Thal minor , pregnant , and Hypothyroidism...feed back appreciated

Hi all,
 I just want to say thank you all for how awesome you all are!  Here's a quick background, I'm 28 y/o and have known about my Beta Thal minor my entire life , like many of you , it was chalked up to emotional issues....when I was 16 my blood counts dropped ( i don't know the numbers) and was on my way to a blood transfusion but the hematologist held off because of how young I was.

Then life happened, I grew up, I became tired way more often then normal but knew there was not much I could do about it.
I have had 1 very successful pregnancy my daughter will be 2 the day after Christmas. Although, I suffered with chronic fatigue during the time I chalked it up to environmental stress. Come to find out when the midwife checked my numbers they were as low as this pregnancy.

OK fast forward and now I'm 25weeks 3 days pregnant currently with my second.. I asked my midwife for extra blood work FULL CBC and TSH levels and found out I have hypothyroidism TSH 4.89 and was immediately but on 25mg of Synthyroid. I AM BEYOND TIRED like the fatigue of death if I knew what that felt like..., I work full time and sometimes have to leave work early or nap behind closed doors in my office.
I know some of it is stress of knowing I'm hypothyroid during the pregnancy which is really bad for the fetus so I'm anxious about that as well.

Additionally, my midwife did a good job and ordered a full iron panel ( i don't have those numbers) but said my iron and folate are both very high and explained it to me as having iron in my body but not connecting to my blood...and consulted with my GP , my HB is 9.6 and Hematocrit is 30% but I don't have the other numbers...my mom (also thal minor) needed two blood transfusions during her pregnancy with my brother.
I have since been referred to a hematologist and endocrinologist. I meet with the hematologist on Thursday and (I HAVE READ ABOUT ALL THE POST Related to THAL MINOR And PREGNANCY ...thank you for it all ) know he may chalk this up to thal minor and 9.6 is not that low and not to be worried
 but I'm wondering if there is anything specific i should ask the hematologist and/or endocrinologist and what to say to do the best advocating for myself and the baby ?

thanks for listening,
a very worried and fatigued mom
Mia ~

Hi,
I really feel for you. Being pregnant with thal minor and hypothyroidism is a double whammy.
The good thing is your Hb is quite good for your situation. I have needed a transfusion in the first of my 3 pregnancies but Hb was much lower.
You really need to be on top of your thyroid though. Try to keep your TSH where you feel well.I know under 2.5 is considered normal but I didn't feel ok while pregnant till closer to 1. My doc let me because he said he has never seen anyone exhibit hyper symptoms when pregnant.
Since you've only recently been diagnosed you won't know how much hormone is your need and how much your babies but for me I needed double the normal amount during pregnancy.
Expect fluctuating levels after delivery but you will probably still need extra if nursing and then will slowly go down. Just keep testing and adjusting and listening to your body.The symptoms will tell you when you need to adjust even before you test.
Don't worry if the hypothyroid treatment is well managed babies are not affected. Mine wasn't.
Zahra

Thank you so much for the reply. Sometimes it's nice to know you're not alone and I'm not going crazy!!! Glad all worked out ok for you , I'm definitely going to be staying on top of this for sure!

Your Hb is good for this point in the pregnancy. I don't think any intervention with iron is needed, so don't let the doctors try to raise your Hb with iron. Thal minors typically see a drop in Hb during pregnancy and it is no cause for alarm as long as it stays above 8.

Thanks Andy!
Per all your feedback that's what I figured...I think just the extreme exhaustion is really wearing on me . I'm going to make sure they keep monitoring it as well as sorting out my hypothyroidism

Hi all,
I met with the hematologist today who was thankfully educated on Thal minor! He wants to monitor my HB every week due to my extreme fatigue,shortness of breath, tingling, etc, etc and the fact that my mom needed two transfusions during her pregnancy.He knew enough to tell me def don't let anyone give me iron! But  for right now, I'm good.
He did say something about hemolysis-what does that mean exactly? and has referred me to a high risk OBGYN(I'm wondering why or if it's in case their needs to be a transfusion?). He said at this point there's not much to do but monitor and for now every two weeks(that seems like a lot)  and after the baby I should have an MRI of my liver (i'm assuming this is to check on iron?).
Just some things I wanted to follow up
Hope everyone else is doing well
~Mia

Hi Mia,

Hemolysis is the premature destruction of red blood cells. This occurs in thal minors, as the smaller misshapen RBC's are filtered out by the spleen.
I would assume that this doctor has referred you to the high risk OBGYN just because some minors do require intervention with transfusion and sometimes during the birth. This is a precaution that a doctor familiar with thal minor pregnancies would automatically do. He is also doing the right thing by monitoring your Hb so often. It sounds like he is doing all the right things. I'd like to see more doctors follow this example with thal minor pregnancies.

Hi Andy,
Thanks for the feedback. I'm glad to know he is doing the right things.  It seemed like he was well educated and based on some of the other post I've read I was relieved he didn't just dismiss the all of my concerns/symptoms.
Hopefully, others can have such a similar experience

I'm not sure whether it has been mentioned above- thyroid hormone replacement therapy must be increased during pregnancy - my synthroid dose was increased from 1.0mcg to 1.25 mcg during my pregnancies - as the developing baby requires thyroid hormone for development.

Increase of blood volume during pregnancy will explain the lower hemoglobin level to some extent - sometimes receiving a transfusion will be helpful for the mother as well as the developing baby. 

A balanced diet and prenatal vitamin will be very helpful!

Best of luck with your pregnancy and delivery!

Sharmin

Hi all,
I've been too exhausted afterwork to even check the computer periodically. Having thal minor-hypothyroidism, and a 2 year old while being now 32 weeks pregnant is beyond exhausting!
I've been meeting with my hematologist every other week and hovered at  a 9.5. However , at yesterdays appoint I went up to 9.8 YAY! but had a decrease in my actual iron(no iron supplements right now but will monitor it as my iron levels in my liver were high).  What a bizzare body one thing goes up and the other goes down (it's exhausting as you all know). He reports that my body is acting more like an Intermedia due to the stress from the pregnancy and I've seen an increase in symptoms as I get further along(i.e. shortness of breath-he reports it's also getting work because of baby's position,extreme fatigue, a serious increase in joint paint) and recommends coming in for a transfusion if it gets to the point of not being able to breathe and symptoms are unbearable.
My concern with doing this is at this point I think I'm at a high enough level not to be necessary and don't want to put myself and baby at any unnecessary risks (he's more concerned about symptoms then levels which from reading here is a good thing). BUt I'm also concerned about the stress of potentially needing to stop work early (I work as a supervisor 40+ hours a week-which my husband thinks is too much and that I should stop working sooner rather then later with all of this going on) and the financial strain it would put us in. I've been trying to monitor myself carefully, anytime I get super tired or worn out I lay down on the couch and unfortunately (let me 2y/o watch some television or engage in games next to me-we try to limit tv as much as  possible. so I don't feel great about this!)
In addition the high risk obgyn recommened oxygen during delivery because of my fatiigue-someone to be home iwith me post delivery as I will feel very exhausted and they are expecting levels to drop, early epidural (but I did my last delivery natural and I'd like to try to again) and iv set up incase of transfusuion. I'm mostly venting but nice to knowI'm ot alone in this crazy endeavor!

The precautions like oxygen are a good idea, as is being prepared for the possibility of a transfusion during delivery should it be needed. It shows your doctor is well prepared. Your Hb is good, but if an emergency situation arrives during the delivery, it's necessary to be ready for any eventuality.

Is there any way for you to work a few less hours each week until you go on leave to have the baby? And definitely have someone available to help out at home after the birth for a few days so you can regain your strength and concentrate on the new one.