Thal minor and pregnant

Hi all,

I am very happy to have found this site.  There is alot of information out there about thalassemia, but no one that can relate unless they have it. 

I found out I was a thal carrier when I was pregnant with my first son five years ago. My father also has it and it comes from our Italian decent.  With my first pregnany my hb levels were always low 9's, and I was on IV medication (ferlicet?) as well as a shot called procrit.  From what I remember my hb levels never really went up much.  I did have a csection, but didn't need a transfusion. 

Now I am pregnant (with another son) and have low hb levels again (9.3).  It seems I am getting everything in the book this go round....low bp (90/50), shortness of breath (if I walk up stairs or exert myself in the least), heart palpatations, and the very worst of it being the fatigue. 

I have an appointment with a hematologist tomorrow and I'm curious to see what the course of treatment is.  Is 9.3 severe anemia?  Hoping to hear experiences from other moms who have had to deal with this during pregnancy...or anyone for that matter!!!

Hi Hayley and welcome,

Ferrlecit is an iron medication and procrit is used to stimulate more red blood cell production. Both were used to counter your anemia. Thalassemia minor won't cause iron deficiency but pregnancy often results in iron deficiency anemia. This would be determined through iron studies and with thalassemia minor, iron deficiency shouldn't be assumed by low hemoglobin levels, but rather by the iron study tests, as iron cannot help the anemia caused by thal minor. Hb of 9.3 is low but wouldn't be considered severe anemia. However, thal minors have to have their Hb watched closely for any sudden drops that may require transfusion during the pregnancy. With your low blood pressure it is very important to stay well hydrated. You should also be taking a good dose of folic acid daily (at least 1000 mcg ( one mg)).

With your low BP, I think your hematologist may want to intervene with possibly procrit or a transfusion. I don't know how familiar your hematologist is with thalassemia minor and its possible effects on pregnancy, so please read through this link and the links it refers to, as the hypercoagulable state in thal minor pregnancies can present a danger to both mother and child, so it essential to watch for any signs of clotting problems. The portion of the post about iron probably does not apply to you, but pay special attention to the section about the hypercoagulable state.
http://www.thalassemiapatientsandfriends.com/index.php?topic=1623.msg13399#msg13399

Miscarriages in thal minor pregnancies are much more common than doctors realize. I have a somewhat unique situation here in that through posts on this site and also discussing this with many women who are thal minors, and have found a somewhat alarming rate of miscarriages among thal minors. Many of these could possibly be prevented with more awareness of two things. First, thal minor women are often prone to sudden drops in hemoglobin levels during pregnancies. Transfusion can correct this. Second, this hypercoagulable state has been well established by research and doctors should be aware that this can happen. When the problem manifests, clotting between the uterus and placenta can cause a great reduction in blood flow, resulting in miscarriage. Please make sure your doctor is aware that this can happen in minor.

I feel that your low blood pressure will require some action and will be thankful if you can let us know what is done, as thal minor pregnancies are a constant topic of discussion here and we are trying to learn as much as possible in order to give as much information as possible to pregnant moms.

Hi Andy,

Thank you for taking the time to reply to my post.  You have a great amount of valuable information and I appreciate you sharing it with me. 

First, I think doctors do not know enough about this situation.  At my OBGYN, one dr. blew off it off and didn't even check my hb.  At my next appointment I again had to ask for a hb test, and thats when it was 9.3 and the nurse tried to give me iron pills.  I know enough at this point that iron pills are not going to help me, so I asked them to refer me to a hematologist. 

I am angry that my first hematologist put me on ferrlicet knowing that my anemia was not caused by iron deficency.  This time I will insist on the proper care, which is why I am trying to educate myself as much as possible. 

I don't know what the risks are of a transfusion, but I know other diseases can be passed through the blood (We are speaking of a blood transfusion, correct?).  I would like to avoid that if possible.  I will bring up the hypercoagulable state to the dr.  I'm just afraid he will act like I'm overreacting, but at this point I am because if my baby's life is at risk well that deserves a huge reaction in my opinion!!!

Do you feel its advisable for a thal minor pregnancy to be treated by a high risk ob?  I've heard of other cases being treated this way just for this reason.  I feel like my doctors aren't giving my thal minor the attention it deserves, especially now that it is affecting other areas of my health and especially my pregnancy. 

Hi Hayley,

welcome on the forum,i wish you best of luck for your pregnancy,i remember that in my second pregnancy,after the csection my hb went to 8.6,doctor offered me a transfusion but i said that i'll hopefully cover it through my diet,during pregnancy my hb hovered between 9 to 9.5,i think it's not bad to take iron tablets while pregnant,as most women become anaemic during pregnancy,and iron deffieciency can co exist with thal minor,but still you can ask for serum ferritin test if you want to make sure that your iron is not low,and i hope that your partner has been tested for thal trait.

Take care,

ZAINI.

Hi Zaini,

Thanks for the warm welcome.  I will be sure to ask for that test today.  My appointment is at 2pm, I'll come by tomorrow to let everyone know what happened. 

Since I was aware of the thal trait I had my fertility doctor test my husband, and thankfully he doesn't have it. 

Wish you the best with your appointment, i hope your heamotologist won't say "it's all in your head " as they mostly do with thal minors.

Keep us updated.

ZAINI.

Iron should not be given to thal minors without iron studies being done first. If the tests do show you are iron deficient, then iron is appropriate. Basing it solely on Hb is a mistake when it is known that the patient has thal minor. Your Hb level is of some concern, but your blood pressure should be a major concern at this point. Depending on where you are located, your doctors may be able to consult with doctors at another hospital, who are more knowledgable about the implications of thal minor during pregnancy, as was the case with Courtenay, whose doctors consulted with the doctors at Strong hospital in my own town. The consultation was invaluable and helped Courtenay through what was developing as a difficult pregnancy.

Well as we all assumed the hematologist blew me off.  He says my low bp is a result of being pregnant (and ironically it was the highest its been since I've been pregnant today...110/60).  My heart palpatations aren't related to my anemia, and I should see a cardiologist.  And the shortness of breath and fatigue were also related to being pregnant. 

He said I didn't need iron, but they are doing an iron study to make sure.  And procrit is now considered dangerous and they don't use it as much anymore....and if my levels go to about 7 is when I would need a tranfusion.  He said 9.3 is normal for a thal patient. 

I know I'm pregnant, and I am going to have side affects from that, but saying that none of what I am experiencing is due to my low hb is a bit ridiculous to me.  I have my CBC results, I will post them tommorrow for all that is interested.  Most of my results were either high or low, but of course they weren't addressed, except to say my WBC was elevated because I was pregnant (I guess pregnancy is now considered an infection?!). 

Oh, and since I already had a healthy baby I shouldn't worry about the hypercoagulable state.  I guess it takes losing one until they really are concerned.  Great.

Sorry I'm so negitive, I just feel like we are the only ones who understand what this truly means.  It doesn't take thal major to have symptoms....carriers are not asymtomatic. 

Hi Hayley,

I really feel your pain.  I am in the process of being diagnosed with Thal Minor.  One test came back borderline, the second came back positive, so now the hemo is doing a third electrophoresis.

In the process, I have gone from thinking I have internal bleeding to who knows what.

I've had a pretty healthy and norma life, though in my late twenties to mid-thirties, I sort of noticed that I seemed to get sick more easily, and with harsher symptoms (I passed out, got extremely tired, etc.)

This year, I just found out about thalassemia after my hemoglobin dropped a full point out of the blue, my platelets count was low....(which may have been due to parvovirus)...

And while I feel SO much better than I did when this all started...I'm still not myself....by Thurs. of the week, I am pretty exhausted and after a week of work, I just want to rest on the weekends.

The doctor tells me thal minor is an "innocent diagnosis" which will cause no problems--just that I shouldn't marry someone with thalassemia.

It's hard to know that something isn't quite right, and not really know what it is.  It makes you start to feel a little crazy.

Just FYI---I have been getting the out of breath thing as well (when I walk up stairs?!?!?) and I am not pregnant and I'm in fairly good shape, so it just shouldn't be.

I hope you find a doctor who can help you and ease your worries.  Just know you are not alone.

Also, Andy has provided me with more solid information than any doctor I have met so far.

-dahlia

Hayley, it's a relief to hear your BP went up. It's very frustrating to hear about your doctor's attitude. A member of our group who has two children already, miscarried this past week. Having had two children previously meant nothing for this pregnancy. She still miscarried. A good friend of mine has two children, one major and one minor, but also miscarried twice. This is far more common in thal minors than doctors recognize and probably because when it happens, they do the same thing and say it has no relation to thal minor so it's not recorded as relevant. We have heard from quite a few thal minors who have required blood transfusions during pregnancy because of sudden drops in Hb. These things are really happening and it doesn't take a lot of extra effort to properly monitor patients during pregnancy. But far too often, the arrogant "I know better than you because I went to med school" attitude surfaces and the doctor ignores the information the patient supplies. It is not asking too much to ask a doctor to be aware of possibilities and look for any signs that something may not be right during the pregnancy. It is very frustrating.

Some things you can do to help yourself are complying with a good balanced diet, taking appropriate supplements and staying hydrated. Do your breathing exercises regularly. This will not only help prepare you for the birth but also will help keep your body oxygenated. Thal minors often complain of numbness in the extremities and this is due to lack of sufficient oxygen. For some reason, most doctors don't think this under-oxygenated state will have any symptoms but we hear from new members daily who report the same problems.  I would also suggest that you type the word pregnancy into our search engine and read the relevant posts that you find, so that you will be more aware of things that happen during thal minor pregnancies and how they are dealt with. If you are taking calcium, take it with magnesium and vitamin D. High doses of calcium without magnesium can cause heart palpitations, as each mineral is necessary to regulate the two sides of a heart beat.

There is also one other thing that may be adding to shortness of breath. If you are in an area where it is springtime, there may be a lot of pollen, like there has been here in New York all month. If so, the breathlessness may soon pass as pollen season quiets down. The pine trees here have been pollinating and it has been terrible. June should be a little kinder.

Dahlia,

Thanks for posting...I'm sorry your not feeling quite right either.  It isn't an innocent diagnosis in my opinion.  Thal minor still causes anemia, and anemia has its side effects.  The DR was trying to tell me that its my physiological make up so a 9.3 hemagolbin should be normal for me.  Well, I'm not buying it.  I get the point he's trying to make, but I also know how I feel, and to me a 9.3 hb doesn't feel good.  I hope you get the answers you are looking for.  The electrophrosis should shed some light on your situation. 

Andy,

I did mention this to the doctor and he seemed to think that since I have one perfect healthy child then this one will be just fine.  Again, I don't buy it.  But at this point there really is nothing I feel I can do.  I mentioned the asprin therepy, and he advised against preventing something that probably won't happen.  To me though, if there is a chance I could lose my baby I don't want to wait until that happens to take preventative measures next time.  I'll talk to my OB about it and get their thoughts.  I am going to request a hb level to be done at every appointment so I know where I stand.  I'll start to be more concerned if it gets into the low 8's. 

I am doing my best with the hydrating, and I eat pretty well (with a few bad choices now and again, but I'm human ).  The palpatations have been better, and if they return I will mention it to my OB.  As far as the shortness of breath, that one really stumps me.  I didn't have it with my first pregnancy.  It could be that I'm just five years older this time and pregnancy is taking more of a toll on me.  Anyways, I've added my CBC info below... I'm not very sure what all the MCV, MCH and MCHC are other then size and volume of RBC??  I tried to read up on it but I'm not understanding it much.  They are doing another electrophorsis, not sure why since I already told them I had thal minor.  Will post about the iron study when I get the results.

CBC with Diff

WBC   12.8   HIGH
RBC   4.25   NORMAL
HGB   9.3   LOW
HCT   29.4   LOW
MCV   69.1   LOW
MCH   21.9   LOW
MCHC   31.7   LOW   
RDW   15.8   HIGH
PLTC   265   NORMAL
MPV   8.8   NORMAL

Hi Hayley i cam sympathesis with you i have not been diagnosed with thal minor but i had a hb electro test which cam back iron defitiant but not to excluded the thal trait??? they want my husband to be tested but they said if his results come back negative there not going to bother looking more into my blood results, not being funny i want to know now im 28 weeks preg with my 3rd child and have always been aneamic in the pregnancies last time the hb dropped to 7 i had to have 12 venafor infusions they wouldnt transfuse me. This time im with a different hospital its already 9 ive told them i cant take iron as it gives me severe ibs so they have told me to take natral remedies and a good diet which i do take anyway. Just dont understand how a hb can drop that low when im eating like any other pregnant women i know you are prone to being anemic whilst pregnant but surely not that low, i work on a busy surgical ward and the only reason hb dropps to that level is because there bleeding after surgery i think im going to demand another test. oh just incase i didnt introduce myself im from wales in the uk looks like there ignorant docters everywhere!!!