[jclark31]

#1060676

Being hyperthyroid with a 16-week old is no fun. I thought that I lost the baby weight too easily but now the annoying symptoms have appeared: jumpiness, hyper-vigilance and increased wakefulness. My problem is that since I’ve been having the symptoms (the last week or so) I’ve seen similar symptoms in my exclusively breastfed daughter. I know that my hormones are transmitted through breastmilk and am wondering if I should stop breastfeeding until my symptoms pass?

Background: I had labs taken on 11.2.15 and everything was within the normal range except TSH: 0.086 (normal range: 0.27-4.2) and free T4: 1.8 (normal range: 0.93-1.7).

My endocrinologist has reduced my dose of levothyroxine from 137 mg to 112 mg and we’re just waiting for the change to take effect.

I will follow up with my pediatrician and endocrinologist but wondered if anyone here may have answers in the meantime.

Thanks,
Jo

[Kimberly]

#1184071

Hello and welcome! Yes, definitely follow up with your endo and with your daughter’s pediatrician. I don’t have personal experience with this issue, but hopefully, others will chime in.

Wishing you and your little one all the best!

[snelsen]

#1184072

Same situation for me. My baby was 8 weeks. I did not stop breast feeding, but did ask someone to feed him at least once a day, cause I was so tired. At the same time, I was, of course, hyper and wakeful. I think he was more irritable until I had about a week of Synthoid. My peds end began me at a smaller dose for that reason. Began at 112, then decreased to 77mcg (i think that was the dose.)
The thought of stopping breast feeding was unthinkable to me at that time, for it was going so well. Doug was ore fussy than usual, and I was more fussy than usual! One doc finally got smart and drew thyroid labs. My TSH was .00something. Been a long time! I had a thyroidectomy when he was about 5 months old, friends brought him to me to feed. All fine for many decades, no replacement at all. Now I take a little Synthroid, my labs always indicate I should have a little more. Am taking 112mcg 6 days a week, 100 mcg 1 day a week. Id rather take 100mcg every day.
Thyroidectomy was easy, always glad i made that choice.
Shirley

[jclark31]

#1184073

Thanks Kimberly and Shirley for the replies. Shirley I’m glad that all turned out well with your son.

I just want to post an update in case this may be of help to others.

After I contacted her, my pediatrician called the on duty endocrinologist at Children’s Hospital Boston (CHB) and it was decided that my daughter should have a blood test. My pediatrician called me yesterday as some (but not all) of the results were back from the test. My daughter’s free T3 levels were normal but her TSH was slightly below normal range. My pediatrician said that since this was outside of her specialty she felt it best that we make an appointment with an endocrinologist at CHB which has been scheduled for January 6th.

I also called my endocrinologist and received a telephone message via a receptionist that “it was less likely due to the thyroid” and that I should stop my levothyroxine for one day. I’m not sure what this means but don’t plan on following up by phone as I feel like my pediatrician and CHB have a handle on this now.

I have a follow up appointment with my endocrinologist on the 28th Dec and hope that my TSH and T4 will be back within normal range… although, my TSH levels have been sinking for a while so that may not happen.

I’ve decided that I will continue breastfeeding my daughter. Three MDs have been involved in this now and no-one has raised a concern that this is something that needs to be addressed immediately. The blood test results so far seem to indicate that the effects on my daughter are very minor. At this point I think that the benefits of breastfeeding outweigh any negatives.

Thanks again for your input. I’ll update again if I get any useful info.

Jo

Graves disease dx: Jan 2010 (managed with methimazole)
RAI: Jan 2013 (levothyroxine since)

[Kimberly]

#1184074

Thanks for the update – yes, definitely keep us posted!

[goldenwillow]

#1184075

New to the forum, however been lurking for quite some time, in which I will introduce myself properly at another time.

I just wanted to give you some support. I exclusively breastfed my son until he weaned at 3 1/2. I didn’t know I had Graves Disease- diagnosed when my Son was 5. He is a bright, healthy boy. I do have his labs drawn occasionally to check for antibodies since autoimmune is genetic and in the cards possibly in his future.

I wonder if you have local breastfeeding support?

[snelsen]

#1184076

I also breast fed my baby when hyper and on meds.

My only thought about local breast feeding support, as goldenwillow mentioned,
is that it sound like breastfeeding is going along well for you. If it is not, then maybe so. But with the medical advice you are having, and the fact that another typical breastfeeding mom will not have a clue at all about your other issues, I do not advise that. Unless, as I said, you want breastfeeding support ONLY. But I would not confound that issue with the rest of your medical history. They would not understand. You are getting super good care and advice.
Shirley

[jclark31]

#1184077

Hi All,

goldenwillow and snelsen, thanks again for the positive comments. It helps to know that others have been though this. Yes, breastfeeding is going well for the most part. No issues right now.

I just received a call from CHB saying that “based on information from my pediatrician” they are moving my daughter’s endocrinology appointment to Monday. Haven’t been able to receive clarification on this as yet as my pediatrician is still busy with office hours. I have a feeling it’s going to be a long weekend.

[goldenwillow]

#1184078

Great to hear. I am curious about your daughters appt, if you would like to share. How did it go?

[jclark31]

#1184079

Hi All,

Apologies for the delay in updating. December was incredibly busy at work. The short version is that everything is fine. The long version is below.

Our pediatric endocrinologist appointment was moved to December. My daughter was evaluated by a resident pediatric endocrinologist (RPE) at Children’s Hospital Boston (CHB). After arrival, my daughter was weighed and measured. They tried to get a blood pressure reading but couldn’t because of her wiggling about.

I was asked about my daughter’s sleep and eating habits (I hadn’t noticed any major changes in these). The RPE paid a lot of attention to the weight and height information sent over by our pediatrician. The RPE examined my daughter and tested her for neonatal reflexes.

After the examination the RPE went and spoke to the attending pediatric endocrinologist (APE) who then came into the room to discuss.

In answer to my original question, they were unconcerned about me transmitting high levels of thyroid hormone to my daughter via nursing. They said that the amount transmitted in breast milk is so small that it would not have an effect.

So really they were evaluating her for some sort of primary thyroid defect. Massachusetts has a program where all newborns are screened for a number of diseases. They told me that my daughter’s thyroid test results were all normal at birth. She had blood drawn in November and for those results she had normal T3 and T4 and slightly low TSH levels. They said that as she is so young her hormone levels are still adjusting and the ‘normal range’ is somewhat arbitrary, so the TSH result was likely nothing to worry about. Finally, because my daughter is growing well and gaining weight they all but ruled out any thyroid problems at this stage.

They offered us another blood test to look at her thyroid hormones but at this stage we were so reassured that we said that we didn’t feel the need to put her through that. Both the RPE and APE were OK with that. They gave us their business cards and said to contact them if she starts refusing food or stops putting on weight. We are very relieved that everything is OK.

Incidentally, I found out why my TSH has been weird: post-partum thyroidosis. My TSH was 0.086 in November and 25 (!) in December. This crash had put my T4 at 0.96 the lower end of the normal range (normal range: 0.93-1.7) at the time of the December blood test. So in a month I’ve swung from slightly hyper to almost hypo. I felt like I was walking through treacle last week and felt pretty depressed the prior weekend. Good to know that it was *just* my thyroid again. It’s a roller coaster!

Thanks again for all of your support.

Jo

Graves disease dx: Jan 2010 (managed with methimazole)
RAI: Jan 2013 (levothyroxine since)

[Kimberly]

#1184080

Thanks for the update – wishing all the best to you and your little one!

[Author]

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