Thal beta minor AND iron deficient? should I take supplements?

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I have thalassemia beta minor, and I have been sick with a throat infection for over a month.  I'm now on my third course of antibiotics after seeing a throat specialist.  Note that I already had my tonsils removed 10 years ago, so it is pretty unusual to have got strep throat again.  I have felt very faint in the last couple of days and yesterday I passed out twice.

In a recent blood test the doctor took at the highest point of iron in my cycle (I'm female), my ferritin was at 28.  She suggested that as I have been sick for a while, my iron levels may have depleted further and that they are probably lower than that anyway.  She thinks that as well as being thal minor, I have got an iron deficiency anaemia at the same time, is this possible?

So she has told me to take 100mg of iron supplements per day for 2 weeks and then do another blood test, but I am worried about whether this is just because she doesn't really know why I passed out, and I really don't want to overload with iron.  So far I have only taken 1 iron pill and I can taste metallic in my mouth and also have a slight stomach ache even though I took it with food (though this could be normal side effects?).

Please help!  Any advice would be really useful as I am worried about damaging myself with excess unnecessary iron...

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Offline Andy Battaglia

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Re: Thal beta minor AND iron deficient? should I take supplements?
« Reply #1 on: March 20, 2014, 10:20:09 PM »
It is possible to have both thal minor and IDA. The chances are probably the same as they are for the general population. Your ferritin is on the low end, but were any other iron tests run? TIBC and serum iron would be helpful in determining if you are deficient in iron. Do you know what your hemoglobin level or hematocrit are? Other possibilities are B-12 and folate deficiencies. If you don't respond to iron, those should also be tested. You may find it difficult to take iron supplements if they cause bloating. Sometimes, IV iron is needed so the patient can actually absorb the iron. I couldn't even tolerate low doses of iron. I used diet to raise mine back to normal.
Andy

All we are saying is give thals a chance.

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Offline Andy Battaglia

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Re: Thal beta minor AND iron deficient? should I take supplements?
« Reply #2 on: March 20, 2014, 10:35:37 PM »
One more thing I should add is that if you're getting infections easily (most thal minors do) have your vitamin D level checked, as low D makes for a weaker immune system. Also, you can take vitamin C safely, unlike with thal majors who have to limit their dose. C is also very good for your immune system. And be aware that there is a really bad sore throat going around this winter. I know several people who have had it and one of them is on his 5th week of it right now.
Andy

All we are saying is give thals a chance.

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Offline lighthumor

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Re: Thal beta minor AND iron deficient? should I take supplements?
« Reply #3 on: May 17, 2014, 10:23:15 PM »
Hello,

I have been told my a gastroenterologist that I need to go on IV iron.  Here are my stats:

40 year old man, overweight but generally physically fit (distance runner).  My last blood work in August showed low iron, and this test showed it again in late April. (although I did have a case of Salmonella on the day the blood was drawn in April).

Here are the stats from my blood work a few weeks ago:
- Hemoglobin - 15.2 (normal)
- Hematocrit - 45 (normal)
- Iron Stores - 25 (Normal is 60-160)
- Iron O2 saturation - less than 10 (normal is 18-50).

I have been running about 3 years now and dropped quite a bit of weight by doing it.  I've run a couple of full marathons and a dozen half marathons... did 8 of those halfs last year.  This spring I was trying to train for a full marathon but my runs were getting worse and worse the longer I went.  My energy level was faltering earlier than normal.  So I think that might be related to the low iron...  Also, sorry to get too personal here, but I have pretty consistent runner's trots when I go over 3-5 miles, and they seem to be getting worse the longer I run.  Don't know if that can be attributed to the Thalassemia or the iron problems... but I digress.

I was diagnosed Beta Thalassemia Minor in 1996 and told (as it seems most are) that I would never experience a symptom... but reading what I read now helps me make a lot of sense why I was never good at intense, anaerobic exercise, and why I get dizzy after intense exercise.  Wish I would have known years ago how much I love to run distance though... probably would be in better shape today.

Anyhow, the GI doctor wants me to go on five treatments of Venofer.  I start on Monday... I gather my iron stores and O2 are low, so I see that it's important to replenish them.  I'm just curious, am I putting myself at risk for having too much iron given these treatments? (i.e. can some of that deficiency be related to the thalassemia?

Thanks,

JIM

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Offline Andy Battaglia

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Re: Thal beta minor AND iron deficient? should I take supplements?
« Reply #4 on: May 18, 2014, 08:09:58 PM »
I would suggest seeing a hematologist instead. Your Hb is perfectly normal. Was a value given for TIBC? If that isn't high, you are not iron deficient. At most, you are iron depleted and this is easily corrected by diet.
Andy

All we are saying is give thals a chance.

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Offline lighthumor

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Re: Thal beta minor AND iron deficient? should I take supplements?
« Reply #5 on: May 26, 2014, 09:28:39 PM »
Just a quick follow-up to let you know that I went ahead and started the IV iron treatments (Venofer, given 5 times over the course of 14 days.)  After only 3 of 5 treatments, I feel so much better!  I had no idea how worn out I was feeling.  I feel more alert, my energy has returned, I think clearer and I also feel like I can see better.  And I've had a few people remark that I look healthier.

This is not getting to the bottom of why I had the deficiency but it at least has been a massive improvement for me in the shorter term.  I'll try to report back as I get more info.

Thanks for your help.

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Offline lighthumor

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Re: Thal beta minor AND iron deficient? should I take supplements?
« Reply #6 on: September 24, 2015, 04:03:43 AM »
Well this is interesting.

Finally, Andy, I did see a Hematologist.  A couple months ago.  Based on my most recent blood tests, he sent me in for another round of Venofer.  Just followed up with him today and he clarified for me - he said it's not beta thalassemia, it's likely ALPHA thalassemia minor.  So he's ordered me off supplemental iron and to come back for another blood test to see how things are progressing.  No major conclusions... but at least we're on a path.

As a side note, again, I had positive effects from the iron... I had been feeling very low in energy, and with the iron it was kind of like a renewal.  Seems like I do occasionally slip into Anemia.  Regardless, I'm really happy to have a doctor that *knows* what to do and doesn't just tell me to take iron pills.

Just thought I would share.  Still feeling confused, but at least there is now a direction!  Thanks!

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Offline Andy Battaglia

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Re: Thal beta minor AND iron deficient? should I take supplements?
« Reply #7 on: September 25, 2015, 08:18:33 PM »
Thanks for the report. Sounds like you're in good hands with a doctor who will only continue iron when it's warranted. I would advise to never trust ferritin level alone, but to do the full iron panel before supplementing with iron. I have observed that most alpha carriers that show reports here show low ferritin, even without being iron deficient. Your response to iron does indicate you were deficient. I'm glad your doctor understands that it should be treated on a short term basis.
Andy

All we are saying is give thals a chance.

 

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