Thalassemia or Anemia?

Hello everyone!
I am a 30 year old woman based in the UK. I have struggled for years with chronic anemia and have taken iron supplements on and off as directed by my Dr. I have been taken an Iron supplement for 6 months and my Hg and ferritn levels have actually fallen in that time rather then improved. I went to my Doctor the other day and was given the results of a full blood test. I was not given a copy to take away so I cannot give exact values but what I can remember is that my hemoglobin was low at around 10, my ferritin levels were undetectable, my MCH was at 23 I think when it should be at 27 and the doctor also said that my red blood cells were fewer and smaller than they should be. He then suggested I could have the Thalassemia trait as my blood profile would concur with a diagnosis of Thalassemia. He said that there was nothing that could be done for this apart from upping my doesage of Iron and have me come in for blood tests every 12 weeks from now on to keep and eye on things.  He said the only problem with Thalassemia was if I had a child with someone else who also carried the gene that the child could be very ill but that the chances of that were small and not to worry.
The doctor who is my GP and not a specialist did mention that this disorder (?) is more common in people of certain ethic backgrounds e.g. mediterranean. I am white celtic / anglo-saxon apart from my paternal grandfather who was Jewish (and of unknown origin). The doctor did not suggest any further tests other than regular blood tests.
Is it possible for a doctor to tell just from a full blood test if a person has Thalassemia or should I request some other form of testing?
I have a long running history of poor health with no real diagosis. In particular I suffer from severe classic migraine, IBS, acne, genral poor imunity and poor powers of recovery, shingles, I have a history of depression, extreme fatigue, low blood pressure, chest pains and palpitations, mental fog/slowness, dizzy spells, numbness and tingling in my hands and lower legs and feet, and nausea. I also gain weight very easily.
I have had a colonoscopy, my heart checked, my thyroid and organ function checked but everything comes back okay apart from my blood counts.  Could all these conditions be related to anemia / thalassemia?

Basically I don't really know what to do or if I really even have thalassemia minor. I guess all I can do is to take the iron and go back for the tests in 12 weeks.

Any advice or thoughts would be greatly appreciated!

Many thanks,
Anne

I just wanted to add that my fatigue is so bad that I have only been able to work part time for the last 4 years while my father who has Lymphoma ( a blood cancer) continues to work full time. I am so tired now that I am nearly falling asleep while I type this ...I need to go for a lie down now!

Note: I am also a Vegetarian and have been for 20 years however I eat a healthy varied diet.

Anne:

I can't give you a lot of detailed information as others here no doubt can, but I do know that in order to diagnose thalassemia minor, a "hemoglobin electrophoresis" test is necessary.  (I just posted a question about this.)

I was told by a doctor once NOT to take iron.  (Though I believe it is possible to be iron-deficient and thalassemic at the same time.)
 
Your hemoglobin is definitely low.  I know that because mine is 9.9 and Andy said so!  Also, I saw my GYN yesterday for my annual well-woman visit, showed him the results of my last CBC (done on 4/11/08), and he told me 9.9 is "significantly low", and advised I should see a hematologist.  He gave me a name of one whom I'm seeing next Friday.  I would suggest you request a copy of your CBC do likewise.

As for your Celtic/Anglo background, let me tell you I am probably one of the whitest people in the world (fair skin, blonde hair, blue eyes) and I have the trait.  As a matter of fact, I've undergone the hemoglobin electrophoresis test on more than one occassion cause doctors don't believe I could actually have this. 

If you do have thal minor, and you get pregnant someday, your partner will definitely have to be tested.  I went to genetic counseling when I was pg., but fortunately, my husband does not carry the trait.  If your partner also carries the trait, there is a one in four chance your baby will have the full-blown version of the disease (thalassemia major), which can be quite devastating.

I'm sure all of the veterans on this site will correct me if I'm wrong about any this (and I welcome that).

My advice to you is to ditch your GP, find a new one, and also see a hematologist.

Peace,
Jules

Hi Anne and welcome,

Although they are not related, thalassemia minor and iron deficiency can coincide. It is likely that you have both but a hemoglobin electrophoresis test should be done to confirm the thal minor state. The doctor has based his diagnosis on the look of your red blood cells and usually that is enough to suspect thalassemia trait. The electrophoresis will confirm if this diagnosis is correct. You mentioned your ferritin level being very low. Have you had complete iron studies done? The readings together are used to confirm iron deficiency. If you are not gaining iron through your medication, you should consider a different form of iron or perhaps concentrate on improving through dietary means ( as I have done myself because iron bloats me so much I cannot take it). There is a thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=230.0;highlight=iron+vegetarian  that gives some tips about raising iron levels in vegetarians. I am sure you will hear people tell you that you need meat to raise your iron but you do not. My story at that thread tells how I reversed a severe iron deficiency by vegetarian diet alone. Keep in mind that taking vitamin C or foods rich in C with your meals will increase iron absorption and tea with meals will inhibit iron absorption. Please also read the introductory thread about thalassemia at http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.0
As Jules mentioned, an Hb of 10 or lower is significantly low. It will lead to many of the symptoms you mentioned, regardless of what any doctors may believe. Our experience with patients in this group shows that most doctors are very unaware of the many implications of thal minor, most of which seem to be tied to the hemoglobin level a patient can maintain.

I am a vegetarian but I do take some key supplements. I am not a thal carrier but some of the same supplements can be of help. I take B complex, vitamins C, D and E daily. I also take wheatgrass extract twice daily. I take them because they do help with energy levels and general health including the immune system. I do recommend taking good quality supplements from natural sources rather than synthetics.

Hello Anne

Welcome to our forum
your posting indicate your fustration that you are currently dealing with and is too familiar to us all.

I empathy with you and would suggest your start with reading    previous postings from various members. so that you can have an insight and maybe assist you in which direction you need to start getting the help you need to make your life manageable.

At 30yrs,  young , you have time on your side, Make your health your priority. Keep asking question, try every suggestion that you think will enhance your health and in returned better your life.
The wise thing to do is not to give up. Dont accept anything unless you are comfortable with the result,
Belive me girl I know what I typing "I'm a walking chemist" ,and I've travelled so far from being the victim of this disorder to a figther and i'm still opening every doors and windows to get answers
You can do it too,
I wish you courage and good luck. you will find a compromise to a better life.
We are here to assist. feel free to ask question.
Kathy

Hello Anne,

Welcome on the forum,And welcome in the thal minor fatigue club  I hope you won't mind my kidding around,but i have been the victim of fatigue,dizziness,haedaches,palpitations,low blood pressure,numbness and what not,for God knows how many years,infact most of thal minors complain about these things,it's a good idea to go to a heamotologist,but plz keep your mind ready to hear that "thalassemia has nothing to do with your poor health"most of the doctors,not all of them,think like that,which is totally wrong,thal minor has everything to do with your quality of life.
So what i've learnt from this site is that start taking your vitamins, folic acid is a must,it will definitely help you, and wheat grass will definitely help improving your health and energy levels,You can order wheat grass super shots from www.drwheatgrass.com ,or wheat grass tablets from www.puregreenfoods.com .

Wishing you the best.

ZAINI.

Hello Everyone, thank you soo much for your responses. Already so many good ideas and advice to be getting started with! I intend to spend some time this weekend just reading through the boards to see what I can learn about Thalasemia and it's treatment. I am also going to request the hemoglobin electrophoresis test from my doctor as I think it is unacceptable to be told that it looks like you have this but it won't really affect you so no point in doing more tests to findout for sure, especially considering that I do intend to have a family someday!

Thank you again everyone!

Anne x

Anne,

If your doctor has said there is no need to confirm thalassemia trait, get a new doctor. Your current doctor is not only unaware, but also guilty of a gross negligence by not taking the time to find out what the implications of thalassemia trait are to a prospective parent. Anyone and everyone who carries thal trait should have their partner tested BEFORE making a decision to conceive a child. A doctor who doesn't understand this and won't make the effort to understand this, should disqualify him/herself from treating carriers. It is highly irresponsible for a doctor to not take the time to understand the implications of a patient's condition or genetic traits. This same situation happened to Canadian Family after the diagnosis of thal trait in one of the parents. Nothing was said about the possibilities and need for testing of the other parent, and as a result, they have a thal major child.

I cannot and will not under emphasize the importance of testing so that it is the parent, and not chance, that makes these crucial, life-changing decisions.