Pyroluria and thalassemia minor?

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Pyroluria and thalassemia minor?
« on: June 08, 2012, 05:31:47 PM »
Hello All,

Hope you are all well (considering) and life is good for everyone.

This is a follow up to my story I wrote about a couple of months ago:

http://www.thalassemiapatientsandfriends.com/index.php/topic,4392.0.html

As I said before, I have been suffering for almost 20 years now (since 1993, when I was 19 at the time) from bouts of feeling lightheaded, fatigue, brain fog, etc, you get the picture.

I know Thal minor can cause/explain this but I always felt there was another (or multiple) conditions working together to cause the symptoms.

I decided to explore if I was toxic with Mercury, as I had 6 mercury amalgams that were 25-27 years old, I had them since junior high school and the symptoms appeared a few years later which might explain as you get toxic the symptoms appear.  I took them out last month, with the help of a trained dentist (he used a dam, high power extraction... the works), and I did a follow up with a hair test, for both toxic metals and essential minerals.  The results were surprising.  Mercury was a bit high and I will probably follow a chelating protocol, but I was more surprised of the following:

* Zinc WAY high, Interval Range 130-200 microg/g, my reading was 430.  After further investigation, this doesn't mean I'm toxic with Zinc, is probably the opposite, that I'm deficient.

* Calcium moderately high, Interval Range 200-750 microg/g, my reading was 1110.  Again, probably means I'm deficient instead of toxic.

* Copper moderately high, Interval Range 11-30 microg/g, my reading is 46.  Might be related to the Zinc deficiency allowing more copper into my tissues.

* Potassium WAY low, Interval Range 9-80 microg/g, my reading was 5.  Apparently this my hint adrenal burnout or something related to that.  That could explain my symptoms by the way.

* Lithium WAY low, Interval Range .007-.020 microg/g, my reading was <.004, basically none.  The doctor that did the follow up for the hair test recommends lithium orotate, I have heard HORROR stories from lithium (the prescription kind), but I'm willing to give the natural form a try at low doses (there is an over the counter lithium orotate with only 5mg) to see if it helps my mood and anxiety.

* Strontium moderately high, Interval Range 0.3-3.5, my reading was 4, Doctor asked if I have been near radiation, I said no that I know of!  But in the world we live in maybe we are all a bit radiated with the Japan tsunami and all that stuff.

* Cobalt WAY low, Interval Range .004-.02 my reading was .002.  Doctor asked me about B-12, I had serum testing done 3 months ago, was right in the middle of the interval range (actually closer to upper range).  He was puzzled about this as low hair cobalt typical correlates to B-12 deficiency which could explain my symptoms.  Asked me about folate, again testing done 3 months showed good serum Folate.

The thing is, after relating all this new data, a puzzling explanation came along, is called PYROLURIA, which is a genetically determined chemical imbalance involving an abnormality in hemoglobin synthesis.  Is a highly underdiagnosed disease that basically chelates B6 and Zinc from your body and thus you are deficient in these vital vitamin and mineral.  The solution to Pyroluria is to supplement 3 times a day with sufficient B6 (in converted P5P form) and Zinc (gluconate or pycolinate) to reverse the deficiency.

Has anyone heard about this?  I did a search on the forum for the word Pyroluria and came back empty.  Maybe I'm barking on the wrong tree here but it would explain both my hair analysis and symptoms almost perfectly.

Here is a link that explains this further: http://drkaslow.com/html/pyroluria.html

What do you guys think?







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Offline Andy Battaglia

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Re: Pyroluria and thalassemia minor?
« Reply #1 on: June 09, 2012, 05:46:44 PM »
You may be onto something. I would suggest supplementing with B6, zinc and manganese, as suggested at http://www.diagnose-me.com/cond/C372380.html Supplement for at least 3-4 months.
Quote

Pyroluria is treated by restoring levels of vitamin B6 and zinc so that this double deficiency is corrected. Supplementation with vitamin B6 until daily dream recall returns (a normal phenomenon) as well as with zinc and manganese needs to be continued daily. With zinc, manganese and vitamin B6 therapy the pyroluric patient may start to respond in 24 hours and certainly some progress is noted within one week.
How is your vitamin D level now? When I see such low levels of minerals, D immediately comes to mind.
Andy

All we are saying is give thals a chance.

Re: Pyroluria and thalassemia minor?
« Reply #2 on: June 11, 2012, 03:34:09 PM »
Hi Andy,

Thanks for the response.  I got my Vit D tested this morning.  Not related to the Pyroluria, I wanted to do so after 3 months of supplementation.  I tested 19.9 in early March, I supplemented 5,000 IU daily in March and 10,000 IU daily April and May, and I continue to do at that level right now.  Lets see where I'm at, I'll share my results maybe they can benefit someone else.  I should get the results in about 2 weeks.

I also asked for the following tests as they can shed a light if I have Pyroluria:

- Vit B6 serum
- Copper serum
- Zinc serum
- Ceruloplasmin serum
- Aminoacids panel in blood

There is a definite test for Pyroluria but is not available in Mexico and I don't trust even if I overnight it back to the US that the results would be valid.  The test is only administered by a handful of labs in the US and is usually a mail it in thing, you have to freeze the urine sample and send it through some special delivery with freeze packs.   So for me to get tested is a challenge.

 

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