have a ruddy complexion (it actually worsened in the last year enough so that I had some v-beam laser work done at the dermatologist before I had any idea I had these high iron levels), and over the past few days I've noticed some significant numbness in my pinkies and up toward the elbows in both hands. The hematologist didn't seem worried about the numbness. I also have some sporadic itchiness on my chest and neck--nothing that's driving me crazy but it is noticeable.

HELP! It's hard to know if my symptoms are coincidental, psychosomatic...

Sorry for the long-winded email...any suggestions on course of action or personal experiences would really be appreciated.

Best wishes to all!!


Oleander53 09-14-2009 08:41 PM

Re: Elevated H&H, Jak2 negative... Hemochromatosis,PV...Looking for answers!!
Dear Aka,

My boyfriend is going through the same thing as you. Waiting waiting waiting while they figure it all out. He has seen the Hematologist twice now, having his spleen ultrasound tomorrow, and has not had a Bone Marrow Aspiration yet. He is having his labs restested in 3 more weeks. His White count is really high, borderline high H and H and he is tired alot. He is not ruddy in the face and only itches when he bathes..... He is 45, has never been sick. I pushed him to go because I noticed he was more tired than usual.

What is really weird is his co worker of 10 years has PV with severe symptoms diagnoised 3 years ago. I think they were exposed to some chemical at work. If he turns out to have PV it very unusual that 2 people working together have it. The Hematologist said it has already got him "scratching his head".

I have read everything I can get my hands on and the people on this board are nice and very helpful.

I wish you luck and please let us know what you find out at the Doctor.


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