Help Save Babies! Universal Thyroid Screening In Pregnancy

Help Save Babies! Universal Thyroid Screening in Pregnancy

I wonder if I am crazy to think I can change the world, but something deep inside me tells me that this is what I am supposed to do. I launched my blog Hypothyroid Mom on October 1st, 2012 in memory of the unborn baby I lost to hypothyroidism and in dedication to my two boys who beat the odds and made it to the world. When I wrote that first post Have You Suffered A Miscarriage? Your Thyroid Could Be To Blame the words poured out on the page as if someone other than me wrote it. Somehow I knew my unborn baby was watching over me. I know my mission to bring about UNIVERSAL THYROID SCREENING IN PREGNANCY is my destiny. I lost my unborn baby so needlessly. I will ensure my baby did not die in vain by saving babies all across the globe. With your help I will make this happen.

Babies At Risk From Maternal Thyroid Disease

I was a guest On Your Health Radio with thyroid advocate Mary Shomon. What an honor to be on the radio with my thyroid hero! One listen to this radio show will make it clear that maternal thyroid disease puts babies at risk.The show was recorded and you can download the free Mp3 to listen anytime on any device: Fertility, Pregnancy & Postpartum Health for Thyroid Patients.

So many readers have contacted me with stories of miscarriage, still birth, pregnancy complications, premature births, and babies born with intellectual deficits. There is no better way to stress the importance of thyroid screening in pregnancy than to share the heart-wrenching real life stories of thyroid sufferers.

“I just found your blog as I sit in the outpatient waiting room to have a biopsy of a large nodule on my thyroid. I have had two miscarriages in the past year. Both baby boys. One at 14 weeks and one at 13 weeks.”

“I had 5 miscarriages before I finally was able to have a baby girl.”

“I have hypothyroidism and never made the connection. At 2 1/2 months along of my first and only pregnancy, my doctor suggested I terminate due to “abnormalities”. But I refused, it was my first time being pregnant and I longed to be a Mom so much. Well about 7 1/2 months along, this little girl was born after 2 days of labor. She was roughly 2 pounds with severe birth defects. She died within two hours. I was/still am devastated. I kept asking my doctors -what caused this?? Their reply “Oh its just normal in so many births- nothing you did caused it” But I knew SOMETHING was wrong.”

“I had 2 losses before I carried to term, and was not able to get pregnant again despite my endo telling me it wasn’t my thyroid. The fertility doc said it had to be that…because there was no other reason.”

“The most hurtful image will be that little baby’s tiny feet for me. I am very sorry for everyone’s losses.”

“It’s sad- I had been diagnosed and “treated” for hypo for over 7 years when I had my first of 7 miscarriages!”

“The one I lost at 16 weeks was evacuated by D&C two months after it’s passing. I saw it and they immediately gave me a shot in the arm and I was out. They didn’t want me seeing it and wouldn’t tell me the sex of the baby because a year prior I had lost my 3 month old son to rsv because he was premature and his immune system wasn’t strong enough to fight it off. The rest passed eventually on their own, but with two of those I hemorrhaged badly.”

“I miscarried, then had a micro preemie at 26 weeks. He was 1 lb. 14 oz.”

“Try 4 miscarriages.”

“I’ve had several miscarriages and had to bury 2 girls and 1 boy.”

“I’ve had two miscarriages in the last year the first at 19 weeks and the most recent at 16 weeks. I had one miscarriage back in 2004 before I knew that I had Hashimoto’s.”

“I have hypothyroidism and had a missed misscarriage as well. The baby quit growing at 8 weeks and I carried my baby a month after that before finding out its heart wasn’t beating and had to have an abortion pill to pass the baby, which was a horrible experience. I was told I would not see the baby and I did. As well as having to push out the placenta at home in my bathroom, it was awful.”

“I suffered 3 miscarriages and I know it was due to my thyroid. it is upsetting and frustrating when you know there is something wrong but your doctor ignores it. Heartbreaking.”

“My first loss was at around 12 weeks, but according to the size my baby died around eight weeks. I lost many more at around eight weeks until finally I found a specialist who saw I had a progesterone issue caused by the thyroid problem and an autoimmune issue.”

“Back in the 1950s when I was eight years old, my mother had a miscarriage and that was the last opportunity for me to have younger siblings. We didn’t know then that her quite severe hypothyroidism was likely to have played a role in the miscarriages that added to her suffering.”

“I have had 7 miscarriages.”

“I miscarried one, then had a stillborn long before I knew of my Graves.”

“I had a miscarriage with twins. Then got pregnant again and lost the baby. I don’t know if we will ever have a child.”

“I suffered 3 miscarriages in the space of 2 years. I was pregnant a total of 4 times and was only able to carry ONE to term.”

“I too suffered three miscarriages in my life and near loss of two other early born infants.”

“I suffered through 4 second trimester pregnancy losses. My thyroid was never checked. I was not diagnosed hypothyroid until I was 48 with a TSH of 36.”

“I had a miscarriage 2 months ago and last week I noticed a nice sized bump on my neck! I have a 3 cm thyroid nodule.”

“I lost three babies. I know now that I was hypothyroid for more than thirty years before I was even diagnosed. I had absolutely no idea that I had Hashimoto’s.”

“I recently found your Hypothyroid Mom Facebook fan page in the waiting room for my thyroid ultrasound. My 11 year old son has Autism/Asperger’s Syndrome. I recently miscarried at 7 weeks along.”

“At 3 weeks pregnancy, my TSH was far out of the range for pregnancy at 147 (recommended TSH for first trimester is <2.5). My doctors could’ve cared less and told me as long as we get it controlled there will be no problems. I miscarried at 6 weeks 1 day. I’m scheduled for a D&C. I pushed and pushed the doctor on this thyroid issue and they seem unconcerned.”

“I have Hashimoto’s. My 13-month old daughter has severe global delays.”

“My wife is pregnant and she is suffering from hypothyroidism. Her TSH is 150. This is the sixth week of pregnancy. Her doctor recommends we abort the baby.”

How many babies suffer before we shout for universal thyroid screening in pregnancy? NO MORE. This is the moment we stand up, speak up and demand change.

Runner-Up For The Next Global Thought Leader

An esteemed panel of thought leader judges selected the Top 10 candidates for Season 1 of “Change The World: The Search for the Next Global Thought Leader” sponsored by Ghost Tweeting. I am honored that Hypothyroid Mom was named in the TOP 10.

MY MISSION – UNIVERSAL THYROID SCREENING IN PREGNANCY

On Thursday, June 20th voting ended at 5:00PM Eastern and Hypothyroid Mom was named Runner-Up for Change The World: The Search For The Next Global Thought Leader. Even though I was not the winner of this competition, I sure feel like a winner thanks to all of you. I set out to spread awareness about the need to better protect our babies and we’ve accomplished that and more.

2,671 VOTES in 7 days for Hypothyroid Mom’s mission

UNIVERSAL THYROID SCREENING IN PREGNANCY.

Thank you to each and every one of you for voting.

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About Dana Trentini

Who knew that little butterfly-shaped thyroid gland at the base of my neck could affect my life so completely? I founded Hypothyroid Mom in memory of the unborn baby I lost to hypothyroidism. Winner of two 2014 WEGO Health Activist Awards: Health Activist Hero & Best In Show Twitter. *Hypothyroid Mom includes Affiliate links. Connect with me on Google+

Comments

  1. 95% of pregnant women are severely deficient in iodine – nodules on the thyroid, goiters, hyprothyroidism can be resolved with iodine!! Most doctors say to stay away from Iodine — but every cell of the body needs it — and we are overexposed to floride, chloride, and bromide — that knock iodine out of the cell receptor sites — so we don’t get it. Needless to say we are exposed to so much radiation everyday — and this is a serious problem. You have to find a good Iodine isolate. Our normal T4 and TSH tests do not reveal this truth. You can go to Dr. Gabriel Cousins — in addition to a number of other website that will help explain this to you.

  2. Your screening protocol needs to include antibodies for Hashimoto’s. My TSH levels were always normal when I was being treated for infertility, and I had 3 miscarriages. I was not diagnosed until I experienced postpartum thyroiditis symptoms after the birth of my second child. Many women suffer through this undiagnosed as well because the symptoms can mimic those typical of new motherhood.

  3. I lost my first pregnancy at 10 weeks, 6 weeks into my second I started bleeding like with my first. I had to fight to get tested for my progesterone levels, but finally did. The tests came back super low, started replacement therapy and within a day I stopped bleeding and carried my little girl to term. All because of my hyperthyroid and graves disease.

    • Dana Trentini says:

      Ruth,

      I am sorry for the loss of your baby. So happy you pushed to get progesterone testing with your second. Progesterone is a common issue for thyroid sufferers because the sex and thyroid hormones are intricately connected. I too had progesterone issues and this is a topic I plan to write about at Hypothyroid Mom. I am so happy you shared your story. It will inspire other readers to push for testing and to be an advocate for themselves and their babies.

  4. I had hypothyroid when I was pregnant with my 7th pregnancy.This was in 1976.When the Dr diagnosed me..He told me to go home and suffer because they could not treat me while I was pregnant! My baby boy was born with a deformity of his head.Thankfully we found a good Dr in Virginia who performed surgery on my son when he was 3 months old and he is now a healthy 36 year old.He does have some disability with short term memory but otherwise is very healthy.If not for the Dr in Va,he would not have lived.Now I think they treat you during pregnancy.Things have certainly changed…

    • Dana Trentini says:

      Cindy,

      How upsetting what happened to your son. So happy he is doing well now. It is amazing that since 1976 with all that’s known about the dangers of thyroid disease in pregnancy there is still NO universal thyroid testing in pregnancy. Let’s see if we can make that change now. The time has come. Thank you for sharing your story.

  5. Ona Lee Cocanougher says:

    WOW…. I knew it was my thyroid that caused it……. How sad… Mine was an ectopic. I lost 30% of my uterus…….. I had to adopt. Never could have a baby…..

    • Dana Trentini says:

      Ona, I am very sorry for the loss of your baby. It is tragic what is happening to women with thyroid problems and their babies. Best wishes to you.

  6. Janna Johnson says:

    I have hyoithyroidism and just found out 3 days ago that I am pregnant! We were not trying so I am in shock and scared. We have a 5yr old and 3yr old. I am taking 2grains of Nature-Throid but not yet optimal. Still very tired, brain fog, mild anxiety, dry skin/hair, and acne. I know the first 12 weeks of the pregnancy is when the baby depends on the mother’s thyroid hormone until the baby produces it’s own. I have so many questions/concerns. Since I am not optimal but taking NDT will the baby be using everything I have? Will I need to take more since I am providing for 2? Since I am not optimal, will the baby not be optimal? Will I be able to get optimal and have all symptoms go away since I am pregnant?

    Please help I am scared!!!

    Thank you!!
    Janna

    • Dana Trentini says:

      Hi Janna,
      Congratulations on your pregnancy. Please don’t be afraid because the fact you know this information is what will make the difference. Call your doctor today and ask for full thyroid testing including TSH, Free T4, Free T3 and thyroid antibodies. Since the baby requires thyroid hormone from the mother often times hypothyroid women will have a TSH that rises in early pregnancy and require an increase in dosage so that is why call your doctor about this today. There is hope to have a beautiful healthy baby. It’s just about getting your thyroid level tested right away and dosage adjusted as needed and being tested regularly every 4 weeks in pregnancy to keep on top of it. Best wishes to you and to your baby.

      The American Thyroid Association issued guidelines for pregnancy bring a copy to your doctor.

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3472679/

  7. Nothing like this should be MANDATORY. I have and should continue to have the RIGHT to choose what tests I accept or deny.
    I understand getting the word out, but you are talking about taking people’s rights away in the long run.

    • Dana Trentini says:

      Hi Heather,

      I’ve rethought the wording of my mission using the word “mandatory” you are right is not the correct way to describe what I set out to do. Every pregnant woman at her first prenatal appointment with an ob/gyn at around 8-10 weeks pregnancy is given blood testing for various different potential pregnancy factors but thyroid blood testing is not included in that blood draw. Doctors are not required to include thyroid testing in that blood draw and that means many doctors do not include it and many women don’t know to ask for it. Mandatory meant that doctors are required to include it in that blood testing that is already being done on each woman. Of course by no means do I meant that women should be forced to have thyroid testing just as they should have the right to say no to that testing in pregnancy at that first prenatal visit. However there has to be a health policy in place that requires doctors to include thyroid testing, should of course a woman agree to have the blood testing during that prenatal visit, otherwise many thyroid sufferers will slip through the cracks. I’ve reconsidered how I will word this mission and I believe “universal thyroid screening in pregnancy” is more appropriate for the naming. I agree with you completely that no woman should be forced to do any testing she does not wish but what is of concern is that doctors are not responsible if they don’t include thyroid testing for pregnant women so many do not.

      • Dana Trentini says:

        Hi Heather, I’ve made the change to the wording. I worried about that misunderstanding due to using the word “mandatory”. Thank you for sharing your thoughts because it confirmed for me the need to select the wording very carefully. No woman should be forced to do any form of testing of any kind in pregnancy. However if a woman is going to have that blood draw in the first prenatal visit then doctors should be held accountable to include thyroid in that blood panel.

  8. I think your article is well written and you express your cause well. Routine thyroid screening sounds like a good idea, but I do not like the idea of “mandatory” anything as part of a woman’s care.

    • LOL! You resolved that before I completed my post! Thank you. <3

      • Dana Trentini says:

        Hi Jessie, Since writing the article I’ve had several readers ask about the word “mandatory” and I too was concerned that it was not fitting my message at all. This is not about forcing women to take tests they don’t wish. However if a pregnant woman is already going to have a blood draw at the 8-10 week pregnancy mark, of course assuming she agrees and wishes that, then the thyroid testing would be in that same blood draw just the lab would include it in the testing of the blood sample. I was already weary of the wording myself so Heather’s comment made me just go in and make the change to the article so that moving forward I have the right wording for what I am trying to achieve.

  9. I’ve had nodules on my thyroid for almost 2 yrs now. I’ve seen an endo twice. She said to just wait n see what they do. My regular doctor has me doing ultrasounds every six months. Last ultrasound showed the nodules had shrunk just a little. I’ve had one live birth at 26 weeks 3/4 days. I’ve had one miscarriage At 14 weeks which were twins. I have an incompetent cervix which plays on a lot of my problems. I’m jut wondering if my thyroid could of been the problem with my twins!

    • Dana Trentini says:

      Jana,

      I’m sorry to hear about the loss of your twins. It’s possible your thyroid condition was responsible although of course there are also many other possible causes of miscarriage that may have been to blame. However one point for certain is that you should have your thyroid condition looked at more closely prior to trying to conceive again. Do you have hypothyroid or hyperthyroid symptoms? There is hope to have beautiful healthy babies. The key is being as thyroid healthy prior to conceiving. Be sure to have not just your TSH tested but also your Free T4, Free T3, Reverse T3 and thyroid antibodies at a minimum.

      http://hypothyroidmom.com/hypothyroid-moms-story-of-hope-her-miracle-babies/

  10. Hi Dana- You’re site is amazing. I have a few questions and would love to hear your thoughts. Your help is appreciated!!!

    I had my first child and was diagnosed with Hashimoto 5 months post partum. I may have had hypo thyroid during pregnancy and had no idea so I had no treatment other than insulin for gestational diabetes. Now, I am 10 months post partum and on 50 mcg of Synthoid with TSH back to 1.5 and feeling normal again. However, my antibodies are still extremely high and doctors tell me that I can’t do anything for the antibody levels. I want a 2nd baby but I worry that I risk having problems with my body and with the baby’s development.

    1. Given this situation, would you risk trying for a 2nd baby? Have you heard of anyone getting worse after a 2nd pregnancy? I feel lucky to be back to normal and worry that I would be pressing my luck to try again (even though I would love to have a 2nd baby).

    2. How do I lower my antibody levels when my TSH is in the normal range of 1.5-1.65?

    3. If my TSH is normal and being regulated by doctors during pregnancy, are there risks to the baby if my antibodies are high? If so, what risks are there to the baby’s development?

    • Dana Trentini says:

      Hi Olivia,

      You are wise to think of this. There is hope to have beautiful healthy babies. The key is being as thyroid healthy as possible prior to conceiving which in your case means making sure your Hashimoto’s is well managed prior to trying to conceive again.

      With each pregnancy my thyroid condition worsened. What I mean is that my medication dosage has increased with each pregnancy and my post-partum periods were each very challenging to get my thyroid levels optimal again. And yes I would do it all over again to have my boys. So yes I believe there is hope to have healthy babies and the key is getting as healthy as possible first.

      The first step is you need to be sure you’ve had full testing because there are many potential underlying issues that are causing your elevated antibodies including adrenal issues, food sensitivities especially to gluten, sex hormone levels including testosterone, issues with vitamin B12, D3, zinc, selenium, bacterial/fungal/viral infections, etc. So the first step is being sure you’ve had all the right tests: Free T4, Free T3, Reverse T3, adrenals, iron including ferritin, food sensitivity testing, sex hormones including testosterone, D3, B12, magnesium, zinc, selenium.

      http://hypothyroidmom.com/hypo-like-a-rock-star-hashimotos/

      http://hypothyroidmom.com/hashimotos-thyroiditis-its-a-genetics-thing/

      There is a great deal written about the link between gluten and Hashimoto’s so worth it to go gluten-free for 3-4 weeks to see if it changes your antibody levels and your symptoms.

      http://chriskresser.com/the-gluten-thyroid-connection

      Great book by Dr. Datis Kharrazian on Hashimoto’s called “Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal” that covers possible treatment options.

      http://thyroidbook.com/blog/page/13/

      It may mean finding a new doctor.

      http://hypothyroidmom.com/top-10-resources-to-find-a-great-thyroid-doctor-in-2013/

      My miracle babies.

      http://hypothyroidmom.com/hypothyroid-moms-story-of-hope-her-miracle-babies/

  11. Kerry wright says:

    I have had a underative thyroid for over 15 years and have had 6 kids me having that didn’t effect any pregnancy or baby

    • Dana Trentini says:

      Hi Kerry,

      I’m so happy to hear your under-active thyroid did not have an effect on your pregnancies with your children. There are many hypothyroid women that go on to have beautiful healthy babies. This condition affects us all differently.

  12. I had two miscarriage in last year. We never checked TSH when I was pregnant. Now we took blood work and TSH is 2.66. But the doctors tell if is normal. Now we are planning to try again. Now I am worried, whether to go on trying or go to specialist to reduce it to 1-2 . Please suggest.

  13. hi.. This is Rinkle. I have thyroid and i lost my baby in 7 and half month. is this beause of thyroid?? what i hv to do to control my thyroid?

  14. I am so happy I just found this site! I have Hypo, treated but not so sure I’m optimal. I just got a positive pregnancy test, yay! But I am freaking out, not only do I have hypo… I’m also 41. So worried about keeping this baby healthy. Is it wrong that my T4 level is soooo low?
    Last blood test:
    TSH 1.31
    T3: 89 (didn’t get reverse)
    Free T4: .5 (range test gives is .8-1.5)
    and no antibody test
    Thanks Kaiser.

    • Dana Trentini says:

      Hi Jen, I’m very sorry for the delay in responding. I’ve had close to 4 million people visit here and on my Hypothyroid Mom Facebook page the last two months and struggling to get to everyone. Congratulations on your pregnancy. Speak to your doctor about your Free T4 below the normal range. Be sure your thyroid is regularly tested throughout pregnancy because your levels can change. Here are the guidelines by the American Thyroid Association.

      ■ RECOMMENDATION 2

      If trimester-specific reference ranges for TSH are not available in the laboratory, the following reference ranges are recommended: first trimester, 0.1–2.5 mIU/L; second trimester, 0.2–3.0 mIU/L; third trimester, 0.3–3.0 mIU/L.

      ■ RECOMMENDATION 14

      There exists great interindividual variability regarding the increased amount of T4 (or LT4) necessary to maintain a normal TSH throughout pregnancy, with some women requiring only 10%–20% increased dosing, while others may require as much as an 80% increase.

      ■ RECOMMENDATION 16

      In pregnant patients with treated hypothyroidism, maternal serum TSH should be monitored approximately every 4 weeks during the first half of pregnancy because further LT4 dose adjustments are often required.

      ■ RECOMMENDATION 17

      In pregnant patients with treated hypothyroidism, maternal TSH should be checked at least once between 26 and 32 weeks gestation.

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3472679/

  15. Hi,
    I’m hypothyroid for past 2 years and was on medication before preganancy. However during my first trimester my thyroid level (TSH) were 19 & 12 at weeks 8 and week 11. Unfortunatley I was not knowing about the negative effects this would have caused to the baby and my ob-gyn only asked me to increase dosage after 1st test and check back after 3 months.

    I then referred to an endocronologist (besides a new ob-gyn) who brought down level to normal range at week 15 and thereafter. Now i’m at 31 weeks and things look normal. I want to know if there are some specific screenings that I can do for my new-born baby (or now) so that when she is born we can start treatments ASAP if anything is noticed.

  16. Tara Frances Georgison says:

    Just out if curiosity, I Am a littler past my 5 weeks pregnant mark. With my last pregnancy my thyroid went extremely liw and had to be put on medication. My daughter was born healthy and almost 10 pounds full term. I however lost 4 babies before her through miscarriage and the docs couldn’t figure out why. Now I am thinking it was my thyroid. Anyways, I am very exhausted with adequate sleep and relaxation to tthe point i’m crying because I’m so tired and weak. I’m just wondering if my chances of having thyroid problems this pregnancy are high because of the liw thyroid problems I had last time? I had blood testing this morning for tsh she’s am just waiting to hear back.

  17. This article is very amazing on pregnancy. Thyroid screening is very essential for all pregnancy.It protect for all babies. I also want to try for my baby. Thank you for the information.

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