Thal Minor, fatigue and iron levels

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Offline Hamtaro

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Thal Minor, fatigue and iron levels
« on: August 09, 2014, 08:06:49 PM »
I haven't posted here since like two years ago, but I have bloodwork this time. (I have beta thalassemia minor)
So, every year I get my blood tested just to keep an eye on things and make sure I have all my nutrients. My doctors some years tell me I'm iron deficient even though my iron levels are within normal range on the bloodwork (and they know I have thal minor). This time I've been told to take iron supplements twice a day. However, looking at my bloodwork it just looks to me like I have thal minor and no iron deficiency.

I also am concerned because during my period, I get very fatigued and this wreaks havoc on my sleep schedule and energy levels. The doctor recommended I go on birth control because of this saying that my period makes my hemoglobin drop even lower than it already is. But my mom and I are hesitant to do this and would prefer taking supplements or adjusting my diet to me taking birth control.

So I'm curious whether or not you all think my blood test indicates thal minor with iron deficiency or thal minor alone, as well as what suggestions you have for my fatigue.

Here are my blood test results (if there's any more details you need from my bloodwork that I left out just ask):
WBC - 10.1 normal
RBC - 6.08 high (w/ the notes: polychromasia/microcytes/hypochromasia/elliptocytes present/marked anisocytosis)
Hemoglobin - 10.9 low
Hematocrit - 35.3 normal
MCV - 58 low
MCH - 17.9 low
MCHC - 30.9 low
RDW - 18.2 high
platelets - 317 normal
Iron Bind.Cap. (TIBC) - 324 normal
UIBC - 240 normal
Iron, Serum - 84 normal
Iron Saturation - 26 normal

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Offline Andy Battaglia

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Re: Thal Minor, fatigue and iron levels
« Reply #1 on: August 12, 2014, 01:39:50 AM »
I find it unbelievable that a trained doctor can look at these results and claim iron deficiency is present. Each separate iten is normal, so how can they add up to iron deficient? They can't. Iron is potentially harmful when taken when not needed. If you look through the post by Danny.H, you can see a horror story that happened when doctors ignored thal and pretended iron deficiency was present. http://www.thalassemiapatientsandfriends.com/index.php/topic,5038.msg49410.html#msg49410
You are far better off taking supplements like folic acid, which your body needs to build red blood cells.

Please do not take iron. It won't help and can harm.
Andy

All we are saying is give thals a chance.

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Offline Hamtaro

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Re: Thal Minor, fatigue and iron levels
« Reply #2 on: August 13, 2014, 01:46:20 AM »
And this isn't the first time I've been told to take iron supplements either. I've had two different family doctors on two different occasions tell me to do so, even when my iron levels on my blood tests were in range/normal. My guess is that they get the results and don't really know what thalassemia looks like on blood test results and go "oh, look, anemia! they need iron!"

I'm just gonna try to take the supplements advised on the forum here and see how I feel after a month or so.

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Offline JV

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Re: Thal Minor, fatigue and iron levels
« Reply #3 on: August 13, 2014, 01:57:33 AM »
Hamtaro...same thing happened to me as well.

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Offline CatherineM

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Re: Thal Minor, fatigue and iron levels
« Reply #4 on: August 23, 2014, 07:48:04 AM »
Is there a number for MCV? Or b12?

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Offline Andy Battaglia

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Re: Thal Minor, fatigue and iron levels
« Reply #5 on: August 23, 2014, 04:16:50 PM »
The MCV of Hamtaro is quite low and I feel that it could probably be improved with high doses of folic acid, at least 2-5 mg daily. It will never be normal in a thal minor, but the red blood cells are quite small and that is something that should be improved. B-12 deficiency results in larger red blood cells, so deficiency is probably not the case here.
Andy

All we are saying is give thals a chance.

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Offline CatherineM

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Re: Thal Minor, fatigue and iron levels
« Reply #6 on: August 24, 2014, 01:46:57 AM »
Hi Andy

I know you much more the ever know about thalassemia. 

In Australia a country which puts folate in our breads products, there is now a growing problems with vitamin b12 levels.  The cut off range for B12 is way low.

It is my believe that B12 levels also need to be checked.

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Offline Andy Battaglia

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Re: Thal Minor, fatigue and iron levels
« Reply #7 on: August 24, 2014, 02:57:36 AM »
I think everyone with thal should be taking a B complex daily, regardless of what tests show. The added demand caused by the shorter life of many of the red blood cells requires a continuous supply of B vitamins and minerals like magnesium. For the same reason and the oxidation that takes place from the death of RBC's antioxidants should also be an important part of diet and supplements.
Andy

All we are saying is give thals a chance.

Re: Thal Minor, fatigue and iron levels
« Reply #8 on: August 30, 2014, 04:24:00 PM »
I"m a thal minor with normal HH (after many years of being low, til I had a hysterectomy) and low MCV. I went to the hematologist to appease my PCP who was concerned about the low MCV, even though I told her it would always be low. The hematologist told me not to let anyone give me iron without checking ALL the tests... and the ferritin is supposed to be the most reflective of the actual level though it may be falsely high due to cell destruction
. I remember being anemic w/ my 2d baby, but having elevated iron levels, and the OB insisting I needed iron because I was anemic. I explained over and over again how I didn't need iron but he was just stuck on the anemia. Finally I just agreed with him and told him I'd fill the scip but never did.
Now I have low B12. Lab tag said 'pernicious anemia' but the level was a little above normal. Frankly, don't know if I ever got my B12 checked before. The level is low normal, but I have many symptoms of B12 deficiency, including colon polyps.  
I always felt the best when I took a heavy B supplement with a high folic acid dose. At one point I was taking 1600 mcg of folic daily and had a great smear. Definitely reduced my RBC morphs.  My mom worked in a lab as a hemo specialist, so I had access to a lot of free lab work for several years.
Folic Acid and B vitamins are a must with this.  
Just be prepared for docs to say Thal Minor is asymptomatic...can't tell you how many times I've heard that over the years, and the literature always stated that til recently.

 

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