Thalassemia, blood test Iron, CBC and Liver? Not adding up.

Hi There!

I'm 33 yr old male, found out about a year ago that I was a carrier of beta thalassemia. I went to the hospital/doctor because I was dealing with a sick feeling, weak tired, back pain, neck soreness, overall just bad. The only thing doctors found was my thal. Let me try to sum this up.

March 2013- (Feeling Tired, lethargic, confused, slow thought process, short term memory was bad, lower back pain, hip pain) Visited hospital middle of March and doctor recommend (prescribed) me some Iron pills (10 day). My mother was freaked and didnt want me to take them so I didnt. I went to a hematologist a week later who did some more work up and didn't recommend iron but recommended folic acid (1000 mg per day) and also recommended that I visit a gastronologist. These are the test results (CBC, Liver and Iron) I got in March 2013. The hematologist never said anything to me about the liver results (maybe thought is was dehydration or something?)

These are the abnormalities;
CBC
RBC- 6.21      MCV- 70.9       MCHC- 29.3  Hemoglobin A- 93.9
HGB- 12.9     MCH- 20.8       MPV- 5.9

Liver/Hep Panel (abnormal)
AST- 78        LD5- 40 
LD1- 14
LD2- 16

Iron test (all results)                                                          cholesterol 238
Iron- 55       Ferritin- 108     Haptoglobin- 212
TIBC- 357
% Sat- 15 low

After this visit (march 2013), I tried better. Juicing, cleansing, taking 1000 mg folic per day, as well as some other supplements. I also visited the Gastronoligst who said just drink water and rest.  So about 7-8 months have passed....Now I'm feeling really weak. No energy, clumsy, have poor memory, blurry vision, hearing felt weak....so i increase the folic and vitb12 a little bit with no results. Also, keep in mind I'm eating mainly vegetarian diet (maybe 2 times a week eating chicken).
So after struggling I finally decide on Dec 1st 2013 to try the iron pills. i get up early morning (poor sleep) goto walgreens and purchase some Slow FE iron pills. I take one in the early morning, goto sleep. I wake up feeling good. Next morning feeling better, feeling re-charged. i also notice my memory is sharp again. My back pain is going away (awesome!!), hip feels better. More motivated and less blurry vision. So I have been on the iron slow fe since Monday (about 7 pills so far). I got concerned so I went and had some blood work done on wed, worried that maybe the iron in my body is being stored and not being released into my blood. Here's what I got Dec 2013 blood work.

CBC                                               Liver/Hep                 Iron                                   Cholesterol
RBC 6.11 H    MCHC 31.9                  GGT- 103 H              Iron- 88    Ferritin- 103         244 (high for healthy 33 male)
MCV 68.3       RDW 15.5                   AST- 52 H                TIBC- 325                           LDL  153 (only high marker)
MCH 21.8                                        ALT- 78 H                sat- 27


The iron supplements feel like they are helping alot but I'm worried there is a bigger problem at hand. I dont drink alot of alcohol. Could my liver iron storage be high? I have made an appointment with a Gastero again. I also remembered that a few years ago I did some international traveling....could I have been infected with malaria and could this be the results of my body fighting malaria in a beta thal? (developing in the liver?).

Sorry for the long post and thanks for your time.

best wishes
Rc

The transferrin saturation is low and a sign of iron deficiency. Your other iron numbers are good, which shows that you are on the right path to normalcy. I see nothing that suggests you have an iron load. I think you should just continue the iron for now, along with the improvements in your diet and nutrition. I would suggest that you continue to be monitored, so that once all of your iron numbers are in normal range, you can stop supplementing with iron. Make sure you are getting regular vitamin C, as this helps you absorb iron from your diet.

Dear studythal,

Thanks for sharing your story. I am a 40 year old male with thal minor. I have tried almost every supplement out there to feel better. My kitchen cabinet is jammed packed with stuff. Somethings help but nothing suggested seems to make a huge difference (e.g. wheatgrass, folic acid, b12). Most of the time i struggle with the same things you mentioned ( extreme tiredness, confusion, blurry vision, clumsiness dropping things all over the place, lack of motivation) .

The only thing that has helped me over the years is slow fe. Most of the time when i take it i feel much better for about 4 to 5 days before i need another.

I was very happy to hear your story because i have always heard that thals and males in general should never take iron. Because of this i worry whenever i take iron. I was wondering if your still taking slow fe and how its working for you?

Thank,
Nw

What about your vitamin D levels? It is the most common deficiency and impossible to influence at low supplement levels. The minimum level should be 35-40 and at least 50 is a good target level.

Hi Andy,

Is 50 a good level for thal majors to? I thought it should be higher.

Congratulations for your daughters marriage!

Emby

Thanks Emby.

The level of 50 is considered minimum optimal range. Higher is better.

Hi Andy,

I am currently taking 2000iu a day of vitamin d. I dont really feel a difference when i take it though. I also have never gotten my levels checked but i guess i should see a doctor about that.
 
Thanks,
Nw

I took 2000 IU for two years and got tested. My level was only 19. It took 5000 IU+ daily to get above 30. Get tested so you know what dose would be sufficient for you.

Ok i will get tested. Im curious however,what kind of difference did you feel when you started taking 5000iu and got over 30?

One of the more serious aspects of vitamin D deficiency in my case was SAD, seasonal affective disorder, that I have lived with during winter for many years. Raising my level meant an end to feeling like I was holding my breath all winter with a sense of impending doom constantly present. But in addition to this, I felt less fatigue, have had less problem with allergies and asthma and have observed a much stronger immune system. I seldom catch the common cold, which I used to get easily, and when I am sick, I recover more quickly.

D is responsible for the proper absorption of dozens of vitamins and minerals and when it is low, health in general is affected. By the way, to illustrate just how hard it can be to raise the level, mine reached 37 after a year at 5000 IU. Two years later at the same dose, my level was at 38. I now take more than 5000 IU daily.

Dear Andy,

There are something I do not understand about vitamins.  I was having bad giddiness, headaches and migraines, nausea, chest pains, vomiting and was seeing by a gastroentrologist.  He told me that I had too much vitamins and it is causing hypervitaminosis which is causing the symptoms.  I was told to drop all my vitamins to let my system clear up.  It takes weeks to clear.  I am only allowed to take folic acid, green tea, multi vitamins and Vitamin C.  I told him I don't take Vitamin C and he said Vitamin C in low doses is a good anti-oxidant because it binds the iron from the gut.  The problem with the iron in the body is because of the hemolysis, that is why its causing the high ferritin levels.

He also scolded me for being too paranoid of being a thal because there are nothing wrong with the low hb. Many people get by with low hb too, even normal people as well.  As long as one can do the things that they like, hb is not something that matters. Therefore there are no need to over supplementing.  The only thing is we need to eat moderately and healthily.  The other is to monitor our own health as we goes by and the doctors will deal with our "problems" as we age.

What is your say in this matter?  Thanks.