unwanted Iron and beta thal minor

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Offline Prets

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unwanted Iron and beta thal minor
« on: April 02, 2010, 10:32:13 AM »

Anyone who is a symptomatic beta thal minor, who took iron when it was not needed?  I have taken it on and off for close to 20 years, and then realised i didnt need it.

I developed a lot of unexplained hormonal issues when on iron, which have somewhat reversed after I stopped iron.


I'm hoping for guidance here, from anyone with a similar experience? 

Is it possible that I may have some iron still in my organs? How does one diagnose or tackle it?   Since I am not on iron for a year now, will it go away by itself?

To be very honest, My thal minor was diagnosed 2 years back, I have yet to get my DNA tests done.  I am not knowledgeable about anything more that thal intermedias/ majors here face.  I am aware that iron in the blood stream is different from iron in the body organs.

So far I was only focussing on thal minor issues, will take time for me to understand the concept of iron overload, and whether or not I may have had it.


I still have IBS/Gluten intolerance, and some pancreas issues. I need to take enzyme pills with food , and I still cant have oil, fats.


Since my other hormonal problems got solved, I am wondering if this too , can be taken care of.


Any thoughts?  The forums seem silent these days. I've been unwell for long, so not been able to even log on.

 :)
Symptomatic Beta Thal Minor.

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Offline april588

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Re: unwanted Iron and beta thal minor
« Reply #1 on: April 05, 2010, 12:49:23 AM »
Hi Pretty,
 I am sorry to hear that you are having hormonal issues. My thal minor was diagnosed last year. Luckily, I never took iron supplements. Yet, I am having hormonal issues. I have slightly high testosterone level than normal. I also have irregular and painful periods. My gynecologist told me to take birth control pill which will help me to balance all the female hormones. Unfortunately this is not an option for me since I am planning to have a baby pretty soon.

Because of high level testosterone, I have developed mild pimples, mild hair loss and very strong appetite.


I have issues with oily and spicy food. But, I did not know that it all goes back to my thalasemia minor trait. Sometimes, I get diarrhea sometimes I get constipation. Thanks for the info that it’s related to Beta thalasemia trait. I sometime take Miralax for constipation. In fact when I went to a gastronologist for my bowel issues, he did some blood work and told me that I have thalasemia minor trait. I did not to see a Hematologist yet.

I try to avoid oily food as much as I can. In fact I can not eat too much oily or spice food. I feel full if I eat a little bit of spicy/oily food.

I wanted to ask you, why do you need a DNA test for?

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Offline Prets

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Re: unwanted Iron and beta thal minor
« Reply #2 on: April 05, 2010, 07:51:00 AM »
Hello April,

The DNA tests tell you exactly what the genetic mutation is for the thal.  I am new to this topic myself - probably the more knowledgeable members can answer your questions technically.

Some cases of thal minor are very symptomatic, like me, others are not even aware they have the thal trait.  

I developed problems with oily/spicy food since the last 1-2 years itself, probably the hormonal imbalance taking over.

Not being able to tolerate fats is also possible related to pancreatic/digestive enzymes/hormones. (Dont know the correct medical terms, so please excuse me...     :-)     )

My irregular periods had something to do with my thyroid/prolactin hormones. I was also given birth control for few years, but it didnt help at all. Then I started going to an endocrinologist, and this thyroid / prolactin issue got sorted out. Since then periods are normal. Regular and lighter and less troublesome.

Many other hormones were out of range, but it settled soon after i stopped iron and switched to a gluten-free diet.

Hope this helps.  :-)  

« Last Edit: April 09, 2010, 11:27:25 AM by Preety »
Symptomatic Beta Thal Minor.

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Offline Zaini

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Re: unwanted Iron and beta thal minor
« Reply #3 on: April 06, 2010, 04:17:05 AM »
Talking about Hormonal issues, I have PCOS,and obviously because of that i have hormonal imbalance,but i never though hormonal imbalance can relate to iron overload  :huh i took iron supplements all the time before i was diagnosed with thal minor (or more correctly i was always prescribed iron supplements) then when my daughter was born my hb went to 7,and my very arrogant doctor infused me with IV iron,twice,i don't know if i have any kind of iron overload,my hb is always around 10,and we know chronic low hb can lead to more iron absorption from food,good thing i am not a red meat lover.

Talking about mutations,my mom and my bro also have thal minor,but their hb is around 13.5,i am the only one whose hb hovers around 10  :( .

Zaini.
^*^Xaini^*^

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Offline Prets

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Re: unwanted Iron and beta thal minor
« Reply #4 on: April 06, 2010, 03:10:51 PM »
I'm lucky if I can even manage a 9.5.

It maybe a coincidence - as my doctors like to believe, But i always felt iron was harming me. When I stopped it, many hormonal issues got better without reason. Maybe it was a combo of celiac and unwanted iron and something Andy once mentioned about malabsorption due to celiac.

Its too complex for me to understand or explain, but i'm better minus iron. My ferritin still stays 10-20, but as long as hb maintains around 9, I wont bother about anything else.  Iron levels I check and its usually normal.

I also believe that the iron is the cause of my IBS, since i struggled with constipation for that entire 20 year duration. Now I alternate, due to the IBS, or i'm normal.

Thats why I was wondering about some iron loaded somewhere that doesnt show in my ferritin levels?

I've never heard of a thal minor chelating. Maybe my DNA test says something else, no idea. Have yet to do it.

Symptomatic Beta Thal Minor.

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Offline april588

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Re: unwanted Iron and beta thal minor
« Reply #5 on: April 07, 2010, 01:56:09 PM »
Thanks Preety for your advice. This site gave me so much valuable information and helped me a lot to know more about my health condition.

Re: unwanted Iron and beta thal minor
« Reply #6 on: April 16, 2010, 08:44:55 AM »
Preety,
I was diagnosed 35 years ago with beta thalassemia minor.  At the time, my iron overload was so bad, my doctor said he had never seen such high levels in a living human.  He was head of oncology at a major hospital.  Following biopsies of my inner organs, he made the determination my organs were damaged to the extent they compared to that of an 80 year old woman.
At the time, there was no known treatment.  It was experimental that they took 1.5 pints of blood from me every four weeks for 2 years and did not replace it.  My body reproduced the blood, and without iron being added artificially anymore, I did come back down to tolerable levels.  That has been 35 years ago.
Now, I am told there are drugs to help reduce the iron levels, and there is all kinds of known treatment.  I have been very impressed with the advice promoted on this site.  Be agressive with your care, keep strongly connected with thalpal and BE PROACTIVE!  Don't wait for something to happen or someone to tell you what to do.  Read the vitamin lists here on this site, listen to what they have to say and move forward confident you are headed in  the right direction and going to be happy to be alive a darn long time!  Thal minor can be controlled, and it can be treated as a part of your life, not the control center of your life.
The very best to you, OldThalGal

 

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