Thalassemia possibly causing trouble

Hello all, first time poster here. A little bit of history, I was diagnosed with beta thal minor when I was 26 and pregnant with my 2nd pregnancy. I was told in my first pregnancy that I was slightly anemic and needed to take an iron supplement. When that pregnancy ended in miscarriage, I kept taking the iron since I knew we were going to try again. When I had my routine bloodwork done with my second pregnancy they said again that I was slightly anemic and needed to start iron. I pointed out that I had been taking iron for nearly a year, this wasn't making any sense. They sent me to a hematologist who said I had beta thal, no big deal, it wouldn't affect me or any pregnancy.

It wasn't the first I had heard of thal, my mom had also been told that she had it and would be fine. I can say my pregnancies weren't awful but I was always high risk because I developed high blood pressure and gestational diabetes with all of them. And I was so weak after my last baby was born I couldn't hardly lift my arms but that passed after I had rested.

Over the course of the last 8 years I have been repeatedly told that I am anemic or borderline and always have to remind the doctor or nurse that I have thalassemia (don't they have it written down somewhere??). My hgb is usually around 11 but last January it came back as a 9. My doctor's office was frantic wondering what I normally do when that happens. I said nothing, it had never come up before. I spoke with my doctor and she asked how I was feeling. At the time I felt normal, which is tired but come on, I'm always tired and I've known for years it was specifically linked to the thalassemia. Nothing was done or recommended but over the next few months I started feeling worse. Lightheaded, weak at times, always around my period.

I finally bottomed-out in July, I could scarcely move. I was having tingling sensations in my hands, lips, and feet, my chest hurt, I could barely hold my eyes open. My husband is a pharmacist and thought I was having a heart attack so he rushed me to the ER. All kinds of tests, no heart attack but the ER doc was confused why they were running tests for that when my hgb was 7. They gave me a transfusion and the doctor said perhaps the thal was causing my period to be too overtaxing. I saw a hematologist the next day, my iron was around 6 and she told me to start taking a supplement. The hematologist didn't try to link anything to the thalassemia, just focused on getting my iron up.

I started feeling better, more energy, I was getting back into the swing of things when my next period came and this time brought vertigo so bad that I was stuck in bed for an entire day. It was a full week before I started feeling normal.

Since August though, I was back to my normal life, everything was running smoothly until my period in December. I was so weak I could barely walk and the light headed feeling was constant. This was 2 weeks ago and I'm still not 100% back to normal. No trip to the ER this time and I actually was due for routine bloodwork, I thought for certain my hgb would be low but it was 11! I talked to my doctor's office, the crn said that my vit D was low and I should take a supplement. I said I AM taking one. She said increase it to 2. She said if my period was wiping me out then perhaps I should start an iron supplement. I said I AM taking one! She was at a loss and told me to follow up with a hematologist and possibly a gynecologist.

The hematologist is having me get my iron checked which I will do tomorrow but I'm hesitant about going to see a gynecologist. I know what they are going to recommend and what my options are. I also tried to bring up the beta thal to the hematologist but it was quickly dismissed, again just focussing on that iron level.

Sorry this is so long, my question is this: I'm 39 years old, is it possible that thalassemia is truly causing all this? Am I starting menopause and these symptoms are specific to a beta thal?

Welcome to our group, seriousmary,

Well, you have several issues here that all need to be addressed. They are all independent of each other but have a cumulative effect. Thal minor causes low Hb in many minors, and yours is typically below normal at 11. It seems your periods are also causing iron deficiency, which in no way is related to thalassemia and should always be treated as a temporary condition, without resorting to long term supplementation. And then there's the low vitamin D, which can give you many of the same symptoms as the anemias caused by thal and iron deficiency, IDA.

First, your doctors will never know what to tell you about thal minor. The textbooks tell them it is asymptomatic, but anyone who is anemic already will have some symptoms. Same thing with IDA. And in recent years, we are finally learning how important vitamin D is and how much it effects so many other vitamins and minerals, and that many previously undiagnosed issues are the result of low D. Tiredness, fatigue, lack of endurance, numbness and tingling in the extremities, and low immune system are commonly reported by thal minors, but with IDA and low D as well.

Thalassemia causes depletion of many vitamins and minerals. This affects all forms of thal and we recommend that thal minors do supplement. Normally, iron is not recommended, and I will address that in the IDA discussion. We have a board on Diet, Nutrition and Supplements, and specifically, there is a post of recommendations for thal minors at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774
Please review the recommendations. In your case, I would really stress L-methyfolate, natural vitamin E and high doses of vitamin D.

It is very tricky treating IDA in thals. Doctors generally want to see more improvement in Hb than is possible, leading to too much iron supplementation. Thal minors should never be given iron without being monitored through a full iron panel of tests that includes serum ferritin, serum iron and total iron binding capacity, TIBC. It takes a combination of values to determine deficiency. In your case, it does sound as though your periods are leading to IDA, so iron is appropriate, but the results should be monitored. If iron does not seem to be working, a different form of iron may be needed. Once the IDA is corrected and verified through testing, iron should not be taken.

Correcting vitamin D cannot be done with low doses. The level will barely budge. Speaking from my own experience, I feel that doses of at least 5000 IU D daily are necessary. I am currently taking 10,000 IU daily during winter months. I take 5000 when I can get sunshine. My level is above the minimal level of 30, but not even to 40. Optimal is at least 50. Many doctors give patients a weekly dose of 50,000 IU. I cannot stress enough how important D is to your well being. Most bodily functions are affected by D, and tiredness, depression and a low immune system are all related to deficiency.

Miscarriage. I hear that from so many thal minors. There are processes involved in thal thal lead to what is called a hypercoagulable state, where clotting becomes a serious issue. This is not usually much of an issue with minors, until they become pregnant. What typically happens is a clotting problem arises between the uterus and the placenta, reducing the blood flow and leading to miscarriage. I recommend that all pregnant minors take 400-800 IU natural vitamin E during pregnancy, as this will help to prevent this clotting problem. High doses of L-methylfolate are also recommended during pregnancy. 2-10 mg daily.

Thank you for responding Andy, I appreciate all the information I can get! I admit, I was hoping to be able to pin everything to the thal, but it looks like that isn't the case. Which is fine, I just need to be patient and try to resolve one issue at a time.

I just had blood taken to check my iron levels this morning, hopefully that can shed more light on things. The hematologist had said I needed to increase my iron to 3x a day but I am waiting to get these results back before taking more.

I will increase my D, I'll talk to my husband about getting some with a higher dose, hopefully that will help with some issues.

Thank you again!