Beta Thal + Iron Def = Confirmation

I recently had iron studies done and confirmed that I have both Beta Thalassemia Minor and Iron Deficiency Anemia.  I was give a 1000mg of iron by IV 2 weeks ago b/c my ferritin level was down to 6.  I really don't feel much different yet.  Was suppose to see doctor yesterday to see if my ferritin level increased after the iron, but he had to reschedule my appt - so I am going on the 18th.  They are still running other test b/c not sure why my iron is being depleted.  I am being tested for something called Sprue or Celiac disease - a disease in the small intestine that can cause iron deficiency.  These ongoing health issues are really wearing me out

Hi Tammy, Im checking the forums before I get my sleep. I would like to answer your question, but I'm a little too tired to write everything I know here now. I'm sure more educated people will answer. If not, it's only because it's weekend. Best wishes, Dore PS is celiac disease not related to cereals allergy?

Celiac disease is related to grains, especially wheat and is also known as gluten intolerance. Avoiding wheat and looking for gluten-free foods can give you some idea if this is the cause of your problems. The absorption problem created by celiac disease can cause deficiencies of many nutrients including iron, so this should definitely be investigated.

I am one of those thal minors who is symptomatic, AND have had long standing low ferritin levels.  There is no thalassemia center here, and I have only encountered doctors who do not recognize 'trait' as having clinical importance to date.

There have been one or two studies that I found in researching this, perhaps in Pakistan or that region of the world, that found that sometimes these two things [thal. minor trait + iron deficiency anemia] coexist.

Is it safe to assume that one should definately not take iron in thal minor because we really have not been studied to see long term effects of possible increased iron absorption?   

This summer I began taking an elemental iron supplement faithfully because I am so tired of being tired and having my hair look like I have had chemotherapy [well, not that bad, but this situation gives a whole new meaning to a 'bad hair day'!].

Whether it was related or not, after about 2 months I had serious swelling in my legs, and got off the iron after some blood testing; after about another 1-2 months, the swelling subsided.

For now I have been told not to take iron. 

There are other health issues I have been diagnosed with for which low ferritin is commonly diagnosed [celiac and gluten intolerance are often found as well in persons with CFS and fibromyalgia...no positive dx. for celiac in limited testing done so far...].

Andy or anyone with knowledge on this, reply would be greatly appreciated!

I'm a beta thal minor and I have iron deficiency at times too. My hemoglobin and ferritin are always low, even when I am on iron supplements. Usually both around 9-10.

I have not been tested for celiac disease but I stopped gluten foods since I felt they were making me sick. Since then my iron levels seem normal too, though I will get tested regularly and take supplements whenever required. Overall too, my health and energy levels are better, I feel like my food is finally being absorbed in my body!

If you're gluten intolerant, i assume you might have other symptoms too, like IBS or more? Andy might know better.

Andy?

Ferritin tests alone are not a reliable indicator of iron deficient anemia. A complete panel of tests called iron studies, should be done to assess whether or not it is really iron deficiency. Low ferritin may indicate other problems but unless corroborated by iron studies, iron supplements should not be taken, as long term iron use can cause many problems if iron is not needed.

Celiac disease can cause iron deficiency due to malabsorption of nutrients but anemia is unlikely in IBS unless there has also been bleeding. Both syndromes are difficult to diagnose and are done through a checklist of assorted symptoms and test results. A competent gastroenterologist should be able to make a diagnosis. Because celiac disease does cause absorption problems, it should not be assumed that low iron is the only cause of anemia, as both folate and B-12 can also be under-absorbed, leading to anemia. However, the path to correction is not just taking supplements. The main focus of treatment for celiac disease is removing gluten from the diet. Once this is accomplished, absorption of nutrients can become normal again, reversing the anemia.

Andy, do you happen to know what iron studies include?  Would you possibly be referring to ferritin, iron, TIBC, transferrin?  Are there any other tests in the iron studies panel?  Thanks! 

Full iron studies include:

serum Iron
Transferrin
Transferrin Saturation
Ferritin
Total Iron Binding Capacity (TIBC)

Hope this helps

manal

Thanks, Manal

P.S.  Can one assume that if these tests are below normal range, that this is actual iron deficiency? 

The tests have to be considered together and not all of them show iron deficiency with low levels. If you have a set of results, I can look at them for you.

Thank you, Andy.  I will be getting some results soon, and that would be great!

Hi, have you done those tests already? Received results? We hope to hear from you soon. I hope you are doing well.

I want to add something about the iron panel. Together, these tests can give a pretty good idea of one's iron status, but no blood test or group of tests will be 100% definitive. A biopsy may be the only way iron could accurately be measured but this also has its limitations and seems to be overkill for determining iron deficiency. A two week test of taking iron should quickly tell one if their symptoms can be improved with iron supplements. Low ferritin does not necessarily mean iron deficiency even though most doctors will treat it as such. I tend to feel that iron deficiency is far less common than believed and for good reason. Our bodies have no natural way to remove iron. We lose about 1 mg iron daily from loss of skin, hair and blood, but 1 mg is far less than what we take in daily through diet, so it seems that it would be very difficult to actually be iron deficient without significant blood loss. On the other hand, there is tremendous evidence that people have too much iron in their bodies, as bacteria, viruses and cancer all thrive in a high iron environment, which has to make one wonder why iron is pushed so much.

Thalfriend, if you took iron and you felt worse while taking it, there is a very good chance you don't need it. Have you had the iron studies done yet?

This is just a tiny little vent. I called my daughters pediatrician to go over the supplements I would like to give her and talk about a plan for her symptoms. I let her know that this visit will be about the thal confirmation so that they can get a copy of the paperwork. Her nurse called back and tells me that while I'm waiting for my appt in 3 weeks I need to make sure that I'm giving her a multi w/iron everyday. I let her know that her Doc from the blood disorder clinic says a low iron diet for her...are you sure I should be giving her iron? She'll get back to me.

Is this how it works? Is thalassemia all about personal choice in medical practices? No protocols set in place? If I know more about this than her Doc we're in trouble.