Thal minor reaching out, advice on how to help symptoms

Hi everyone! I'm a longtime thalpal reader, but joined recently to be able to be a part of the discussion. This forum has proved invaluable, especially since traditional medical care hasn't helped me.

Here's a brief history: in my 20s I barely noticed the symptoms of being thal minor, when I would try a vegan diet and/or wasn't eating enough, I did have a lot of dizziness and heart palpitations. But in my early 30s, things just went haywire. My periods got heavier, which in turn led to all my symptoms exploding, in particular, anxiety/OCD, migraines, tiredness, dizziness, among others. At that time, I didn't know I was thal minor. A blood test revealed it, and confirmed diagnosis, but because my ferrittin was very low (an 11), my doctor put me on iron (they seem to do that, don't they?) and it only made everything worse for me. So I stopped the iron. My B12 was in the 300s, I have since remedied that by taking B12, and now the number is fairly high. My hemoglobin was 13.2 last time I checked which I believe is good.

Of all my symptoms, the absolute worse is the anxiety. It can appear randomly, but I've noticed it always comes around when I have other symptoms. And definitely skyrockets before/during/after my period.

My question, I never took supplements until about 2 years ago, and even now I'm figuring out what to take, and what could help my thal minor symptoms. I take a multivitamin, Vit D, B12, fish oil, magnesium, CoQ10 (helps my migraines), and now added Vit E. to the mix. I exercise every day, drink a lot of water, and eat very healthy, although I don't eat red meat much - but I do eat chicken/fish.

Is there anything else I should be doing? I know a lot of people here swear by wheatgrass, but I don't know how easy that is to incorporate into my diet. I know antioxidants are recommended, so I eat a lot of those. Other things that helped: I stopped drinking coffee, that helped my anxiety a LOT, and I noticed when I eat foods high in salt I get more overall symptoms.

Thank you all!

Wheatgrass tablets are much easier to use than fresh wheatgrass. My personal favorite are organic Kamut grass tablets. Kamut is a non-hybrid version of wheat and from my observation, it works well. My wife used it during chemotherapy for cancer and it did keep her Hb higher. It never dropped below 11.

hi Andy,
need some help, I am 31 years male have recently been diagnosed with beta thalassemia also having symptoms like high  bilirubin (3.92 indirect) (direct 0.55), gallstones & mild spleenomegally.
My Hb level is 12.1
PCV 38.30
RBC 5.23 mill/mm3
MCV 73.20
mchc 31.60
MCH 23.10
platelets are reduced to 106thou/mm3
Electrophoresis reports show
HBa 92.9
HB a2 5.6
HBF 1.3
Reticulocytes : 5.3 %
As per Doc. I am having beta thalassemia trait, Kindly give your suggestion w.r.t all the symptoms & results.Are these symptoms common in thallasemia trait ?

Yes, this is thal trait. Low MCV, high RBC and the definitive high HbA2 shows it is beta thal trait. The high bilirubin, the gallstones and enlarged spleen are all caused by the higher turnover of red blood cells in thals. This raises the bilirubin, which leads to gallstones. The defective red blood cells are filtered by the spleen, causing some enlargement of the spleen.

Thankyou so much Andy, for your revert. My concern related to this disease is :

Will my Billirubin levels always remain high?
Will Spleen keep on increasing in size?
recent issue is that my platelet counts are also decreasing & current value has reached around 85000, is this a matter of concern?

I will really appreciate your revert on above mentioned queries.

Dear Andy ,
Kindly provide any suggestions in regard to decreasing platelet count can that happen in Thals.

Bilirubin is almost always high in thal minors. This is due to the destruction of defective red blood cells and this won't change. Many minors eventually need to have their gallbladders removed. The spleen should not enlarge endlessly, as you don't transfuse and don't have the issue of transfused RBC's being filtered out by the spleen. The overactive spleen is also why your platelets have dropped. Yours are low, but the alarm doesn't sound until they go below 50,000. I have been told that drinking muskmelon juice can help reduce the spleen size. Papaya and papaya leaves are also often mentioned as helping to reduce spleen size. Folate and B-12 supplements can help increase platelets.

Thanks Andy Ji,
Your suggestion did worked as platelet count has rose up to 112 currently, Can you please suggest with some other supplimentsrequired for me, I am not really fatigued or tired , my Hb level is also about 13.40 currently (which was normally between 11-12 in past), but my head feels heavy sometimes, also have issues like heavy chest etc., doctors dont really prescribe more than Folic acid or Vit B12.
Do I need to take any other suppliments to keep my CBC & LTF results in range.
Plz also suggest amount of folic acid required in my case.

Is wheat grass a good supplement for me..? Plz suggest

will highly appreciate any response

anshu,

I would suggest taking milk thistle for both the liver and gallbladder. It's a common mild herb sold in capsule form. Milk thistle is therapeutic for the organs and helps to purify the liver and regenerate liver tissue. I have learned recently that it can also help reduce the size of gallstones, which are common in thal minors. You can take 1-2 mg of folate daily. I would also recommend magnesium. Wheatgrass is good in any form as an antioxidant and also to help keep the Hb up.