Thal minor or Intermedia - How does it change the medical intervention

Hi Friends, Thank you so much for this really informative site.
Have a few queries...
Was diagnosed in my 20's as Thal minor with an Hb of 9
Have one healthy child over 20 now.
Gradually 30 years later I am now bordering around 7.3. My hematologist says I could be Intermedia !! How does that change anything for me in terms of dealing with it medically or with supplements ? Why should I go through an invasive bone marrow test ??

I have been taking Folic Acid 5mg since the time I was diagnosed. Skip it many times also and change to a B-complex or a multivitamin.
I have read at length the supplements that Andy suggests. Thank you again and will incorporate them into my diet. Especially the natural Vit E
 
I have the symptoms of Thal minor but I guess have a stronger will-power. I yo-yo between really active days and lazy with a book on the couch days.
In terms of symptoms...I get breathless if I talk while I walk, hate to go uphill, climb stairs, light-headed, weird aches around the back of the head, cramps in the calves, feet, spider veins around my ankles, spleen enlarged.
I take a good vegetarian diet and am aware of what I should eat but I have my days...
Sleep is not very easy. Of late menopause is my concern. Fibroids, menorrhagia, debilitating associated pain. I do not like any invasive procedures so will evade hysterectomy as much as I can. What are my options ?
Look forward to whatever help comes my way and thank you everyone here, especially the Admin.
You are all doing a wonderful job. I am going to read everything here and get myself acquainted with my state.
Wish you all good health & god bless.
Urja

Hi urja,

I don't know if a bone marrow aspiration would be necessary immediately. I would suggest a DNA analysis first, to see if maybe you truly are an intermedia. An Hb of 9 when you were younger is fairly low for a thal minor and I have seen others with similar Hb levels told they were actually intermedia as they got older. Your Hb is getting down to the level where transfusions would be recommended, so it would be a good idea to know your true genotype, so the proper direction of your treatment program can be planned. If you are intermedia, you may eventually find that transfusion is the only way to manage as you get older. If you are a minor, a bone marrow aspiration may be needed to determine if your bone marrow is working properly. In either case, the nutritional approach should be followed.

Thanks Andy for your reply and am posting here a few more questions... 
It makes a lot of sense now that you explained this so well. I also have my blood testing done just this last week. Pls make sense of this as well to me ...
are these values concurrent with Thal minor clearly or DNA test is still recommended.
Anything in the following test values that may need special attention or mention...or diet.
I have already started a vit d3, iron & vit b12.
Should I continue with folic acid & how many mg ?
Thanks so much & god bless.
Urja

Serum Iron  87.30   
Ref range for female : 37-145 ug/dl

Total Serum Iron 242.40     
Ref range  : 250-450 ug/dl

Percentage Saturation : 36
Ref range : 14-50 %
Haemoglobin : 7  Normal range 12-16.5 gm/dl
RBC count 3.63   Normal range 4.2-5.4 x10*6/ul
Haematocrit  23.8 Normal range 37-47 %
MCV 65.6   Normal range 76-96 fl
MCH 19.3   Normal range 27-32 pg
MCHC  29.4    Normal range 32-36  gm/dl
Total WBC 4,500  Normal range  4000-10000/ul

Differential WBC Count

Neutrophil           67    Normal range  40-75%
Eosoniphils    04  Normal range 1-6 %
Basophils 00 Normal range upto 1%
Lymphocytes  28   Normal range  20-45 %
Monocytes 01 Normal range upto 8 %

Morphology of RBC - HYPOCHROPMIA, ANISOCYTOSIS, POIKOLOCYTOSIS, MICROCYTES+. OCC MACROCYTES, TEAR DROP CELLS & SCHISTOCYTES SEEN
Morphology of WBC  Normal
Platelet count 1,80,000  Normal range 150,000-400,000
Platelet    Adequate on peripheral smear

I think you may be thal intermedia. You had a transfusion but your Hb afterwards is only 7. Your RBC is low at 3.63. This is normally elevated in thal minor. Your iron numbers are in normal range, and you have a solid serum iron level. I don't think the low Hb is related to iron.

I would recommend 2-5 mg folate daily. This should continue lifelong. It is required to build red blood cells and may help boost the Hb level a bit. You may also want to try wheatgrass tablets, which are fairly easy to find. These may also have a positive effect on Hb. If you can have DNA testing done, it would be worthwhile to find out your true thal status and if you are indeed an intermedia. As I see it, you either have intermedia or your bone marrow is not working as well as it should. A minor would have a higher RBC level, unless there was a decrease in bone marrow function. Get your vitamin D level checked if you don't get regular sunshine. Low D exacerbates all other problems, so it's important to address when D is low.

Thanks again Andy,
Yes I have had a few transfusions during pregnancy 20+ years ago & then again when I got uterine ablation done to reduce heavy menstrual bleeding. This was about 7 years ago.
That's it. No more.

Hey Andy,
It’s been long. Yes After the DNA test I was diagnosed as thal minor with alpha triplication.
Didn’t understand that much iexcept that it’s a variation that causes more pronounced anemia.
Anything you know that can help me would be appreciated.
As per your post here on diet and vitamins I am taking
Methyl folate 800mcg
 Super B
Vit E mixed and natural
Vit D3 once a week 50,000 IU

She I take an Omega 3 ?

Anything else ?
I am currently Hb 7

Are you diagnosed as beta minor with an alpha triplication or is it the alpha triplication, alone? Usually, an alpha triplication won't cause intermedia status unless beta thal minor is also present.

Yes. You are right. Beta thal minor with alpha triplication.
Pls advise with my supplements Andy.
Thanks for your time  much appreciated.
Urja.

Due to the triplicated alpha gene, you produce excessive amounts of alpha globin. When you also carry beta minor, you produce reduced amounts of beta globin. Normally, equal amounts of the two globins are produced and these combine to form hemoglobin. With the triplicated gene and the beta gene both present, a variable condition is created due to the imbalance of globins being produced. The excess alpha globin genes form tetramers that cause many problems in the body.
http://thalassemia.com/what-is-thal.aspx#gsc.tab=0

These aggregates are very insoluble and precipitation interferes with erythropoiesis, cell maturation and cell membrane function, leading to ineffective erythropoiesis and anemia.

The outcome can vary from mild anemia to a thalassemia intermedia status, which can require occasional to frequent transfusions. Your Hb is low enough where the conversation about possibly transfusing should take place with your doctor. Even though some supplements may positively affect the condition, they cannot make up for the very low Hb level. I think you should consult a hematologist who is familiar with thalassemia. Even though a hematologist may not be familiar with this particular combination of genes, the treatment with transfusion would be the same. It may only get worse with age, so it is time to talk to a hematologist about your future and what approach should be taken.

Hey Andy,
So happy today to get this little good news. My Hb
In about 3 years is the highest... 7.70
I have been taking the super b’s , folic acid in the methyl folate firm and Vit e in the natural form you mentioned. Also other things that I reD in this forum like dates, prunes, wheat grass, moringa, assorted smoothies in a not very regular pattern but as and when I can.
I take this opportunity to thank you