Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: Bigg on November 20, 2011, 04:48:41 PM

Title: Real causes of fatigue in thalassemia (minor)
Post by: Bigg on November 20, 2011, 04:48:41 PM
Hi,

It's been a while since my last visit here. Yet I am still looking for answers.

So, we may safely assume that thalassemia sufferers are fatigued due to thalassemia.
But what would be the cause of that fatigue?

By finding what the causes are, we could convince doctors, researchers and other people
once and for all that this fatigue is real.

Of course in case of thalassemia major and intermedia the situation is a bit different - there is
additonal iron overload, ROS production etc. These mechanisms do not apply to thalassemia
minor.

As far as I can figure out:
1. Vitamin depletion.
Because of continuous production of erythrocytes different vitamins get used up faster than in "normal" people. Consecutive deficiency causes fatigue as different parts of body do not work
as they should and get fatiqued.
Vitamin deficiency can be easily alleviated by taking supplements (especially vitamins B complex)

2. Underoxygenation of tissues.
With unsufficient oxygen supply tissues do not have energy and experience different other problems, for example acidification.
But in case of sufficient hemoglobin (mine is 15,3 g/dl) underoxygenation should not be a problem, or is it?

Obvious solution to this problem is bringing hemoglobin to normal level (which may not be easy), taking antioxidants (they stop erythrocyte breakdown so they help increase hemoglobin) and taking vitamin E which makes blood thinner and erytrhocytes more flexible allowing better penetration of tissues.
Acidification may be fought by eating fruit or taking baking soda/sodium citrate.

3. Provoking inflammation/releasing different substances signalling brain that fatigue should be felt.
It is feasible that after erythrocytes break down there are certain substances released that cause inflammation (cytokines). Also the intracellular machinery may be somehow detected and this signals the brain to stop activity by inducing fatigue (strain -> broken cells -> necessity to stop the strain).
For example muscle cells release additionally endorphines, which cause this pleasant feeling of relaxation but also make you tired and a little dizzy.

Anyone has any idea of specific substance that can be released by erythrocytes breaking down?

4. Other disorders caused by thalassemia minor like allergies.
Well, as a matter of fact I think thalassemia's involvement in causing other disorders is highly overrated but I mention it for the sake of the accuracy (I read such a statement in one of the threads). However my personal opinion is that simply all people get sicker due to pollution etc.

5. Bone pain.
Bone pain caused by bone marrow overproduction.

6. Heme/hemoglobin conundrum...
The first four items are kind of well recognized, this one is purely speculative.

This is the kind of question that can be answered probably only by a doctor/geneticist. If you are one or have a contact with one, you might want to pursue this question.

So I was wondering...

In case of beta-thalassemia (or alpha-thalassemia) one of hemoglobin chains is damaged.
Is it possible that this hemoglobin chain is used in different locations within the body?
Damaged hemoglobin in different locations would lead to impaired function and that would lead to fatigue (and other problems).

Possible different locations of hemoglobin:
- myoglobin in muscles
- complex III in electron transport chain
- complex IV (cytochrome c oxidase) in electron transport chain
- cytochrome c in electron transport chain

The question is if any parts of these compounds are expressed by the same genes as a particular hemoglobin? If so, we may have the answer.

This all gets even more complicated because of heme which is encoded by a different gene.
If it is the heme that is a common part of the above compounds, one would rather have porphyria and not thalassemia.

All in all this is all quite complicated (and I am not describing this correctly, I know) and a person is needed that knows exactly which part of the given compound is coded by a particular gene.

Why this kind of idea?
I have beta-thalassemia minor but I also have (metabolic) myopathy.
This means erythrocytes break down but also muscle cells break down. This is weird - it is much more likely that these two are interconnected somehow than they are not. So it is likely that the cause is the same for both of these disorders. So I am looking for this connection but I can't find any.

This kind of connection in general might cause fatigue.

**
Another question is: what is the most important cause of the above.
Another question is: what fatigue itself really is - there are many theories about that and how this connects with thalassemia.


If you have any ideas or comments, please reply.

Regards,
Bigg

Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Prets on November 21, 2011, 04:28:14 PM
I read an article about COPD - and am wondering if chronic anemia and long term oxygen deprivation can cause COPD like fatigue symptoms.

And if so, can pulmonary rehab help where one takes oxygen and exercises to rebuild muscle and stamina?

I am always fatigued and have extremely less muscle strength. When I push my limits, I get so severely fatigued that I'm forced to rest and i recover in few days. Anti inflammatory pills help my fatigue when I am actually taking them for migraines.

The chronic fatigue over many years, allows me to do less and lesser work, probably that further reduces stamina and muscle too. At the times I'm tired i struggle to breathe too, which may have affected my lung capacity. So naturally i feel tired faster and feel i'm worse with age.

Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: tempomat on November 22, 2011, 10:11:16 AM
You might want to look into sub clinical B12 deficiency and Chronic fatigue syndrom.  Many thal minors have bad B12 levels due to various reasons.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Bigg on November 22, 2011, 03:43:21 PM
Yes,
I had vit. B12 deficiency. It was normal, clinical deficiency with lab test results below normal.
I had vit. B6 deficiency. It was normal, clinical deficiency with carpal tunnel syndrome in all joints and tendonitis.
I had vit. D deficiency. It was normal, clinical deficiency with lab test results below normal, actually below detection level, so the deficiency was most severe.

The symptoms of all of these were terrible, many times I developed strange symptoms that simply made me think that it's time to die. Tiredness, paresthesia, inflammation, dryness of musous membranes (dry to the blood), neverending cold, etc.

Now all of these deficiencies are gone, supplementation in place. I take full multivitamin, omega-3, magnesium, alpha-lipoic acid (btw. this one is good as a remedy for item 2, it causes vasodilation, so the blood flow should be better), carnitine, and a few other supplements.

And quite ridiculous, none of these deficiencies was diagnosed by a doctor, none of the supplements was recommended by a doctor.
This all probably means that blood and muscle breakdown caused these deficiencies. There was a lot of demand for the vitamins...

Each of the supplements helped me considerably, enabling me to function somehow.
Unfortunately this is still not exactly normal functioning and as such it justifies looking for the gist of the matter over and over again. Actually it got me quite bored and impatient. But what else can I do...

This "common hemoglobin gene affecting both blood and muscles" theory would explain both disorders.
Of course there may be any other gene affected... like vitamin transporter etc.
Something that would affect blood and muscles.
There was a theory that it might be g6pdh deficiency - lab tests confirmed that's not it.
So I'm still looking...
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Honeybunny on November 23, 2011, 09:31:02 AM
First of all, it is impossible to determine the exact mechanism of how thalassemia causes fatigue in the human body. There are just so much that we do not understand, and it will differ from various individuals as well. The only thing we can do is take some supplements and implement lifestyle changes in terms of the foods we eat and exercise properly to accommodate our condition.

I too have beta thalassemia minor like you, and have researched a bit on how to deal with it. Looking at the bright side, you have to realize that our thalassemic condition was actually meant to be a defense mechanism against malaria. Normally, people with beta thalassemia minor don't experience symptoms. That was the case with me as a child, I was perfectly healthy and active, but as I grew older bad nutrition and poor exercise habits caused some symptoms like fatigue to manifest.

I have compiled some supplement advice from Andy posted in the supplement section: http://i.imgur.com/N4ICU.png
There are 2 promising drug trials currently in development, the HQK-1001 and ACE 536 for beta thalassemia.

The fatigue from the slight anemia was significantly reduced after I took supplements and followed a paleo diet. It is important not to consume processed foods or wholegrains/milk/rice/beans that contains chemicals like Leptin and Gluten that causes gut irritation. When your stomach cannot digest and absorb nutrients properly, you'll feel fatigued more easily.
http://www.fourhourworkweek.com/blog/2010/09/19/paleo-diet-solution/

You can also incorporate more spicy foods that contain curcumin in your diet, as research shows that it improves the oxidative stress in beta-thalassemic individuals.
http://www.ncbi.nlm.nih.gov/pubmed/19900435
Then there's the standard drinking of water daily, as that will help cleanse your system and stimulate blood cell turnover rates. Green tea will also help as a powerful anti-oxidant.
Look up a list of super foods like blueberries that are powerful anti-oxidants and incorporate them into your diet.

Vitamin D levels are also very important. http://jackkruse.com/the-sunshine-of-your-life/
I checked my vitamin D levels and had 27.3, and the optimal levels are around 50. So I've been taking liquid vitamin D supplements of at least 5000IU every day, and will be rechecking my levels soon.

As for exercise, since our gene defects affects the production of beta globin proteins which results in excessive destruction of red blood cells, we need to reproduce them more rapidly. The process is called Erythropoiesis, which is regulated by the hormone erythropoietin. About 2.4 million new erythrocytes are produced per second for a normal person, the number is probably higher for us. There are some supplements that could help boost erythropoietin, click on this link: http://i.imgur.com/VZJrc.png

Testosterone is known to boost erythropoiesis and hemoglobin production as well. http://www.ncbi.nlm.nih.gov/pubmed/18160461 So it makes sense to exercise your entire body during each workout to elicit a maximal hormonal/testosterone response. http://www.fourhourworkweek.com/blog/2007/04/29/from-geek-to-freak-how-i-gained-34-lbs-of-muscle-in-4-weeks/

Please note that I am not an expert, these are just my personal experiences. Hope this helps!

Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: tempomat on November 23, 2011, 07:29:38 PM
Did you figure out the cause for your B12 deficiency?  Did you test methylmalonic acid(MMA), homocysteine and gastrin?  Did you test for genetic methylation issues related with MTHFR? 

What specific products did you use for your B12 deficiency?

Check this forum for some other ideas related to chronic fatigue syndrom:

http://forums.phoenixrising.me/forumdisplay.php?49-Detox-Methylation-B12-Glutathione-Chelation-...
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Bigg on November 23, 2011, 10:48:25 PM
Addition to item 2: underoxygenation may also be caused by higher (and in some cases lower, but lower seems to help in some cases) affinity of hemoglobin for oxygen. High affinity will cause hemoglobin not to release oxygen where it is necessary. I know this is the case for some specific variants of hemoglobins, but I don't know if this is true in general for beta thalassemia. Is the most of thalassemias characterised by this high affinity or just the opposite? That is a question.

***
I just got today the result of vit. D test.
My 4th test of this vitamin in 4 years. The previous result was 27 (almost in normal range).
The current result is 22.7 so this means dicrease of concentration. Bummer.
I thought that spending almost half a year in the sun and taking vit. D, but not
too high doses, would be sufficient. The problem is also that I get mild hypercalcemia
when the doses are higher though still not that high (like 2000-3000 iu).
I was wrong - this is not sufficient.
So we could end the discussion with this - too low level may be the sole cause of my
problems (although I doubt it). And I should supplement and wait for the results.

***
But I'd like to continue the discussion. This may lead to finding out the cause for me...
and for others.
Right now I don't think it is not even worth it to do additional tests.
A few years ago I've been ordering a lot of tests. These did not bring any added value
for me. This was because there was no good interpretation and no matching tests
to symptoms.
For example I did blood tests and I pointed out my microcytosis many time during visit
at GP office.
I wanted to be referred to hematologist. There was no reaction to this. Finally I went to
hematologist and paid for the tests from my own pocket.
Same applied to vitamin D and vitamin B12. And practically all other things/tests/diagnoses.
Doctors may take credit for maybe 1 in 10 of diagnoses.

> First of all, it is impossible to determine the exact mechanism of how thalassemia causes fatigue in the human body.
But naming the causes may help find one particular cause and help order particular test. This will be probably a group of causes.

***
> I have compiled some supplement advice from Andy
All of these supplements are taken, except of resveratrol. I can't see any benefits of it for me. The problem with resveratrol is that it probably has moderate long term effect but only after you take
other supplements, especially antioxidants. If you do not follow the supplementation recommendations to the letter, it's no use taking resveratrol. And that was the case with me, so
I kind of don't exactly know if it is effective for me. But beside that I see a few important problems:
resveratrol is especially important for thal majors and you can spend money a lot better than on
resveratrol. Many brands of resveratrol seem to be ineffective due to the problems of formulation and absorption.

> You can also incorporate more spicy foods that contain curcumin
I also tried curcumin. There are also a few problems with it: no short-term action and no clear benefit for thal minors. On the plus side, it's quite cheap. It would be the simplest thing in the world
to take it with food not as an additional supplement... but unfortunately in Europe it is not that common. I practically don't know of any food containing curcumin.

These are my doubts, feel free to correct me if I am wrong.

Right now I am supplementing antioxidants:
- normal multivitamin, so vitamin C etc. although in quite small doses
- natural vitamin E in high doses
- CoQ10 in high doses
- L-carnitine in high doses
- green tea
- grape seed extract
- alpha lipoic acid
- arginine

I think I've got it pretty well covered right now. But I must admit that it is so well covered for about a month now, and I can see the positive results. It is ridiculous that I tried many of these supplements separately (or rather in groups, I wanted to try them out) and only all of them work well.

BTW. I also tried Pycnogenol. I haven't come across Pycnogenol at this forum. Boy, this stuff is strong! I could literally feel it's action in my muscles and in my veins. Unfortunately after the second day of using the side effects started to be severe: my BP dropped to the level where I was falling asleep while standing. It is so strong that it took a whole week to "regain conciousness". I was inspired to take it by the fact that it is believed that it's not resveratrol but polyphenols are responsible for the benefits of wine and the French paradox. Pycnogenol contains these polyphenols. Of course it did not work for me, so I started taking grape seed extract - these are also polyphenols.
If anyone would like to try pycnogenol, it is possible to buy generic version which is usually called "pine bark extract". Well, all in all, it has not very good aftertaste and the awareness that you have to ingest bark is also troublesome...

> Testosterone is known to boost erythropoiesis and hemoglobin production as well
I would say that I take all of the mentioned supplements boosting testosterone.
But I must say that the ultimate (yet safe) testosterone booster is a combination of HMB (β-Hydroxy β-methylbutyric acid), L-arginine and L-ornithine. I take this combination on and off.
It helps especially with muscles.

> Did you figure out the cause for your B12 deficiency?
I guess it was the same as for the other vitamins. Too high demand and too low supply (caused probably by poor absorption).

> Did you test methylmalonic acid(MMA), homocysteine and gastrin?
Homocysteine not tested although the doctor wanted to order it. Funny thing considering that they never ever want to order anything. However I said it'd be better to test it after bringing vit. B12 to normal level, otherwise the result would be above normal range because of vit. b12 def anyway, so what was the point? But after bringing vit. b12 to normal level nobody cared about testing homocysteine. Is it worth it to do it now, from my own pocket?
The most important thing is that the B12 level is quite high - 450 (normal range: 200 - 900) and I took shots and take it sublingually so I don't care about intrisic factor (I assume you meant intrisic factor not gastrin).
Regarding methylmalonic acid - it was actually tested when my urine was tested for all organic acids produced by muscles. It was within normal range... And it was interesting twist of action - from vitamin b12 to muscles... very interesting.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: tempomat on November 24, 2011, 12:19:06 PM
I just got today the result of vit. D test.
My 4th test of this vitamin in 4 years. The previous result was 27 (almost in normal range).
The current result is 22.7 so this means dicrease of concentration. Bummer.
I thought that spending almost half a year in the sun and taking vit. D, but not
too high doses, would be sufficient. The problem is also that I get mild hypercalcemia
when the doses are higher though still not that high (like 2000-3000 iu).
I was wrong - this is not sufficient.
So we could end the discussion with this - too low level may be the sole cause of my
problems (although I doubt it). And I should supplement and wait for the results.
-----

It seems you already know these are very low results. You should consider anything below 50 as a low value.  The levels you are taking are very low and I am not surprised you are not making much progress.  In order to address the hypercalcemia you should be taking vit K2 MK4, so that the newly absorbed calcium goes to the right places.  It is a good idea to take Magnesium along with vitamin D and test you Ca and Mg levels along with vit D.


> Did you test methylmalonic acid(MMA), homocysteine and gastrin?
Homocysteine not tested although the doctor wanted to order it. Funny thing considering that they never ever want to order anything. However I said it'd be better to test it after bringing vit. B12 to normal level, otherwise the result would be above normal range because of vit. b12 def anyway, so what was the point? But after bringing vit. b12 to normal level nobody cared about testing homocysteine. Is it worth it to do it now, from my own pocket?
The most important thing is that the B12 level is quite high - 450 (normal range: 200 - 900) and I took shots and take it sublingually so I don't care about intrisic factor (I assume you meant intrisic factor not gastrin).
Regarding methylmalonic acid - it was actually tested when my urine was tested for all organic acids produced by muscles. It was within normal range... And it was interesting twist of action - from vitamin b12 to muscles... very interesting.

------

Your B12 levels are still low.  Results below 550 are considered deficient in Japan and the lab ranges in Europe and the US are extremely low and inaccurate.  Check the forum i linked to for the best supplement brands.  Certain sub-lingual brands are the best for this condition.  Gastrin is tested to estimate the HCL levels in your gut which are associated with absorption of vitamins (not only vitamin B12), so you might need HCL supplementation and Enzymes.  High homocysteine levels are related to low B12 or low Folic acid(B9).  MMA is specifically related to low B12.  You might have issues with your methylation cycle as a thal minor.  Have you tested RBC folate?


You still need to address better your B12 and vit D levels as well as rule out Folate deficiency before you continue in your investigations.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Bigg on November 25, 2011, 11:52:56 PM
You still need to address better your B12 and vit D levels as well as rule out Folate deficiency before you continue in your investigations.

Yes, this sounds like a plan. But first the supplementation with vit. B12 and D and only after that some tests...
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Andy Battaglia on November 26, 2011, 06:44:35 PM
This discussion is fascinating and tells me that patients are taking their condition much more seriously than the medical industry that tends to dismiss thal minors without any thought.

I want to address one specific problem in thalassemia that is finally being given its due importance with thal majors but still ignored in thal minor. Bigg has touched on this with his discussion about erythrocytes.
http://www.thalassemia.com/thal_intro_2.html

Quote
Beta thalassemia results in an excess of alpha globins, which leads to the formation of alpha globin tetramers (a4) that accumulate in the erythroblast (immature red blood cell). These aggregates are very insoluble and precipitation interferes with erythropoiesis, cell maturation and cell membrane function, leading to ineffective erythropoiesis and anemia.

Even though this quote is in the context of beta thal major, the same thing happens in thal minor, although to a lesser extent. This is a vicious cycle that feeds itself and adds to the destruction of red blood cells by the creation of more red cells. Efforts to improve the quality of red blood cells and reduce ineffective erythropoiesis seem to be the best approach. The "precipitation" produced also makes me wonder if Bigg is onto something when he suggests that this may be a contributor to other physical problems like the breakdown of muscle cells.

There are many excellent suggestions in this thread regarding supplements, and the use of natural herbs and spices that have strong medicinal properties does help those who develop a good program for themselves, as we see in the posts in this thread. For those considering this approach, please be patient and think long term. We are talking about natural supplements and foods, not drugs, and it takes time to show results, but they do appear in the long run, often in very subtle ways. I recently started using wheatgrass extract after a long break, and once again I am convinced that wheatgrass does have amazing properties. One thing I noted was my telling myself much less often when I wake up in the morning, "I'm so tired. " This was a subtle thing that I noticed and is typical of what is seen after re-starting a discontinued supplement that seems to be having no effect. You don't see any dramatic immediate effects from natural methods but the effects are real, so think long term. The goal of optimizing the production of red blood cells will pay off in the long term. It will not eliminate all of the problems associated with thal minor but it will help.

I do not believe that a significant deficiency of vitamin D will respond to low doses of D. In my own case, it took a year at 5000 IU daily to bring my level from 19 to over 30. My level of 19 was after two years of using 2000 IU daily. Periodic testing is necessary to assess your progress, but I strongly recommend doses higher than 2000 IU daily. My doctor recommends I continue to take 5000 IU once weekly even during the summer time when I do get a lot of sun. The difference in my life is amazing. I just wish I could get more D from sunshine. My long time winter depression has vanished and I no longer feel as though I am holding my breath for months on end. My immune system is also improved and I recover quickly when I do get sick. After many years of alopecia, I even have some stubble growing and have to shave occasionally. Even my nails grow faster now. I am wondering if my health would have been much different had I remained in Florida and continued to work outdoors, as all my issues began after I was no longer exposed to the sun for 6 to 8 hours daily.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Honeybunny on November 27, 2011, 09:04:41 PM
This discussion is fascinating and tells me that patients are taking their condition much more seriously than the medical industry that tends to dismiss thal minors without any thought.

I want to address one specific problem in thalassemia that is finally being given its due importance with thal majors but still ignored in thal minor. Bigg has touched on this with his discussion about erythrocytes.
http://www.thalassemia.com/thal_intro_2.html

Quote
Beta thalassemia results in an excess of alpha globins, which leads to the formation of alpha globin tetramers (a4) that accumulate in the erythroblast (immature red blood cell). These aggregates are very insoluble and precipitation interferes with erythropoiesis, cell maturation and cell membrane function, leading to ineffective erythropoiesis and anemia.

Even though this quote is in the context of beta thal major, the same thing happens in thal minor, although to a lesser extent. This is a vicious cycle that feeds itself and adds to the destruction of red blood cells by the creation of more red cells. Efforts to improve the quality of red blood cells and reduce ineffective erythropoiesis seem to be the best approach. The "precipitation" produced also makes me wonder if Bigg is onto something when he suggests that this may be a contributor to other physical problems like the breakdown of muscle cells.

Thank you so much for your insights Andy. After reading that article, I was wondering if there exists some natural food that can help detox the excess of alpha globins.
Could beets be such a food? The "treatment" section on the wiki for thalassemia states the following:

Quote
The antioxidant indicaxanthin, found in beets, in a spectrophotometric study showed that indicaxanthin can reduce perferryl-Hb generated in solution from met-Hb and hydrogen peroxide, more effectively than either Trolox or Vitamin C. Collectively, results demonstrate that indicaxanthin can be incorporated into the redox machinery of β-thalassemic RBC and defend the cell from oxidation, possibly interfering with perferryl-Hb, a reactive intermediate in the hydroperoxide-dependent Hb degradation.

In addition, according to the WHFoods website for beets: http://www.whfoods.com/genpage.php?tname=foodspice&dbid=49
Quote
The betalin pigments present in beets have repeatedly been shown to support activity in our body's Phase 2 detoxification process. Phase 2 is the metabolic step that our cells use to hook activated, unwanted toxic substances up with small nutrient groups. This "hook up" process effectively neutralizes the toxins and makes them sufficiently water-soluble for excretion in the urine. One critical "hook up" process during Phase 2 involves an enzyme family called the glutathione-S-transferase family (GSTs). GSTs hook toxins up with glutathione for neutralization and excretion from the body. The betalains found in beet have been shown to trigger GST activity, and to aid in the elimination of toxins that require glutathione for excretion.

Since betalin pigments in beets can convert toxins to be sufficiently water soluble, it is possible that it can convert excess alpha globin aggregates that are normally insoluble so that it can be flushed out of our systems? This would help prevent them from interfering with erythropoiesis.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Andy Battaglia on December 01, 2011, 02:47:49 AM
This was posted in another thread but has relevance to this discussion.

Quote
DAMHA    Beet juice & green tea
From my humble experience as a one who has a severe form of B-Thal minor ( Hb 10.5-11.5), I would like to share with you that I found  a really great benefit on energy level with drinking GREEN TEA and BEET JUICE. They really improve fatigue and exhaustion and improve mental power (not only as anti-oxidants but beet juice is well known to increase brain blood flow.

I believe Umair has also previously posted about beets. I would like to hear from more people about any experience using beets in thals.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Prets on December 02, 2011, 12:00:44 PM
When my thal was not yet diagnosed, the standard anemia advice was iron supplements or beets.  My hemoglobin is always below 10, sometimes as low as 8.3.

My B12 and D are above normal, that doesn't seem to help my fatigue.

When i'm tired, i'm also light headed. Has anyone tried medicines that can help blood circulation to the brain? It would be good if beets can help the same.

I have some postural issues too, so i'm more tired on my feet. And then my face gets really pale.  Cinnarizine helps for a few hours, seems to reduce the 'fatigue'. Even anti inflammatory pills help. I do agree that its possible inflammation makers are released, and cause fatigue so we are forced to rest. Possibly to decrease the rate of rbc breakdown and increase erythropoiesis.

About erythropoeisis, if one already has enough RBC's, does it make sense to increase it further? Taking folic acid keeps my RBC count in the upper end.

I have always felt that the fatigue and extra exertion needed to function properly, also reduces hemoglobin. Taking more bed-rest definitely reduces fatigue. the warmth feeling reduces too, which makes me feel it slows down the rate of rbc destruction.  Has anyone tried a lot of bed rest to increase hemoglobin faster?

I plan to try this myself, as hemoglobin is down to 9. Will try the beets as well.

Even if  cant clearly understand what fatigues me, I keep researching to see what helps me.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: beap4 on December 15, 2011, 07:21:55 PM
I tend to sleep alot. I even fall asleep at the computer quite often. I was receiving iron infusion treatments, but they were never absorbed very well, even though I went for them two to three times a week. Then I asked the doctor if I could take multivitamin and iron tablets. She said to give it a try. My hemoglobin jumped higher than it ever had during the infusion treatments and even the percentage of iron absorbed increased. Lately though, that has changed and even though my hemoglobin is high (a little more than 14.2) the percentage of iron absorbed is even below the low they show on the blood test results. I have been using my parents' cast iron cookware and it seems to help alot. Can anyone suggest what I might do to get back on track with the absorption again? Thanks!
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Andy Battaglia on December 15, 2011, 08:07:10 PM
Try taking a vitamin C supplement of 500-1000 mg along with any iron supplement and any iron rich foods. It will aid in iron absorption.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: ak82 on August 30, 2012, 09:26:38 PM
I don't have much to add in terms of help here, but wanted to chime in support for bigg as he did the same for me when i posted in this forum 4 years ago.  I really admire his tenacity and scientific approach.  Reminds me a lot of me, but i see has gone a lot further.  And i thought it was thorough!

Well it's been 4 years and i have been on all sorts of swings and roundabouts.  But i am still much the same :(  I dismissed the idea of thal.minor a long time ago as Andy mentioned that i should feel fine as my Hb was at 12.9 i think at the time.  It fluctuates, i think its about 12/12.5 now.  I think this was a well intended but possibly damaging piece of advice.  As bigg illustrates, he has Hb of 15.3 and still feels fatigued.  I believe (though i guess none of us know) the theory of an increased requirement for vitamins and minerals is an accurate one, and it putting a huge strain on our bodies causes the fatigue.  Obviously as i've got older the fatigue has increased.

It started very young, i remember at 10 yo needing to have naps after school when other kids would want to come round and play, and moan that i was sleeping.  Having aches in my legs after a full day, having cravings for lemons and salt and vinegar, dry eyes, dry hair...  Though my energy would be ok after a nap.  Now the nap is mandatory it feels like to keep me alive, not just to tide me over for activities.  Activities are almost non existent.  It is my 30th birthday in a couple of hours, and here i am.. On a forum for answers.  Energy to socialise these days is non existent, energy even to be happy.

My recent searches into health were focussed around GI.  I started paleo too and thought i had wheat allergies.  I would have constant diarrhea so figured this was the cause of my lack of energy (lack of uptake of nutrients).  I focussed on this.  I have right shoulder pain and chest pain.  I figured this is gallstones and pancreas pain which correlates perfectly with the diarrhea fatty stools.  I have been trying to curtail this for a while with slow progress (l-glutamine, colostrum, ox bile, digestive enzyme, probiotics).  Slowly this is gaining SOME relief in symptoms of diarrhea but not energy.  I have cut out wheat for a couple of years now and dont feel much different.  Better than before, but not BETTER.  SO this is not a root cause, just a antagoniser, so best left alone.

Of course, i believe my gallstones are (probably) primarily bilirubin.  This would again correlate with thal minor.  This would also explain the pancreatic pain and problem digesting fats (stones blocking the pancreatic duct causing a back up of pancreatic enzymes in pancreas, causing it to digest itself).  The small gains i have here seem mainly palliative though, and not curative.  It is worth noting these symptoms have been slowly growing from barely noticeable to strong over about 10 years.  To the present point of unignorable.

So here i am.  4 years later from when i first posted, trying so many different things i wont even remember them.  But i ordered prescription cortisol (raw adrenaline) over the web, as well as thyroid hormone, which i shouldnt have done but was desperate.  Downed the bottles, and felt nothing.. Nothing!  Prescription meds, and i know they were real as my dad uses the same thyroid meds i just didnt want to steal his.  Thats how bad my levels are, cortisol barely does anything for me.  I have had food intolerance tests, visited a nutritionist for help with adrenal fatigue which again did nothing.  I have had a surgery for a perianal fistula due to the constant diarrhea.  I went to a private doctor to blood let a pint a week because i saw my ferritin went up from about 40 to 200 in a couple of years.  My GP was not happy but it normalise my sometimes fluctuating liver enzymes...  Theres so much i've tried i honestly cant remember..  But as i say, here i am.. Back at Thalassemia.

It makes the most sense.  I had the symptoms from very young, i always crave high nutrional value and alkalising foods, like dark chocolate, lemon, vinegar, salt, artichokes, anchovies, cherries, berries etc etc.  Leg aches, gall problems...  Basically, i just want to call BS on the Hb levels being the only, or even main cause of fatigue for Thal.Minor patients.  It just doesn't marry up with me and what i'm seeing.  I just want to say thanks bigg for being there to message me when i was bad, and well done for keeping up the work.  I was reading through today looking for answers and again seeing only people who have 8 or 9 Hb levels complaining of fatigue and comments from others saying that if Hb is high then you should be fine, thinking how can that possibly be, with all the other factors that would come in to being mycrocytic with so many extra blood cells being made.  I will read your above posts and try to take some similar supps to what you're taking.

An interesting point to note, is that whenever i go to Cyprus every year for family holiday, usually between 1-2 weeks, i feel energised somewhat.  A lot more than usual but still not 'normal' but other peoples standards.  But a 100% increase for me anyway.  I put this down to cleaner air, vitamin D, and probably mostly down to siestas. 

At the moment i am taking multivit, b complex, b12, wheatgrass juice powder, folic acid, transdermal magnesium oil, gall plus support, digestive enzymes...  Only been back on them for 2 days so nothing yet, but the mg oil and gall+enzymes has been longer so thats been doing its thing.  I also take whey isolate and hydrolysate sometimes instead of meals to ease the burden on my digestive system, lemon water, marmite ( :) ), iodine....  who knows what else...!!  I tried Protandim for a while, something thats supposed to help with oxidative stress and cause a guaranteed increase of glutathione.  Again didnt notice a huge amount of difference, but was taking it on its own, without fixing my diet much.

Pfff  i've lost my thread there is so much going on (basically im tired and can't concentrate anymore or even proof read what i've written).  But keep on keeping on.  It's all we have really.  I pray there will be some cure but in my heart i know there wont.  The system wont allow for it, it doesn't work like that.. :sigh:  Money rules.  But good luck with your search.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: eldavido on September 01, 2012, 08:33:01 AM
i  have   a  double   delhma   i  have  alpha   thalasseamia  minor  and  am  on  major   tranqillizers  for  schizophrenia  ........ fatigue  is  a  major  issue  for   me....thanks  for  info  above  adios  good  ferinds...keep   good  ideas  and  info  flowing  i  love  thalpal  ive  learnt  so  much  thankyou
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Dharmesh on September 01, 2012, 10:59:13 AM
This discussion is fascinating and tells me that patients are taking their condition much more seriously than the medical industry that tends to dismiss thal minors without any thought.

I want to address one specific problem in thalassemia that is finally being given its due importance with thal majors but still ignored in thal minor. Bigg has touched on this with his discussion about erythrocytes.
http://www.thalassemia.com/thal_intro_2.html

Even though this quote is in the context of beta thal major, the same thing happens in thal minor, although to a lesser extent. This is a vicious cycle that feeds itself and adds to the destruction of red blood cells by the creation of more red cells. Efforts to improve the quality of red blood cells and reduce ineffective erythropoiesis seem to be the best approach. The "precipitation" produced also makes me wonder if Bigg is onto something when he suggests that this may be a contributor to other physical problems like the breakdown of muscle cells.

There are many excellent suggestions in this thread regarding supplements, and the use of natural herbs and spices that have strong medicinal properties does help those who develop a good program for themselves, as we see in the posts in this thread. For those considering this approach, please be patient and think long term. We are talking about natural supplements and foods, not drugs, and it takes time to show results, but they do appear in the long run, often in very subtle ways. I recently started using wheatgrass extract after a long break, and once again I am convinced that wheatgrass does have amazing properties. One thing I noted was my telling myself much less often when I wake up in the morning, "I'm so tired. " This was a subtle thing that I noticed and is typical of what is seen after re-starting a discontinued supplement that seems to be having no effect. You don't see any dramatic immediate effects from natural methods but the effects are real, so think long term. The goal of optimizing the production of red blood cells will pay off in the long term. It will not eliminate all of the problems associated with thal minor but it will help.

I do not believe that a significant deficiency of vitamin D will respond to low doses of D. In my own case, it took a year at 5000 IU daily to bring my level from 19 to over 30. My level of 19 was after two years of using 2000 IU daily. Periodic testing is necessary to assess your progress, but I strongly recommend doses higher than 2000 IU daily. My doctor recommends I continue to take 5000 IU once weekly even during the summer time when I do get a lot of sun. The difference in my life is amazing. I just wish I could get more D from sunshine. My long time winter depression has vanished and I no longer feel as though I am holding my breath for months on end. My immune system is also improved and I recover quickly when I do get sick. After many years of alopecia, I even have some stubble growing and have to shave occasionally. Even my nails grow faster now. I am wondering if my health would have been much different had I remained in Florida and continued to work outdoors, as all my issues began after I was no longer exposed to the sun for 6 to 8 hours daily.
Dear
Andy
You are welcome to India to have plenty of Vit. D :smiley :urwelcome
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Andy Battaglia on September 02, 2012, 06:38:54 PM
ak82,

Did you get tested for vitamin D level? Your comment about Cyprus literally screams that your D levels need to be raised. I get exactly the same lift when I go to Florida and can get a few days of intense sunshine. Are gallstones confirmed? Has your thyroid been tested?

Your Hb level should be sufficient to avoid the symptoms of anemia, but that does not mean that the hemolysis present in thal minor does not have an effect. An earlier comment in one of your posts mentioned craving lemons and salt. The salt craving  is fairly simple and is a sign that your body needs more chloride. The simple solution is adding more salt (sea salt only please) to your diet. Lemon craving indicates a need for magnesium and this fits right in, because hemolysis causes an increased need for magnesium. If your bone marrow is overactive, you can still have a normal or close to normal Hb, but at the same time, you will have a high rate of RBC turnover and this will lead to many problems, including gallstones. However, the oxidation caused by the process of hemolysis is the real enemy, and your body asks for foods high in antioxidants in response. I feel that for the symptoms that are truly caused by thal minor, a diet high in antioxidants is the main thing you can do to help yourself.

I'll be honest. I think there is zero benefit to consuming meat extracts, such as over the counter thyroid supplements. From my own experience, they do not help the thyroid at all, unlike synthroid which actually does correct a low thyroid. I caused myself a lot of serious and even life-threatening problems by thinking I could treat my thyroid with supplements. All I managed to accomplish was that I almost died because I did not get medical attention. My advice is if it's suspected, get tested.

Looking at your blood reports from a few years back, your RBC count is high, as expected, and your MCV is quite low, showing that you have a high number of small defective RBCs. This would support the theory that you do have a high blood turnover rate and that you are suffering from the effects of chronic hemolysis. I wish there was some easy solution but there isn't. Long term dedication to a healthy diet, loaded with antioxidants is essential, as is continuing magnesium supplements.

If you want to read a summary of the effects of oxidation on trace elements in thal major, see this link. http://www.hindawi.com/journals/ane/2012/270923/
It is the most comprehensive summary I have seen. If you look through it, you will learn much about what is depleted by thal, but interestingly, you will also see mention of conflicting results from different studies. I note this to emphasize that even with thal major, there is conflicting information, and that with thal minor, there is a general lack of information, so we are constantly learning more from people like you, as we try to find solutions. It would really help if the medical profession would acknowledge that thal minor does result in health issues and that this need great research so that minors can do something besides experiment on themselves.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: ak82 on September 03, 2012, 09:59:37 PM
Thanks a lot for your reply Andy.

I went to the docs today (a horrible doctor who completely ignores my problems and has done for years, i may need to switch.. again..)  I complained of back and shoulder pain and he basically responded with i always come up with new symptoms... anyway long story short he ordered an ultrasound at least so we'll see how that goes. I  think next time i see him ill ask him to send me to Wittington hospital in london which i saw somewhere on the forums is recommended for thals.

Anyway i basically think i have a ruptured gallbladder which is leaking all over inside me.  Has been for years, i used to get this burning right under my bottom right rib when eating with indigestion.  Another doc found it odd how i would get burning pains down there but did nothing to investigate.  I only relised today that its probably bile dripping down.  Anyway im sure the ultrasound will show up all sorts, i will try to get them to look at kidneys pancreas and spleen too at the same time.  But either way as i say im sure something will show up which will finally have to make them take it seriously.

Quite depressing knowing i cant do much about it though.  I am not going to let them take my gallbladder out or give a splenectomy.  From things i've read getting rid of the gallbladder doesnt rid stones anyway so whats the point.  I'm starting to clutch at straws now and think about experimental gene therapy and bone marrow transplants.

My problems get even more complicated as my father is hypothyroid and has b12 injections, but he doesnt have the trait!  And my symptoms lean closer to how he is now rather than my mother, which is just really confusing.  But i wonder if whatever he has is just exacerbating the thalassemia which is the real cause.  That is what i am going to focus on.  I am just trying to limit my eating at the moment, taking digestive enzymes, veg juices, protein powders and vitamins to lower the burden on digestion, have as much rest as possible and see what they ultrasound results bring.  Then try and go and see the Whittington hospital and see what happens there.

Im slowly running out of ideas, which is pretty horrible.  I always had some sort of hope before but now its running out.  Antioxidants i guess will have to be the way but ive always had them anyway... feels like im delaying an inevitable..  I wont stop though, theres nothing else i can do.  Seen some interesting docs on DNA and how it can be manipulated with positive thoughts and frequencies :)  Desperate times!! I think i will meditate and stuff and see if that fixes up my DNA lol.  Worth a shot.

Thanks Andy.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Andy Battaglia on September 04, 2012, 01:08:47 AM
Make sure you find out the size of the spleen. It is an important indicator of hemolysis.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: ak82 on September 04, 2012, 11:30:47 PM
Ok will try to. But i want them to look at gallbladder pancreas liver spleen and both kidneys! Basically most of my torso, not sure ill be able to get away with it all, but ill do my best.

Anyway, new day, new hope. Had a nap in the sun today at lunch time and must say i felt significantly more alert. Have u looked into sunbeds yourself andy? Looks like they do produce vitamin D and is a much better alternative to supplements which it seems has a lot of problems being metabolised. Im thinking that might be a way to go. Dont think its a silver bullet for me, but at best case it might be a bronze, and id take that at the moment ;)

:positive thinking:
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Sharon22 on September 05, 2012, 05:11:31 AM
Don't use a sunbed.  The lights emit UV rays of smaller wavelengths than what the sun emits. Exposure to these rays can cause cancer with only 1 use!
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: ak82 on September 05, 2012, 09:13:40 AM
You got any sources for this? I would have figured melanomas would be endemic if that were the case, considering how many tanning salons are about. I live in essex. Tanning salon central. There are also therapeutic light boxes that produce vit d. You cant disuade me that easily. Would also love to see some info on what you mentioned
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Sharon22 on September 07, 2012, 06:12:10 AM

I could show you thousands of webpages that provide this information and have attached just three below to get the story across.
As for the UV wavelengths, I am an industrial chemist; my job involves using artificial light sources to accelerate the weathering for polymers and surface coatings - these include UV lamps.  It is part of my job to understand the spectral irradiation of the sun and all the different light sources we use so that the accelerated weathering most closely resembles daylight at noon.  The UV component in the solariums includes wavelengths smaller than those found in natural sunlight - these wavelengths are known carcinogens.
Please reconsider your use of sunbeds and your enthusiasm to recommend them to others. Having Thal is bad enough without adding cancer to your woes.

http://www.heraldsun.com.au/news/breaking-news/sunbeds-kills-800-in-europe-every-year/story-e6frf7k6-1226434535837

http://sixtyminutes.ninemsn.com.au/stories/lizhayes/291312/dying-for-a-tan

http://theconversation.edu.au/not-a-sunny-outlook-tighter-sunbed-regulation-is-long-overdue-2179
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Pratik on September 07, 2012, 10:40:10 AM
I sort of agree with Sharon.

If anyone has heard of Ceragem here (ceragem.com is official website) is also a sunbed type of machine which releases UV rays which is equivalent to that released by Sun which in turn increases Vitamin D3 in the body. Back when in 2009 January I got diabetes, 2 months after, i.e. somewhere around March 2009, I was referred to that machine (here there is a center where they give free massage) so I just went for some days to try as they claim it is also capable of curing diabetes.

They said, that initially to reverse the disease, it may do opposite, that, if I want to cure or lower my sugar levels, initially they may increase and it did. But then I got tired of that mess and said, enough, it's good for nothing. Then, I remember that day well which changed my life forever, 16 April 2009, it was last day of my 9th grade exams and sudden pain started in my left leg on side near the hip joint and down below it as well.

Months after, my Vitamin D tests revealed that it was only 9.62 and that I also had Osteoporosis.

I feel that the machine Ceragem only did this mess to my body, it removed Vitamin D instead of doing any good (reversal effect) because I was all fit and fine before it.

Thals (majors) are already complicated and I understood after this incident that we should stay away on rather what's not tested on thal majors yet and that it can cause big troubles rather than doing any good.

-P.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: eldavido on September 09, 2012, 01:11:39 PM
i  have  alpha   thalassemia    minor  and  im  on    major  tranqillizers   for  schizophrenia   and  am  constantly    tired   eat  lots  of  red  meat  green  tea  green  leafy  vegetables   multi  vitamin  supplements  no  coffee  for  5  years   got  any  ideas    for  me  to  combat  tiredness   with  alpha   thalassemia  minor==need  feedback
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Danny.H on October 02, 2014, 06:34:25 PM
Hello
I see this is an other older post that bring me more concern about being a thallasemic trait person .
I already said in other posts that  this last year for me was very hard . Since May 2013 I have been in the doctors office more than I ever been  during all the years of my life . I have seen my PCP ,I have seen hematologists,I have done all the medical tests you can imagine from a simple blood test every month,to CT scams and ultrasonography of various parts of my body....all this because I'm too anemic ,I was suffering of a strange abdominal pain,and join pain ,fatigue ,dizziness,I have a strange pallor on my skin . I have a gallbladder removal last week also. I finally went to a naturopathy doctor that is actually a member  of the church I go .actually he came to me and said everything I was going through without even seen one of my blood exams. So I said I was dealing with thalassemia gallstones  and maybe iron and folate problems. He said right away that the supplements I was taking were just making me feel worst. I stopped my folic acid ,B100 complex, C,D,NaturalE,potassium and magnesium and guess what? May color improved a little bit. I have taking it for good two months. And I though It was going to help but unfortunately got me worst. I keep talking with this amazing doctor and we got allergy  and hormones blood tests and saliva  tests. Couple weeks after ( and also after a laparoscopic procedure) my naturopathy doc gets the tests back and explained to me that I'm in extreme fatigue because I have stage 7 adrenal fatigue. I have just one hormone working to keep my brain going I lost everything.  I literally running to low I do not have adrenaline or noradrenaline enough. I never heard about it but there it go let me get educate .... I'm sharing it with you because the symptoms are the same we thallassemic trait are having Extreme Fatigue ....well the thing is this can be cause by stress, consumption of a poor diet with lots of meat and fat.( which doesn't match my life style!!!) so my question is us the free radicals from my thalassemia doing it? I was born a vegetarian, I did have a time in my life that I did consumed eggs and cheese but not even close of people are used too and also has at least 4 years that I just don't do it anymore ,I have been even cutting a lot in cooked foods and practically nothing refined... Am I just an unlucky person or thalassemia even trait gives us more chance to develop this things?
I having a hard time cause my family don't have history of the things I have been facing or  I even have done anything to bring this kind of sickness to myself. Anyways  ....this is another link for us to read ,and I'm sure has a lot about adrenal fatigue to be read and watch over the internet. I'm being treat by my naturopathy doctor taking special supplements cause the normal ones Do Not Work. So if you are in fatigue and even the supplements are not working is better you check with a naturopathic doctor cause I already learn that MD s don't want to deal with it .

    http://www.adrenalfatigue.org/what-is-adrenal-fatigue
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Danny.H on October 02, 2014, 07:23:56 PM
I'm not sure about each is the number of the stages for adrenal fatigue. Since the doctor show me a stage 7 on a test diagnostic that I don't remember if is a number just for the test. When  I search online I found just until stage 4 that actually is very similar to Addison's desease.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: mkpr13 on February 01, 2015, 04:32:12 AM
In 2007, I was diagnosed with alpha thalassemia trait and my hgb never dropped below 12.8 mg/dl even with a ferretin level of 9.  I was extremely fatigued until my ferritin got above 50.  It was above 100 since 2012 and I thought it would be okay to donate blood last spring.  Within a few days, I had right AB pain with right shoulder pain.  Gallstones did not show up in ultrasound but problems with pancreas did.  Many tests later I was diagnosed with chronic pancreatitis.  I tried to tell doctors that trigger is blood loss but they don't think so.  The bilirubin stones from hemolysis makes sense. 

On another note,  I have a lot of problems with ingested D (supplements and fortified foods).  I can get it from sun perodically throughout day and feel fine.  I cannot take folic acid (folate is fine), B6, curcumin, methionine (sp), selenium and E without side effects.  I try to eat a very balanced diet so I don't need supplements or fortified foods.  The only supplement that I take is magnesium. 

Best wishes.
Melissa

Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Danny.H on May 27, 2015, 03:14:52 AM
I have read lots of good information here .Thanks to Everyone that have been posting .
I'm in Bed resting right now. I have been feeling lack of oxygenation too. I finally came to realized that this us the cause of the fatigue. But all the explanation about inflammation and allergies is very interesting. I had an allergy test done last September and I'm virtually allergic to everything ( at least at this point )I'm an alpha thal minor but last couple years thallassemia has giving me a challenging time. The way I have been feeling lately  I'm sure my MD doctor would send me to the hematologist to have some iron infusions done. I realy hope my naturopathic doctor can help me with the oxygenation .
I'm taking some supplements for the allergies, for the missing gallbladder and
Vitamin B,D, Coq10
Last bloodwork was fine but I still fatigued
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: jsbhavsar on March 22, 2017, 07:28:24 AM
During 2007-2010 I was diagnosed of following in USA hard wintry months:
- hypothyroidism
- B12 deficiency
- Later in 2010 I was diagnosed with Vitamin D deficiency (it appeared 5 in the blood tests)
(my joints always pained severely in the wintry snowy months)

Doctors started medicines like below:
- levothyroxine 50 mcg, 75 then 88 and then 100 mcg
- B12 shots (cyanacobalamin) -- starting weekly, then monthly(11) then one every quarter
- 2000 IU of VitaminD3 soft gels twice a day to be taken exactly 12 hrs apart (eg 8am and 8pm)
I purchased OTC Carlson 2000 IU soft gels from Amazon.com

Within 6 months, my Vitamin D levels shot to 60. I thought the same would remain in my body for long.
I quickly forgot to take D3 supplements after returning to India.
Thus, in Aug 2013 my Vitamin D fell to 14.44
I was asked to take some D3 shots however fearing the painful oily shots, I continued on oral supplements of D3

I usually take D3 tablets twice a day from October or November and continue the same until Feb or March in India.
I also take them one month in July and August when it rains heavily in India and bones can pain.

I prefer and do take B12 shots but never the D3 shots. They are oil based formula and are quite painful at the time they are given followed by sustained pain for 24 to 48 hrs. I avoid D3 shots.

My own analysis for fighting fatigue in beta thal patients is:
- take regular folic acid tablet but do try to give a gap sometimes (you dont want flood the system with RBCs)
  eg take folic acid 5 mg tablet every day for 45 days and then give a gap for 10-12 days, again start
- take regular B12 shots (one per quarter methylcobalamin 1000 mcg)
- take B6 Pyridoxine Hcl tablets only for a week when you are going to take B12 shot
- Vitamin D3 soft gels to be consumed just before wintry months and stop when sunny months appear

Thanks,
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: Andy Battaglia on March 26, 2017, 10:36:59 PM
My doctor has me taking vitamin D even in the summer. It really depends on how much sun exposure you get. Do you wear long pants and long sleeves in the summer? If so, you may still need D during those months.
Title: Re: Real causes of fatigue in thalassemia (minor)
Post by: jsbhavsar on March 27, 2017, 10:06:31 AM
Yes, in India I still wear long pants and long sleeves shirts all 52 weeks.

This morning I took weekly dose of my Vitamin D3 1gm granules (60,000 IU) dissolved into a cup of milk and consumed it. Last 3 days have been scorching hot sun on continental India with some sudden heat increase.
Tomorrow morning is my B12 500 mcg weekly dosage due.