Pregnant w/ questions, please help!

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Offline PipPio

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Pregnant w/ questions, please help!
« on: January 21, 2015, 12:31:08 AM »
I'll just cut to the chase... I am 32 years old and 28 weeks pregnant and asked for my iron to be checked at my OBGYN's office today because the past month or so have been extremely tired, out breath, and sluggish.  Totally not myself but people kept telling me it's because I have a one-year old and I'm pregnant and that's enough to make me tired.  I'm a former college athlete, body builder, and currently an avid crossfitter (well not as much when I'm pregnant).  I'm also a PE teacher, so fitness is my passion!  I know my body and I knew something was wrong.  I asked for my iron to be tested- the finger prick test, and it came back 8.3.  My usual level is around 10.2-10.4, and it stayed around there with my last pregnancy.  Now I have an appointment to see a Hematologist, but I have a lot of questions!  Some specifically about pregnancy and others about Thal Minor in general.  Any help is so greatly appreciated!  Here are my questions...

1. What should I be prepared for?  Does having a number this low indicate anything about the baby or my health when it comes to delivery? 

2. What kind of treatment is best?

3. How do I find out exactly what form of thalassemia I have?  Should I ask for certain tests?  I have been reading so many posts and the complexity of this disease has surprised me- I was always told "Oh, not big deal, low iron, nothing you can do and it doesn't affect you except you can't give blood" Meanwhile, I've always wondered if it has hindered me when it came to sports performance because no matter how hard I'd train, I seemed to always hit a wall when it came to endurance activities. 

4. My son just turned one and his iron count came back 10.2.  I just assumed he inherited this from me and it wasn't really a big deal.  Well, the dr told me to give him drops and they will recheck but I know supplements won't help and since he was a little dismissive about me telling him my family history with it, I have ignored his suggestion in fear it will actually harm my son.  (BTW, he's in 76th % for weight and eats anything I give him so I know his nutrition is not a factor).  What tests do I need to ask for regarding his Thal minor?

Thank you so much for your help!!!!

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Offline Andy Battaglia

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Re: Pregnant w/ questions, please help!
« Reply #1 on: January 21, 2015, 03:42:04 AM »
Hi PipPio,

Your iron isn't being tested by the blood test, but is measuring your hemoglobin level, which in most people will indicate iron deficiency IDA when low, but in thal minors does not indicate IDA. Thal minors will typically have an anemic Hb level but iron supplements won't help this unless IDA is also coincidentally present. To determine IDA in thal minors, a full iron panel of tests is required. These will include serum ferritin, serum iron and TIBC, total iron binding capacity. Because thal minors are erroneously given iron on a regular basis, it is always recommended that a full iron panel be run on a thal minor before supplementing with iron. So, as far as your son, you are likely right and the iron drops won't help. It is standard practice to give a one month course of iron to see if it helps, but in most thal minors it won't help. If doctors continue to want to try iron with him after one month, ask for an iron panel. His Hb is in range for a thal minor and there may not be much that can be done to raise it. Iron should never be taken long term when not needed. Good nutrition is indeed important.

For yourself, thal minor women most often do experience a drop in Hb during pregnancy, but just above 8 might mean that iron is involved, since the need rises during pregnancy. Iron may help. Folate is extremely important during pregnancy and thal minors need a much higher dose than non-thals during pregnancy. Hopefully, you are already taking folate, but thal minors should take 2-5 mg daily in the form of L-methyfolate while pregnant. I suggest 5. Natural vitamin E is also important in helping to maintain the blood flow between the placenta and uterus, which is sometimes an issue for thal minors. You may be able to have a positive effect on your Hb and reverse the drop with iron and folate. For more information about nutrition in thal minors, see http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774
The low Hb does not mean anything significant in terms of the baby and won't affect the baby.

If your Hb continues to drop below 8, a transfusion in the later weeks may be suggested. If it stays in the range it is now, it is usually recommended that preparations for a transfusion are made in case there is any significant blood loss during delivery (this is just standard practice. There is nothing about thal minor pregnancy that would make it anymore likely for complications to occur. It is simply Hb based and when starting with a low Hb, caution is practiced). This is really the only added concern and it usually ends up being just a precaution.

Testing for thal minor is done through a CBC and a hemoglobin electrophoresis. If you've been diagnosed at some point, you've had those done. The Hb is much lower in the other forms of thal. What is extremely important is that all minors understand that they carry thalassemia. If two minors have children together, there is a 25% chance of having a child with thal major. Minors need to know their status so they can make informed decisions on having children when they're adults.To verify that he is minor, have the CBC and electrophoresis done. He may find as you did, that his physical endurance is limited. This is a function of Hb level. Those with lower than normal Hb levels have less oxygen carrying capacity and many minors will have limits no matter how hard they train. Tennis legend, Pete Sampras is a thal minor and hid the fact during his career. His strategy was to dispatch opponents as quickly as possible so he wouldn't get involved in long drawn out matches. He never revealed his thal status until he retired so no opponent would try to stall matches to tire him out.
Andy

All we are saying is give thals a chance.

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Offline PipPio

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Re: Pregnant w/ questions, please help!
« Reply #2 on: January 21, 2015, 04:14:18 AM »
Andy,

I can't thank you enough for your quick response, sharing your knowledge, and clarifying things for me!  You have helped me to relax a little bit, and that means a lot to a pregnant chick!  I have been taking 5 mg of folic acid/day since very early on in this pregnancy.  My first pregnancy I saw a hematologist, Dr Fred Hong, (I'm in buffalo which is so close to Rochester maybe you've heard of him?) He recommended the higher dosage with my last pregnancy so I just assumed to do the same this time. I will be seeing him again since the latest Hb results were low.  I will make sure to inform and educate myself as much as possible through this site before that appointment so I have a clear understanding of things.

I am so grateful for your response and help, and for this website. Next step is too learn more and be an advocate for myself and family. I came across a heading about cord blood and possible cures... Very intriguing especially if I can help my kids or anyone else. I will also have screening on my husband done, something we didn't think about since he had no history of Thal and I was never aware of what could happen if he even carried the trait. I wish I had a dr that knew more about it, or at least enough to suggest genetic screening when it came time for kids.

Thank you so much! Looks like I'll encourage my Sammy to play like Pete! 

 

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