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My hematologist ordered the following bloodwork:

FE(Iron) 155 high, (range 35-150) one month later 101
UIBC 48 low, (range 126-382)
Calculated TIBC 202 low, (range 250-450)
Transferrin Sat 77 high (range 15-60)
B12 1200 high (range 208-964) Has been at this number for 5 years
Several docs were asked about this one and are not concerned.
Ferritin 28 (range 5-204)
Hematocrit 41 (range 36-46)
Hemoglobin 13.7 (range 12.0-16.0)
Platelets 128 low (range 159-400)
RBC 4.25 (range 4.20-5.40) Were low now normal

I had the gene test for hemochromatosis and I have one gene-doc said you need two genes to have the disease. I am having an MRI of the liver to be sure there are no iron deposits in my liver and repeat blood tests next week. I do not take any iron supplements. I eat meat only occasionally as I still have trouble digesting it due to celiac malabsorption which is now so much better than it was a few years ago.

Any ideas why my labs may be out of range and what the UIBC, calculated TIBC, Transferrin Sat mean?
Platelets have been low for at least a year and doc said that is ITP (autoimmune). I also have autoimmune celiac, hasimoto's autoimmune thyroditis, and autoimmune addison's disease as well as high parathyroid hormones.
I posted on another board, and it was suggested that I ask on the anemia board.
Thank you for any information.
Robine
Thanks to all for the detailed information. It gives me lots to think about and question before I see the hematologist on 2-27. I also looked up some of my old labs of which there are many. I did have a hysterectomy in 1986. Most of my life I was anemic as labs from 1990 show, even after the above surgery. Anemia most likely due to celiac undiagnosed at this time.

9-1990
RBC 4.5 (range 4.8-10.8)
Hematocrit 33.9 (range 37-47)
Hemoglobin 11.6 (range 12-16)
TSH (0.7) low (range 3.4-5.0) just interesting as I hadn't been diagnosed with Hasimoto's at this time. Range for TSH has changed since then.

In 2005
Ferritin 176 high (range 13-150)
TIBC 254 low (range 260-470)
Folate high says greater than 20 (range 2-20) No number given
Iron 75 (range 30-160)
Hemoglobin 13.6 (range 12-16)
Hematocrit 39.8 (range 36-48)
Vitamin B12 1129 high (range 240-900)
TSH 2.0 (range .27-4.2) still not diagnosed with Hashimoto's
Platelet Count 142 low (range 150-440) not yet diagnosed with ITP

8-2008
Iron 117 (range 35-150)
UIBC 100 low (range 126-382)
TIBC 216 low (range 250-450)
Transferrin Sat 54 (range 15-60)
Hematocrit 40 (range 36-46)
Hemoglobin 13.2 (range 12-16)
Ferritin 29 (range 5-204)

11-2008
FE (Iron) 155 high (range 35-150)
UIBC 48 low (range 126-382)
TIBC 202 low (range 250-450)
Transferrin Sat 77 high (range 15-60)
Hematocrit 41 (range 36-46)
Hemoglobin 13.7 (range 12-16)
Ferritin 29 (range 5-204)
Platelets 128 low (range 150-400)
TSH 0.35 (range 0.3.5-4.94) Endo MD wants TSH below 1.0

5 years ago celiac was diagnosed along with osteoporosis, 3 years ago hasimoto's diagnosed, 2 years ago addison's diagnosed, 1 year ago ITP diagnosed.
I think the malabsorption associated with celiac has probably affected iron absorption for a long time and has now improved considerably.

Now that absorption is much better my iron is creeping up, UIBC and TIBC both going down. Ferritin was up 4 years ago, and has been creeping down. Perhaps lower Ferritin is associated with hashi as suggested.

All my minerals and vitamins were far below normal 5 years ago due to celiac. I have been on some prescribed vitamins and intravenous infusions to bring things up. No iron given at all. No B12 in infusion either. B12 in vitamins is 600 mcg daily. Docs are not worried about B12 elevation due to supplements. I do take prescription pancreatic enzymes to improve absorption so that may influence things as well. When I see the nutrition doc in March I will see if he wants to check Vitamin A levels again.

Audrey- Thanks for the information on the thyroid board. I didn't think about the anemia board as my iron, etc was on the high end except for ferritin.

Donna: I did check my vitamins and there is more than the usual of vitamin A - 3,200IU in one, 3,700 IU in the other. I think 4000IU is the daily recommendation normally. Since they are multi vitamins and eye vitamins (due to extreme night blindness and some eye swelling of cornea and macular with extremely dry eyes when malabsorption was at its worst and preventing me from driving in the dark and on bright or rainy days for about 6 months), I will ask my nutrition doc about dropping the dose to half. All the eye problems have resolved with the vitamins so don't want to stop vitamins all together. I could never tolerate vitamins before my doc recommended the current vitamin supplements and B12 is included with all the other things I need. I also drink carrot juice twice a day so will try once a day. I'm sure you are right that the orange color in palms and bottom of feet is from increased vitamin A. Thank you.

Donna: Did the MRI of the liver include a scan with dye or does the iron show up because the MRI picks it up as a metal type substance?

FLFlowergirl: My hematologist wants the MRI to check on iron damage to the liver. I had an MRi of abdomen 4 years ago and liver was normal at that time. She and my endocrinologist both keep wondering why after being on a very strict gluten free diet my other organs are being damaged so have ruled out all the other autoimmune diseases with a rheumatologist in Boston (ANA is also mildly elevated). She mentioned phlebotomy if numbers continue to be up even if MRI is negative, to prevent damage to liver.

FLFlowergirl, what is the US your DH had? What does the gastroenterologist do to check organs? Also which tests did your children have to screen for hemochromatosis? My daughters both need to be tested but would like to tell them which tests to have-probably gene tests and all the iron tests. At this point they are both anemic.

Thanks again to all for taking the time to respond in detail to my questions. It is really helping me put some of the pieces together in this ongoing puzzle.
Enjoy the day!

Robine
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.

Robine





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