Hello to you all!

It sounds strange to me to have a HB of 13.2 with a HB E and a thal minor mutation??? Andy what are your commets?

manal

Thanks for converting it Zaini. I couldn't do it myself  And yes Andy, my Hb measurement is made in mmol/l. I'm sorry provoking this misunderstanding by not mentioning the kind of measurement at once.

So if my Hb is rather normal what about the necessity of having MRI scans of my liver and heart?

Jos.-



 

What i am unable to understand is that if your hb is normal,then why is your ferritin high ?  Were you ever transfused at any time in your life? For any reason?

I think we all have to wait for Andy's response.

Zaini.

Hi Zaini,

No, I've never had a transfusion. All my internist could tell me was that the origin of my high serum ferritin is the thalassemia.

Yes, I'm looking forward for Andy's reaction too.

Regards,

Jos.-

Hi Jos

The necessity of MRI does not related to the level of HB but rather related to the elevated serum ferritin.

Having a high ferritn may indicate having iron overloaded in organs such as liver, heart, pancreas,.. so an MRI is important to know if these organ have iron in them or not.

One very important note, is that in intermeidas (which is supposed to be the case according to your mutation, but it is not according to your HB level ) serum ferritin is not a reliable measure to indicate iron overload in organ.

The level of ferritin could be the same in two patients (one is major and the other is intermedias),but when you do an MRI, you can find that there is an iron overload in the organs of the intermedia patient.

So to su up, serum ferritin is not a reliable indication for iron overload in organs in intermedia mutations, that is why an MRI is essential for you.

T2* is the name of the scan made on the heart to show if there is iron deposits in heart or not. It is exactly like an MRI on the heart

manal

Jos,

Do you have access to your blood reports? I would very much like to see results of CBC (complete blood count) and hemoglobin electrophoresis. Also, have iron studies been done? Serum ferritin can be raised for various reasons and it does not always indicate iron overload. Iron studies would clarify this.

With an Hb over 13, it is unlikely that you have a serious iron load unless somehow you actually do have hemochromatosis.

Serum ferritin can be raised for various reasons and it does not always indicate iron overload

Andy,

 Do you mean that it could be a reaction from the body to a another chronic disease or inflamation?? If so, is it a possibility that the ferritin will cross the 1000s levels???

manal

Hi Andy and others,

Here are as attachment my blood reports of April 10 and March 2, 2009. They printed the unit of measurement after each examined item. I hope this and the used terms are understandable to you. I also included the report of February 9, 2009, the first extensive report I've got.

On January 26, 2009 there was a less extensive examination. The result then were:
Hb 10 mmol/l
Hct 47.7 %
MCV 74
MCH 1.6
FE 26
TYBC 58
TF% 45
Ferritin 1255
Cholesterol 6.9
HDL 0.9
LDL 4.1
Triglyceriden 4.25
Glucose 10
ASAT 50
ALAT 66
TSH 1.58
Kreatin 83

To round it up: on March 3, 2009 I started taking drugs against diabetes and cholesterolemia, on March 24, 2009 I visited a dietician, but immediately after the very first blood results I started eating a look more consciously, kicked eating candy and so on. Lost already a bit more than 10 kilogramme of weight.

Thanks in advance for having a look at the blood reports.

Thanks manal for your explanation about MRI en T2*.

Greetings,

Jos.-

Jos,

I see nothing in your reports that indicates any need for chelation. Yes, your serum ferritin is high but this does not mean you have iron overload and your other iron results are all within normal range. Determining iron deficiency or iron overload has to be done using several factors and using the ferritin test alone is a mistake. If anything, your results are indicative of diabetes and you are already addressing this.

http://www.med.umich.edu/1libr/aha/aha_ironstud_crs.htm

Results of these iron studies tests may mean the following:

    * A low serum iron level and low serum ferritin level may be caused by iron deficiency anemia.
    * A high TIBC and low serum iron level may be caused by iron deficiency anemia, pregnancy, and chronic blood loss.
    * A high serum iron level may be caused by too much iron in your diet, vitamin B6 therapy, or some anemias caused by an inability to use iron.
    * A high ferritin level and a normal serum iron level might indicate liver disease from infection or alcoholism, chronic inflammatory disease (such as arthritis or asthma), hypothyroidism, and type 2 diabetes.
    * A high ferritin level combined with a high serum iron level may be a sign of hemosiderosis (an accumulation of iron in some of your tissues).
    * A low TIBC and high serum iron may be a sign of sideroblastic anemia (a condition that prevents your red blood cells from using iron).
    * A high serum ferritin level, high serum iron, and low TIBC may be caused by hemochromatosis.

I think you should be taking IP6 daily as this will help control the ferritin and studies have also suggested that IP6 (inositol hexophosphate or phytic acid) may play a role in controlling HbA1C levels, which will help moderate the diabetes.

I do wish I understood some of the reports better, especially the notes, but I cannot see why you would be told to take Exjade. I see no sign at all that you have iron overload and it is far more likely that your high ferritin is related to diabetes. Your hemoglobin level is fairly normal so there is almost no possibility that you would be absorbing excess iron from your diet unless you also have hemochromatosis, and that would be reflected in high serum iron also, which you do not have.

Hi Andy,

Thank you very much for taking the time examining my blood reports. It's great you do this.

A few reactions:
1. I started taking IP6 on Wednesday April 29, so that's a good start. Thanks for the advice last week.
2. As I get it from the quoted text from the University of Michigan my diabetes type 2 could be the cause of the high serum ferritin. My internist told me that the high serum ferritin was caused by the HbE-Beta-thal. Besides that he told me that the distorted liver values - AST (SGOT) or ASAT used in the Netherlands and ALT (SGPT) or ALAT the expression used in my country - were most probably caused by the drug I take for the cholesterolemia.
3. Regarding the notes written on the reports. On the report of February 9 my wife wrote the normal range for all checked items and besides that the meaning of MCV and the type of indicator GGT is. So nothing very special I think.
On the reports of March 2 and April 10 I wrote down the results of February 2 for AST and ALT and for cholesterol (below). In the upper part I wrote behind 'HbA2 4,1 %' what my internist said about that value. He said that this indicates that there is too much alpha-globulin, so I'm having a problem with beta-globulin -> Beta-thal.
4. Are there any other items you want to know regarding the blood reports? I would be happy to tell you.
5. All in all I'm glad I didn't start taking Exjade yet. On May 11 there will be the the start of the next blood examination. I'll get the results on Friday May 15. I'm afraid my internist - a new one - will not be very happy with me not taking the Exjade yet, but after all it's my body and my life.

Once again, thanks a lot Andy!

Jos.-

Jos,

Ik zal je wel een berichtje sturen een dezer dagen. Ik heb nog lang niet alles gelezen, maar heb je ook gehoord van (primaire) hemochromatose?

Groetjes, Dore

Again me,

At 1 September I started my fourth try of Exjade and I succeed.

Good for you Door! I'm happy this drugs works fine for you.

Jos.-

Hi Jos,

The HbA2 is almost always elevated in thal minor and is not considered to be any problem, as it does add to the total hemoglobin available. The determination of iron overload has to be made through the iron studies. The other info is not really relevant to measuring iron load. If a doctor demands that you chelate, I would suggest you demand an MRI of your liver to establish that there is any iron load, before chelating. I do not think this is necessary, because your serum iron is not high at all, even though the serum ferritin is high. All the iron readings have to be considered together to determine iron load. A visit to a hematologist would probably be more enlightening than what you will learn from most internists. Frankly, most doctors are not familiar with blood disorders and are also not familiar with what treatment, if any is indicated. Also, without and history of chronic anemia, there is no reason to believe your body would be absorbing high amounts of iron.

On August 20, a long long time away, I'm going to have my first appointment at a so called Sickle Cell Center with all kinds of experts; in my case with a hematologist-internist.

Thanks a lot Andy for your explanation. It surely will be of use on May 15.

Jos.-