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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





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