Beta Thal. Minor and iron supplementation in pregnancy

Hi All:

I was diagnosed with Beta Thalassemia Minor as a child and have been pretty symptom-free with the exception of low hematocrit/hemoglobin since then.  I'm 10 weeks into my first pregnancy (no risk of genetic issues with fetus as we used an egg donor who tested negative for the trait) and am a bit confused.

My 8 week bloodwork just came back and as expected, my hematocrit was 29.  In an effort to keep it from getting lower throughout the pregnancy, the OB has recommended 325mg of Iron once daily for me.  She told me that in a normal iron-deficient pregnancy, she'd have someone taking 3 or 4 times that amount (325mg 3 or 4 times daily).

I'm a bit concerned because I've always been told that I can't have any supplemental iron and certainly nothing over 9mg/day. Has anyone else been told to take extra iron? Does this seem like a proper dose? Most of the iron supplements I'm finding online contain far less than that and it seems weird to take so much! I plan to speak to the pharmacist today about the dosing because I understand the difference between the tablet dose (325mg) and the amount of elemental iron (65mg) But want to be sure I'm getting what she's recommending.  She wants me to have between at least 60mg of elemental iron daily.  I also plan to speak with her Tuesday at my next appointment and know I won't kill myself with iron overload between now and then, but it still concerns me.

Any ideas?

Debbi

The first thing you should do is get a serum ferritin test to see what your iron status actually is. Low hematocrit and low iron don't necessarily go together. Second, please do not take such a high dose of iron. I have never heard more than 30 mg per day recommended, even during pregnancy. Iron deficiency is common during pregnancy so it is possible but a dose that high can easily cause intestinal troubles and even possibly iron overload if taken over a period of time. Please get another opinion beofre taking such a high dosage of iron.

Thanks so much for your reply, Andy:

I've got an appointment Tuesday and plan to ask the OB to have a hematologist go over the results and make a recommendation before going any further.  i suspect that there will be some iron in my future but I'll feel better knowing that someone who's familiar with the Thal trait is making the recommendation.

I've read Lisa's story on the site as well as yours and i admire you so much for carrying on her memory.  I'm sure your angel, Lisa, is so very proud of you and smiles upon you with a loving heart every day.

Debbi

Thanks Debbi. Anyone who knew Lisa understood what a special person she was and my wife and I miss her greatly.

I am a bit dismayed when I hear a doctor recommending megadoses of iron. They always tell us not to take megadoses of any nutrients and iron can be a dangerous thing in high doses. The body has no way to dispose of excess iron and it just builds up in the body. As I said, I have not heard of more than 30 mg of iron being prescribed and that high amount is usually only prescribed during pregnancy. Even when I was suffering from severe anemia with a hematocrit of only 25 (40-45 being normal for a male), after losing a large quantity of blood after surgery, the doctor only prescribed 18 mg of iron daily for me. Even that amount was impossible for my stomach to tolerate. I eventually got back to normal by using a high iron diet, which is not easy to accomplish as a vegetarian, but it did work and a few years later, my iron levels remain good.

Many doctors do not understand that the low hematocrit found in thal minors is usually not iron related and automatically prescribe iron. In your case, a supplement may be necessary but overdosing is not the way to go.

Dear Ellastay

Welcome to the site and i am sure you will enjoy it. Congratulations for the coming baby.

I am also a thal minor and i have two children.  In both pregnancies,  i was taking multivitamin enriched with iron ( at that time i did not know  any thing about thal  and didn't know that i was a minor either ). Nothing happened to me and i didn't suffer from any thing till now. On the contrary now, i have iron deficiency. Same happened to my sister and she is doing fine. 

I am only telling you my expierence,but you should refer to your doctor.

hope you you find the right thing to do
Take care
Manal

Hi Manal,

How much iron was in the supplement you took? Are you taking iron now too?

Hi Andy

Hope you are doing well .

Actually the iron in the multivitamin was 66.7 mg and i took a pill every day ( from your previous replay to Debbie, i guess you will say that this sounds crazy but believe me this happened and in my two pregnancies i was more than healthy, i guess that how i felt.  So energitic and i don't fell tired at all )

As of now, i just knew about the deficiency 10 days ago, but i think i will have the same pills as before. Now my HB is 9.5. When i was pregnant it was 11.3
When i made the iron deficiency test, i made it as a check up.  I guess my body adapted to low iron as i think i am quiet normal. Only my heart beats a little faster , but not always.  By the way my iron level is 39 and the normal is between 60 and 160.

Andy, since we are only carriers of the gene ( i.e. we don't have the disease but pass it to our children ), why should we be considered about iron intake?

Manal

Hi,

There are two reasons why minors should not take iron unless they know for sure they are iron deficient.
The first applies to everyone, thal or non thal. Iron builds in the body and there is no mechanism for the body to naturally remove it. If iron is taken and it isn't needed it starts to accumulate. Long term use of iron can lead to iron overload and as any major will tell you, iron is a poison to the body at high levels. It should never be taken unless it is needed.

The second reason applies more to non transfused intermedias, but can also affect minors if their Hb gets low. When the Hb is low, the bone marrow begins to try to make up for it by over producing red blood cells. To accomodate the amount of iron needed for new red cells, instead of using what is stored in the organs and tissue, the body will absorb more iron from food in the gut. This added absorption can be at a rate as high as 100 times normal. Some intermedias need iron chelation even though they have never transfused and that is entirely due to iron absorbed from the diet. This problem is not as common in minors but it does become more evident if the Hb is low for long periods.

I mentioned this topic to my wife and she told me that with her first pregnancy they prescribed up to 30 mg of iron daily but with the following pregnancies she was told that newer understanding of the dangers of too much iron had changed the recommendation to no more than 18 mg per day. She also told me that dandelion herb helps with iron deficiency.

Thank you all very much for your responses. 

I have an appointment Tuesday morning with the OB and plan to tell her that I haven't started taking any supplemental iron and won't do so until she can verify that a deficiency exists.  I'm pretty sure at this point that all she's going by is my hematocrit numbers to make this recommendation to me.  This isn't enough, as we all know.  I'll also ask that a hematologist familiar with Thal. look at the bloodwork and/or draw new blood and make recommendations.

I'll check in again after the appointment and update you all.  Have a fabulous weekend.  Thanks again!

Debbi

Thanks Andy. It is now very clear.  I appriciate the advice of your wife and send her my regards.

Debbi... wish you good luck

take care
Manal

Hi Everyone:

So sometime between her call to me and today's appointment, the Dr. did some homework.  I didn't have to mention a thing and here's what she said (my editorializing in blue):

* I'd like to do a ferritin test on you and then determine if you should be taking iron. 
* Overload is very rare, but I understand your concern about it. 
* Also, we'll be checking your hemoglobin, hematocrit and ferritin levels at each appointment and adjust iron if necessary. 
* If we do put you on iron, it will be the minimum recommended dose (50 mg of elemental iron/day). 
* Also, we'll be doing an ultrasound at each visit to check fetal growth due to your normal hemotcrit levels." (I'd read a study released and published in 2004 by the American College of Obstetrics and Gynecologists that recommended this for beta Thal Minor patients due to IUGR, but again, hadn't had the opportunity to mention this to her)

So I didn't see the need and didn't ask to have a hemotologist brought in.  she's clearly been reading or consulting with someone or something that knows about Thal and I feel better at this point.  They drew blood for serum ferritin test today and I'll know in a few days what the iron level looks like.

Thanks again everyone!

Debbi

That's great news Debbi!  It makes it so much easier when you feel confident in your treating health professional.

While researching about tea preventing iron absorption, I came across this site from the Iron Disorders Institute. For those with questions about the dangers of excess iron please look at this page.

http://www.irondisorders.org/Disorders/about.asp

iron can be so deadly that 250 milligrams can poison a small child. Then, there are people who have genetic conditions that cause them to absorb too much iron. They can develop iron overload disease and become very ill...For those with normal iron metabolism, unabsorbed iron, about 90% of iron ingested through diet, is taken up by specific cells in the intestinal tract, called enterocytes. These cells become engorged with iron, die, drop off, and are excreted in feces. For a time, however, as the excess iron makes its way through the colon, harmful pathogen such as a cancer cell or bacteria have an increased opportunity to be nourished by this abundant source of iron. Therefore, unless a person is actually iron deficient-which is determined by certain tests, he or she should not take iron supplements.

Debbi, it is so good to see that your doctor has done the research and knows that an actual iron deficiency should be demonstrated before supplementation.

Anaemia and iron intake
Pregnancy increases the need for iron in the diet. The developing foetus draws enough iron from the mother to last it through the first five or six months after birth so a woman has an increased need for iron during pregnancy.

Iron losses are reduced during pregnancy because women are no longer menstruating and so are able to absorb more iron from the gut during pregnancy. It is useful to include foods that are good sources of iron in the diet every day (for example red meat) and to have foods that are good sources of vitamin C (like oranges) to help absorb the iron.

Recommended daily iron intake
The recommended daily intake (RDI) of iron during pregnancy is 22-36mg (10-20mg more than that for non-pregnant women). The amount needed depends on the amount of iron the mother has ‘stored’ in her body prior to pregnancy. If a woman’s iron stores are very low, she may need to get more from supplements. However, iron supplements can cause constipation.

Healthy foods for pregnant women
It is important to choose a wide variety of foods to ensure the nutritional needs of both mother and baby are met. Try to eat:

    * Lots of fruit and vegetables, wholegrain breads and cereals
    * Moderate amounts of low fat dairy foods and lean meats
    * Small amounts of foods high in fat, sugar and salt
    * Lean meat, chicken and fish
    * Dried beans and lentils
    * Nuts and seeds
    * Low fat milk, cheese and yoghurt
    * Green leafy vegetables.

I don't think taking iron supplements is the way to go during your pregnancy. I would personally eat more iron riched foods. But please see your doctor for professional advise.

Miaki

HI Debbi
1. eat well
2.eat fresh food (meat,checken,fish not too much)
3.fresh fruit every day
4.water 2 leter every day
5.wide clothes
6.sleep well
that is't.
           am not a doctor but am afather for 5 child  and i used to take care for my wife when she prgnane so you relax and keep your huspend work at home 
                                    khalifa