31 weeks pregnant, B-Thal Minor. Please advise! (Long...)

Hi all!
I've spent SO much time since I discovered this website just reading and reading all the posts I can find about Pregnancy and Thal Minor.  It is so interesting, and you all are so knowledgable!!!  I am so glad to have stumbled across this group.

I do have a couple of questions... some of it will probably be repetitive, but it would help me to absorb it better in my mind if some of the information is specific to my particular case.

First, a little about my history...
I've known I was Thal Minor since I was probably 10 or so, but didn't know anything about it until fairly recently.  When I was diagnosed, the doctors just told me it could make me feel fatigued, I would be pale, and not to have kids with anybody else who was a carrier.

In 2008 I had a miscarriage at 12 weeks, cause unknown.  I was admitted to the ER for hemorrhaging, and eventually it was discovered that I had a large clot that was not allowing my cervix to close.  Once they removed the clot (and I think there may have been a couple more large clots removed also... but I'm not 100% about that, because I was kind of out of it...) my cervix closed and I was able to heal naturally without a D&C or any other interventions.

In 2010 I had my son.  My pregnancy with him had some complications: I had severe edema, but was not diagnosed with HELPP or PreEclampsia because I was not spilling protein in my urine. (My mother-in-law is a nurse, and she thinks this could be because I was drinking so much water I was "diluting" my urine so the protein didn't show up.) I was on bedrest for two weeks before he was born, and I was finally induced at 37 weeks due to high blood pressure.  After he was born I hemorrhaged, again because of a large clot holding my cervix open.  I ended up getting two transfusions because of blood loss to bring my hemoglobin levels back up.  (I was aware at the time what exactly my levels were, but I've forgotten since then.)
After I had my son I was able to have a short consultation with a hematologist, and was able to get some more information on Thal Minor, and how it all worked, etc.  He explained to me that Hemoglobin count does not necessarily reflect Iron levels, and that I would need a Ferritin test to check that.  I did get the Ferritin test, and I was low on Iron (again, I can't remember the exact numbers.)  Unfortunately, I was not proactive about my health at this time, and I did not take any Iron supplements, nor have I had my Ferritin levels tested since then. (I did eat an Iron rich diet for awhile, but soon went back to my "normal" diet.)

Now I am pregnant again (31 weeks, as stated above).  Last time my hemoglobin was checked it was low (which was not really a surprise to me, considering I am, after all, Thal Minor.) and my OBGYN wanted to start me on Iron pills.  I mentioned to my doctor that my hemoglobin levels WOULD be low because of Thalassemia, but he kind of blew it off, and still insisted on the Iron supplement.  Because last time my Ferritin levels had been checked I was actually low on Iron, I didn't fight him and went ahead and took the supplements (65mg/day) for a couple of weeks. (but then came to my senses and stopped until I can get my Ferritin levels checked again.)

Then I decided to do some more research, and I found all the great information on this website!!  Aaaand, now I'm kind of freaking out about everything I'm reading having to do with Thal Minors and pregnancy.

I know it would be a lot easier to give me specific advice if I had actual numbers for you, but I have been feeling kind of "out of it" lately, and just not on top of my game, so I didn't think to get those from my doctor.  With my son I wrote down every single time I got my blood pressure taken, I got copies of every single lab that was taken, and I really was proactive and involved.... but lately I've been feeling like my brain doesn't even function properly, which actually is one of my concerns.

Symptoms that I'm concerned about:
-Feeling like I can't think, or make sense out of everything that I'm reading/hearing.  Basically just feeling kind of unfocused and "out of it."
-Not being able to think of common words when I'm speaking
-No energy/feeling exhausted constantly
-Sometimes my heart will feel like it's "pounding" and I'll be out of breath.  Basically, even though I'll be physically inactive, or just moderately active, I'll feel like I just ran up a couple flights of stairs.
-Seeing spots in my vision
-Occasional brief dizziness for no apparent reason
-Feeling "shaky" often (which could also be due to hypoglycemia, but I've had that pretty well under control for awhile now, and have been eating properly, so I don't feel like that is the cause.)
-A constant headache, bordering on a migraine for the last week or so
-Just not feeling "well"
-Yesterday and Today, off and on feeling sick to my stomach like I'm going to throw up. (kind of feels like morning sickness... coming in waves, then going away.  I haven't actually vomited at all, just felt sick.)

So I have a few questions.  

1. Are these symptoms signs that my hemoglobin could have dropped even since last time I had it checked (almost three weeks ago.)?

2. Could my hemorrhaging due to clotting with my previous pregnancies be an indication that I am at risk for this Thrombophilia or Hypercoagulable State that I've been reading about?

3. I have an appointment with my OBGYN on Tuesday... are any of these concerns serious enough that I should do something about it before my appointment, or should I be okay to wait until then?

4. I have a feeling my doctor will blow me off when I do get to my appointment... what can I say to him to convince him to see my side and/or what should I insist on happening?

5. If the consensus is that it's safe to wait until Tuesday for my appointment, what should I be looking for that would indicate that I do need to go to the ER/Urgent care and get immediate help?

Thank you so much for your help!
~Sarah

Hi Sarah,

Yours is one of the strongest cases I have seen that supports the theory that the hypercoagulable state is also present in thal minors, especially during pregnancy. I strongly recommend that you immediately begin taking 5 mg folic acid and 400 IU natural vitamin E complex daily. I would also suggest a daily B 100 Complex. The vitamin E is a powerful antioxidant and also a mild blood thinner. I am simply amazed that you have not been prescribed a daily baby aspirin during pregnancy, based on your history. It's mind boggling that no doctor has told you this before. I greatly prefer the natural E over aspirin, as it has much benefit beyond blood thinning. I wish you had joined us much earlier.
Ferritin alone cannot tell you your iron status. An iron panel including serum ferritin, serum iron and TIBC should be done before prescribing iron to thal minors.

1) Your symptoms are all related to low Hb and we constantly hear the same from thal minors.
2) Yes, it is obvious that this is the hypercoagulable state at work. Miscarriage is often the result as the clotting restricts the flow of blood between the uterus and placenta.
3) With your history, your doctor should already be looking for signs of thrombosis but the doctor may not be aware that this can happen in the uterus and not just the legs.
4)Your doctor has been taught like all doctors that thal minor is asymptomatic. It is not and we have posted two studies referring to this fact. Don't expect a lot from your doctor. If you tell him you read it at an online forum, he will dismiss what you say. However, thalpal is widely recognized as a responsible forum that demands a high standard that is not seen at most online forums. thalpal is a partner with curethalassemia.org, founded by the doctors who have the most experience on earth doing bone marrow transplants. thalpal is a credible source. Don't worry too much about what your doctor says. Just stress that you are concerned about the previous instances of clotting and the miscarriage and that you wish to be monitored for signs of thrombosis.
5) Throughout the rest of your pregnancy, you need to watch for sudden drops in Hb level. Tell those around you to watch out for you also, as if it does happen, your brain may be too foggy to recognize it right away. Transfusions are sometimes required during thal minor pregnancies, so make sure your Hb is closely monitored by your doctor. If you continue to be as sick as you have been, seek medical help. You may need a transfusion now. If you do seek urgent care, make sure the attending doctor understands that you are a thal minor with a history of miscarriage and clotting during pregnancy.

Andy, Thank you so much for your response!
My doctor did blow me off, like I thought he would (he told me to "get over it" and "move on," then prescribed me Zoloft and Xanex because I must have anxiety if I'm this concerned about it.).  I switched doctors because of his response, and my new one does take this seriously.  He referred me to a high risk doctor with knowledge of Beta Thal for a consultation.
Everything actually seems to be okay; my Hemoglobin levels are staying steady.  I started on a B-Complex and Natural E, even though the specialist said there "are no studies that confirm that these vitamins help... but it couldn't hurt."  And he did end up prescribing me Iron, but only after performing and analyzing a full Iron study.

Again, thank you so much for your help!!  I greatly appreciate you taking the time to respond to my post!  God bless!

Hi Sarah,

Yours is one of the strongest cases I have seen that supports the theory that the hypercoagulable state is also present in thal minors, especially during pregnancy. I strongly recommend that you immediately begin taking 5 mg folic acid and 400 IU natural vitamin E complex daily. I would also suggest a daily B 100 Complex. The vitamin E is a powerful antioxidant and also a mild blood thinner. I am simply amazed that you have not been prescribed a daily baby aspirin during pregnancy, based on your history. It's mind boggling that no doctor has told you this before. I greatly prefer the natural E over aspirin, as it has much benefit beyond blood thinning. I wish you had joined us much earlier.
Ferritin alone cannot tell you your iron status. An iron panel including serum ferritin, serum iron and TIBC should be done before prescribing iron to thal minors.

1) Your symptoms are all related to low Hb and we constantly hear the same from thal minors.
2) Yes, it is obvious that this is the hypercoagulable state at work. Miscarriage is often the result as the clotting restricts the flow of blood between the uterus and placenta.
3) With your history, your doctor should already be looking for signs of thrombosis but the doctor may not be aware that this can happen in the uterus and not just the legs.
4)Your doctor has been taught like all doctors that thal minor is asymptomatic. It is not and we have posted two studies referring to this fact. Don't expect a lot from your doctor. If you tell him you read it at an online forum, he will dismiss what you say. However, thalpal is widely recognized as a responsible forum that demands a high standard that is not seen at most online forums. thalpal is a partner with curethalassemia.org, founded by the doctors who have the most experience on earth doing bone marrow transplants. thalpal is a credible source. Don't worry too much about what your doctor says. Just stress that you are concerned about the previous instances of clotting and the miscarriage and that you wish to be monitored for signs of thrombosis.
5) Throughout the rest of your pregnancy, you need to watch for sudden drops in Hb level. Tell those around you to watch out for you also, as if it does happen, your brain may be too foggy to recognize it right away. Transfusions are sometimes required during thal minor pregnancies, so make sure your Hb is closely monitored by your doctor. If you continue to be as sick as you have been, seek medical help. You may need a transfusion now. If you do seek urgent care, make sure the attending doctor understands that you are a thal minor with a history of miscarriage and clotting during pregnancy.

Hi Andy, I am in a similar situation with low Hb (7.6).  I am 30 weeks pregnant and already had a blood transfusion late April  which boosted me to 9.5.  However, 3 weeks later I dropped to 7.6 and remain there.  I am being seen at one of the best hospitals in Toronto, but it seems no one can find a reason for drop as iron level and saturation all good.  I have had a plethora of tests run by the Internal Medicine doctors (seeing 2) and they have exhausted all avenues from checking for bleeds, antibodies, coolies anemia, etc.  Their treAtment plan is to put me on prednisone, which scares me.  There are so many problems that can be caused by taking it.  They insist prednisone safer than transfusion.  Any advice?? I am really worried.  I am 43 and pregnant for first time in 13 years of trying. 

Why prednisone? Drops in Hb like this during pregnancy are not uncommon among thal minors, and the solution is transfusion. You're nearing the end of the pregnancy, and you would probably only need one or two more transfusions before the baby comes. Unless they can give you a good reason why prednisone would help (and if an antibody reaction has been ruled out, then why prednisone?), transfusion would seem the better course of action.

Have you been taking a high dose of folic acid throughout the pregnancy? This is the best thing that can be done to help the Hb level.

And to be clear, thalassemia is Cooley's Anemia.

One of the effect of prednisone can be increase in the hemoglobin level.  Which is what happened with my daughter while on prednisone.

What dose of prednisone do they what use?  What is the taper schedule?

Most of the bad side effects from prednisone happen from prolonged use.

Catherine