HELP!! Thalassemia Minor and Iron Infusions

Hi Andy and ALL!!

I have beta thalassemia and I've always been told I was iron deficient. I never took anything because I always thought because of the thalassemia that it wouldn't help to take iron. Well recently I've had a heavy metal toxicity blood test done. My Zinc (ZPP) levels were high and I was told it was either because of lead or because of iron deficiency. I went to a Hemotologist who confirmed it was iron deficiency. He explained that I can have both thalassemia and lack of iron. So he prescribed me iron supplements. I went to another Hemotologist for a second opinion because I know how dangerous it could be to take iron if you don't actually need it. The second opinion said I need iron as well. The iron pills were causing serious constipation so he suggested iron IV. I had Iron injected into my arm yesterday. (400 mg) I have to do this three more times. (4 sessions total) I'm still worried that maybe I shouldn't be taking iron. My levels from blood work are below from march and just last week. May I please ask for your input?  Thank you so much!!!

Most recent blood work

hemoglobin: 10.1
iron, total: 150
TIBC: 311
transferrin saturation: 48
ferretin:15


March 7th blood work

hemoglobin: 11.1
serum iron: 145
iron binding capacity: TOT 359
iron saturation: 40
ferritin 10


--------------------------------------------------------------------------------

Hi sisi7 and welcome,

Your Hb is low, which is expected with thal minor. Your iron tests are all normal except for the serum ferritin. Normally with iron deficiency, the serum iron and iron saturation will be low, with a high TIBC, and a low ferritin, but with low ferritin only and accounting for the low Hb with thal minor, it is difficult to say that you are iron deficient from these two test results. There are two other conditions that cause low ferritin only. One is common, hypothyroid and the other not so much anymore, scurvy. Scurvy is the result of vitamin C deficiency and is uncommon in today's world. Has your thyroid been tested? There is also another reason that zinc levels would be high. Copper deficiency results in high zinc levels. This can also be tested. Iron therapy should show an increase in Hb over a one month period. If no change is noted, it is one more indication that you are not iron deficient. Nutrition is important for thal minors, so make sure your diet is healthy and you may want to find a good multivitamin with minerals.

Thanks Andy! You are absolutely head on about the thyroid. Two months ago I was diagnosed with Hashimotos and my thyroid was hypo. I am now on a naturally dessicated thyroid (Naturethroid) and in order to increase the dose I need optimal iron levels. Which may be impossible with my Thalassemia I will definitely have my copper levels tested. I told my doctor that it is normal for low ferritin and iron in Thals and he was convinced I am iron deficient because of the Zinc. I will mention the copper.

The strange thing is this past January my serum iron was 16 L and my iron and saturation was 5 L which were low. I have three more infusion sessions and I will see if my Hb is increasing. My concern is, if the iron is not increasing my Hb then where is the iron going?? Is it harmful to my body (organs) I am also very low in Vit D. I was a vegeterian and almost vegan for 3 years before I started having a breathing problem 4 months ago which is when I dove into doctor visits! It is a breathing problem I have that has been termed as "air hunger" I cant take a deep satisfying breath. I constantly feel I have to yawn to get any air in. I am always gasping for air even when I am sitting. The only time I have relief is when I am sleeping. Its been so hard dealing with it but I am determined to get my health  back on track. Any advice or information is greatly appreciated! I thank you for listening...

I would suggest getting your vitamin D level above 35 and see if it makes any difference Low D can cause low absorption of minerals. Low D has also been shown to be linked to asthma, so getting the D level up should be a priority. When levels are extremely low, doctors will often give large doses of at least 50,000 IU at a time. This is the only way that you can quickly raise the level. Normal iron levels can easily be maintained on a vegetarian diet, as long as foods rich in iron are a regular part of the diet. Eating foods high in vitamin C along with high iron veg foods will aid in iron absorption.

Thank you so much. I will indeed continue working on getting my Vitamin D levels up. I am taking Vitamin D drops under my tongue for better absorption. One last thing (sorry!) Should I go through with the next 3 iron infusions (at 400 mg each) And see if it brings my Hb up? If it doesn't is it safe to say that excess iron is safely flushed out of my body?

Because you have made so much progress with the infusions, I would suggest one more and then a ferritin check before taking another infusion, as your serum iron level is quite good. Regarding your diet, make sure you are getting plenty of foods with vitamin C as this will aid iron absorption from your diet. I find that a nutritious diet is a must for thal minors.

Hi Andy! My hematologist just called me and left a voicemail telling me my Ferritin is up to 258 from 15!!! isnt this too high??? he said my  iron binding capacity is 238.  the blood count and size of the cell were the same. He said the anemia is because of the Thalassemia not because of iron and that I can stop taking iron. I tried to voice my concern about this before we did the infusion but he insisted. Am i in danger???

Your ferritin is higher than normal, but the level is safe. Your serum iron was fine before the last infusion, and only your ferritin was low. You shouldn't need anymore iron supplements. Don't be too concerned about the ferritin, as it is affected by other factors besides iron.

Thank you so much Andy!! I really appreciate all your help!