My story and test results

I'm a 38 yr old male.  I was born in Italy but have lived in Mexico for a long while now (most of my life).  When I was very young, a child, my parents moved from Italy to Mexico.  My mother is originally from Sicily (south Italy, Mediterranean coast), where Thalassemia (mainly minor) runs wild.  My mother has it and I have it.  I was first diagnosed when I was 16, when a routine check in high school showed a lowered Hemoglobin, Anisocytosis, Hypochromia, Microcytosis.  All tell-tale signs of Beta Thalassemia Minor.

I was told then that the disease should be "asymptomatic", and it shouldn't create any issues during my life.  The only thing I was told was to watch my Hg and if it ever fell down from a level of 10 to start taking iron for a couple of months, stop and then check it again.  Again, the ignorance and stupidity of doctors that they couldn't do a little research and find out that iron + thalassemia are not a good combination, they hear the word "anemia" and try to treat them all equal.

The only other thing I was told was to carefully screen my "future" partner and avoid a Thal minor as 2 Thal minor = prob a Thal major, I was told how devastating this disease is for Thal majors; is something I have been certainly aware since then.  I can happily say I'm now married (with a non-Thal, 10 years this year), have 2 beautiful sons, 6 and 4.  The older one I suspect he is Thal minor as well, he has the same symptoms I had at his age: recurrent nose and gum bleeds, fatigue, can't really do sports, etc.  Doctors say is too soon to test and we should wait until he is older and has stronger symptoms.

Unfortunately since I was 19, despite the "is going to be asymptomatic" reassurance I received a few years back, I have been having recurrent symptoms similar to what many of you have shared on the forums:

- Dizziness: Not really vertigo, is more a feeling of a heavy head, like I can't keep my head straight and I want to rest it somewhere.  Is more "light headness".

- Fatigue: I can say with joy I have been able to do my life, finish school, get an MBA, have my own business, get married, have 2 beautiful kids, but still my energy levels are not normal and I wish I can find something to have the energy to give my kids and wife the quality time they deserve.  I work from 9 to 6 and on a bad day I have the energy left only to get back home and lie down, watch TV for 2-3 hours and go to sleep at 9 or 10 max.  On a good day things are different.

- Eye floaters: This started a few years ago, they are not as bad as the fatigue.  I usually have bad weeks or months when the fatigue is really bad and that's when the floaters flare up and sometimes mess with me when looking at the computer or working.

- Nose/Gum bleeds: They were pretty bad, usually after spending a while under the sun, or during the night (I would wake up and the pillow would be full of blood)... but strangely they suddenly stopped like 6-7 years ago.  I suspect at the time my blood got thicker as the platelet count started going up and the feeling of "light headness", specially when sitting on a hard surface, is worse.  My own suspicion? Is the blood has a hard time getting to the head and that's why I get "dizzy" or "light headed".  Usually when I'm very light headed I take a couple of 325 mg aspirins and they make it way better, it doesn't go away but it becomes manageable. I have read that the spleen cleans the blood from platelets, maybe my spleen is not working very well as of late and that's the reason.

- Poor circulation: Since I can remember both my legs and arm "fall asleep" easily.  If I sit down my legs will be numb after a while and at night I sleep upside down and put my arms under the pillow, every time I wake up my both my arms are fully numb and I have to wait 3-5 minutes to be able move them properly.  I get "tinglings" and other neurological type symptoms both in hands and feet but I have been checked for neuropathies, MS, etc and everything is negative, I think is just poor flow from having less blood than normal and my blood not flowing properly with all the poor blood I carry.

- Weight gain: Maybe not related to Thal minor directly, but when my energy gets very low, I have had periods when I suddenly gain a low of weight (very hungry all the time).  I have had stretches where I gain 10 kg (aprox 22 lbs) in 4-6 months.  Maybe the Thal minor affects my thyroid or blood sugar management.  The more weight I gain the worse I feel so is a vicious cycle.  Then I struggle a lot to lose the weight, is not even fair sometimes to be honest.

Because I was told the disease doesn't produce symptoms, I have seen a myriad of doctors trying to find out "what's wrong with me?".  That includes cardiologist, neurologist, endocrinologist, and other specialists.  None could figure out "anything" despite multiple tests, MRIs, etc.  I always mentioned Thalassemia but they have either heard very little about it or said "if you don't have the transfusion type (Thal Major/Intermedia), it shouldn't be the issue".  I mentioned with a lot of detail my symptoms (even writing them down so I didn't forget).  What I have figured out is that doctors don't care and at the end only you with help of communities such as this can get better.

As far as supplements, mainly I have tried Multivitamins, Strong B (100mg) supplements, L-carnitine (for weight loss mainly, I take it before exercise), Ginseng, of course Folic Acid (as that's the only supplement doctors have mentioned), B-12, Iron in small doses (I find it helps with the fatigue).  I have also tried most of the stuff mentioned here on the site.  What I haven't tried is Wheatgrass but I'm starting tomorrow morning I'm looking forward to see if it can help with the fatigue.

I did a new battery of test last week and here are my results.  This is the first time I test my Vitamin D and E and I was surprised that the Vitamin E is TWICE as higher as the max number mentioned on the test.  Andy, if you know something about this, please let me know.  Is having too much serum Vitamin E bad?  I don't take a special Vitamin E supplement, just what I get from diet and the Multivitamin which I don't think is much.

Blood work:

* erythrocytes - 6.58 mill/mm3 - Reference value: 4.7 to 6.1 - Is HIGH (as expected in Thal minor)
* hemoglobin - 13.6 g/dl - Reference value: 14 to 18.  Is actually not bad, the highest I can remember in a long while.  Have never seen it above 14.
* hematocrit - 41.6% - Reference value: 42 to 52.  Again the closest to reference value as I can remember.
* corpuscular volume - 63.2 fl - Reference value: 80 to 94.  Is always hovering from 60 to 65.
* Mean Corpuscular Hemoglobin - 20.7 pg - Reference value: 27 to 31.  Always around that number.
* Mean Concentartion of Corpuscular Hemoglobin - 32.7% - Reference value: 33 to 37
* WIDTH DISTRIBUTION OF ERYTHROCYTES - 18.2% - Reference value: 11.5 to 14.5

These results concur with Anisocytosis + microcytosis ++ Hypochromia ++ .  All signs of Thal Minor (Beta).

LEUKOCYTE PARAMETERS all within range

The platelets are high, they have been getting higher and higher each passing year, they are now at 361 thou/mm3, the reference value marks a max of 359 although the internet say concern values are 450.  Which supplements get to lower the platelets?

The Biochemical blood work is as follows:

Glucose: 79 mg/Dl (fine)
Serum Iron: 105 ug/DL (fine, within range)

All of the rest are fine with the exception of:
Cholesterol: 208 mg/dl (borderline high, max reference 200)
Triglycerides: 230 mg/dl (borderline high, max reference 200)
Globulin: 3.5 g/dl (max reference value is 3.3)

The Cholesterol and Triglycerides I'm not too concerned as I'm losing weight lately, so I will check again in 3-6 months and does values should be either in normal range or very close to it.  I have lost 15 kgs (aprox 33 lbs) the last 6 months with exercise and diet and I'm very close to my target weight of 80 kgs (172 lbs).

I also did tests for:

Folate: 8.97 mg/ml (fine, within range)
B-12: 688 pg/ml (fine, within range)
serum ferritin: 157 ng/ml (fine, within range)

And the surprise results are from:

Vitamin E (alpha tocopherol): 30.7 mg/L (way HIGH, the max reference value is 17.8 mg/L).  Andy do you know anything about this? What are the issues of high serum Vitamin E? Should I stop all vitamin E supplementation?
Vitamin D (25-HIDROXI): 19.9 ng/ml (way LOW, min reference value is 30, Andy has suggested at least 50!).

So I'm starting tomorrow to take 5,000 IU daily of Vitamin D3, which + the wheatgrass I'm looking forward to see what they can do to my energy levels.

I'm concerned about my Vitamin E levels and that the platelets keep getting higher with passing time.  My Vitamin D is low and I have never tested this before last week, so I'm looking forward what Vitamin D supplementation can do for me.

Any comments from anyone?  Andy what's your take on my situation?

Hi Droona,

Can I get some more information? Was the vitamin E test done after fasting (fasting includes having taken no supplement before the test)? What dosage of vitamin E have you been using? What type of vitamin E have you been taking? Has there been a correlation that you have noted between your hemoglobin level and taking vitamin E?

Hi Droona,

Can I get some more information? Was the vitamin E test done after fasting (fasting includes having taken no supplement before the test)? What dosage of vitamin E have you been using? What type of vitamin E have you been taking? Has there been a correlation that you have noted between your hemoglobin level and taking vitamin E?

Hi Andy,

Thanks for the response! 

Yes the Vitamin E test and all others were done after a 12 hr fast (no food or supplements, not even water).  I had dinner at 8pm the night before and the blood was drawn at 8am the day after without any prior supplements, food, water taken.

I have never taken a dedicated Vitamin E supplement, just what I can get from diet and multivitamins.  I currently take a powder multivitamin from Dr. Ron Kennedy which I put on a smoothie with sugar/sweetener free natural yogurt and a box of bluberries, it has 800 IU of Vitamin E mixed tocopherols (natural apparently), but that's the dosage of 2 scoops and I only take 1, so I'm currently taking 400 IU.  And that hasn't been long, it has been a month at the most.

Before that I used to take GNC Mega Men which has 100 IU of natural d-alpha Tocopheryl Acetate.

My breakfast M-F is a just made vegetable/fruit juice done from strawberries, tomatos, carrots, celery, cucumber, cilantro and ginger root.  That's about 1L of juice.  I take that + the smoothie I just mentioned and the rest of my supplements (resveratrol, etc)

So unless something from my diet is increasing these serum levels, I don't see how I have been over-supplementing myself.  Apparently 400 IU of natural vitamin E should be fine, right?

About your question if I see a correlation between Vitamin E and Hemoglobin to be honest I don't see a correlation, specially as I have never supplemented with Vitamin E only, just as part of a multivitamin.

What I was thinking last night was that Vitamin E is a fat-soluble vitamin, does it mean maybe my liver is not processing it correctly and returning it to the blood?  Should this be cause of concern?

Warm Regards,

Alex

Got my Hemoglobin electrophoresis results today, they took longer than the other tests:

SOLUBLE HEMOGLOBIN : NEGATIVE
HEMOGLOBIN A : 95.1%
HEMOGLOBIN S : 0.0%
HEMOGLOBIN C : 0.0%
HEMOGLOBIN A2: 4.9%
HEMOGLOBIN F: 0.0%

The test ends with the following warning:

"INTERPRETATION: THE HEMOGLOBIN CONCENTRATIONS ARE CONSISTENT WITH BETA THALASSEMIA MINOR."

Finally found what I was looking for. There is a direct correlation between vitamin E and K, and cholesterol level. The serum levels of each will drop as the cholesterol drops. This may be the explanation, because you have not taken the vitamin E doses necessary to get above normal. 30 is high, but the level isn't considered significant until 40. Even then, there doesn't seem to be any danger. 400 IU natural vitamin E with mixed tocopherols would be a sufficient daily dose, but make sure you aren't also taking it in other supplements. There is also the possibility of error in the test. I would advise watching how many supplements you are taking overall. Make sure you know how much you are taking when all things are combined. I tend to avoid multis, as it's easier to keep track of your dose and also easier to tailor a dose for your own needs. Are you taking any vitamin C? You might also consider vitamin K, as the bleeding gums could be related to deficiency. I found that the liquid vitamin D supplements seem to be more effective than the capsules. My vitamin D level was 19 after two years of taking it at 2000 IU daily. I never got above 35 until I took 5000 IU daily. Again, watch out for mega doses like 50,000 IU, unless under a doctor's supervision.

High platelet readings in thal minors are often no more than misinterpreting what is present. The smaller, pale red blood cells are often counted as platelets. Because thal minors have a higher turnover of red blood cells, minors will often have slightly enlarged spleens. To improve the quality of red blood cells and extend their lives, think folate, B complex, magnesium and vitamin E. One thing I learned researching tonight is that vitamin C regenerates the antioxidant property of vitamin E, thereby enhancing its antioxidant value. Your iron levels are normal, so there should be no concern about taking vitamin C.

About Platelets -  my counts are usually a bit higher than the upper limit. Makes sense now. :-)

Finally found what I was looking for. There is a direct correlation between vitamin E and K, and cholesterol level. The serum levels of each will drop as the cholesterol drops. This may be the explanation, because you have not taken the vitamin E doses necessary to get above normal. 30 is high, but the level isn't considered significant until 40. Even then, there doesn't seem to be any danger. 400 IU natural vitamin E with mixed tocopherols would be a sufficient daily dose, but make sure you aren't also taking it in other supplements. There is also the possibility of error in the test. I would advise watching how many supplements you are taking overall. Make sure you know how much you are taking when all things are combined. I tend to avoid multis, as it's easier to keep track of your dose and also easier to tailor a dose for your own needs. Are you taking any vitamin C? You might also consider vitamin K, as the bleeding gums could be related to deficiency. I found that the liquid vitamin D supplements seem to be more effective than the capsules. My vitamin D level was 19 after two years of taking it at 2000 IU daily. I never got above 35 until I took 5000 IU daily. Again, watch out for mega doses like 50,000 IU, unless under a doctor's supervision.

High platelet readings in thal minors are often no more than misinterpreting what is present. The smaller, pale red blood cells are often counted as platelets. Because thal minors have a higher turnover of red blood cells, minors will often have slightly enlarged spleens. To improve the quality of red blood cells and extend their lives, think folate, B complex, magnesium and vitamin E. One thing I learned researching tonight is that vitamin C regenerates the antioxidant property of vitamin E, thereby enhancing its antioxidant value. Your iron levels are normal, so there should be no concern about taking vitamin C.

Hi Andy, thanks for your very complete response.  I can't stress enough what a wonderful job you do here.  Let me know if I can help in any form, as I would do it gladly.

Ok, in regards to vitamin E.  I do take several supplements.  I neglected to mention that during my battery of tests a few years ago, I was ordered a 5 hour insulin/glucose tolerance test.  I didn't fail it completely, but showed "glucose intolerance".  At 2 hours my glucose got to 165, then a spike in insulin, and finally after 5 hours the glucose was back to normal at around 90.  I feel I handle glucose much better now, some of the symptoms (thirst, urinating frequently, etc) are gone, and my fast glucose at 79 is much better compared to a fast glucose around 97-100 at that time.

The endocrinologist mentioned that in order to avoid diabetes 2 (which my mother has, started in her 40s), I should carefully watch my diet and take supplements.  So on-and-off I take supplements bpth for thyroid and glucose management.  I'm currently taking DBCare and Thyrocare from WTSmed, they contain iodine, selenium, Bladderwrack thallus, Ashawangda root, Ginger root, Gymnema, Dandelion root, Milk thistle, Devils club bark and other nutrients.  Maybe some of those nutrients have Vitamin E, quite possibly.

Currently I'm taking these two + resveratrol (Resveratrol Extreem capsules, 1000mg) + Ultra Longevity Formula (a multivitamin in powered form from Dr Ron Kennedy @ www.medical-library.net).  This multivitamin the dosage is 2 scoops, I only take 1, and among other things has 800 IU of natural Vitamin E (I only take 400) , 100 mg of Vitamin B-1, B-2, etc (I only take 50mg), several minerals, etc.

As of yesterday I added Wheatgrass capsules (5 on an empty stomach, twice a day) + Vitamin D3 5,000 IU capsules (once a day).  I added the Wheatgrass after reading about it on this forum plus the Amazon comments which are quite good regarding energy, and the Vitamin D3 as I'm obviously deficient.  I will order some liquid form following your advice.

So I don't think I take a huge amount of supplements, maybe now, that I added these last 2, but I usually try not to take 4 or 5 at the same time.  My wife (she is perfectly healthy) has an issue with so many bottles, feel is "too much" and is concerned they will do more harm than good.

I plan to finish the Ultra Longevity Formula (I'm half way done, 20 more days aprox) and then switch to a B-100 complex and only keep B complex, D @ 5000 IU, Resveratrol, Wheatgrass and when I'm done with DBCare and Thyrocare stop for a couple of months on those 2.  I plan to add Omega 3-6-9 because I'm concerned about my cholesterol and triglycerides, I'm currently losing weight as I'm doing 45 minutes exercise in the morning + a low carb diet eating quite healthy from M-F specially, having a couple of treats on weekends.  But those 2 (Chol/Try) should be way lower than that, I need to take care of that.

About Vitamin E, I also thought that there was possibly an error on the test.  I will try the test again in 3 months, I will test Vitamin D as well then to see if daily 5,000 IU supplements help with the deficiency.  I also want to check my lipids in 3 months to see if there was improvement on cholesterol and triglycerides.  I want them both below 200, possibly below 150.

Sometimes that puzzles me from your response is Vitamin K.  I wanted to test it as well, but the test was so expensive so I decided against it.  To put things in perspective, all the 8 tests I did were US$400, the Vitamin K alone was US$380.  I must mention the nose bleeds and gum bleeds stopped a few years ago, they are now rare.  But maybe Vitamin K has something to do with this, I will "bite the bullet" and order the test anyway in the next few days.  Is important to know what are my levels of Vitamin K as I have never supplement it directly, just whatever a multi or diet can give me.  This is of particular importance to me as my oldest son has also recurrent nosebleeds/gumbleeds, maybe there is something here that I can discover and help him while he is young.

One thing I do notice is that my skin is very soft, my face is very oily (particularly around the nose and forehead), I can feel the oil if I touch my forehead, I don't put any moisturizer or ever need it to, however, strangely enough my palms are very dry and redish.  I can see the wrinkles quite clearly.  I blame it more on poor circulation than anything else, but maybe the excess vitamin E is causing this.  This is not something new, has happened for a while now (few years).  As others Thals have mentioned I'm also young looking and specially now that I've lost some weight people think I'm younger than my real age.  Just one of the very few perks of this disease!

About Vitamin C, the multivitamin I currently take has 1.5g in full dose so taking half a dose I'm taking 750 mg which seem fine for Thals according to what I've read here.  When I'm done with the multi I will keep taking 500mg.

Many thanks again and I'm looking forward to your response and suggestions.

I brought up vitamin K because of the gum bleeding. If this is still an issue, taking a K supplement would be an option. Vitamin C may also help with this, as it strengthens capillary walls. One sign of C deficiency is easy bruising and that is easily corrected. For reference only, I take 5-6 grams of vitamin C in crystal form daily. I have taken vitamin E for over 35 years and I have never had a problem with oily skin. In fact, mine gets very dry in the winter. You are making a lot of right moves to ward off diabetes and eventual arteriosclerosis. The one quality of vitamin E that I noted while searching was that it definitely delays and/or prevents arteriosclerosis in older people.

And on a side note about vitamin E: There are some very highly publicized "studies" that have claimed negative effects for vitamin E. When one looks more closely, these claims are the result of using synthetic E and also making assumptions about the habits of those with mortal illness. I find it very frustrating that I often have to be side tracked by questions about these bogus pop science articles run in the media, when it doesn't take much effort to find actual scientific studies that show the effects of vitamin E at the molecular level. These real studies invariably conclude that there are very positive effects of E. I mentioned a study showing the relationship between E, K and cholesterol. I have to wonder what real scientists who do these studies think about this junk science that spreads like wildfire throughout the media. And in reference to the mortality study of a few years back, Linus Pauling Institute found that the only real difference in death rates of patients with mortal illness was found in those who took over 2000 IU of E daily. From the start, I thought that studying patients with mortal illness had inherent flaws, and this only confirmed that. Any patient taking over 2000 IU daily does so because it is a last ditch effort to stay alive. These are the patients in most danger of death and I doubt E had anything to do with their deaths. If "researchers' would think for a minute, this obvious fact would have a major effect on their findings. Imagine that. Dying people making last ditch efforts to stay alive. How can this escape those doing the analysis?

I brought up vitamin K because of the gum bleeding. If this is still an issue, taking a K supplement would be an option. Vitamin C may also help with this, as it strengthens capillary walls. One sign of C deficiency is easy bruising and that is easily corrected. For reference only, I take 5-6 grams of vitamin C in crystal form daily. I have taken vitamin E for over 35 years and I have never had a problem with oily skin. In fact, mine gets very dry in the winter. You are making a lot of right moves to ward off diabetes and eventual arteriosclerosis. The one quality of vitamin E that I noted while searching was that it definitely delays and/or prevents arteriosclerosis in older people.

And on a side note about vitamin E: There are some very highly publicized "studies" that have claimed negative effects for vitamin E. When one looks more closely, these claims are the result of using synthetic E and also making assumptions about the habits of those with mortal illness. I find it very frustrating that I often have to be side tracked by questions about these bogus pop science articles run in the media, when it doesn't take much effort to find actual scientific studies that show the effects of vitamin E at the molecular level. These real studies invariably conclude that there are very positive effects of E. I mentioned a study showing the relationship between E, K and cholesterol. I have to wonder what real scientists who do these studies think about this junk science that spreads like wildfire throughout the media. And in reference to the mortality study of a few years back, Linus Pauling Institute found that the only real difference in death rates of patients with mortal illness was found in those who took over 2000 IU of E daily. From the start, I thought that studying patients with mortal illness had inherent flaws, and this only confirmed that. Any patient taking over 2000 IU daily does so because it is a last ditch effort to stay alive. These are the patients in most danger of death and I doubt E had anything to do with their deaths. If "researchers' would think for a minute, this obvious fact would have a major effect on their findings. Imagine that. Dying people making last ditch efforts to stay alive. How can this escape those doing the analysis?

Hi Andy,

Hope you are well.  I got my results from Vitamin K and A a couple of days ago:

Vitamin K: 0.85 ng/mL (Reference: 0.28 - 1.78 ng/mL) -> OK
Vitamin A: 52 ug/dL (Reference: 18 - 77 ug/dL) -> OK

So it seems I'm above normal in Vitamin E, deficient in Vitamin D (not a surprise) and Ok in K and A.

I agree with you on your point in regards to case studies with Vitamin E.  What I was surprised to find out is that the RDA of Vitamin E is only 30 IU.  So by taking 400 IU we are taking over 1000% the RDA.  If the lab reference values are set according the normal RDA (I would assume so), so then it wouldn't be that abnormal result to be around 180% the max reference value if I was taking 400 IU for a few weeks.

What it would be very interesting is to see what's your Vitamin E serum level for example.  If you have taken 400 IU for 36 years, and your lab results end up within the lab reference values, then there is something weird with my number.  Either lab error or something different in how I metabolize vitamin E.  I don't see how I could have taken toxic levels of vitamin E even by mixing other supplements.

In regards to Vitamin D, being my number below 20, I have read is recommended to take 10,000 IU for a month to raise the number.  I'm currently taking 5,000 IU daily since the beginning of March.  I was thinking to upping that to 10,000 from M to F and then 5,000 on the weekends, only for a month, to see if that raises the level.  Or would you recommend to stay with 5,000 daily and hope the number raises anyway?

I know you mentioned 10,000 IU daily should be with doctor monitoring but from what I've read more than a doctor has recommended to his/her deficient patients to do it short term to raise the number, particularly as that number is aprox the same number you would get with 15 min of sunshine.

I think your strategy of 10,000 IU daily and 5000 on weekends is sound because you do plan on follow up testing. I have to always exercise some caution in recommendations because others may read it and gather only half of what I am saying, so I do want to emphasize that once one is diagnosed as low, periodic testing should be done while taking high dose supplements.

I also want to mention for the benefit of all that I just heard from a thal major who is taking 10,000 IU daily of vitamin E. She says she has never felt better in her life. This is a high dose and not suggested for minors, but I do know other majors on doses this high and because of the constant depletion of E in their bodies, they do need a high dose to compensate. For minors 400-800 IU daily of natural vitamin E are appropriate.