If you knew you weren’t feeling well during your pregnancy, why didn’t you get a second medical opinion?
A large digital media company had come to my home to interview me about HypothyroidMom.com. The interviewer asked this question so casually, no idea how her eighteen-word question crushed me.
Thoughts raced through my head, feelings overwhelmed me, silence suffocated me as the interviewer waited for my answer.
How would I explain that I had asked myself this same question a million times, feeling a regret so deep that I feared it would consume me.
I was diagnosed with hypothyroidism following the birth of my first son. When I became pregnant for the second time in late 2008, I followed my thyroid drug protocol to the letter never once doubting my Ivey League medical school trained and top awarded NYC doctors.
In my first trimester, I was overcome by a sick, tired, weak feeling. I recall the night I told my family, “I am worried that something is wrong with the baby.” My body was whispering a warning to me, but I trusted my doctors and stopped questioning them when they responded that my thyroid level was safe for pregnancy and that it was normal in early pregnancy to be tired. Somehow this “sick, tired, weak” feeling didn’t seem normal but I disregarded my body’s warning.
I believed doctor knows best.
It turned out I was wrong.
Under their care my TSH (thyroid-stimulating hormone), the gold standard for measuring thyroid function in mainstream medicine, reached levels far about the recommended range for pregnancy endangering my fetus’ life and I miscarried.
Guidelines of the American Thyroid Association for the Diagnosis and Management of Thyroid Disease During Pregnancy and Postpartum were updated in 2011. They recommend the following trimester-specific reference ranges for TSH in pregnancy:[1]
First Trimester, TSH 0.1 – 2.5 mIU/L
Second Trimester, TSH 0.2 – 3.0 mIU/L
Third Trimester, TSH 0.3 – 3.0 mIU/L
The 2007 Endocrine Society’s clinical guidelines for the Management of Thyroid Dysfunction during Pregnancy and Postpartum included the following recommendations:[2]
If hypothyroidism has been diagnosed before pregnancy, thyroid hormone replacement medication dosage should be adjusted to reach a TSH level not higher than 2.5 mIU/L prior to pregnancy.
If overt hypothyroidism is diagnosed during pregnancy, thyroid function tests should be normalized as rapidly as possible to TSH levels of less than 2.5 mIU/L in the first trimester (or 3 mIU/L in the second and third trimester).
While TSH alone does not give a full picture of thyroid health and testing should include Free T4, Free T3, Reverse T3, and thyroid antibodies, this one guideline could have saved my child…if my doctor had read it.
Throughout my first trimester, my TSH remained higher than the above recommended 2.5 mIU/L, soaring as high as 10.0 mIU/L. My doctor said that everything was fine and that TSH was only a concern in pregnancy above 10.0 mIU/L.
Wait…rewind…yes you read that correctly.
My doctor was not concerned about my TSH levels near 10.0, because she was not aware of the danger to pregnancy with a TSH at that high range, and I wasn’t aware of it either.
According to a study published in Thyroid in 2010, three waves of mail surveys were distributed to 1601 Wisconsin health care providers with a history of providing obstetric care. Survey participants were members of the American College of Obstetricians and Gynecologists or the American Academy of Family Physicians. The study determined that ONLY 11.5% of providers actually read the 2007 Endocrine Society’s “Guidelines on the Management of Thyroid Dysfunction During Pregnancy and Postpartum.”[3]
In another study a survey was distributed to 260 surgeons attending the 2009 American Association of Endocrine Surgeons’ meeting. ONLY 23% had read the 2007 Endocrine Society’s guidelines. Reading the guidelines was associated with a significantly greater likelihood of the doctors informing patients of the TSH guidelines for pregnancy, however I repeat only 23% actually read the guidelines.[4]
If only my doctor had just read the Endocrine Society’s 2007 clinical guidelines, my child may be alive today.
I can’t go back in time no matter how much I wish it, however I can make sure this never happens to another baby ever again. I can do everything in my power to drive awareness about thyroid disease in pregnancy.
The American Thyroid Association has issued multiple public health statements to warn about the dangers of thyroid disease in pregnancy.[5] Thyroid disease increases the risk of pregnancy complications, such as miscarriage, still birth, infertility, maternal anemia, pre-eclampsia, placental abruption, postpartum hemorrhage, premature delivery, low birth weight, congenital malformations, and impaired brain development in infants.[6][7] Despite the warnings, not all doctors know the ramifications of an undiagnosed or under-treated thyroid condition on a mother and her fetus, and very few patients know the facts to insist on proper testing.
I had to learn this the hard way by losing a child.
There is ongoing debate over universal thyroid screening in pregnancy. The argument is that there is insufficient evidence at this time to recommend for or against universal thyroid testing at the first trimester visit, however, the scientific research is mounting to show that even mild thyroid dysfunction can have serious adverse effects on mother and child.
What happens to all the women and their babies while we wait for thyroid screening to become universal in pregnancy?
In 2014 the American Thyroid Association reported that, according to recent World Health Organization (WHO) estimates, thyroid disorders affect 750 million people worldwide, making them even more prevalent than diabetes. Conservative estimates find that at minimum there are 27 million Americans with thyroid disease, but experts believe that the actual number is closer to 60 million – at least half are undiagnosed.[8]
According to Endocrine Facts and Figures, first edition by The Endocrine Society released 2015:[9]
Given these statistics there are pregnant women worldwide this very minute with thyroid disease but they don’t know they have it and their doctors are not aware they are at high-risk. Women may experience miscarriage, still birth, infertility, failed IVF, maternal anemia, pre-eclampsia, placental abruption, postpartum hemorrhage, premature delivery, and births of babies with ADHD and autism, but they will have no idea their thyroid was a problem.[10][11]
Elie Wiesel said, “Whoever survives a test, whatever it may be, must tell the story. That is his duty.”
This is my story. I feel deep within me that it is my duty to share it, so that not one more child will be unnecessarily harmed from maternal thyroid disease.
The day I signed a book contract with Perseus Books/Da Capo Press along with New York Times bestselling author Mary Shomon my eyes were overflowing with tears that I could barely read the words. My book contract is filled with markings from my tears of sorrow and joy. We will save babies with our book Your Healthy Pregnancy with Thyroid Disease: A Guide to Fertility, Pregnancy, and Postpartum Wellness.
We interviewed leading experts on hypothyroidism, Hashimoto’s, hyperthyroidism, Graves’ disease, thyroid nodules, goiter, thyroid cancer, gynecology, obstetrics, infertility, and more, to create the first book of its kind. Part 3 provides comprehensive checklists including testing, treatment, dietary changes, and supplements, so that you will know more than even your doctor about making babies with thyroid disease.
I failed to be an advocate for my own child and I have to live with that regret for the rest of my life. I will never let this happen again. Now with my new book I am standing up loud and strong as an advocate for mothers and babies around the world, in memory of my lost child.
References:
- Stagnaro-Green, A., Abalovich, M., Alexander, E., Azizi, F., Mestman, J., Negro, R., Nixon, A., Pearce, E.N., Soldin, O.P., Sullivan, S., and Wiersinga, W. Guidelines of the American Thyroid Association for the Diagnosis and Management of Thyroid Disease During Pregnancy and Postpartum. Retrieved from http://thyroidguidelines.net/pregnancy
- The Endocrine Society. Management of Thyroid Dysfunction During Pregnancy and Postpartum: An Endocrine Society Clinical Practice Guideline. Journal of Clinical Endocrinology & Metabolism 2007; 92(8)(Supplement):S1-S47
- Haymart, M.R. The Role of Clinical Guidelines in Patient Care: Thyroid Hormone Replacement in Women of Reproductive Age. Thyroid 2010 March;20(3):301-307
- Haymart, M.R., Cayo, M.A., Chen, H. Thyroid Hormone Replacement in Women of Reproductive Age: Is Surgeon Knowledge Related to Operative Volume? Thyroid 2010 June;20(6):627-631
- American Thyroid Association (2012, June 4). Thyroid Disease and Pregnancy. Retrieved from http://www.thyroid.org/thyroid-disease-and-pregnancy
- American Thyroid Association. American Thyroid Association Statement on Early Maternal Thyroidal Insufficiency: Recognition, Clinical Management and Research Directions. Thyroid 2005; 15(1):77-79
- American Thyroid Association. General Information/Press Room. Retrieved from http://www.thyroid.org/thyroid-events-education-media/about-hypothyroidism
- Newswise (2014, May 21). American Thyroid Association Announces 7th Annual World Thyroid Day May 25, 2014. Retrieved from http://www.newswise.com/articles/american-thyroid-association-announces-7th-annual-world-thyroid-day-may-25-2014
- Endocrine Facts and Figures, first edition. Endocrine Society. Retrieved from http://endocrinefacts.org/health-conditions/thyroid/
- Román, Gustavo C., Ghassabian, A., Bongers-Schokking, J., Jaddoe, V., Hofman, A., de Rijke, Y., Verhulst, F., Tiemeier, H. Association of gestational maternal hypothyroxinemia and increased autism risk. Annals of Neurology 2013 November;74(5):733-742.
- Andersen, S.L., Laurberg, P., Wu, C.S. et al. Attention deficit hyperactivity disorder and autism spectrum disorder in children born to mothers with thyroid dysfunction: A Danish nationwide cohort study. BJOG 2014; 121:1365–1374
About Dana Trentini
I experienced two miscarriages in 2020 both between 6-8 weeks. I had been diagnosed with uterine fibroids after my first miscarriage, and told both miscarriages were simply because my pregnancies were not viable and that my babies most likely had a chromosomal anomalies. Two different doctors couldn’t explain why I lost my babies around the same gestational time period within months of one another. NEITHER of the doctors tested my thyroid levels… I have been experiencing incredibly dry scalp/skin, depression (I had thought was due to the loss of my babies), constipation, and my I just had two separate heavy menstrual periods one week apart from each other this month that led me to research more about what I was feeling in my body. This information has been eye opening…why wasn’t my thyroid levels ever tested since my mother and aunt have diagnosed thyroid irregularities, even after losing my first baby? I wish more women knew about all the things to bring up in visits with doctors especially after losing a baby. I am visiting my primary physician to be tested in two days and know in my gut that more answers will be revealed. I hope this information finally has led to a journey with a happier ending and hope I may honor my Angel babies by telling more women about this site and to have their thyroid levels checked since both my doctors failed to take this simple blood testing step that could’ve possibly saved at least my second baby. I am hopeful there will be a baby in my future with more answers soon.
I have hypothyroidism I had a miscarriage at 4.5 weeks pregnant and thinking it is all because my thyroid levels were wrong doctor gave me a prescription for a new dose if I got pregnant changed my dose as soon as I found out that I was expecting wanting to try for my rainbow baby but dont know what to do help please
I too was diagnosed with Hashimotos disease following the birth of my 1st daughter in 2006.
That in itself was a long process, as doctors at thr time would not check my antibodies,
I have a nursing background and i was working as a Naturopath at the time so i pushed for testing.
I fell pregnant in 2011 with my second child and was seeing an endocrinologist at the time who said my TSH levels were fine at 4.2 and levothyroxine was not necessary.
On the day of my 12 week scan i knew in my gut things were not right i was told there was no longer a heart beat.
I spent the next 6 months researching and presented the endocrinologist with as many findings as possible, she still denied any relevance and put the loss down to just one of the statistics.
I did as much work on my body as possible to try and get my antibodies down and it did lower, i tried to concieve again it took 6 months, when it happened i was terrified,
I demanded testing every fortnight for the duration of my pregnancy and adjusted medication to adhere to the recommended guidelines.
I gave birth to my 2nd daughter in June 2012.
This same thing happened to me in April of this year. I made an appointment as soon as i knew i was pregnant, referred by my Endocrinologist (who said she would monitor my labs through them) and I told them I had hypothyroidism EVERY TIME I talked to them in person or over the phone. Finally, after miscarriage (at 11 weeks), I got someone to take my labs to check my hormones. Sure enough, TSH above 10. I miscarried two months later and my TSH was at 8. I have now bought your book, researched the internet and the ATA website. As soon as I get another poitive, I am increasing my dosage immediately by 30%, and found some prenatals that are better, and am increasing my Iodine intake. I am so grateful for champions like you that get this information out. I know God gave me all this knowledge to save my babies. Huge hugs!
My heart goes out to all you moms that have had to go through such difficult circumstances. I’ve been suffering with symptoms for over 15 years and was just diagnosed with Hashimoto’s/ hypothyroidism just under 6 months ago. I thank the lord for the doctor that diagnosed me, and who has helped me manage and educate myself with my condition as I just learned I’m pregnant with my second child. I’m 6-8 weeks along and already experiencing some shortness of breath and abdominal discomfort, just wondering if this is “normal” for those with hypothyroidism and other similar cases this early on in their pregnancies?
Hi Nisha, Be sure to have your doctor test your thyroid asap. It is common to require increases in thyroid medication in early pregnancy. I required two increases in thyroid medication dosage with the pregnancy of my second son. Congratulations on your pregnancy and good to have you at Hypothyroid Mom.
Thanks, Dana! I just got some labs drawn today… we should hopefully know more soon. I appreciate your advice and you sharing your experience very much.
I have just read this article , I feel sick and my worst nightmare is confirmed. I lost my baby son in 1982 a stillbirth at 39 weeks After taking high levels of Carbimazol throughout my pregnancy. He was born with his Intestines on the outside. The hospital tried to turn him at 36 weeks and must of ruptured something. I bled and he had been dead for a while. I went through a 10 hour Labour ,I didn’t get to look at him as they said he was Macerated . Tis means he would of looked liked somebody that had drowned. This could of all been avoided if I had been looked after. Also my Eldest Son of 32 has Adhd and Autism, I am devastated that after all these years it could of been my fault for not knowing my Thyroid illness could have caused this. If there are any researchers that would like to talk to me about this I would be grateful.
I lost 2 babies and then decided to give up because I was already at an advanced age (early 40’s). I am fortunate that I was able to have one child, who is now a healthy 16 year old! I am also O(neg). I suspect being pregnant once with a + child may have created some antibodies that attacked future pregs, but no one ever checked that. They also NEVER ran thyroid labs during the subsequent pregnancies. I blame the docs, but it’s all in the past. Thank the Lord for people like you who help us educate ourselves!!
I lost 8 babies before I finally got my diagnosis. Silly me thought that being under the care of a reproductive endocrinologist that she would be looking at my thyroid. Wrong, she pushed for costly infertility treatments not covered by my insurance. I was blessed with two healthy children but not a day goes by that I don’t think of the other 8 that never got a chance to live.
Hi…
I have a question about MY SIL…she is diagnosed with hypothyroidism since her childhood on meds regularly…Now she is pregnant 12 weeks with C/o very tired like same how to describe urself…I tried to ask her to check her thyroid level T4-1.4ng/dl and dr says its normal no need for other tests..am worried about her health and regular c/o headache and tired all the time,was not able to eat talk for a while breathless…
Can u pls advise me what can be done to avoid any miscosequences…..
Oh I am in tears reading this … I too have Hashimoto’s thyroiditis diagnosed after the birth of my first daughter……I then went on to miscarry our next two babies due to my thyroid levels 🙁
I then had two healthy pregnancies (resulting in live healthy daughters), after which I had a late miscarriage at 18weeks (a son) due to thyroid levels 🙁 🙁 🙁
I since have given birth to our fourth living daughter 🙂 but like you still question why I had to loose these precious babes 🙁
You give me hope that you were still able to have healthy term pregnancies even after your thyroid diagnosis. If you are comfortable, could you please share what you did differently/ your experiences during those successful pregnancies? I just had my second miscarriage (both around 8 weeks) and now I am beginning to doubt if we should even keep trying.