Hashimoto's, hypothyroid, and pregnancy

[Dakota1235]

Hi I'm just looking to talk with other women who have Hashimoto's thyroiditis and/ or hypthyroidism and either are or have been pregnant. I'd like to hear your experiences, and bounce some ideas around.

I have Hashimoto's, diagnosed in 2009 after a miscarriage followed by years of infertility and years of struggling to get a doctor to listen. My TSH has been well controlled for a little over a year and it was hovering around 1.5 at the time we conceived.

I really struggled with getting my PCP (who had been helping me control my thyroid) to listen to me when I requested labs and a dosage increase @ 4 weeks. My Ob/gyn was totally clueless about anything thyroid and frankly if I didn't do my own research I would have probably just given up when the 2 offices kept referring me back to each other.  My TSH was 2.52 which is at the high end of normal for the 1st trimester (ref range (.25 - 2.66). The PCP wanted to leave as it is and retest in 4 weeks, but I was really concered that it would continue to rise and be too high during very critical embryonic development periods. So she referred me to an endocrinologist, and with persistence (read: calling ALL the time to see if they had a cancellation) I was able to see her at about 5.5 weeks along.

What a reassuring appt. She agreed we should try to keep my TSH under 2 during my pregnancy and increased my dosage to 100mcg from 75mcg. Then retest @ 10 weeks. I'm currently 10.5 weeks along and got my results from my TSH today an it was 3.13. I called the office to see if they'd be increasing my dosage and was told by the nurse that my results were normal. And they are, for someone who's not pregnant, after I pointed this out she asked if the doctor knew I was pregnant... Well uh yeah I sure hope she does, well a few hours later they left me a message saying that after reviewing the results the doctor wants to increase my dosage.

I find myself getting so frustrated. I would love to be able to trust that my doctors are doing the right thing, but I am finding such a profound lack of knowledge and care around Hashimoto's, hypothyroidism, and pregnancy, that I find I can't trust them. I wonder about the women who are not able to advocate so strongly and what happens to them and their babies.

Has anyone else experienced anything similar? How did your Hashimoto's pregnancy go? What care providers did you work with? Did they consider you high risk?  Did you have any complications? How are your babies now?

[martaluna]

Hi there,

I have Hashi's and just recently find out that I'm pregnant. I haven't taken the meds for more than 6 months and got pregnant pretty much as soon as we found a good dose. I'm lucky that I found a good caring endo, who is treating mostly by symptoms, not only labs. She told me right away I will have to do labs each month and she is typically quick to prescribe higher doses. She is the second doc I went to, the first one, I really didn't get a good vibe with. If you can, try changing docs. I haven't been to my OB yet, not even 8 weeks, so not sure how everything turns out and if they will consider me high risk. I have a friend though who works in OB practice and specializes in high-risk pregnancies, and she told me that typically women with hypothyrodism that is treated, so well. I really hope so! Good luck to you!

[Chrisa]

Dakota, please don't give up, your dose clearly needs to be increased. I would call back and insist to speak with the doctor. Or tell the nurse that you specifically discussed with your dr. the need to have the TSH less than 2.

It's very important to keep your TSH stable in the first trimester. My endocrinologist likes to see it at 1-1.5 during pregnancy.

[TeresaH00]

This is my 4th pregnancy. My labs have always been fine during all my pg and I haven't needed to change dosage. I see an endocrinologist usually once a trimester. She gives me lab slips or I ask the MW to add them on when I'm having other labs and send them to her. Sorry your having such a hard time. I would ask to speak directly s the doctor about your concerns.

[camprunner]

You should never have to struggle to get labs if you live in the US. There are lots of places that will allow you to order labs yourself (DirectLabs, MyMedLab, etc).

Getting the higher dosage is a whole other issue.

[tiqa]

I discovered very early on that I had a level of 7.5 I think.  I never had issues with thyroid labs before - we were going to test my thyroid before I conceived because I had a few symptoms over the last year, but nothing extreme.  It was just going to be a "well, to be on the safe side we'll check" - and then I was pregnant and with a high level.  Nice.  I'm now almost 15 weeks and my levels with a very low dose of meds fell to 4.2 or something like that.  Still not good.  I'm not happy that during my first tri my levels were DEFINITELY elevated, but... not really a lot I can do about that now. 

I don't know what's up though because although I had a bit of a weight gain in the past year before conception (about 10 lbs in six months), I didn't feel tired/depressed, my hair wasn't dull, etc.  - all the stuff that people associate with hypo.  My periods were just a little more irregular than normal (like a week or so short or late instead of 28 days on the dot), I didn't conceive right away but rather took about six months of not-trying-but-not-avoiding (unlike our other conceptions which happened within the first month of TTC)...  That's all, really...

[violetdevendra]

Hi there- another Hashimoto's mama here.
I have had two pregnancies with my Hashi's being monitored and this required monthly bloodwork and seeing the endo every 3 months for physical check up. 
She really stayed on top of things but what you are doing is great...continue being proactive. I am planning to call my endo tomorrow bc I am newly pregnant again after an early loss last month. She had upped my synthroid dose to 100 mcg and upon hearing I had lost the pregnancy, she wanted me to wait a month to retest so my levels could even out. I wonder what she will say to hearing I am pregnant again so quickly.

I don't think my loss had anything to do with my thyroid bc I had it monitored early on and my levels were normal.

I do credit my endo and having good care for my two wonderful kidlets!
Best of luck to you mama.

[TIFF4NY]

They didn't even find anything wrong with me until I was just out of the first trimester. First I was subclinical hypo and then they found Hashi's. I was put on 200mcg of synthroid right away and am still on it at 20+ weeks. No negative affects that I have noticed and the baby looks great. I have never been told what my numbers were and never thought to ask... My next appt is on the 13th so I'll have to ask for that information.

I didn't have any issues getting pregnant with #1 or #2 and thankfully I have not had any losses. I suspect this could have been triggered with the pregnancy/birth of #1 because despite eating a Paleo diet and working out regularly, my weight never budged once she was born and I had that initial drop. I was on a Whole30 the month I got pregnant so maybe that had something to do with it but I don't know for sure. 

I'm anxious to get through this pregnancy and see what my body does. Though I have to ask if anyone here breastfed with Hashis? It's important to me to breastfeed so I hope the meds don't hurt the baby in any way.

[1babysmom]

Originally Posted by TIFF4NY 
I'm anxious to get through this pregnancy and see what my body does. Though I have to ask if anyone here breastfed with Hashis? It's important to me to breastfeed so I hope the meds don't hurt the baby in any way.

Before I was dx'd (but know it was already an issue for me), I was still nursing THREE children and pumping to donate. ;)  I was dx'd as DS weaned due to completely unrelated circumstances ( :( ).

[mamaki]

I am hypothyroid. I had Grave's disease and had radiation treatment so am now on synthroid for life (current dose 1.25mcg).

I have three kids age 8, 5 and 28 months. I struggled with low thyroid levels in all three pregnancies, especially the last 4-5 months when it seemed to tank. All my kids are fine, no issues so I guess even though my levels were low at times they were not affected.

My advice is just make sure your levels are checked often - at least every 6-8 weeks. And make sure your dose is changed based on your levels.

[mamaki]

Btw - my thyroid issues did not seem to affect my fertility at all and it has not affected breastfeeding either. I have always had a great milk supply and nursed my older two until 20, 22 months and am still nursing my 19mo.

[TIFF4NY]

Thank you for the responses about bf'ing. I'm relieved to know I should be okay.

[areal42]

I have also had a horrible experience. I have struggled with hypothyroid and now I know, Hashimotos, symptoms for 2 years it wasn't until the third endo when I finally got a dx. But he said I didn't require treatment bc my TSH was fine. I had a miscarriage in May. I started seeing a naturopath 3 months ago and am now 5 weeks pregnant. My Dr left the clinic so I got into see a nurse practitioner (very small clinic and everyone else was booked) just to get labs drawn. She wouldn't do most of what I requested to be checked. Then when my TSH came back at 4.33 she told me I was fine! So my naturopath is starting treatment with Armour. I see a new dr in a week and hope she is comfortable working with me and my naturopath. I'm very nervous! And I hope my next blood work shows a decrease inTSH. How are the babies that have been delivered by women on this post? Did you see any effects of the high TSH?

[LorienIslay]

I was diagnosed with hypothyroid last April when my son was 2.5 and we'd been TTC for over half a year. My TSH was 143 (not a typo) and I was literally on death's door: cardiac issues, BP 190/120, having to rest midway in my tooth-brushing... My son was still nursing a few times a day. I was kind of expecting the diagnosis: of my mum's five siblings, her plus three out of six kids have had hyper or hypo thyroid issues. I just wasn't expecting it to get so bad so fast!

I was pretty well informed (and the website Stop the Thyroid Insanity) was also very helpful. I requested (and got) Natural Dessicated Thryoid. I started at three pills a day and went up to four (and then to five a month into pregnancy). I've been asked by midwives to do monthly thyroid blood tests, and my numbers have been ok -- 0.45 at last check.

[deborahbgkelly]

Make sure you also get on Prednisone in the first trimester. The same antibodies that attack our thyroids can attack baby. I am on the Prednisone until about 12 weeks. I am lucky that I did IVF because that is the first thing REs (Reproductive Endocrinologists) test for and treat.

[cardigan]

I've had hashimoto's for 10 plus years. Coincidentally, I had my thyroid checked right before I conceived (tsh .75) on 125mcg. I bullied my way into the Dr once I had a + preg (5w) and cajoled the resident to confirm that I needed my meds upped, she upped my meds to 150mcg. At 7 weeks, blood was tested and was ok, (dr did not tell me tsh level, which is one of many problems w dr) but at 8 weeks, tsh was up to 2.76 so now week 9meds are 200mcg.

So, I'm thrilled dr is testing frequently, and reacting to test results. Bc of Hashimoto's I'm designated 'high risk' But I have yet to receive any explanation of how and why we treat thyroids during preg (aside from google) nor why my ultrasounds will be done by specialist.

[veggieviola]

Originally Posted by mamaki 

I am hypothyroid. I had Grave's disease and had radiation treatment so am now on synthroid for life (current dose 1.25mcg).

I have three kids age 8, 5 and 28 months. I struggled with low thyroid levels in all three pregnancies, especially the last 4-5 months when it seemed to tank. All my kids are fine, no issues so I guess even though my levels were low at times they were not affected.

My advice is just make sure your levels are checked often - at least every 6-8 weeks. And make sure your dose is changed based on your levels.

mamaki, this is very reassuring!

I was diagnosed with Hashimoto's 6+ years ago.  My TSH has been managed consistently for the majority of that time, and my midwife did not at all consider my condition to put me into a high risk pregnancy category.

I did have blood work done a week or so ago, and it came back elevated (from 1.75 up to 5!), and my endo immediately upped my synthroid dose from 137mcg to 150mcg.  I'm a little worried that it spiked like that over the course of just a few weeks!  I'll go back to test again in another week, which will be two weeks since the dosage change.  Once my TSH looks normal again, I will continue with once per month monitoring.

To anyone having issues with their GP managing their Hashi's, I would highly recommend seeking the care of a good endocrinologist!

[hermesgoddess]

I was DX'd Hashimotos back in 2001. This is my first pregnancy. I luckily have a great Endo who is all about testing frequently in the first trimester. When he knew that DH & I were about to start trying, he told me to call as soon as I got a positive pregnancy test to set up an appointment to come in... I did. The first time I could get in for my appointment was at about 8 weeks (partly because I got delayed in calling). My TSH was 22.1! I nearly fell off my chair when he told me... He immediately upped my dose by 25mcg (but sent in a script saying to take 2 - 25mcg pills in addition to what I was taking - 150mcg - this way if when we retest in 2-3 weeks and there isn't enough change we can just up to 50mcg increase)... He sent me home from my appointment with 3 lab scripts. One for 2 weeks out. One for 6 weeks out & one for 8 weeks out... Now I have a 4th script that I am to use instead of the original 2-week-out script because he wanted to test some other antibody (not the normal Hashi's antibody)... I can now use that 2-week-out script whenever I want in between everything else or at the end of everything... The good news is that your levels should balance out after the first trimester.

I was on 150mcg before getting pregnant. Did not have any fertility issues as we got pregnant on our first try. My TSH was at 0.68 before we got pregnant. And in only 8 weeks jumped that far! I have my follow-up labs next Thursday (1/31) - dose increase only went into affect last Tuesday (1/15) after he called with the lab results on Monday.

I was super nervous when I found out what my labs were, but doc reassured me that as long as we stay on top of it & adjust accordingly, we're OK... For the most part baby takes what baby needs and leaves mom with the rest (in my case that won't me much as evident my how much TSH was floating around my system)...

[Kdiaz]

Hi everyone, I also have Hashimoto's thyroiditis.. I'm 31 and am having my third child in October 2013.... Just found out I'm four weeks. When I had my first two, 11 and 10 years ago I had no idea whether or not I had this. I had no problems with my lab values back then but did have a difficult pregnancy with my first. (Not due to my thyroid) however I called my Endo right when I thought I might be pregnant and told him I want to be tested every 4 weeks (cause that is what I read somewhere) and he put in for the standing order. Just called to find results but not in yet.. I'm very curious to see where they are at. And a little worried too after reading some of these posts 😁 I hope all goes well for everyone!!

[Bean96]

I have Hashimoto's (diagnosed 9 years ago, at 21) and have a healthy 2 year old and am 30 weeks into my second healthy pregnancy.  So firstly, I hope this offers you some reassurance that it is possible to have a healthy pregnancy and babies with Hashimoto's :)  

From reading your post, my bet advise is to start a hunt for better care providers.  Your OB should be familiar with thyroid disorders and your edno should be more stringent with a pregnant patient.  I know there are endos who are specialized in pregnancy/fertility.  Perhaps this is what you need?

Your best advocate is YOU so whatever you end up doing and whoever your care provider is, continue to do your own research and be persistent when necessary as you have been.  Good luck!