Swiss Total One Antioxidant Multi for Thal minors

Although in the past it has been thought that high doses of vitamin D should be avoided,

It was assumed that taking cholecalciferol (vit. D3, prohormone) may be as dangerous as taking calcitriol (the active hormonal form), and that assumption was not based on any scientific proof. So if someone is still afraid of taking cholecalciferol, he/she is afraid of taking calcitriol (may be dangerous), not cholecalciferol (almost completely safe).

the UAE, where in spite of more than adequate sunlight, the vast majority of women were found to be deficient in vitamin D.

My father who is retired and spent the whole summer outdoors in the sun, has also vit. D deficiency, quite severe. So this all shows that nobody is immune to this deficiency. This is because we spent most of our time indoors, wear long sleeves, and so on. And this deficiency adds to all the problems you may already have.

Please note that a 60,000 IU dose once per month was proven safe. I don't think toxicity is really an issue and it has to be remembered that thalassemics are often severely deficient in several vitamins and minerals.

It is safe statistically, but as usual (and I am repeating myself here) the statistical analysis lies.
The person taking vitamin D, especially with severe deficiency may suffer from secondary parathyroidism and hypercalcemia. Although life threatening hypercalcemia is very very very rare in this case, we'd like to be extra cautious here. You should ask your doctor to have your calcium levels tested.

Bigg, I'm happy to hear you've found something that gives some help. It's not easy to overcome genetic problems but much can be done to optimize regardless of what nature has given you. Keep us posted on what you find that does help.

As Andy and probably some of you remember, I was (supposedly) diagnosed with genetically induced myopathy. Now after vit. D supplementation it seems that all of the symptoms are gone, and even if I have this myopathy, it does not cause any problems.
Vit. D deficiency itself can cause muscle myopathy:
http://cat.inist.fr/?aModele=afficheN&cpsidt=1340783

Now the problem is the severe mucous membrane dryness (due to vitamin D deficiency and hormone imbalance), catching colds (because of nose and throat dryness) and recurrent shingles (due to colds and thus weaker immune system and direct influence of vitamin D deficiency on immune system).

*Vitamin D induces antimicrobial protein Cathelicidin in skin (and other tissues):
http://www.medinewsdirect.com/?p=594

*Vitamin D has immunomodulatory effect:
http://cat.inist.fr/?aModele=afficheN&cpsidt=13771750

*Vitamin D affects chondrocytes in joints:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1635166

And has anti-inflamatory effect in many diseases, for example in MS.

Those articles above are only examples for the given subject, but there are many many more similar cases if you only look for them.

Because I am not vitamin D deficient anymore, now I have to deal with hormone imbalance, which was caused mainly by stress (muscle, joint pain, not feeling well) and I don't know exactly how to go about it.
I have hyperprolactinemia (prolactin is one of the stress hormones) - as high as 15 times above the normal range, and it's not a tumor prolactinoma.
Excess of other stress hormones (adrenalin, cortisol, endogenous opioids, DHEA) is very likely too, but difficult to measure.
One of the cortisol blood test results was out of normal range on the high side, but the next test was within normal range. The doctor said it's nothing (why would he order another test if one test said yes and the other said no... it's easier just to get rid of me).

Catecholamines:
http://www.nlm.nih.gov/medlineplus/ency/article/003561.htm
were within normal range, but on the high end of the range and it was one of better (without pain) days when I did the test.
I was also thinking of doing some kind of imaging scans of my adrenal glands. But this will rather not give the expected information.
There are also tests when one regulatory hormone is injected to see if the other is abnormally out of range - however such tests are not done here.

Of course right now the pain is minimal, so it seems all these problems could self-regulate. However it would be good to boost the process with apropriate drugs...
I used to take Dostinex which inhibits prolactin secretion and I will be taking it again soon.
But what about the other hormones, is it possible to block them somehow?

What I need now is a good pain management method that would get rid of these harmful hormones, but I am afraid that doctors of this kind here treat their patients only with opioids (and I don't need these at all now) and with antidepressants (or other drugs of this kind - how do you call them; theoretically don't need these either - not depressed, but some of them may alleviate the physical stress; I wonder which ones; the problem is that some of them can also cause hyperprolactinemia, paroxetine being one example, and I don't want that). It is very easy to get a prescription for an antidepressant without doctor even digging deeper into your medical problems. So everytime I go to the doctor, it is suggested that I should take one of these drugs...
So my thalassemia minor was supposed to be treated in this way (and good multivitamin did the trick), my muscle myopathy (vit. D supplementation did the trick) and joint problems (it finally showed that laparoscopic operation was necessary).
I need these doctors to adress the real issue here, not to just get rid of me as fast as possible with some usually wrong recommendations.

If anybody has an idea how to deal with, or had problems with these hormones, please speak up...

I also wonder, maybe there is yet another reason of my weak immune system (and dry throat)?

http://www.merck.com/mmpe/sec13/ch164/ch164f.html
says that candida albicans may cause immunodeficiencies. And I definetely have candida albicans overgrowth - it was grown in a cultured cheek swab (I hope that's the name) and I have different other symptoms. I'm currently taking Nystatin.

OK, these are the problems to solve - although there was a great progress, there are still many to solve. Any opinion appreciated.

B.

Bigg,

Check the report at http://mercola.fileburst.com/PDF/Candida-Special-Report.pdf  for information about candida infections and ideas on how to treat it. I had the problem some years back (yes, men also get yeast infections) and I had to avoid all foods containing yeast or molds. This included all bread with yeast and things like peanuts. In my case, I finally got relief by having my slow thyroid treated. I don't know what the connection was.

(yes, men also get yeast infections)

In my case candida had an easy task as the doctors told me not to eat fats (due to this genetic myopathy), which lead to eating carbs. So it seems this had to happen.

This included all bread with yeast and things like peanuts.

I also switched to this kind of bread. But once it was unavailabe and I bought the yeast type.
Effect: stomach ache for the whole night, recovering from this incident for one week.

This dr Mercola says that there can be hormonal problems caused by candida overgrowth, including cortisol problems. Interesting.

B.

Hi.
I don't think the Alpha lipoic Acid and the NAC content are good ideas for thals,because Alpha lipoic Acid is a potent copper chelator,whereas NAC combines with zinc and copper and can remove them from blood circulation. According to an abstract,the blood levels of copper in both plasma and erythrocytes were higher in the patients (children) with thalassemia than in the controls.This means,we need more copper than normal people,because copper is inwolved in red blood cell production,hemoglobin production and super-oxid dismutase production,which is higher,than in normal persons.It is alos important for iron metabolism.So be careful with the copper...
http://www.ncbi.nlm.nih.gov/pubmed/9656419

Thank you kindly for the information ParkerLewis, do you think that this applies to thal majors and minors alike?

Thanks again,

Sharmin

Andy,

I have noticed that since my son began taking B vitamins his energy levels have increased manyfold. 

For myself I have noticed that I am crashing despite taking multivitamins, my vitamin D levels are now good too and my hg is 11.2 (which is good for me).  I am usually very energetic, these low energy levels are making it hard for me to function.  I am wondering if taking folic acid and B complex may be a good idea for me too.  Do you know what dose I should be taking?  I am 47kg. 

Thanks again Andy,

Sharmin

Sharni,

I take the B complex you can see at http://www.puritan.com/b-complex-vitamins-021/b-100-complex-ultra-b-complex-capsules-010282 Take one daily.

Any natural source B complex like this would be good. the amounts of B vitamins in multi vitamins is too low, so look for a B-100 supplement. You might also consider some form of wheatgrass. I am taking vitamin D twice daily now and it has made a noticeable difference.

Thanks Andy,

I will start taking those asap.  Little A noticed a change within 2 weeks after starting B complex. 

Sharmin

Andy,

Is an L-carnitine (400mg) and alpha Lipoic Acid (200mg) supplement good for thal minors as well?  My husband and I are hoping to take the supplement as well.  I am sure that thal minor can be taxing on our bodies over time.  I am also considering IP6. 

Thanks Andy,

Sharmin

Sharni,

There is a great likelihood that many thal minors suffer from mild pulmonary hypertension (PHT) as they get older. Reading the posts of so many older minors, you see the symptoms of PHT mentioned over and over. It is well known that PHT is found in major and prevalent in non-transfusing intermedias, and causes include long term hypoxia or shortage of oxygen and loss of nitric oxide in blood vessels, leading to loss of flexibility which causes high blood pressure in the artery between the heart and lungs. I think many minors would benefit by trying to promote nitric oxide production and L-carnitine can help. Watermelon is a good food source of nitric oxide inducers.

Thank you Andy

Andy,

My maternal grandmother - is in her late 70s now.  She has thalassemia minor and about 9 years ago she started to have heart palpatations.  The doctor put her on blood thinners and meds to slow her heart rate.  This caused her heart beat to drop very low so she has had a pacemaker for many years. 

I suspect that having a low hemoglobin most of her life has contributed to her heart issues.  My mother, who is 53 also complains of an occasional skipped heart beat, I wonder if that can also be attributed to thalassemia. 

I think that all thals minors should take supplements to protect them from the long term effects of anemia.

Sharmin

My mother, who is 53 also complains of an occasional skipped heart beat, I wonder if that can also be attributed to thalassemia. 

My mother always had an issue of heart palpitations,she admits that she feels better when she keeps taking her multivitamin,but she is taking Theragran,which contains a little bit of iron and she takes it on almost daily basis,i don't know if iron on daily basis,even if in small dose is good for her,i have asked numerous times to change her multivitamin,but she won't listen to me    .

Zaini.

Zaini,

I agree that thal minors need to make an extra effort in taking care of themselves, it can be taxing on the body to be anemic all of the time.  Mom's are like that - mine can be pretty stubborn too 

I agree that thal minors should not be taking supplements with even small amounts of iron. 

Sharmin