Looking for the right answer!

I am 40 years old and was diagnosed with Thal Minor at age 4.  I received iron shots for 3 years and after they never helped me feel any better my parents took me to a hospital where they diagnosed me and told them that iron would not help at all.  Well, as like everyone else - I am very tired (all the time), my hair is falling out more than usual, I bruise very easily, I get headaches and just feel like crap all the time.  I recently had bloodwork done again ordered by my PCP.  My hemaglobin level is 10 (as usual) and my ferritin level is 9 - he wants me to have IV Iron, I keep telling him iron won't help, but he doesn't understand and said that my iron is way too low.  I am thinking about seeing a hematologist.  My father has Thal Minor as well as my daughter.  Has anyone been to a hematologist for diagnoses and a plan of therapy for TM?  Thanks to all!

Hi Tammy,

There is a group of tests called iron studies that could determine whether or not you are actually iron deficient. There is no doctor on earth that can determine iron deficiency solely from your hematocrit or hemoglobin level. At best, that is a guess. If you have not had the iron studies done, please request that before you take any iron, which can be toxic when it builds up in the body.

Until recently, no one wanted to admit that thal minors do have health issues. This changed with the publication of a study in 2008 that showed that minors do indeed exhibit symptoms. The study also called for further research into thal minor and its effect on health.
http://www.thalassemiapatientsandfriends.com/index.php?topic=2769.msg26748#msg26748
We already knew all this because we have heard hundreds of minors give similar reports for years. I would also suggest you read through some of the posts about diet and nutrition to learn about some of the things you can do to improve your health. For older thal minors, I highly recommend supplementing with B complex, vitamins C, D and E and L-carnitine. If possible, have your vitamin D level checked. Doctors are finding deficiencies in many people and are frankly shocked at how many people are deficient in vitamin D and how low their levels are.

Please do not take iron without confirmation of iron deficiency through iron studies.

Hi Andy,

Thank you so much for your kind message.  I am making an appt with a hematologist/oncologist soon so I can see if he can share with my PCP that I don't need iron.  I also am going to see if I can have my Vitamin D levels checked.  I currently take a multi-vitamin, B12, & a Calcium supplement.  Do you think B12 is sufficient or should I take B-Complex vitamin?

Thanks!
Tammy

Hi Tammy,

I would suggest getting a good B complex and I forgot to mention folic acid, which can be taken in a dose of 1-5 mg daily. These all help build red blood cells and the B vitamins can help with energy levels. If you take calcium, make sure you also take magnesium, as they should be taken in no less than a 2:1 ratio of calcium to magnesium. Magnesium is also important for the health of red blood cells.

Many doctors mistakenly think that iron can help with the anemia caused by thalassemia minor, but it cannot. However, if iron deficient anemia co-exists, iron will help that. This is why iron studies are necessary. High iron levels contribute to many diseases, including cancer, so it is not wise to load up on iron when not needed.

Do you think B12 is sufficient or should I take B-Complex vitamin?

One word about vitamin B12.
Have you been tested for vitamin B12 deficiency?
If you have vitamin B12 deficiency you should get shots or at least sublingual tablets.
So, it is possible that you still take too low dose of vitamin B12 - of course only if you are deficient.

I know, it is hard to deal with doctors, to get a good diagnosis and good treatment, it took me 9 years to get mine (and the treatment procedure was completely my idea, no doctor could think sth out). But the most important thing is not to get intimidated. You should ask for iron studies and if asking doesn't help, call another doctor for consult or change the doctor. You know, doctors treat patient as just another case, why wouldn't patients treat doctor as just another doctor?
It sounds rather bitter, doesn't it? But I lost my patience with doctors long time ago, when I couldn't explain to them the simplest things ever...
Things that they should understand not only as doctors, but also as people who can think logically.
Example: My diagnosis of thal minor lasted for about a year - I asked many doctors if I have it - none of them wanted to do hemoglobin elctrophoresis. Then I found these formulas (among others):
http://www.cariboo.bc.ca/schs/medtech/rice/thalassemia.html
and they clearly showed that I have thalassemia minor - to no effect. Doctors still did not want to order hemoglobin elctrophoresis. So, how can you argue with "we will not do elctrophoresis anyway, and you should not use internet to diagnose yourself, we have medical experience, you don't and so on..."?
I had to pay for it with my own money, and then they just couldn't believe that I have thal minor, what again showed how undereducated (well, that's how you have to describe it) they are.
My opinion is that either medical studies should be even tougher or doctors should start listen to the patients and at least check if they are not right in a particular matter. Probably a devastating thought for doctors...

Anyway, I wish you the best of luck in fighting your battle. I hope I am leaving you in a fighting mood.
We will prevail!

B.

Bigg has brought up some very important points and I want to mention something that is a direct result of the experience Bigg and most thal minors have had. When you tell a doctor that you think your health issues are related to thal minor and the doctor ignores this, which has been done more than 99% of the time, you can be certain that what you have said is never shared with any other doctors. So, we have a situation where literally thousands of doctors have been told by their patients that they suspect thal minor to be the root of their health problems, yet this information is never shared or compiled, so there is no reference for any doctor, no matter how well meaning, to check and compare to your case. This is why minors have to be vocal about their concerns. It took until 2008 to even get the first study of thal minors done. Unless minors speak up, nothing will ever change and minors will continue to be dismissed as hypochodriacs by their doctors.

Wow..... m too late to say but anywayz .... tammysjourney2009 ... hope that you're finding your answers and feeling as good to be here with us as much we r feeling good to have you with us ...

Best Regards
Umair