Worried Beta Thal Minor

I am 29 years old female. I was recently diagnosed with  Beta Thal Minor  and I have few questions. I will really appreciate if any one can help.

1.  My symptoms are feeling fatigued, hair loss and dry skin. Should I see a hematologist? I have never seen one.

2.   My ferritin level is 12 ng/ml ( range 10-154 ng/ml),
     Saturation level 37%             (range 15-50)
     TIBC 335.                              (range 250-450)
     Hemoglobin 11.5 g/dl             (range 11.7-15.5)
     Iron               125                   ( 40-175 ug/dl)

I do not take any iron supplement or any medication at all. Should I take anything to raise my feritin level?  I have heard that women fell their best when they their ferritin level is 50 or more.

Hi April,

Your serum ferritin is on the low side but the other iron numbers are normal. It does not look like iron deficiency. It does look fairly normal for thal minor and iron won't help. You will be better off taking folic acid and B Complex daily, as this may help you produce red blood cells a little better. A hematologist will most likely tell you that thal minor does not have symptoms, so it may be pointless to see one. We do know that minors have symptoms. I would suggest learning more about what you can do to help yourself and certain supplements are key. You will finds a lot of information in our two boards,Thalassemia Minor and Diet, Nutrition and Supplements.

Have you checked for any hormonal imbalances? Thyroid etc?

I had a lot of hair fall before my hypothyroid was diagnosed, and I get recurrent scalp infections too, that lead to hair fall. That may have something to do with the lowered immunity and the dry skin. (I have eczema too).

Thanks Andy. You guys are doing a great job here!
 This forum helped me to know more about my health condition. I just start taking multi-vitamin that contains folic acid and B 12. However, I am worried that my B 12 level is little high.
 
1008   (Range 211-911 pg/ml)

Is this normal for Thal minor?

Hi April,

High vitamin B-12 levels are not of concern, because the excess will be eliminated in the urine. Hemolysis (the break down of red blood cells) can also affect the test results. There is normally some level of hemolysis in thal minor as the small irregular red blood cells are broken down. The B-12 released by hemolysis will affect the test. Your B-12 level is a positive thing. Low B-12 leads to all sorts of problems and is a contributor to depression, which makes me think more minors should be tested for B-12 along with vitamin D if they suffer from depression. Low levels also are connected to Alzheimer's disease in the elderly, so keep the levels up.

Thanks Preety. My TSH ( Thyroid Stimulation Hormone) level is fine. Is there anything else to check?
I have another question for you. Is this normal for us to have irregular and painful period?
I can not complain about my immune system. I am not prone to infection or anything. However I often get canker sore on my mouth.

Thanks Andy. I am glad to know that my excess B 12 will be eliminated in the urine.

Thanks Preety. My TSH ( Thyroid Stimulation Hormone) level is fine. Is there anything else to check?
I have another question for you. Is this normal for us to have irregular and painful period?
I can not complain about my immune system. I am not prone to infection or anything. However I often get canker sore on my mouth.

My ferritin is 10, some hematologists believe that COULD cause fatigue. But my hemoglobin is also low, its usually around 9 or 10.

Yes i had irregular and painful periods till now, (I am 30+ years old now), but it became better after I was diagnosed with some hormonal issues. The severe hair fall I mentioned went on for few years, and it settled only after I was diagnosed hypothyroid.

What are your TSH and t3, t4 levels? Different labs have different ranges for what qualifies as 'normal'. I was initially normal and still symptomatic.

For irregular periods, did you meet a gynaec or an endocrinologist? I was checked for thyroid, prolactin and an ultrasound to check for polycystic ovaries ( I think its called PCOD). 

In my case the culprit was prolactin, which we took care of, with medication. Since then the periods are somewhat better.

You can ask me if any more questions, or if you are not comfortable writing here on the boards, you can PM or email me too.

I do not know what a canker sore is  ..   So i cant comment on it. But i do get dry mouth when i'm very tired, I use mouth paint for it to feel better.

Hi,

Im a new member here and very glad that I found such a wonderful community  :D
Im a 26 year old female diagnosed with Thal minor about an year back.

Before getting diagnosed, had visited my general physician twice who initially thought it was Iron deficiency anemia and prescribed Ferrous Sulfate 325 mg.
Taking those gave me such a great relief in my symptoms of severe fatigue and dizziness. But was told to stop it and see
a haemotologist after getting diagnosed with thal minor. Getting an appointment with a haemotologist took almost 2 months and like
any other doc he told me that the symptoms were of some other conditon and that Thal minor has no symptoms..

Anyways, he did some tests which showed a drop in my Hb from 11.3 to 10.3, and also Iron deficiency. Since he didn't want to
start me on any Iron supplements (he said he wanted to avoid Iron overload), I was told to take another test after a month or
two and see if my Iron is stable. So he wanted me to avoid taking Iron supplemets, whereas my General physician on seeing my very
low levels of Iron, told me start right away with the Ferrous Sulfate she had told me stop.
I got confused as to what to do and didn't take them anyway. Gradually my  symptoms got better and I dint bother much about it.

But, now again from the past few days, have been feeling highly tired and fatigued.


Here are the results of all my tests taken so far:


Haemoglobin - 10.4, 11.3, 10.3, 10.5,  (10.6 - Nov 09)

Ferritin - 22.8, 22, 32.9, (26 - Nov 09)

Iron -  39 , Nov 09

Transferritin Saturation - 13.2 % , Nov 09

 
TIBC- 290.3, Nov 09


My general physician has moved to another place and meeting my Haemotologist will take another month,
I dnt know what to do till then.. Can I start on Iron supplements/ Ferrous sulfate.. pls help me..
Hope to get some help.. 

Hi thal123,

I'm happy you are now able to sign in. I'm at work now and don't have my tables to consult, but I will give you an answer about your iron levels by tomorrow.

Thanks a ton, Andy.

Hi thal123,

While thalassemia minor and iron deficiency are not related in any way, thal minors, as part of the total population, can also be iron deficient, and this is the case with you. All three of the iron tests are low and your ferritin has been consistently low, which would rule out fluctuations due to the ferritin spikes that can occur during colds and infections. As long as you tolerate oral iron supplements, it is OK to take them until you get to the normal iron range. If iron bothers you, you can try diet to raise your level. Adding citrus or vitamin C with meals will increase iron intake. Avoid tea with meals, as it inhibits iron absorption. Diet may take a bit longer to raise your iron level, but it does avoid the bloating and cramps that oral iron can cause.

Hi Andy,

Thanks for the reply.

One thing I don't understand is the Iron Overload... why is it an issue with thalassemia minor..?
Still don't understand why my hematologist wanted me to avoid taking Iron..

I am also planning on starting a family soon. So what all is to be done.. I guess my husband has to be tested for thalassemia..
Also is there any other test that I should take.. I also read that u have been specifying in every post about the importance of Folic acid in general for thal and also for mothers to be. So in what dosage should one start taking Folic acid..? Should I also start Vitamin E..?

I have taken appointment for this week with a new general physician,.. planning to get my blood tests and Iron tests done once. Is there anything else that I should get done or ask for..?

TIA

Hi Tia,

Iron overload is not a normal danger in thal minor unless one has a very low hemoglobin level, which leads to excess absorption of iron (uncommon in minor), or when iron supplements are taken long term, because this will build iron levels in the body and eventually lead to toxic levels, because the body has no mechanism for removing excess iron. Iron supplements should never be taken unless iron deficiency has been demonstrated, and this is why your doctor has correctly warned against taking iron without verification of iron related anemia. Iron is a toxic metal when there is too much in the body, so your doctor wants to protect against this possibility. Often, when doctors see low Hb, they automatically prescribe iron, but in thal minor it will not help and can cause much damage to the organs if taken long term when not needed. However, keep in mind that many women do need iron during pregnancy, so if it comes to this, don't be alarmed. It will only be a temporary situation if this does occur and it is unrelated to thalassemia.

Folic acid is routinely recommended for all pregnant women, not just thals. A dose of 2 mg daily during pregnancy is sufficient in minors. I take 400 IU of vitamin E daily and have done so for 35 years. This is a good adult dose, although thal majors should really take a higher dose, up to 1000 IU daily. Always make sure it is natural E. Avoid any product that says dl-alpha tocopherol. It should read D-alpha and preferably be mixed tocopherols.

As far as iron tests, ask for the complete iron panel, as it is impossible to determine iron status based on hemoglobin level alone, since minors often have Hb levels below normal. And yes, do have your partner tested, as thal carriers are found everywhere and assumptions about genetic backgrounds cannot be relied on to exclude possible carriers. We have heard from far too many people who live in areas where thal is "unheard of", yet they are still carriers, so you can never be certain where some ancestor from 500 years ago may have traveled to and had children with someone who was a thal carrier. Merchants, soldiers and assorted travelers have spread thalassemia around the globe, so few populations can be assumed to be free of the gene.

Thanks for the reply Andy.