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Author Topic: thal minor and miscarriage  (Read 846 times)
hellokelli
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« on: August 02, 2018, 12:15:36 AM »

In searching the forums I can see this topic has been beaten with a dead horse, but I still find myself with questions.  So I apologize in advance.

I have had one successful pregnancy when I was 28, which required lots of transfusions throughout. It also always measured too small and she was born small (she also has thal minor).  Now, at 36 I just had my first miscarriage.  I was 6 weeks pregnant and my body started naturally miscarrying.  I never got an ultrasound before the miscarriage, so I am not sure if it was developing as it should.  

I have read so far that this appears to be common among thal minor women and we should take 2-5mg of folic acid (methyl folate) plus 400 vitamin E.  I will definitely start that, but I am still trying to make sense of it all as I try to grieve and get over this loss.

First, has anyone had to have a transfusion after a miscarriage?  I'm worried with all the blood loss.  

Second, would it do any good to see my hematologist?  I was supposed to start seeing her again after I reached the 6 week appointment, but I never got that far with the pregnancy.  I am wondering if there is any insight or help she could offer to prevent future miscarriages?  Or would it be a waste of time?  (My particular hematologist has always been open to listening and willing to read any research I bring her etc.)

And finally, say I take a 5mg methyl-folate tablet a day.  What if I also eat foods rich in folic acid like spinach, etc...will that put me over the 5mg per day threshold and could there be any negatives to that?
« Last Edit: August 02, 2018, 10:50:33 AM by hellokelli » Logged
Andy Battaglia
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« Reply #1 on: August 04, 2018, 07:45:00 PM »

Your body will use as much of the folate as it needs. Since it is water soluble, it doesn't store in the body for long. FYI, I have heard from thal minors who take as much as 10 mg daily of folate even when not pregnant. I would not suggest that high a dose of folic acid, but L-methylfolate is safe in large doses.

Since you have had a good relationship with your hematologist, it would be good to discuss how to approach a pregnancy to give you the best chance of having a successful pregnancy. Transfusion does have benefits in regards to reducing the potential for clotting issues, because a higher Hb reduces the extra bone marrow activity that produces the defective red blood cells and reduces the amount of unmatched alpha globin chains. Both of those factors are involved in the hypercoagulable state that is found in thals and transfusions can reduce the excess activity. If you are in a situation where it's likely transfusions would be required during the pregnancy, it would probably be better to start sooner than later and keep the Hb high enough to greatly reduce the overactive bone marrow activity.
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hellokelli
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« Reply #2 on: August 09, 2018, 10:03:46 PM »

Thank you so much Andy!

I have started taking all the recommended vitamins and have increased my folate to 5mg. 

Ever since going through this miscarriage (9 days ago today), my body has felt horrible.  And all of my symptoms seemed like thal symptoms to me.  Headaches, tried, dizzy, fog-brain, heart palpitations, and I even passed out twice.  So I went see my hematologist, thinking surely this is related to the thal and losing blood.  But she said all of my blood tests look normal.  My Hb was at 10, which is actually on the high end for my normal.  Also my iron is higher than it needs to be but I don't take iron supplements (haven't since I was a child).  I should note that last week my Hb was at 9.5, so maybe the increased supplements have already helped 

I also went see my GP, to see if he had any idea where these symptoms could be coming from.  He also said he sees no reason I have these symptoms. 

So I am just reaching at straws in frustration trying to figure out what is wrong.  Any ideas what could cause anemia symptoms without much anemia? 

Here are the lab results my GP ran yesterday:

HGB   10.3  L   11.2-15.2 (g/dL)
HCT   30.9  L   34.0-45.0 (%)
MCV   62  L   77-98 (fL)
MCH   20.5  L   26.3-33.3 (pg)
MCHC   33.3   31.7-36.0 (g/dL)
PLT   341   141-343 (10^3/uL)
RDW-CV   16.4  H   11.4-15.2 (%)
RDW-SD   34.7  L   36.2-47.0 (fL)
MPV   SEE NOTE   8.5-11.6 (fL)
MPV COULD NOT BE DETERMINED DUE TO INTERFERING SUBSTANCES   Huh?

Oddly my gran levels were high (rest of WBC fine)
GRAN#   7.2  H   1.6-6.6 (10^3/uL)

Also ran a CMP and everything was normal except bilirubin
TOTAL BILI   1.4  H   0.2-1.1 (mg/dL)

And finally, he ran a RBC morphology if that helps any:
RBC MORPH   HYPO   Normal
RBC MORPH #   1+   
RBC SIZE   MICRO   
RBC SIZE #   2+   
POIKILOCYTOSIS   1+   
PLT EST   NORMAL   
PLT MORPH   NORMAL   
OTHER MORPH   RARE KERATOCYTE, RARE DACRYOCYTE   
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Andy Battaglia
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« Reply #3 on: August 10, 2018, 03:54:22 PM »

Hb of 10 is still rather low and will cause the problems of anemia. Your RDW is not above 18, so it's unlikely iron is low. L-methylfolate, sublingual vitamin B-12 and wheatgrass in any form, including powder and tablets, can all help to bump the Hb level up. It is a battle, though, because your body's ability to produce healthy red blood cells is somewhat diminished by thal. Perseverance is important, as most people will not see short term results.

Quote
MPV [Mean Platelet Volume] COULD NOT BE DETERMINED DUE TO INTERFERING SUBSTANCES
First time I have seen this reported honestly. The defective red blood cells produced are often confused as platelets in the readings for thals, which can cause unnecessary alarm about high platelets, when they are not actually high. I would much prefer to see this honesty in the report instead of alarm. It is nothing to be concerned about.
Bilirubin levels are usually high in thals due to the higher turnover of red blood cells, which causes bilirubin to be produced. This does eventually cause problems like gallstones in some thals.

The symptoms you're experiencing may be hormonal and should pass. There is a nice artcile about what you may experience after a miscarriage at https://www.babygaga.com/15-things-that-will-happen-to-the-body-after-a-miscarriage/
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hellokelli
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« Reply #4 on: November 30, 2018, 08:30:27 PM »

It's been a while but I just wanted to update this post in case if anyone has a similar problem and is searching for answers in the future....

I've suffered 3 consecutive miscarriages now, all within 6 months, and I finally have some results back.  I have the MTHFR mutation, which is no big deal since I've been taking methylfolate since the first miscarriage.  But I also had low protein S antigens (both free and total), which from what my doctor tells me likely points to a clotting issue.  I am scheduled to see my hematologist next week, but when I heard these results I immediately thought of this forum and how Andy says thal minor causes hypercoagulable state in pregnancy.  Perhaps this is further proof of that.  

Update:
Hematologist said the protein S antigens were low but not low enough to cause any problems.  I'm back to having no clue why this is happening   
« Last Edit: December 03, 2018, 12:24:12 PM by hellokelli » Logged
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