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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2017





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Author Topic: Thal minor reaching out, advice on how to help symptoms  (Read 286 times)
chickadee777
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« on: April 03, 2018, 08:42:42 AM »

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!

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Andy
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« Reply #1 on: April 07, 2018, 01:42:43 PM »

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.
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anshu
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« Reply #2 on: April 10, 2018, 12:22:51 PM »

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 ?

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Andy
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« Reply #3 on: April 14, 2018, 01:48:41 PM »

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.
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Andy

All we are saying is give thals a chance.
anshu
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« Reply #4 on: April 16, 2018, 03:23:41 AM »

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.
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anshu
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« Reply #5 on: April 19, 2018, 03:00:16 AM »

Dear Andy ,
Kindly provide any suggestions in regard to decreasing platelet count can that happen in Thals.
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Andy
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« Reply #6 on: April 20, 2018, 05:02:08 PM »

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.

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Andy

All we are saying is give thals a chance.
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