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Robine--Welcome to the boards! My DH has HH and double gene mutation. We were told that both of our children are carriers. When my son was tested his Internist said he did not have HH, but would have to be monitored every 5 years for this disorder. So, I would think that obviously you can begin to overload without 2 genes present according to what we were told.

Also, according to your labs they are consistent with iron overload, except for the ferritin, which throws me. A low transferrin can also be found in other conditions such as chronic disease, but I don't know much about that. When a serum ferritin and T-Sat % are both elevated along with normal Hgb (I think ferritin has to be over 200 for females) overload is likely, and can be treated. Perhaps this could be a beginning stage of iron overload. Your ferritin is low end normal.

In Iron overload the opposite of iron deficiency occurs in labs. With excessive iron TIBC tends to decrease, serum iron is high and these together result in a high T-Sat %. I still don't get the 28 ferritin iron store in containment. Perhaps this is from an overlapping symptom of Hashi's or something else that you may have.

What does your Hematologist think? I am very curious. I don't think that your iron is high enough to worry. My Hematologist told us that over 10 and under 1000 is the rule. Everyone has a different opinion. My husband is also treated through a GI doc for phlebotomy, organ checks and labs. His ferritin was almost 3,000 and is now 27 and we are told this is without damage. The GI doc said he didn't even need a liver biopsy because the MRI, CT and US are normal and all organs feel normal when palpitated. I'm sorry that you are dealing with so much. Best of luck to you. Keep us posted.
New lab work results are in from 2-19-09 and have improved:

FE(iron) 121 (range 35-150) last one 155 high
UIBC 89 low (range 126-382) last one 48
TIBC 210 low (range 250-450) last one 202
Transferrin Sat 58 (range 15-60) last one 77
Ferritin 30 (range 5-204) last one 28
Alk Phos 39 low (range 40-150) last one 47
Hematocrit 39 (range 36-46) last one 41
Hemoglobin 13.1 (range 12.0-16.0) last one 13.7
RBC 4.02 low (range 4.20-5.40) last one 4.18 RBC have been low consistantly low over many years

Since the concern was high iron and high Transferrin and low UIBC and low TIBC numbers look better, although I know most people on the anemia board are trying to go in the other direction. I am not sure what has made a difference as I haven't changed anything.

Vitamin A- I am researching levels of Vitamin A and it looks like 3,000 IU is recommended for women, but okay to take up to the tolerable level of 10,000 IU without toxicity unless pregnant. I take 6,400 IU in the two multivitamins recommended by my MD, plus carrot juice and a mango daily due to night blindness a few years ago with other eye problems related to celiac malabsorption which have resolved. I called the vitamin company today as the vitamin A is listed on the bottles as from Palmitate, fish, and mixed carotenoids from palm tree fruit along with alpha carotene 8mg and beta carotene 30mg. Only 47% of the vitamin A is palmitate, the type that can be toxic, so my total from the two multivits for palmitate is 3000 IU daily. The rest is from carotene, the kind found in food and that is not toxic. So it looks like I am okay.
The interesting thing I came across in an endocrine magazine I get at work is that Vitamin A intoxication can be the cause of increased osteoclast activity and osteoporosis and even an intake of just twice the RDA (3,000 IU) may decrease BMD and increase fracture risk. Also that chronic Vitamin A intoxication can also accelerate hair loss. Since I do have osteoporosis, I will check with my nutrition MD on my vitamin A levels when I see him next time.


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