Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: dahlia on March 16, 2008, 12:36:15 AM

Title: Getting a diagnosis...
Post by: dahlia on March 16, 2008, 12:36:15 AM
Hey everybody,

I'm feeling terribly confused and frustrated.

My doctor (a GP, internist)  told me recently that my bloodwork indicated I had a thalassemia trait.  I took this to mean I had thalassemia minor. 

But everything I have been reading about trait/minor indicated there should be no symptoms. 

The whole reason I had gone to my doctor was because I was experiencing dizziness and lightheadness for about two weeks...that's when she discovered I was anemic.

But now with the results revealing Thalassemia Minor/Trait and everything I am reading saying there should be little to no symptoms, I am confused.  I read here that some people experienced fatigue or endurance issues, but I didn't really see anyone talk about dizziness or lightheadedness.  And I wonder if there is something else wrong in addition to the thalassemia or if the thalassemia could cause this.

I guess what I am starting to wonder is...can a regular doctor diagnose this properly?  Should I have been referred to a hemotologist?  Should I seek one out on my own? 

Thanks for any thoughts or suggestions you might be able to offer.

dahlia
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on March 16, 2008, 01:03:16 AM
Hi Dahlia,

Thalassemia trait and minor are the same thing. I recently posted in a new section of our board, about the basics of thal minor and intermedia (still working on major). As you will see, we do not believe that minors have no symptoms. If you go through the thal minor section of the site, you will see countless stories, similar to yours. Thal minor does not get much respect from doctors but patients know all to well that there are numerous, quality-of-life issues with thal minor.

From my recent post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.0  please read the entire post for more information.

Quote
Thalassemia minor can have many symptoms, even though most articles on the subject will say that minors have nothing more than mild anemia. Unfortunately, this is not true. The effects of minor can be substantial. Many minors have no significant symptoms, but others have many symptoms that greatly affect the quality of their lives. Among the reported symptoms are anemia, tiredness, weakness, numbness in the extremities, hair loss, slow thyroid, low immune systems, feeling cold, lightheaded feeling, and depression. In some cases, enlargement of the spleen and even excess hemolysis (premature destruction of red blood cells) may also be noted.

Most doctors are befuddled about thal minor and give few if any recommendations. Often, doctors mistakenly prescribe iron supplements when they see the low hematocrit level. However, unless iron deficiency coincides with the thal minor, iron will not help and long term usage when not needed can cause problems, including damage to organs. Iron deficiency should be verified through iron studies, which include the serum ferritin test, before iron supplements are ever taken.

Most regular doctors do not have enough experience working with thal patients to already have the necessary knowledge. They can learn and some will take the step of seeking out more information. The doctor for Lisa, who was the founder of this site, came to our site to learn more about thal. There is a wealth of information on the internet if you know how to look for it. Your doctor should make some attempt to understand the implications of thal minor and apply this to you as a whole. I would agree that you should see a hematologist at least once. I assume that you have already had some blood work done. If you can find a thalassemia familiar hematologist, it may be of some benefit to have your results looked at, but don't expect too much. Most doctors are under the impression that minor does not have many symptoms so please inform your doctors that you believe yours are related to thalassemia and that many other minors have similar symptoms. If the patients don't ever educate the doctors, they're going to continue to preach the same old line that there are no symptoms. If enough patients speak up, we may finally see some awareness in the medical profession that thalassemia minor does have symptoms in many carriers.
Title: Re: Getting a diagnosis...
Post by: Sharmin on March 16, 2008, 01:10:58 AM
Andy,

do you think hg F inducers would be beneficial to thal minors?  such as wheat grass or even the Hemaquest drug? 
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on March 16, 2008, 01:37:22 AM
Yes, wheatgrass can have benefits for thal minors. I don't know if the HbF inducing drugs would be offered to minors, but if the Hb level is quite low, it might be a possibility. Minors should take a natural approach and use folic acid, wheatgrass, B vitamins, vitamins E and D and moderate exercise to improve theri circulation.
Title: Re: Getting a diagnosis...
Post by: §ãJ¡Ð ساجد on March 16, 2008, 06:00:24 AM
Hi dahlia,

You can get a lot of information in the threads under our Thal. Minor section of our main page.

In one of the threads we had a discussion about the fact that Thal minors are now being classified in further two categories one is Thal. Minor and the other is Thal. Minima

We've established that there are many Thals. Carriers/Trait who go undetected and they have no effect in quality of life. This kind of Thal. is now being (and should be) referred as Thal. Minima (People with no symptoms) while the Thal. Minors are those who do have the symptoms like fatigue, dizziness, low energy levels and in some cases splenomegaly.
Title: Re: Getting a diagnosis...
Post by: dahlia on March 16, 2008, 11:19:38 PM
Thanks for the feedback, everyone. 

So it seems you think the diagnosis by regular doctor was probably correct. I think I am going to see if there are any hemotologists familiar with thalassemias in the area, simply because I feel my doctor isn't addressing why I went to see her in the first place.

It seems when I get sick, my body takes a drastic turn for the worse.  Over the past several years, I have passed out, experienced EXTREME fatigue where I slept for more than should be normal and this year I had two weeks of lightheadedness and fatigue for over a month coupled with chest pains and shortness of breath. 

It just seems that there must be some way to avoid this if it seems to be happening on a recurrent basis when I get sick.   

People I know get sick for a few days or at most a week, but I seem to be suffering for several weeks.  I'm not sure if this is related to thalassemia, but I feel it is something my doctor should be able to help me with.
Title: Re: Getting a diagnosis...
Post by: dahlia on March 17, 2008, 11:45:49 PM
HELP!

I felt funny starting a new thread about this, but I hope someone reads it in here.

I am absolutely getting a new doctor.

I just had an awful and confusing discussion with my doctor.  What are ferritin levels SUPPOSED to be and how do I know if I should or should not take iron supplements?
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on March 18, 2008, 12:05:50 AM
Normal ferritin for a woman is  20-120 ng/mL

If yours is a borderline low reading, you should see the results of complete iron studies before taking iron supplements. These are what should be tested and what normal levels are.

http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/iron_tests.jsp

Quote
Normal results

Iron level test

Normal serum iron values are as follows:

    * Adult males: 75-175 micrograms/dL

    * Adult females: 65-165 micrograms/dL

    * Children: 50-120 micrograms/dL

    * Newborns: 100-250 micrograms/dL.

TIBC test


Normal TIBC values are as follows:

    * Adult males: 300-400 micrograms/dL

    * Adult females: 300-450 micrograms/dL.

Transferrin test


Normal transferrin values are as follows:

    * Adult males: 200-400 mg/dL

    * Adult females: 200-400 mg/dL

    * Children: 203-360 mg/dL

    * Newborns: 130-275 mg/dL.

Normal transferrin saturation values are between 30-40%.

Ferritin test

Normal ferritin values are as follows:

    * Adult males: 20-300 ng/mL

    * Adult females: 20-120 ng/mL

    * Children (one month): 200-600 ng/mL

    * Children (two to five months): 50-200 ng/mL

    * Children (six months to 15 years): 7-140 ng/mL

    * Newborns: 25-200 ng/mL.

Abnormal results


Iron level test


Serum iron level is increased in thalassemia, hemochromatosis, severe hepatitis, liver disease, lead poisoning, acute leukemia, and kidney disease. It is also increased by multiple blood transfusions and intramuscular iron injections.

Iron levels above 350-500 micrograms/dL are considered toxic; levels over 1000 micrograms/dL indicate severe iron poisoning.

Serum iron level is decreased in iron deficiency anemia, chronic blood loss, chronic diseases (lupus, rheumatoid arthritis), late pregnancy, chronically heavy menstrual periods, and thyroid deficiency.

TIBC test

The TIBC is increased in iron deficiency anemia, polycythemia vera, pregnancy, blood loss, severe hepatitis, and the use of birth control pills.

The TIBC is decreased in malnutrition, severe burns, hemochromatosis, anemia caused by infections and chronic diseases, cirrhosis of the liver, and kidney disease.

Transferrin test


Transferrin is increased in iron deficiency anemia, pregnancy, hormone replacement therapy (HRT), and the use of birth control pills.

Transferrin is decreased in protein deficiency, liver damage, malnutrition, severe burns, kidney disease, chronic infections, and certain genetic disorders.

Ferritin test


Ferritin is increased in liver disease, iron overload from hemochromatosis, certain types of anemia, acute leukemia, Hodgkin's disease, breast cancer, thalassemia, infections, inflammatory diseases, and hemosiderosis. Ferritin levels may be normal or slightly above normal in patients with kidney disease.

Ferritin is decreased in chronic iron deficiency and severe protein depletion.

Thal minors can also be iron deficient. I imagine as often as non thal carriers. If you do prove to be iron deficient, diet is recommended over supplements if your iron is not extremely low. The doctor, will of course, always recommend iron supplements.
Title: Re: Getting a diagnosis...
Post by: dahlia on March 18, 2008, 12:34:59 AM
Thanks so much, Andy.

I'm still confused as ever by my doctor, but you are a lifesaver!!!!!!! :biggrin

As I mentioned earlier, I was thinking of going to a hemo cause I wasn't feeling confident about my doctor's diagnosis or that she was really listening to me about the way I have been feeling lately, especially when I get sick.

Anyway, I did want to give her the benefit of the doubt so I was waiting to talk to her after she sent me a copy of the bloodwork which said I had a thalassemia trait and that I should eat iron-rich food but that there was no need for iron tablets.

So, I still wanted to talk to her because it didn't DEAL with what brought me to the doctor in the first place, didn't tell me much or say anything about my low platelet count.

Strike one:  She didn't tell me about genetic counseling AT. ALL.   Had I not read about it on this site and others, I would have no clue.  She said if I got pregnant, I should discuss with my gynecologist because of high incidences of anemia in pregnant women, but that was it.

Strike two: When I  asked about my symptoms and the problems I have been having when I was sick, she told me I should eat iron rich foods AND take iron supplements (which of course confused me because of what she said on the initial report and what I had read about iron supplements and thal.  So I looked at my ferritin reading and said, " So 19.2 is a low ferrritin level?" and she said, yes, we like to see it in the seventies or eighties. So you should take iron tabs.  Now, if I am reading what you wrote correctly, it seems I shouldn't-

TRFN 300
IRON 128
TIBC 420
Ferritin 19.2

Strike three: When I asked about my low platelets, she said, yeah they shouldn't be that low and it was strange they dropped so much since my last blood test and I should have them checked again.  But that was only because I asked.

I reallly appreciate all of the help.  Right now it seems this site is my best source of information.  I'm very unsettled by that convo, but I am thankful for the information I have gotten here.

-dahlia
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on March 18, 2008, 12:53:30 AM
Hi Dahlia,

Your ferritin is the only reading on the low end. Iron rich foods should be all that is required to raise it. Take some vitamin C with your meals and it will aid in absorption. From what other minors who are iron deficient have said, I think you will be able to tell by the way you feel after a high iron meal if it is helping. I do also think you should be retested to check your platelet count. That test in particular is misread at times in thal minors because of some confusion over which are irregular red cells and which are platelets. I do think a hematologist may be able to better interpret your test results than your family doctor. I don't know if you need to change doctors and feel you shouldn't base it only on this, as most doctors just don't have enough experience with thal minors, as is demonstrated by the lack of mention of genetic counseling.

Anyone who knows they are a thal carrier or even suspects it, needs to be aware that their partner should also be tested. When you talk to parents of majors, you quickly see how much they wish they had known this in advance. Doctors need to be aware of this need and should always explain the risks to their patients and the need for testing of partners before conceiving. It may be up to patients to make doctors aware of this, rather than wait for the coming boom in thal major cases as emigration brings carriers to areas where thal was almost unknown. There has been an explosion of cases in the US in states such as California as Asians have immigrated to the US and married and neither parent is aware of their carrier status. Doctors need to be aware of this as it can prevent many cases of thal major.
Title: Re: Getting a diagnosis...
Post by: dahlia on March 18, 2008, 11:02:24 PM
Thanks again, Andy :biggrin

You've been MOST helpful.  I really appreciate it beyond words.

I started calling around about hemos today and now I have to wait for return calls, lol.

I really couldn't believe that she didn't bring up genetic counseling, and then I was even more shocked when she waffled on her advice and suggested iron tablets.

Is thalassemia considered rare? or is it fairly common?
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on March 18, 2008, 11:58:22 PM
Thalassemia trait is far more common than realized. It is estimated there are at least 40 million carriers in India alone. It is estimated that there are hundreds of millions of thalassemia carriers in the world. It is most common in the malaria zones of the world, as it gives some protection against malaria and during malaria epidemics, it has been thal carriers who were most likely to survive, leading to a higher concentration of carriers in those areas. Although it is also known as Mediterranean anemia, it is also common all through the warmer areas of Asia.

If doctors brought up genetic counseling there would be a lot fewer thal majors born. A worldwide education and awareness effort needs to be initiated. Too bad the  international organization doesn't do it, but I am sure they're very busy arranging deluxe accommodations for the Singapore conference. I guess that leaves it up to us to do the educating.
Title: Re: Getting a diagnosis...
Post by: dahlia on April 05, 2008, 08:42:21 PM
Hey everybody....

I'm just wondering if anybody here has had trouble getting a diagnosis.

I went to the hemotologist today, and he said my gp couldn't "diagnose" thalassemia without an electropheresis (not sure about that spelling, lol) test so he wasn't so sure that was wrong with me.

I thought the MCV was used to diagnose thalassemia (which my gp did say was low)...

but now I am feeling more confused than ever.

Soooo, he's running the test amongst others...
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on April 05, 2008, 09:11:54 PM
Electrophoresis will diagnose thalassemia trait in most people. It breaks the hemoglobins down into the different types and the results will tell you if you carry thal. It is usually done after preliminary tests suggest there may be something. MCV gives an indication but your levels of the different hemoglobins will give you a true diagnosis. Anyone suspecting thalassemia should have an electrophoresis test done.
Title: Re: Getting a diagnosis...
Post by: dahlia on April 05, 2008, 09:58:32 PM
Okay, that makes sense.  It sounds like my first doctor should have referred me to a hemo, rather than just saying, you have thalassemia minor.  I'm glad I went so I will know for sure.

This hemotologist did also say, if I did have it, it would be asymptomatic, so I feel like he isn't going to be able to help me much, which I find upsetting because I really want to avoid 2-month long illnesses and I'm frustrated in that I am still struggling to get my energy levels up to where they used to be.

Thanks for your help, Andy.  You have a wealth of information that's very helpful.

dahlia
Title: Re: Getting a diagnosis...
Post by: Kathy11 on April 05, 2008, 11:51:36 PM
Hello Dahlia.
Welcome to the forum ,
I would suggest your best bet is to work with your general
practioner, Request a full blood tests .then research and print informations and keep a diary of all you sign and symtomps that would assist the gp to dertermine a diagnosis and management of you current health issues.
I n  my case I found that the heamatalogist was  not helpfull.
some of them still is reading the old medical book. ??? ??? ???
good luck and keep us inform we are interesting in knowing and we can be of great moral support to you.
Kathy
Title: Re: Getting a diagnosis...
Post by: dahlia on April 06, 2008, 11:10:43 PM
Hey Kathy,

Thanks for the welcome.

I'm actually working with the hemo right now (I go back on Friday) so we'll see.

I've found the whole process confusing and frustrating.  Mostly I'd just like to feel like myself again, and find a way to avoid these prolonged periods of sickness/exhaustion.

dahlia
Title: Re: Getting a diagnosis...
Post by: Kathy11 on April 06, 2008, 11:35:57 PM
good luck Dahlia.

Dont give up .keep asking for answers, knowledge is power, once you get to know what is happening  with you,  then you can deal with it appropriately.
It's    possible to have peace of mind .to accept what we cannot change and live a reasonably good life.

I would also get assistance  on how to have a good dietary  intake.
I found that changing my diet, improved my health too.
Take care
Kathy



Title: Re: Getting a diagnosis...
Post by: dahlia on April 12, 2008, 06:20:02 PM
Hey...

I got the results of my bloodwork...but my doctor is out with an emergency until next week.

does anyone know how to decipher the electrophoresis results?

thanks,
dahlia
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on April 12, 2008, 06:26:13 PM
Hi Dahlia,

I can probably give you some idea what the results mean. Either post them or send them as a PM.
Title: Re: Getting a diagnosis...
Post by: dahlia on April 12, 2008, 06:33:57 PM
TP 8.1
Albumin 48.7
Alpha 1- 2.9
Alpha 2- 11.2
Beta Globulin 14.2
Gamma Globulin 23.1
A:G ratio (electrophoresis) ).9 (L)

Albumin 3.9
Alpha 1 globulin .2
Aplha 2 globulin .9
beta globulin 1.2
gamma globulin 1. 9 (H)

SPE comment Normal pattern

Immunoglobulin g 1740 (H)
Immunoglobulin a 392
Immunoglobulin m 106

Interpretation M-spike absent

Thanks, Andy for taking a look.  I searched the net, but I really couldn't make any sense of this.
-dahlia

Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on April 12, 2008, 08:13:14 PM
dahlia,

I don't see any results similar to what one would normally see for hemoglobin electrophoresis. This looks like a protein electrophoresis test, with which I am not familiar. The results of a hemoglobin electrophoresis would look like this. These are typical normal results.

    * Hgb A1: 95-98%
    * Hgb A2: 2-3%
    * Hgb F: 0.8-2.0%
    * Hgb S: 0%
    * Hgb C: 0%.
Title: Re: Getting a diagnosis...
Post by: dahlia on April 12, 2008, 08:18:36 PM
Yes, it did say Protein electrophoresis.  I thought maybe these values had to be converted or something, lol.

So, I guess either they didn't include it in my print-out OR they did the wrong test????????

Thanks for your help.  At least I know I am not crazy.

-dahlia

Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on April 12, 2008, 08:25:17 PM
It's possible the doctor is looking for some other factors to explain things.
Title: Re: Getting a diagnosis...
Post by: dahlia on April 12, 2008, 08:31:38 PM
he did run a lot of tests (checking my immune system, and looking for weird viruses) but my gp had said thalassemia minor and this hemotologist said he was going to do electrophoresis to definitely rule that out or confirm it....so I'm a bit confused.  It doesn't help that he isn't around.  I probably shouldn't have looked at the results, because they're just making me nervous trying to figure them out.

Again, thanks for your help.
Title: Re: Getting a diagnosis...
Post by: dahlia on April 15, 2008, 09:44:22 PM
Well, I finally heard back from the office...sort of.

When I picked up the bloodwork he had ordered, those results weren't back yet for some reason.

So his assistant left me a message and said they were in now and that the doctor would be in tomorrow and call me.

So...I may be back with more questions tomorrow. 

Thanks again for the help.
Title: Re: Getting a diagnosis...
Post by: dahlia on April 28, 2008, 11:07:49 PM
Ugh.

Here's an update.  My testing continues. 

I have to get a copy of the electrophoresis so I can compare to things posted online, but the doctor said it indicated I ALMOST have the trait....one of the hemoglobins is low....and the one that should be high is at the highest end of normal, but he is hesitant to call it thal since it fell in the "high normal" range.

Title: Re: Getting a diagnosis...
Post by: Kathy11 on April 29, 2008, 12:25:38 AM
Hello Dahlia.

My point of view are.  the doctors has Medical Manuel and they get their knowledge from it  :mad :mad,

Thal sufferers know their bodies and how is not functioning the way it suppose too.
They live with pain and confussion everyday of their lives .

My reality is that the doctors doesn't know and they are too busy with their books, therefore they cant be bother to explore the validity of our complaints.
I know this is a negative posting still the fact of my experience remain as such.
Dahlia go to another doctor may be he might be human one whom is prepare to listen,
Good luck/
Kathy

Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on April 29, 2008, 01:21:25 AM
Dahlia,

It sounds like the HbA2 is at the high end of normal. Not all thal minors have HbA2 above normal so it could still be beta thal minor. A hematologist may be able to sort it out.
Title: Re: Getting a diagnosis...
Post by: jade on April 30, 2008, 02:10:32 AM
Hi Dahlia

I know only too well what you are talking about.  The problem with the trait is that the doctors are not sure or they simply discard it as unimportant.  But you do not feel well and they say there is nothing wrong.  Do you mind posting your results for the HBA2, MCV and MCH, I would like to know the values to compare.  I have also been having a downfall in energy lately.  I have increased my intake of Bcomplex vitamins and I EAT as soon as I feel the need for it.  I do not wait for my usual time ie breakfast, lunch etc. I am looking for wheatgrass in my island but so far it is unfruitful.  May be you can try wheatgrass also.   What happened to your platelets count, is it within range now?

Take care.
Jade
Title: Re: Getting a diagnosis...
Post by: dahlia on April 30, 2008, 10:36:19 PM
Here are my results:

hemoglobin A 96.4 (L) Norm 97.1-99.1

hemoglobin A2   3.5     Norm 0-3.7

hemoglobin F   0.1        Norm 0-1.9

hgb 10.8-11.5 (with my hemoglobin up to 11.5, I have more energy, BUT I still get out of breath easily, i.e, walking up stairs and hills)

hct 33-36

mcv 62.6

mch 20

mchc 31.9

As I mentioned, the hemotologist said it's like I  *almost* have the trait.  He's checking my bone marrow (I think to rule out internal bleeding) and then will either investigate or reconsider thal/another blood disorder based on the results.
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on May 01, 2008, 12:26:52 AM
I can see why the hematologist said that you "almost"  have thal trait. Your HbA2 is on the high end of normal and this reading is usually high in thal trait. Your Hb is a little low, as is your hematocrit, but again close to normal. Your MCV is definitely in the range one sees with thal trait as is your MCH. The MCHC is just on the low end of normal.

Sometimes it just can't be determined by blood tests alone. Family history is often used as part of the diagnosis and DNA testing will reveal not only if you have thal trait but also if there is some modifier gene that may explain the normal HbA2. I know this is frustrating but if the doctor does a bone marrow aspiration, he will be able to see if there is anything unusual about the bone marrow activity. If there is, further investigation of a blood disorder will be warranted.

There are hundreds of known beta thal mutations and also many other hemoglobin variants like Lepore, HbC and HbE. Not all are easy to diagnose and DNA testing sometimes becomes necessary to get an accurate diagnosis. We have a member in our group who had electrophoresis three times and never tested for anything unusual. Yet his child is a transfusing thal. Upon DNA testing it was discovered that he carries Lepore, which when combined with beta thalassemia trait, can result in thal major, as was the case with the founder of this group. My point is, that some traits are very hard to discover, so be patient as your hematologist tries to narrow it down, and please keep us posted on what is discovered.
Title: Re: Getting a diagnosis...
Post by: dahlia on May 01, 2008, 12:52:41 AM
Thanks for the perspective, Andy.  It's good to hear that he's making sense to you because I feel so confused and I was pretty scared by the bone marrow test.

I guess what I am wondering now is this:  if it is one of those undetectable things....could that still account for the lower hemoglobin when I was sick?  And would that make me out of breath?  I'm an active person, eat well, and am in general healthy shape so it's weird to me (and a bit scary) that I am having this lingering out-of-breath and easily fatigued thing.

One other interesting thing.  My bloodwork also showed a high result for Parvovirus antibodies.  And I discovered this after my GP had thought it was definitely thalassemia, so I googled thalassemia and parvovvirus and found an article stating that the combo of the two can cause an "aplastic crisis" in which the hgb drops suddenly (which is, of course, much more serious for the more serious cases of thal) .... but it sounded a lot llike what happened to me in Jan/Feb when I was constantly tired and when I was getty steady dizzy spells... which started this whole thing.  Have you ever heard of that?

I think the MCV is what most concerns him because he kept saying, why are they so small?  And I was like, well, my hgb came up a bit, isn't that good?  LOL
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on May 01, 2008, 03:20:45 AM
Parvovirus would explain all your symptoms, including the low platelet count. It also causes a drop in red blood cell production in anemias. The bone marrow test is most likely to see what changes the parvovirus has caused in the production of blood cells. Commonly it causes suppression of the bone marrow and changes in the blood cells, and if it is still active in your system, this will be revealed by the bone marrow test. After reading about the variety of manifestations of the parvovirus infection, and what newly discovered cases have added to the understanding of its effects, I won't be surprised if the virus is at the root of everything. Thalassemia trait could possibly be involved but not necessarily. Many thal carriers never realize they are carriers because it can be completely asymptomatic under normal circumstances. Infection with the parvovirus can cause a drop in hemoglobin levels in any anemic case. In cases where a serious infection persists, it may be treated with prednisone and/or intravenous immunoglobulin therapy (IVIG), but this is very costly and has its own side effects, so I believe it is reserved for serious cases. In your case, it may subside on its own. The bone marrow test should tell if any further action is needed. If your red cell production in the bone marrow has returned to normal, you will probably be feeling like you're back to normal within a couple months.
Title: Re: Getting a diagnosis...
Post by: dahlia on May 01, 2008, 10:18:23 PM
Well, the doctor didn't mention the parvovirus...it was just that article that I read after I saw the high result on the blood test and my gp's diagnosis of thalassemia...but the article made it seem to me like it literally toyed with hemoglobin levels.

It's interesting that you think it could account for the low platelet count as well. 

I think I have to find a subtle way to bring this up to the doctor.

As for the bone marrow test, I didn't fully understand it, but he said something along the lines of looking for iron in the marrow...it seemed like he was saying if iron was in the marrow, it would indicate a blood disorder, but if it was not, it was being lost somewhere which would indicate internal bleeding.  At least, that's how I understood what he was saying.
Title: Re: Getting a diagnosis...
Post by: dahlia on May 06, 2008, 03:42:48 PM
Back to the drawing board...

Well, the good news is that my blood marrow test came back normal (so that means no colonoscopy or other test involving a scope, which petrified me)....

So the hemotologist opted to do another hemoglobin electrophoresis, saying I may have some weird variant disorder and that he may have to send me to a special lab for testing, but that it shouldn't affect my life.

Now, here's my question...with any of these variants of thal, could it account for the easily out of breath, fatigued feeling I have had?  Is this a product of the small red blood cells?

I certainly don't want any more tests than are necessary, but I'd just like to know that I shouldn't be concerned about my symptoms.

Any insight would be appreciated.  Thanks. 
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on May 06, 2008, 05:04:27 PM
Hi Dahlia,

There are some hemoglobin variants that are not easily seen through electrophoresis and may require DNA analysis to uncover. And we do see many people who are carriers of thal who get similar symptoms. If the electrophoresis doesn't show any variant, ask the doctor about a DNA test (check your insurance to see if it's covered, also).

With your bone marrow test showing normal, I think it is likely that the parvovirus had aggravated your situation temporarily, as it does cause a suppression of bone marrow activity in those who have any type of anemia. With the virus clearing, your bone marrow activity would return to normal. It does take a few months for your blood to be fully restored after a drop in hematocrit, so hopefully you will find yourself back to "normal" soon. Folic acid may be of help as a daily supplement.
Title: Re: Getting a diagnosis...
Post by: dahlia on May 07, 2008, 02:06:15 AM
Thanks, Andy. 

That makes a lot of sense.

I was also looking through the bone marrow results and while I didn't understand most of it, I did see that the evaluating doctor wrote in:  the preserved red cell mass, coupled with the low MCV, favors thalassemia.

So I guess now I wait for the second electrophoresis result.

Do you have any suggestion as to how many miligrams of folic acid I should take for just starting out and giving it a try?  This is something I could pick up over the counter at a CVS, correct?

thanks.
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on May 07, 2008, 02:22:29 AM
Hi Dahlia. One mg of folic acid daily is a good start. You should be able to find it anywhere. It's one of the most commonly found supplements because all women who are pregnant and even women who might become pregnant in the future are advised to take it.

Title: Re: Getting a diagnosis...
Post by: dahlia on May 14, 2008, 09:42:53 PM
The saga continues...

So, my recheck of the hemoglobin test came back with elevated A2 levels--this time with the reading at 4.5, which the doctor said did indicate thalassemia minor.

He wants me to come back for another hemoglobin electrophoresis to verify.

So, I have started taking the folic acid the meantime....because I felt really bad last week.  So, as recommended, I picked it up and am giving it a shot.

I was looking at "thal numbers" on some sights.  I noticed that my MCV seems to be lower (about 62) than most thal minors.  Could this have something to do with issues this year--or does the mcv measurement tend to vary amongst thal minors?  Anyone know?

hope everyone is well.


dahlia
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on May 14, 2008, 09:55:34 PM
MCV does vary a lot in minors. The range for minor is 6-75. With your MCV that low and HbA2 that high, it does indicate thal minor. The electrophoresis should be able to confirm.
Title: Re: Getting a diagnosis...
Post by: dahlia on June 04, 2008, 09:23:20 PM
I am utterly speechless.

I got a message from my doctor that said my third hemo electrophoresis came back "normal."  He said it shouldn't be that way because it should be coming back positive or negative; it shouldn't be fluctuating...so he wants to see me again.

He said he wasn't concerned but wanted to talk in person.

Has this ever happened before?  Do the tests sometimes come back positive and sometimes negative?

Just when I thought things were figured out....this throws me a curve!
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on June 05, 2008, 04:17:29 AM
If all three tests have been done at the same lab, you might want to try a different lab.  An HPLC test can also be used and because of the variance in the prior tests, HPLC might be able to confirm one or the other.
Title: Re: Getting a diagnosis...
Post by: dahlia on June 27, 2008, 05:19:09 PM
So, I just got my third (or maybe fourth) electrophoresis test results back....

A2: 6.5

A 93.5

The doctor thinks I must have thalassemia...since two of the tests indicated it, and one was borderline...

Here is my question for the group.  Is it NORMAL for the electrophoresis tests to have varying results like that?   Even the two that positively indicated thal minor were DIFFERENT results- A2 of 4.5 on one and 6.5 on another.
Is this something I should be worried about?

Thanks.

-dahlia
Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on June 27, 2008, 05:26:21 PM
Dahlia,

It probably isn't even you. It is most likely the result of a lab technician not familiar with the various types of hemoglobin. HbA2 of 6% definitely indicates thal minor.
Title: Re: Getting a diagnosis...
Post by: Daddy123 on June 28, 2008, 03:23:18 AM
So, I just got my third (or maybe fourth) electrophoresis test results back....

A2: 6.5

A 93.5

The doctor thinks I must have thalassemia...since two of the tests indicated it, and one was borderline...

Here is my question for the group.  Is it NORMAL for the electrophoresis tests to have varying results like that?   Even the two that positively indicated thal minor were DIFFERENT results- A2 of 4.5 on one and 6.5 on another.
Is this something I should be worried about?

Thanks.

-dahlia

Hi Dahlia, it is really puzzling that your  hemoglobin electrophoresis results on HbA2 can fluctuate so much within such a short span. If it is common or prone to fluctuate so much, it certainly is not a very reassuring test for ruling in or out whether a person has thalessemia trait.

I wonder how your doctor would explain to you on why the tests results can vary so much. Are they going to simply write off the findings that they think should not be the case and just take whatever readings that they think should be the case for you ? Or are they going to take the average ??

4 hemoglobin electrophoresis tests in a row ....... The doctors seemed to be not confident in the test itself that they have to keep ordering the same test for you.


Title: Re: Getting a diagnosis...
Post by: Andy Battaglia on June 28, 2008, 04:41:03 AM
Dahlia,

I forgot to ask, but have all your tests been done at the same lab?
Title: Re: Getting a diagnosis...
Post by: dahlia on June 28, 2008, 07:46:21 PM
Daddy123,

The doctor couldn't really explain why they were different--he said they should NOT be different...and I didn't really know how to respond to that.

Andy,

To my knowledge, all of the tests were done at the same lab.  I know that at least two of them were.   

 I did read online last night that if you are iron defiicient along with having thalassemia, it can make your A2 levels appear normal (though I am not sure if that is true!).  When I had the first series of blood tests, my iron was normal, but "low normal" so  I almost wonder if that has something to do with it...

It's just crazy to me that all of the results were different, when they're supposed to always be the same.

-dahlia