Newbie with a story and in need of some answers

Hi,
I'm new here, and would like to thank you for accepting my registration.
My name is Catalin ( it's a romanian name,  hard to pronounce, so maybe let's stick with Spike?, and i've been diagnosed with thal minor sometime when i was 12, i think. My parents didn't know much about this back then, and it seems like neither did the doctors, because the diagnosis was, quote: "some kind of mild anemia, and icterus". My folks dragged me from doctor to doctor, because i looked pale and my white part of the eye was kind of yellowish. Later i found out it is called JAUNDICE. This, jaundice gave me alot of hell when i was a kid because it trashed my self esteem away. Sometimes, probably depending on what i ate or how much water i drank, and how much sleep i got, but as i found later more or less depending on the food intake and nutrients that could stop the hemolysis, i was more or less yellow.

My parents obviously thought i had some kind of liver disease and thus the never ending tests that were always normal. So, this stopped until i was 25, and because of a huge scare i got i started having some panic attacks. As some of you know, a panic attack usually starts out with heart palpitations so i was rushed to the ER where they did some bloodwork and one of the doctors there sent me to a hematologist. There i was diagnosed with thal minor, have been told to take folic acid (5 mg) 10 to 15 days every month of the fall and winter, they gave me a list of world and national atheletes that are thals to stop my paranoia and sent me on my way home.
No problem, until a few years later ( like 2 years ago, i'm 29 now) i started having some pains in my leg muscles and joints, and was under the suspicion of an autoimune inflamatory disease called spondilytis. Went trough a series of neverending tests, and wrong diagnostic and eventually wa sent again on my way with post traumatic stress disorder. I relaxed a little and the pain have almost gone away, they're only there when i work long hours on the computer or don't get enough exercise and such.
Problem is since then my bilirubin tets are high , and every new doctor i'm seeing , even for a flu, is telling me a different story!. One hematologist said i was intermedia. I got scared and went back to my prevoius hematologist and told him. She ( the president of the romanian institute of hematology) said the other one is a quack and should mind his own business, redid some bloodwork and stated" "your anemia is so mild you can forget about it!" Went back home again!

A few day ago, i had some what i think are gallbladder pains. Thinking i may have some stones in there, i went to see an internist who could refer me for an ultrasound. He did. But before that he said: Oh my God, why are you so pale?  - I have thal minor!, i said, and my bilirubin levels are ometimes high. Even when they were normal, i still had jaundice , i said. He stated: No, are you sure you're not intermedia? Thal minors don't have continuous high bilirubin levels.
What the hell? I can't take it anymore! I don't know what to do! Should i go tto my hematologist again and tell her? She would say it's nothing to worry about again.
Are there thal minors with jaundice since childhood, like me? I it possible that this could evolve to intermedia?
My electrophoresis from when i was diagnosed by my current hematologist looked like this:

Hb A0              94.9 %                         96-99%          -normal
Hb A2              5.1                                <3.5              values     

My boodwork shows  11.2 to 13.3 g/dL hemoglobin levels, depending on how i eat.
MCV is always 65.5 L
MCH is always 20.0 L
MCHC is always 30.6 L
I have always been told that minors don't have any symptoms , thus every new doc i meet send me to get this done again and it comes back like this everytime.
I've always had an enlarged spleen and jaundice. And if it's nothing to worry about why does my hematologist want me to come have check ups every 6 months? Can't i do it once a year like a normal person? I mean is she mitaken with thos values and this is intermedia?
I'm kind of scared and confused, here. If i go for a folow up she'll tell me i va minor, and go home. I hope that's the case.
Is anyone jaundiced like for theyr entire lives?
I read about somethinhg thal minors could develop, called Dominant Thal, wich resembles Intermedia and it scared me to hell...
Thank you, so much!

Hl,
Welcome to the forum. I don't know about others but your story is soo similar to mine we could be twins. Jokes aside your Hb is good. Relax and don't worry. 
Its my theory that thal minors are yellow because they also have hemolysis due to ineffective erythropoeisis. That will result in slightly high bilirubin values. Most however probably haven't been tested. I have over a long period because it never went back to normal after being highly elevated when I had Hepatitis A. My guess is it never had been normal. These values are much less than in thal intermedia or real jaundice and probably don't make any difference.
I've also been wrongly diagnosed with spondylitis.  Luckily my internist laughed that off before I started any medicine.  She said its impossible to diagnose without an MRI (only had xray before)and sure enough MRI was fine. How were you diagnosed/cleared? I do have autoimmune disease though just not spondylitis.  Autoimmunity is not related to thal. Seperate issue.

lalso have panic attacks like you described. My sister ( a doctor) says they are quite common. Especially in women and a beta blocker usually controls them well. My ECGs always come out normal but 24 hour halter test shows irregular heartbeat. Sometimes nurses will tell me I have a slow pulse ( maybe b/c I am hypothyroid) and skipped beats.

Gall bladder issues are quite common also even without thal and easily remedied.

The only thing that concerns me is the enlarged spleen. How do you know about that?
With your excellent Hb for a thal minor I assume its not very large. Maybe its another thing all us thal minors have without knowing?

Wishing you the best.
Zahra

Hi Zahra,

Thanks for the reply. I know about my spleen from back when i was a kid. They did ultrasounds. Since then it has been 13 cm, 14 cm, or even 15, but not much bigger. I think it kind of shrinks depending on my Hb levels. I've found that when my Hb is 13, or higher, the spleen is smaller.
My bilirubin leves have never been more than 3. But how can you reverse the hemolysis? Or can you? Since 2 years ago it has never reversed, and it was normal until then. Can you tell from my bloodwork that i'm not intermedia, i mean, do intermedias never reach 11, or 12 g/dL of hemoglobin without medical care?
As for the spondilitys, i had an MRI and one reumy said i have an imflamation on the right sacral bone but not specific to spondilitys, and another one said it's spondilitys at the debut. So again not knowing who to trust i went to the best in the country( hard but i got there), or one of the best anyway. And she said, well let's do another one because i don't see anything wrong with this one( funny , right). My right lombar zone hurts even now by the way. I did another one, and guess what? The inflamation from my right bone, was gone apparantly, even if it still hurts, and another mild one appeared on the left one. So now it was the other way around.
Went to the reumy and she said it's not specific for spondilytis. I went on my way. This was 2 years ago. All other bloodwork was fine:
sed rate, inflamatory factor. I've heard of people with no symptoms whatsoever that were indeed affected by spondilytis. I mean no symptomes until an mri for another problem, and spondilytis discovered. But that's very rare.

Thank you for your response. My hematologist says that she 's often seen thal minors with enlarged spleens but slightly:13 to 15 cm max. She says a big spleen is form 18-20 cm and above.
 
When i was a kid , because of the jaundice and splenomegalie, everybody said i either have mono or hep A or something.
Anyway, thanks again!

Dear Spike06,

Do you know which one of your parents you have inherited thalassemia minor from?  Does that parent also suffer from such symptoms?  Do other members of your family have these symptoms? (the grandparent that your parent inherited it from ? aunts, uncles or your own siblings?).

You may also want to have your thyroid checked to ensure that your thyroid is not causing some of your symptoms. 

Thalassemia minor can cause fatigue, increased hemolysis and resulting fatigue.  Increased bilirubin can result from the increased hemolysis and ineffective erythropoesis.  Increased red blood cell turnover can cause a build up of sludge or the formation of stones in the gall bladder.    Low hemoglobin can result in a slightly enlarged spleen as well. 

Your hemoglobin is quite good.  My hemoglobin has been 106 - 109 over the last few years and I feel a little more fatigue.  Fortunately, our bodies have adapted to lower hemoglobin levels and they become efficient at these levels - but certainly feelings of fatigue and a sense of being unwell may be experienced. 

Many of these symptoms can be relieved with diet, exercise and supplements.  Regular excise and a diet rich in vegetables, legumes and some lean meats will be helpful to you.  Incorporating strength and yoga type of exercise will also be strengthening and increase your sense of well being.  Many supplements are listed in the nutrition section - however I will give you a brief version here. 

-  a multivitamin without iron (avoid iron supplements unless if you are indeed iron deficient)
-  folic acid
-  wheat grass
-  IP6
-  vitamin C
-  B complex (short duration)
-  zinc/copper
-  vitamin D

These supplements can all help you feel better.  In fact, a vitamin D deficiency in itself may be cause many of the symptoms you describe. 

Thalassemia may be asymptomatic as is the case with my husband - who is a triathlete and has far greater endurance than most non-thalassemic people I know, to being symptomatic.  I haven't considered thalassemia to be a major disease or disorder for myself but I can imagine it leads so fatigue and achiness at times.  In elderly individuals the anemia may become more prominent and transfusions may be required.  This is very rare however. 

I hope this helps alleviate some of your concerns,

Sharmin

Thanks Sharmin, for your reply!

I went to the doc today and she said 11g/dL of Hb is high and excludes intermedia , and also something about my electrophoresis, in medical words i didn't understand, but i think i definetly don't have intermedia. My father has some symptoms. Gallbladder issued and sometimes jaundice but only sometimes. He's the one i inherited from. I'm also a sport addict so i know what you're saying abouyt that!
The only thing that scared me was the continous hemolysis, but my doc said it's common to minors, and the jaundice and the mildly enlarged spleen. As for the anemia, i'm kinda' not that anemic.  The hem said it's only realy realy slightly so i suppose i'm good on that.
I'm still waiting for my blood cell count. The tyroid is checked, because when you are a spondilytis suspect they do all kinds of tests, including that.
Thanks for the reasurences. I've learned to live with the jaundice. As i said before i think the hemolysis slows down at least, when i'm eating and drinking properly.
Also, since the bilirubin is 2.5 to 3, i noticed i get drunk realy realy quick, like form a glass of wine, and i can't do aerobics and stuff like that.
I'm astonished as some doctors are so ignorant, aside from theyr own speciality. One told me that my bilirubin is maybe a liver disease, the jaundice aswell, so i went to my internist and she said look, this is how a liver sick person looks like. It was a totaly different kind of jaundice! And also she explained the difference between conjugated and unconjugated bilirubin and how  usually one is in direct link with hemolysis and the other one with hepatic diseases.

Anyway, thank you! I wish you all the best!

Hi Spike,

You are thal minor. Your electrophoresis would show a much lower percentage of HbA if you were intermedia and you would have a very high HbF level. Thal minors have a higher rate of red blood cell turnover than normal, and as these red cells die, bilirubin is a by-product, causing yellowness and often gallstones or sludge in the gallbladder. Some minors end up having their gallbladder removed when the stones get painful. As you have noted, your diet does make a difference. You would be better advised to take folic acid year round. Some other supplements that may help you produce healthier red blood cells are B Complex, magnesium and natural vitamin E. Watch your diet, avoiding highly processed foods and foods high in fats. And get your vitamin D level checked. It is the single most common deficiency on earth and deficiency exacerbates most of the problems of thal minor. You want a minimum level of 30. If it's low, it takes large doses to correct.

Thank you very much for your reply, Andy!

Besides what you already wrote, is there anyway you can stop or reverse this? I mean i've been living with jaundice my whole life and probably my bilirubin levels have always fluctuated, but it's been almost 3 years now and it just stays at 2.4-3.
I did some bloodwork last week and doc said icterus from thal. I get that, but it will always stay like this? Has anybody had any similar experiences?

Thanks , so much!

P.S: I've been reading some of my posts, and i have to apologize for my english, i tend to type very fast, and sometimes "misspelle" and such. Sorry!