Epiphany At 50.

I am 50 years old and an RN.   I have known about my (beta thalassemia minor) diagnosis since I was 16  years old.  My (GP) general practioner at the time, was a very savy physician and diagnosed me.  I remember him telling me "Don't let any doctor prescribe iron for you".  For as long as I can remember, I have always fatigued easier than most.  I suffer from horrible, dibilitating migraines. If there is an infectious disease going around ( flu, common cold, bronchitis), I am the one who always gets it, has the most severe form of it and takes the most time to recover from it.  I have had bouts of terrible depression and mood swings.  I didn't consider becoming a doctor, myself, because I knew I could never tolerate the rigors of the internship and residency programs.  I have bouts of horrible right upper quadrant pains, terrible gastrointestinal problems, a gluten intolerance and now I am having cardiac problems (which I think might be due to iron overload). 

The medical community has continuously dismissed and/or ignored my diagnosis of thalassemia minor and, quite frankly, they are in total ignorance of what it is, how to treat it,  or how/if it relates to any of my conditions.  Now, with the advent of the internet and the ability to read other people's stories, who are so similar to mine, I realize, I am not crazy, or a hypochondriac.  It is the medical community that has failed me and all of us.  I am now in search of a physician who can treat me appropriately and thank the universe, the internet and my fellow thalassemia minor (bloggers) for my enlightenment.  We must join together and demand more research into this form of the disease, so we can be treated appropriately.
pjbrn pjbrn
46-50, F
6 Responses Jun 14, 2012

I am 34 old male, have thal minor, have upper GI pains for the last 4 years, gluten & lactose intolerance, get fatigue so easily, need longer sleeps, have lad low vit D levels, moody, susceptible to cold/flu etc ...out of all these GI symptoms have been the most annoying so have been consulting doctors/specialist/dietitians for past few years without any breakthrough results. all i have from all this exercise & wasted money that i have IBS, fair enough but none of them could tell me why I got IBS all of a sudden. I am not celiac, dont have chrons or IBD etc etc...reading all these experiences it seems much likely that this blood condition has a major part to play in digestion (or lack of it) not to mention other challenges like fatigue, anemia etc

I already tale plenty of supps incl. vit D but will start B12 and c if it gives me any relief, fingers crossed

Hi , I have just joined this site because I have the same problems all my life.. I have thal minor, I am 28yrs old, a nursing student and a mother. All I want to do is sleep... I have problems every day and I run daily, which I have problems with that too, I sleep 12 hours a night and I take more vitamins than anyone o know just to try to ease each day. The b vitamins have helped me tremendously and I have just been told that niacin especially will help oxygen delivery within our bodies. I am learning more and more every day. Iron will help us but we can't take the same as everyone else because it will cause damage to our bodies... ferrous fumarate is better for us. I have also grew up with all types of headaches on a daily basis .I want to learn as much as possible from others like me because most doctors disregard every symptom that comes with this until I tell them what I have. I also learned that the upper gi pain some have are from problems digesting food due to thal. Anything heavy can be avoided. For example, I had to stop eating red meat because I literally vomited it whole 3 days later. Pork gave me excruciating pains for hours, thw type that I couldn't get up. If we can all pay attention to these small things, we can help eachother to live more comfortably. I hope I helped :)

I also have minor. When I was pregnant with my son my hemoglobin was at a 4. That is insanely low. They almost did a transfussion. Luckily we both came out healthy. I suffer from many symptoms including fatigue, dizziness/fainting and nausea, also seem to have expereinced some nervous system problems (shaking fingers) also tingling/numb feet and hands and vertigo). The ONLY way I have found to counter the symptoms is this:
1. DAILY Large doses of B-12 vitamin (usually 1000/day or more- you can't OD on it)
2. DAILY Folic Acid (about 600 or more a day)
3. Take a D 3 vitamin as well
4. Stay hydrated
After taking these for just one day, I felt SO MUCH BETTER. I really think this is the only way I know to treat the symptoms caused by low red blood cell count and feel like a normally healthy person with energy. I also exercize daily which helps with circulation. Of course this is difficult and dangerous if you are fatigued so make sure your B-12 and Folic Acid has kicked in first and that new red blood cells have been made to give you more strength before pushing yourself. Hope this helps! And once you start feeling better don't stop taking them or the symptoms will return so keep up with it.

I feel your pain. I have the same, the minor. My rheumatologist told me not to take iron but I read all over that it is not a big deal to have minor type. I am always cold, tired, irritated, and never get to have a goodnight sleep. I just bought iron pills since I am loosing lots of hair and iron deficiency seems to be the reason. I totally agree, we should join and demand more research. We need answers.

As a doctor myself (md phd from a us school) with beta thal, I agree that beta thal is completely ignored. Every hematologist I have talked to shrugs off any experiences I have had. They say I am totally normal. But I know I am not. I hope the internet can help is gain collective experience better than the current scientific world has come up with.

I too have thalassemia minor and pretty much feel like hell all the time. I have been on many forums wherein people have the same complaints. I am also sick of doctors telling me this is symptom-less...