Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: Pedals423 on January 16, 2010, 08:56:11 PM
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Hi!!
I just wanted to say "Thank You" for this site. This website will be an asset when educating those around me about "Thalassemia."
When I inform people about Thalassemia..... they are like you have "What "anemia?"
Its sometimes hard to break it down and explain.
Any who...
I was diagnosed with Thalassemia last January of 2009. I have always suffered from Iron Deficiency Anemia but was referred to the Hema/Onc docs and they ruled out a bunch of different things then looked closely at my blood. I was diagnosed Thalassemia Minor but do present some symptoms. I had my first IV Iron Infusion where I was hooked up for two days via IV.
Are there any other Thal Minor patients that cannot stomach Iron orally?
I constantly don't agree with it (if taken orally).
Why does Thalassemia correlate between depression, anxiety and asthma?
At my recent doctors appointment I saw my physician and he did a blood test. My hemoglobin is at a 10 and Iron at a 22? I don't know about the levels but what should be my next step. He wants me to take Iron orally and I can't. I am trying to skip going to my hema/onc doctor because right now I am lacking health insurance.
Any suggestions?
Thank you and be blessed.
-Pedals4tennis
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Hi Pedals4tennis,
My suggestion would be to get the full panel of tests called iron studies, rather than just relying on hemoglobin level, which tells absolutely nothing about iron status, and the one iron test (was it serum ferritin?) that you have had. Many, many doctors have erroneously and futilely prescribed iron for thal minors when they don't need it, which can actually lead to health problems caused by too much iron. If it is your serum ferritin at 22, that's not even low, so iron would not be indicated. Unless iron deficiency co-exists with your thal minor, iron cannot possibly raise your Hb level.
Asthma symptoms may be related to the low oxygen level caused by the low hemoglobin level. Much depression and anxiety is related to vitamin D deficiency, so that is something else that should be checked. The difference that vitamin D can make is remarkable, but it has to be high doses to reverse deficiency. I would recommend getting your D level checked. If it is not at least 30, supplements should be considered.
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Hello Michigan,
Many years ago, I had an issue that sounds similar to yours. They found that liquid iron, meant for babies, was what worked for me. I absorbed it better, part of the reason. Also, at the time, I went to a reputable herb store and remember drinking something awful like black strap molasses. I was really sick for a few months, but got better, and it has been about 17 years and haven't had such a problem since.
The best of luck to you! OldThalGal
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Hi,
I took iron for many many years, couldn't tolerate it though. I was also given the baby iron drops, and managed a drop a day, but it didn't make a difference. Finally we figured out that I don't need iron to begin with... unwanted iron can cause many problems, so you need to be careful..
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Hi again!
What I was told was that although I didn't need iron, normally, it was also possible to be anemic, and the combination of anemia and thalassemia is the big challenge. When I actually needed iron, that was the problem and why I had to take the baby iron. In reading other posts on this site, it appears anemia can occur in a thal. For sure, you have to make sure this is the case. I took un needed iron for many years and experienced what they didn't just call normal iron overload. They said I actually had iron poisoning, so, I know, there are big dangers in taking iron, but, if a person has to because the proper tests have shown this, it might be interesting to remember that liquid iroin for babies absorbs differently. And, that differently worked for me when nothing else did. They tried it all. If this site had been here then, and I had known about it, I bet I wouldn't have gone through months of such uncertainty.
I really appreciate all of you who post here and discuss things I didn't realize anyone else understood, or cared to understand.
Hugs and prayers to you all!!!!! OldThalGal
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Yes, thal minor and iron deficient anemia can coincide but they are not related in any way, and this often is an area of confusion. My guess would be that you would expect to see the same rate of iron deficiency in thal minors as you see in the general population.
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Hi Pedals,
:welcomewagon ....