New Member/Old Patient here

Greetings all you wonderful people out there with thalassemia, and those loving us who have it.  Until I found this site, I had heard of 2 other people with this disorder and that is in 35 years of knowing I have it.  I was diagnosed at 15 with Beta Thalassemia Minor, but told that due to the severity of damage the minor had done, I was major status.  Back in the 70's, thalassemia was considered quite rare.  An orphan disease as described by actor Telly Savalas in a TV commercial at the time.
I have suffered all of my 49 years from the symptoms, and am still alive!!!!  Because I have always felt I am here by God's grace, I have tried to ignore the fact I actually am 'sick'.  Until now, and reading about all of these beautiful people who have the disorder, and who have died from it, I have done a good job of ignoring the reality.
Obviously it is time for me to take this more seriously, but, what I really want, is to know if the fact I am so old and have been diagnosed for so long, could be of any help to anyone?  If nothing else, I am one of those positive people who will always encourage you.
I know many of my health issues are unrelated to thalassemia, but, I will try to somewhat detail my medical life in case anyone sees something here that interests them with their life as a thal!
I was adopted and there was no family history to work with.  My being 'sick' became apparant by the time I was about 2 and my parents searched for an answer, taking me to 47 different doctors, specialists and hospitals.  My earliest problems were kidney and bladder, and having to have my tonsils out.  But, I was always sick and never had any energy.  So, constant colds, etc. and finally, at 15, diagnosis.  I was told then my diagnosis came about because microscopes were finally advanced enough.  But..............by the time I was 15, I had been treated for iron deficiency anemia for about 10 years, and my levels of iron poisoning, in my blood, and inner organs, were astronomical.  I received 24 months of every 4 week 'phlebotomy's' where they drew 1.5 pints of blood and did not replace it.  This lowered my iron levels.
I was told I would never have children.  My 27 year old son is healthy.
My female issues were over the top bad, won't go into detail now, but, they were waaaaaaaaaay bad.  A hysterectomy at 31 solved that, but I now have issues with hormones. 
My main symptoms have always been fatigue and sleep problems.  The colds, I control pretty much.  Every time I feel like I am getting one, I pop Cold Eeze every hour for about 12 hours, then all day, every 2 hours for a few more days.
I have avoided special diets and special supplements, just like I have avoided the reality of my disorder.  Now, with the help of this site, I intend to eat right and take vitamins and do what I can to feel as good as possible for whatever time God gives me to live.
I am not good at this, and will be hopefully learning, the whole posting thing, etc. so, if anyone tries to reply or whatever, please be patient, I will do my best!!!!
Here's to loving being an old woman with thalasssemia!!!!   I hope every one of you gets to enjoy old age as well.

Hello OldThalGal  and welcome to the site

I happy that you have found the site useful, please read in the section of nutrition and supplements and i am sure it will be very beneficial

Please feel free to discuss whatever you want

manal

Hi OldThalGal,

I hope others really pay attention to your experience. So many doctors routinely prescribe iron when they see low hemoglobin, and even continue this therapy for years, in spite of a lack of improvement in the patient. Honestly, iron should never be taken for more than a month if the anemia has not shown signs of correction. In the past, iron therapy for one month was used to diagnose thal minor, since minors won't show a raised Hb from iron use. Doctors need to recognize that long term iron therapy is dangerous. Iron is a poison, as our thal majors can testify. Too much iron can kill. Today, a hemoglobin electrophoresis would be the test of choice for determining thal minor status, bypassing the iron experiment.

It is essential that you have some blood work done so that your situation can be sorted out. Because you had long term iron therapy, I would highly recommend the panel of tests called iron studies to make sure that your iron levels are within normal range. I realize that the phlebotomy would reduce your iron stores, but without follow up testing, there is no way to know if this was sufficient. I would also recommend a complete blood count (CBC) and a hemoglobin electrophoresis. Your problems are more severe than a typical thal minor, and without these tests, it is impossible to give proper guidance, since it needs to be sorted out whether these problems are related to thal minor, iron load, or something else. The electrophoresis and CBC will give a better understanding of your thal status, and the iron panel will tell you if further iron reduction is needed. A vitamin D test would also be recommended, as deficiency is very common, and adds to the seriousness of many other problems. I feel that all thals, minor to major should have their D level checked, as this can be a source of numerous health issues, including psychological depression. All of these tests can be performed from one blood draw, so make a list of these tests and ask your doctor to have you tested. I will be happy to advise once you have these results. I am not a doctor, but I do have far more experience dealing with thalassemia than most doctors and can most likely give you guidance that the inexperienced doctors cannot give. I seldom feel that it is the doctor's fault. They just don't have experience with thalassemia.

I have been reading your posts, and I am happy to see that you will be trying some supplements. Pay much attention to getting a good supply of antioxidants, both through supplements and diet, as this can help to reverse the damage that iron has caused. Vitamin E can be very important here. Make sure it is natural (D-tocopherol and not Dl-tocopherol). If iron is still an issue in your body, natural chelators like IP6 and green tea extract should be tried before anymore bloodletting. In addition to being natural chelators, they are both powerful antioxidants.

Hi,
 
Welcome on the forum I am really glad that you found this site useful,this site has changed many people's life and their perspective of life taking control of your health and deciding whats right for your body is a good step,i hope you'll find many helpful supplements in  our nutrition,supplements and diet section,folic acid and B vitamins do help with daily fatigue,and Vitamin D plays a huge role too,if your Vitamin D levels are low,you will feel tired more then you should,i am a thal minor too,and i do get tired more easily then other people,but taking vitamin D improved my energy levels significantly.

Hope this helps .

Zaini.

Its no dubious that we've just got an asset added on board. Let alone being a very senior thal member but i guess you could be a gr8 mentor for ladies here as U can give better support to them on gender issues based on your life long experiences than anyone else....welcome welcome welcome

Thank you so much everyone!
I am really enjoying getting to understand what all is available through thalpal and how to operate on such a site.  It is so wonderful, easy to understand and helpful.  I learn something new every time I sign on, and that is so appreciated.
I will be going in for my check up this summer, and plan to schedule my appointment to include the blood tests.  In the meantime, I am going to start on some of the vitamins and modify my diet.  Silly as it sounds, I turn 49 in a couple weeks, and some time back, I made a commitment to myself to make 50 my best birthday ever, not worst!!!!  That means, taking care of myself!!!
It is very exciting to think that after so many years of being resigned to how I felt, there is hope for more energy and good health than I have experienced the last few years.
I'm not always great about signing on everyday, but, if there is anything I can ever do for anyone, I am here.  Just be patient!
Big hugs of thanks, OldThalGal

Hi Old Thal Gal,

I am really glad that you found this site helpful,keep in touch .

Zaini.

Welcome! Glad to meet you! I hope you enjoy the site and continue to find the information useful. Andy is definitely the most experienced person on Thalassemia I've ever had the pleasure of meeting and he's really nice to boot.

Again WELCOME!

Old is GOLD!!!