Please HELP me!

First off I wanted to say how awesome it is to have a site like this to share with friends and fellow thals
From what I have been reading is seems to be a wonderful careing online community



Like most of you I have had to jump through various hoops with dr's as well
I told them I had thal minor yet when my tests come back they are completely dumbfounded and telling me things I already know prior to the tests. So of course they think its an iron thing then they tell me my red blood cells are smaller but there are more of them and they think its caused by a tumor or some nonsense ( I hear something different from each dr because they seem to be guessing )
If I remember correctly my cortisol was 2 pts above the green as well as prolactin was barley above normal

Personal symptoms include---
Rapid heart rate ..occasional weakness in legs  (seems less frequent in last 2 years)
Short dizzyness spells maybe once every couple days
Cold hands and feet yet I don't tolerate heat well
I can sleep untill I force myself out of bed
Hunger hits me suddenly and makes me feel sick but my sugars are normal(Diabeties runs heavy in my family as well yet my father and mother do not have it)
I am also 24 am 5'8 and only weigh 122 and have for 5 years (not sure if thal minor effects weight)

My dad has thal minor and unfortionatly he smokes also...so he can pretty much become comatose mid converstation



But in reply to those with chest pain- Isn't it true that thal minors bones can develop slightly differently?
One side of my body is slightly bigger then the other..not sure if this is in relation
I am 1° from scholiosis(sp) and when I have chest pain popping my back instantly alleviates the pain
the chest pains sometimes would even go down my arm but popping seems to do the trick

Of course when I was younger I went to a cardiologist due to the rapid heart and all and everything came back normal


Thanks!
Mike R

Hi Moik,
to the site!

Low Hb can keep you low on energy, but you would have to have really low HB that makes your marrow work overdrive to cause bone deformations. (like in Majors)

Diet plays an important role in your physique. Maybe your low Hb is affecting your diet. Try to take a well balanced diet with enough calcium (dairy products) in it.

If you are worried about your bones and have joints pains when you exercise etc then if possible, get your serum Calcium checked.

You didn't mention how low your Hb remains and what are you Serum Ferritin levels that made the doctors prescribe Iron. It is possible that you low Hb is due to low Iron which you can fix by Iron rich diet (Yes, that can happen to Minors.)

Hopefully all your troubles are diet related.

It has been years since ive had bloodwork done and I am not sure of what my hemoglobin and ferritin levels where at the time. I didn't even know the right questions to ask about my test so all I got out of it was "hey your blood isnt normal" which was already known.

Has not been untill recently I am more educated on thal minor.
At first the doctors prescribed iron but when I went to one of the specialist she strongly opted against an iron suppliment due to possible overload.
One thing is for sure there doesn't seem to be a whole lot of medical expertees when it comes to this in at least my part of town

Some days I feel fine others im having to lean on things reguardless of activity (usually if a sleep a little to much). Every 2 days or so I take a mens vitamin suppliment without iron but now I hear only certain vitamins digest well enough to get any kind of benefit. Thats probably a whole other forum thread though.

Hey Mike,

Welcome to the group. Most of the symptoms you mention are things we commonly hear from thal minors, even though most doctors will say minor has no symptoms. I would have to say that from the amount of minors experiencing the same symptoms, that it has everything to do with thalassemia.

My question for all the doctors saying minor has no problems is how can that be true? When one of your hemoglobin genes produces less hemoglobin than normal, why would there be the expectation that you would have no problems? Reduced oxygen flow throughout the body can only cause problems. The severity of thal minor is related to the deletion or mutation of one of the beta hemoglobin genes and varies greatly depending on the extent and location of the mutation or deletion. Some deletions result in no hemoglobin being produced by that gene. Yet, virtually no research has been done regarding the problems of thal minor.

This leaves patients pretty much on their own to deal with their health problems. Because of this, patients need to take charge of their health and realize they don't have much room for bad health habits (smoking, for example increases the oxygen deprivation that thals already experience). While there may be no way to ever be quite "normal" you can follow a healthy diet, avoid junk food, take nutritional supplements and get regular moderate exercise and also rest when needed. Many minors require regular naps, and with the anemia accompanying minor, there isn't much choice.

There is much good advice on this site on how to optimize your health. Natural hemoglobin inducers such as wheatgrass and resveratrol may be of some long term benefit in raising Hb levels. Folic acid and vitamin E may be of some help in producing more red blood cells and maintaining their health.  IP6 may be of some use in controlling diabetes by lowering blood glucose levels. Be proactive and determined to do your best to optimize your health.

Dear Andy and friends,

I have not gone into this site for a few months as I am really buzy with my marriage and migration to Australia.  I am now 11 weeks pregnant.  I am excited but at the same time concern and anxious due to my thallasemic condition (BTM).

My health has improved alot since joining this site with all the important guidance and information. Thanks to all who supported. Just lately some symtoms which I used to had last year appear again especially lethargy and cramps. I had a near black-out and difficulty breathing and cold sweat during my flight back to Malaysia.  This was a really frightening experience I thought I  was going to die. Thank God I recovered as my husband was beside me rubbing my palms and my back to improve my blood circulation and managed to get seats for me lie down and recuperate. What worries me most mow is that I am pregnant.  I had a medical check up for my blood and the doctor said that my iron and hemoglobin is low (hemoglobin count is 97).  He didn't know that I am a B-Thal Minor.  After teling him my experience and condition he refered me to further study my case on thallasemia.  I really hope that the doctors are able to advise me accordingly.  Somehow, I feel that it would be wise of me to consult my friends on this site also.   I am taking ELEVIT a complete multivitamins (with Iron and folic acid) for pregnancy.  The doctor wanted to prescribed IRON supplement to me due to my low iron and hemoglobin count.  I told the doctor what I know of is that it is not advisalble for me to take IRON supplement for my condition.  He agreed. 

I hope that I will go through a smooth pregnancy.  Currently am experiencing tingling and minor cramps on my limbs. I am feeling tired easily afer housework.  My energy level is quite low at times.  I sleep very often.  I am also feeling nauseous throughout the day due to my pregnancy.  I hope to get some advice for my condition now.

Thank you and God bless you all.

Cathy

I wish you a smooth an d healthy pregnancy 

ZAINI.

Dear Zaini

Thank you for your well wishes.  Tomorrow I will be going for ultrasound as the baby is now 12 weeks old.  I am excited and hopefully and prayerfully all goes well.

Take care and God bless.


Cathy