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91
Thalassemia Minor / Re: 25-hydroxy D3
« Last post by Melissa A Tan on February 18, 2021, 11:13:14 PM »
Hi TonyF,

Thank you for sharing your view. We live 85miles from the equator and sunshine is plentiful all year around. We also have 50% skin exposed most times. Her depression is also caused by iron issues. Her ferritin is ridiculously low and not responding to oral treatment. My son and MIL also have ferritin issues . The haematologist has requested for TMPR336 gene testing. She eats plenty of fatty fish too.
92
Thalassemia Minor / Re: 25-hydroxy D3
« Last post by TonyF on February 14, 2021, 05:08:23 PM »
I take some vitamin D supps, definitely worth doing, but natural is the best way to go.
Can your daughter get sunlight daily? Direct sunlight for 20-60 mins a day would be great, and sunlight for even 5 mins in the morning regulates the circadian rhythm in the body. Going for a walk every morning in sunlight or doing other exercise would be ideal, exercise and sun are natural anti depressants, but youd want to do this for a few weeks to see the real benefits.
Fatty fish like salmon, sardines, makeral and eggs also have natural vitamin D.
All that said im not a doctor, depression is likely caused by multiple factors.
93
Thalassemia Minor / Re: Lab results and where to go from here?
« Last post by TonyF on February 14, 2021, 04:58:54 PM »
Andy,
"The HbA1C test has no value for thal minors and should not be used to test for possible diabetes."
Thats super interesting hadnt heard that - is there a pubmed etc link related to this please?

Jared,
I figure all Thals should ask their docs for a Ferritin test, its not done with a regular CBC. Some docs arent familiar with Thalassaemia in my experience.

For mucus you could look at taking NAC, N acetyl cysteine. Google that.
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Thalassemia Minor / Re: My quest to reduce ferritin
« Last post by TonyF on February 14, 2021, 04:52:00 PM »
Mart,
Did you redo your lab results after the supplementation? Would be interesting to see.

I have beta thal and take a bunch of supplements, but honestly if i had 700 ferritin i would not wait and hope all the supplements and tea/coffee etc work, i would just go and donate blood every 60 days if you are feeling in good shape generally.
Definitely avoid vitamin C with red meat.

Most mainstream docs see high ferritin as fine until 1000 as you say, but there's a lot of new info that says Ferritin over say 150 can be problematic long term. High F can also be caused if you have a lot of inflammation too though caused by something else.
I try to keep mine under 100.




95
Diet, Nutrition and Supplements / Re: Beta Minor - Endurance - Supplements
« Last post by Andy Battaglia on February 13, 2021, 06:50:42 PM »
Jared,

We love hearing about success people have with various natural approaches to improving health. Thanks for sharing your experience with Ginkgo.
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Thalassemia Minor / Re: Lab results and where to go from here?
« Last post by Andy Battaglia on February 13, 2021, 06:48:03 PM »
Jared,

Your tests definitely indicate that you are a thal minor. Keeping that in mind, certain other tests will likely not appear as normal and I would assume the doctor ran some tests because of that. Bilirubin will generally be high in all thals, as a result of the higher turnover of red blood cells. The HbA1C test has no value for thal minors and should not be used to test for possible diabetes. Tests like fasting glucose and others should be used, but the HbA1C will not give an accurate reading because of the presence of variant hemoglobin in thals.
I'm glad you're recognizing the importance of rest. It isn't that thal minors can't do physical activities. It's the recognition that rest is needed daily that can help to enhance your physical activity. L-carnitine can definitely help with exercise. Bodybuilders use obscene amounts of L-carnitine (as much as 30 grams daily) to help build muscle. It does work, but I don't suggest doses that high. Higher doses can also help bump the Hb level up a bit. Carnitine will help circulation a lot and that will help to counter fatigue somewhat.

I tend to order a lot of supplements from online companies to get better prices. I, too spend a lot of money on supplements, but only one cold in 5 years tells me I'm doing something right. 50,000 IU vitamin D weekly and 50 mg of zinc daily have greatly improved my immune system.

The coughing and mucus could be allergy related, although I don't know the effects of the c-pap on your sinuses. I have allergies, including dust, so I never get a break and I also wake up every morning loaded with mucus in my sinuses. Having 5 cats doesn't help the allergies. I use a neti pot to help clear the goop out of my nasal passages. A good quality salt, like Himalayan pink salt is less harsh than table salt when used for the neti pot.


I do recommend wheatgrass. the easiest form to use it in are the tablets. Along with carnitine, it can help raise hemoglobin levels.
97
Thalassemia Minor / Re: Please help me understand my lab results
« Last post by Andy Battaglia on February 13, 2021, 06:23:56 PM »
I suggest 1000 mg milk thistle daily. 500 mg of carnitine is a decent dose, but it can be higher with no problems. 1000 mg daily might be appropriate.
98
Diet, Nutrition and Supplements / Re: Beta Minor - Endurance - Supplements
« Last post by Jared73 on February 03, 2021, 06:26:09 PM »
As a Beta Minor I can agree that most of the supplements listed here will have some good effects overall but YMMV and you must also account the prices of supplements vs that of the nutritional foods.

Something I have not seen around here is "Ginkgo biloba". In my late 20's I ran into a young baseball player that was taking Ginkgo biloba gels. Naturally I asked him about it and he said it kept him alert during games. Typically I can bike ride or jog at a slow speed for hours, but to go fast I find myself tiring out more than others. It's always been that way for me and I gave up things as a kid like BMX racing because I couldn't keep up. So one day (20 years ago) I went the GNC at that time and picked up some Ginkgo biloba gels, and I just wanted to be more alert for work. So I took the Ginkgo a few times per-day for a week and felt great. Then my day for work arrived, I loaded up my gear  and I got on my bike for a 5 mile ride. I was in for a shock when I flew up the hills like a champion, it was truly something magical to experience pedaling faster and longer and with almost no effort. From that point on I was hooked on this stuff and months later my lab results came back that looked so good my Doctor was asking me if I was taking anything. I had to stop though, maybe I just over did it, but in time I found myself with long periods of insomnia and there was this one time I scratched my leg and it started bleeding for a very long time. All-in-all though, that was many years back and Ginkgo biloba was the one thing that I felt overcame the physical limitations of Thalassemia.   *Thinking about getting some Ginkgo biloba, but holding myself back.*  :smileblue  

99
Thalassemia Minor / Re: Lab results and where to go from here?
« Last post by Jared73 on February 03, 2021, 04:06:59 PM »
After reading the forums.. I've added a few more vitamins into the daily mix. :wink

Vitamin B-Complex 100. It's mostly yellow urine and I'm paying attention to any nervous energy and will cycle on/off as needed.

Over the last few years I have raised the D3 from the 1000IU's to 3000IU's, I could feel a difference in depression.
Vitamin D3 5000 IU, I'm going a step higher and I'll order a blood test on my next visit in a few months.

Megafood - Multivitamin for Men 40+.
The price for these vitamins are sky-high, but I like the overall spread of these trace minerals and I find this type easy to digest.

Maybe it's just something inside my head, but I could swear my hair is not as thin while I've been taking L-Carnitine-L-Tartrate, I might keep taking it.
Source Naturals - Acetyl L-Carnitine & Alpha-Lipoic Acid - 650 MG. I started taking this new one 2 days ago, more time will tell if this is enough.

The cost of these vitamins are surely going up. I walked out of the store paying $130 and thinking about all the fresh Blueberries, Mangos and Strawberries I could have bought. Over all my years I'm sure I've put at least one or two Vitamin Sales Reps through College. :biggrin
100
Thalassemia Minor / Lab results and where to go from here?
« Last post by Jared73 on January 31, 2021, 12:22:53 AM »
Hello Thalassemia Patients and Friends,  :hiyaboy

My most resent lab results, and they are rather limited. Typically if I ask for more tests I will have to pay extra and or have a reason.

Beta-Thalassemia minor is said to run in my family.

Basic Metabolic Panel (8)
Glucose 185 (H)
BUN 15
Creatinine  0.96
eGFR IF NonAfricn Am 94
eGFR IF Africn Am 108
BUN/Creatinine Ratio 16
Sodium 135
Potassium 4.4
chloride 97
Carbon Dioxide, Total 24
calcium 9.4
---------------------------------
CBC, Platelet, No Differential
WBC 9.3
RBC 5.82 (H)
Hemoglobin 11.4 (L)
Hematocrit 36.4 (L)
MCV 63 (L)
MCH 19.6 (L)
MCHC 31.3 (L)
RDW 15.3
Platelets 338
NRBC   .....................
............................................

Hemoglobin A1c  8.2 (H)
--------------------------------------
Lipid Panel With LDL/HDL Ratio
cholesterol, Total  173
Triglycerides 187 (H)
HDL cholesterol 33 (L)
VLDL cholesterol cal  33
LDL chol calc (NIH)  107 (H)
LDL/HDL Ratio  3.2
--------------------------------------

And that's everything form that lab test with my primary doctor.

----
The labs results from 2019 had a urine test.

Albumin/Creatinine Ratio, Urine
Creatinine, Urine 195.4
Albumin, Urine 389.4
Alb/Creat Ration 199.3 (H)

I think the doc was worried about my kidneys or something?
----

The last Iron test was in 2018:
Iron and TIBC
Iron Bind.Cap.(TIBC)  371 ug/dL
UIBC  231 ug/dL
Iron 140
Iron Saturation  38

And on that same test in 2018 my Hemoglobin A1c was 5.9 (H) and it has been climbing up higher each year, it's now at 8.1. :-\

------------


I am taking medications:
Fenofibrate 145MB
Atorvastatin 10 MG
Hydrochlorothiazide 25 MG
Losartan Potassium 100MG
Metformin 1000 mg x2

Me:
47
Weight 245 lbs
Height 5’9”
White Male - works in an office 9+ hours per day.

I can't find my results for vitamins such as D or B12, it was years ago and I don't recall anything being said about a deficiency. However I have been getting seasonal depression that seems to go away after taking my D3 for a few weeks. Taking too many B vitamins makes me feel jittery. Vitamin C seems to help with my coughing and allergies.

I try to eat whole foods as much as possible, but I am guilty of fast foods, red meats, soda and snacks.

The vitamins I've been taking:
Folate 1,333 mcg (800 mcg L-methylfolate) tabs
B12 Methylcobalamin 3000 mcg gummies
D3 1000IU x 3
Zinc 50mg.. not everyday and I cut it in half. I used to take a Zinc 50mg with copper, it was plant based.
Vitamin C 500mg chews or Micro-Liposomal Vitamin C - 1,000MG.
I don't take a multivitamin. When I was younger my mother always said to avoid vitamins with iron.
Recently started taking E 256 mg 400IU d-Alpha
Recently started L-Carnitine L-Tartrate 500 mg, then realized I should be taking acetyl-L-carnitine.
Recently started drinking Marshmallow root tea at night, many hours after meds to help with acid reflux.

I like a nice hot green tea in the morning, but I am careful not to drink too much as I swear it makes my muscles cramp in my hip, neck and back.
I used to take Magnesium and trace minerals but I started developing odd muscle and nerve pains in my groin, neck and calves.  It got so bad my doctor gave me mild muscles relaxers, (it still happened regardless) and it didn't stop until my work stress was reduced and the magnesium and trace mineral stopped. I also had a carotid artery doppler test and was normal, All because of a neck pain that felt like lighting..  :dunno

My largest complaints have been feeling tired, no motivation to exercise. Also the coughing, coughing up clear thick mucus, sinuses and if I cough enough I vomit. That coughing and vomiting happens sometimes after waking up (I have an Auto C-Pap) and often during taking a hot shower or brushing my teeth. I have also been dealing with hives once in a while if I eat certain foods like Avocados, California Rolls, Red Pepper Hummus, Lemon grass tea etc, but I can't tell if it's the foods or a histamine intolerance. And I also get periods of ED and my doctor gives me Viagra, I don't care for it as it works well but it makes my face feel flush.

Looking at the CBC, Platelet's, RBC 5.82 (H), Hemoglobin 11.4 (L), does any of this indicate any, diets, herbs or supplements that I should be or not taking? :huh
I bought some Wheatgrass juice powder, should I be taking that? 

Lately I have been trying to go on 30+ minute walks after lunch. I have been forcing myself to get more sleep, normally was 5.5 hours, now 7 to 8.



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