Maternal Hypothyroidism and Autism in child? - Thyroid UK

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Maternal Hypothyroidism and Autism in child?

savannah11 profile image
31 Replies

Hi, I have been reading a little about this and was wondering if anyone has any experience with this? A few questions:

1. Did you have hypothyroidism during your pregnancy?

2. Was it treated? Or did you find out after the child was born?

3. did your child subsequently develop autism (or ASD)?

I have hypothyroidism and am very worried about this. Would appreciate any responses from the group.

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savannah11 profile image
savannah11
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31 Replies
Marz profile image
Marz

I think the fact that you know you are Hypo is a blessing in many ways - as hopefully you are able to be adequately treated and prevent any problems.

nightingale-56 profile image
nightingale-56

I was not treated while pregnant with my son while I had Graves and he has some Autistic traits. Had a sub-total thyroidectomy while 14 weeks pregnant with my daughter and she is fine. Think all should be treated optimally while pregnant.

shaws profile image
shawsAdministrator

I think a few women experience hypothyroidism for the first time after pregnancy. The fetus gets his/her thyroxine from the mother in the first few months so maybe that's what triggers mothers' hypo. This is a good site for mothers and mother-to-be or for people trying to get pregnant or keep well during pregnancy.:

hypothyroidmom.com/undiagno...

minus profile image
minus

i think i had hashimotos whist expecting and found i was hashimotos 9 years after having my daughter but suspected i had a problem for a few years and tried to get drs to find out why i was unwell, ended up diagnosing myself recently. my daughter was found to be autistsic at about 2 years old but suspected when over 12 months as slow to develop stages, walking, talking etc. it annoys me as if i had known about thyroid before pregnant i wonder if i could have prevented it. having said that epstein barr virus and cytomegalvirus can be passed from mum to child and can cause mental functioning problems. I had glandualr fever at 13years old, had an enlarged spleen, then at 17 years old had a relapse with ulcerated throat again. Im sure that has an effect too.

savannah11 profile image
savannah11

thank you all, I am interested to see if anyone had a diagnosis and was treated late in pregnancy and the results of that for the child. A lot of the information I'm reading online, Including on some influential blogs suggests that even in those cases, there have been results of ASD in children.

Marz profile image
Marz

Also having a baby over 8.12 - or thereabouts - indicates the thyroid hormones in the Mum were low and then the baby produce their own growth hormones to compensate. Both my babies were around 9 lbs or over :-)

Marz profile image
Marz in reply to Marz

Think I was trying to illustrate the importance of good thyroid hormones.....

PinkNinja profile image
PinkNinja

My son has mild Asperger's but functions very well and is very intelligent. I was, however, diagnosed before pregnancy and was very well during (I was on t3 at the time, I think). I love him to bits and wouldn't change him one little bit.

My daughter is neurotypical yet I was rather hypo during pregnancy until it was noticed at around 24 weeks and my dose (then thyroxine) was increased. This seems to fly in the face of the research suggesting an increased risk of ASD in children of hypothyroid mothers. I do, however, believe there is some link and would like to see all women tested for hypothyroidism before and during pregnancy to avoid this and other complications.

There also appears to be a link with the MTHFR gene mutations. Mutations are significantly more common in people with ASD. It is involved in the methylation process (something to do with b12 and folic acid). There is also some evidence that maternal b12 deficiency may make offspring with ASD more likely.

Don't forget that genetics may also play a part. Hypothyroidism is only a part of the equation.

I wish you all the best.

Carolyn x

minus profile image
minus in reply to PinkNinja

I had genetic testing and so did my husband, there was no genetic predisposition to autism' but b12 deficiency could be a possibility.

rhetty profile image
rhetty in reply to minus

Hi minus, how and where can you get a genetic testing? I asked my GP but he refused. I am hypo and also have vitiligo and considering pregnancy. Thanks

in reply to PinkNinja

Sorry, late reply on this - just commenting in case someone searches the topic - autism is around four times more common in boys than girls, which may account for your experience. I have a non autistic girl and an autistic boy too (also v intelligent).

There seems to be a link, shown in quite a bit of research now, between low nutrients in pregnancy and autism, and of course low nutrient counts and absorption issues are very common in hypo.

susymac profile image
susymac

I wassnt treated or even diagnosed for several years after despite being very ill. I have one son with autism and one with high functioning aspergers

savannah11 profile image
savannah11

thanks to everyone for their thoughtful and considered responses. I'm getting more and more nervous about this as all I've read so far seems to suggest that there are a lot of people that had maternal hpothyroidism and whose child/ children developed ASD (except for the response from Caroline, thank you!). I can't seem to find any more people that say that although they had hypothyroidism, it was was treated and was in the requisite range during pregnancy and their child did not develop Autism/ ASD?

minus profile image
minus in reply to savannah11

Could eliminate the genetic link by having you and partner tested for autism related genes.

savannah11 profile image
savannah11 in reply to minus

Minus, that would help - where can I get this testing in the UK?

minus profile image
minus in reply to savannah11

here is some info from national autistic society about genetic testing autism.org.uk/24984

i got it arranged from paediatrician who diagnosed our daughter as autistic on the NHS, so ask for it at drs surgery.

in reply to minus

They have not yet found strong evidence that autism is genetic (except in a few minority areas) or widespread genetic markers. If they had, testing and abortion would be offered to all, because autism is so expensive to the state. That's why money was poured into looking for genetic markers for autism. The hope was to abort, as with Down's.

If they'd put that cash into carefully directed research on the mother's biochemical status before and during pregnancy they might have cracked it by now.

PinkNinja profile image
PinkNinja in reply to savannah11

Although there is a link (and this in itself is scary, I know) but I do know lots of people with hypothyroidism and no ASD children and many with ASD children and no hypothyroidism. However, that doesn't make things any better. The statistics still don't look good. Equally I know hypothyroid people with children with ASD :( I just know some lucky hypo people and some unlucky healthy people. I sincerely hope you are one of the lucky ones.

I wish you all the best xxx

Carolyn x

savannah11 profile image
savannah11 in reply to PinkNinja

thanks Caroline - i'm going to try to relax about this now, but feeling very uneasy.

in reply to savannah11

Hi , my doctor friend had hypothyroidism for years kept miscarrying until it was discovered she had hypothyroidism. It was treated and went on to have two normal sons. Don't be worrying.

Ctb567 profile image
Ctb567

Hi my mum has hypothyroidism and my brother has autism but she wasn't diagnosed with it until he was about 10 years old, I suppose you never really know how long you've had a condition or how long its been set in motion for. My brother has PDD and ADD and he was diagnosed with these pretty early (about 2/3).

Demc profile image
Demc

Hi all, I have been following this post with interest. As mentioned on previous post I have recently suffered a miscarriage and I am keen to prepare myself to try to conceive again. I had actually never heard of this link before so it has scared me a lot, another worry to add to the whole thing :(

I looked up the actual research and it says there is an increased risk of autism if at around 12 weeks the mothers 'free thyroxine (fT4) is less than the 5th percentile with normal serum thyrotropin.' I was wondering if anyone could explain that to me in simpler terms? Is that the 5th percentile of the normal range? I am on armour and my free T4 was always just under the the normal range (8.8 at last reading, with normal range starting at 9).

Thanks

inashoe profile image
inashoe

I think the thyroid issues is genetic & there is connection to autism, but if you are lucky enough to know you have Hypothyroidism before conceiving & are treated adequately before conceiving & in the pregnancy the risk is the same as a normal functioning thyroid.

Any pregnant woman with known thyroid issues should really be under a specialist team in her pregnancy The rule in a pregnancy is same for getting pregnant & staying pregnant applies with a TSH of 2.0 or under, but ideally around the 1.0 with t4 in upper range.

I also think the thyroid may go from normal to haywire in pregnancy rather that after birth as commonly thought. ( postpartum Thyroiditis)

I am a Mum of 10 + 5 Miscarriages, my kids have assortment of Dys problems & some Autistic spectrum (self diagnosed) the last 3 children with treatment in pregnancy for Hypo have no problems, neither does no 1 & 2 with 3yr 7mth age gap. Kids after MC, 2x have dyslexia of which 1 has some signs of autism/aspergers the 3rd after MC dyspraxia. I also had mild infertility probs after & in between MC & Babies 5,6,7, no 8 9 & 10 are Donor Egg IVF.

I have a sister with 2 kids + 3 x MC Both her kids have serious learning difficulties 1is diagnosed Autism the 2nd I think has some spectrums.

I also have a maternal niece with 2 children both Autistic 1 more than other, her thyroid issue was diagnosed after her 1st baby's birth who has Autism /aspergers , there is only a 13mth age gap & her 2nd child has autism.

My sister & i have been diagnosed in our 50s. My sister never had any breast milk & never had a period after her 1st birth & put on a lot of weight after, Her 2nd baby was born 5 yrs after 1st conceived after taking Clomid or Tamoxifen for many years, she later had 3 MC in her mid late 30s again on Tamoxifen fertility drugs due to no periods

My self i put on over 3stns in every pregnancy except last 2 on treatment for Thyroid of which i put on 1stn to 40wks & same to 27 wks with twins & had pre eclampsia.

Hi - you posted a while ago and now presumably have a baby! The study I found, and posted on the hypo forum, suggested that having thyroid antibodies increased the chance of autism, but full blown hypo didn't. I had thyroid antiobodies when last tested, and indeed, my son is diagnosed as Asperger's and,/or I believe, has attention deficit problems of the inattentive kind. However, it doesn't necessarily mean that it's the thyroid which causes the problem. It might be something associated with thyroid disorders, such as low iron. Looking back, I would say keep a close eye on your baby's iron intake and iron levels - and your own - and intake of folate, of course. Nutrition, in a word. And vit D. I had no idea, when my son was a baby, of any of this, and health workers were of no help. If you are breast feeding and have low nutritional levels of D yourself, and iron, that will be reflected in the milk, obviously.

You and the baby are not doomed just because of the hypo, and I wouldn't bother with genetic testing personally. Vast sums have been given to scientists to find "the autism gene" which have paid many years of scientists' mortgages, but there isn't one. The government hope in giving the cash for this research was clearly that there would be a test offered, as for Downs syndrome, to encourage abortion and save the state hundreds of millions of pounds.

mpmp profile image
mpmp

I have a child with autism(hes 7 and 2nd pregnancy) and only now (7yrs later) I'm beginning to feel that I am definitely hypo despite this being ruled out by initial blood testing and symptoms discarded by gp's in the last 12 yrs(1st pregnancy). Blood pressure went haywire just prior to and after birth and is no different now. I practically slept my way though my 2nd pregnancy so genetics aside I feel there is a link. I'm trying to get my list together currently before I revisit gp again.

Hello, My sister had hashimotos hypothyroidism and didn't know before she became pregnant at 40 , first child. The pregnancy ended up premature just a week under 7 months. Anyway as time went on after by age 3 her daughter was diagnosed with aspergers. She had a very difficult time for 3 years as her daughter as beautiful as she is was very hyper and various other symptoms hard to deal with. She's at school now age 5 and coming along with help.

We believe the hypothyroidism caused this problem with her daughter.

My sister only got treatment with levo years after the birth.

Really hard and sad

Mummio profile image
Mummio

V Late on this - but this is so important - PLEASE GET YOUR THYROXINE MONITORED FROM DAY 1 OF PREGNANCY - I had radioactive iodine treatment aged 18 and was left with no thyroid function relying 100% on thyroxine; following IVF treatment in my mid 30s I saw my GP at 5 weeks pregnant and asked to be referred to an obstetrician. My GP was reluctant and said that as 1 in 5 pregnancies ended in miscarriage, there was no point in starting care until seeing a midwife at 13 weeks! I pointed out my lack of thyroid gland and she reluctantly agreed that she would refer me to an obstetrician. I then asked if I should not have my thyroid monitored and she agreed that maybe it would be a good idea to get it tested (completely instigated by me). I phoned for the result and was told it was normal. On my own instigation I then made further blood test appointments at the surgery and checked over the phone each time being told it was normal. At 20 weeks when my obstetrician appointment finally came up I was told I had not had sufficient thyroxine in the crucial first trimester and that my child might be 'severely retarded'. It turned out that the GP had not bothered to tell the lab that I was pregnant and had simply relied on the lab interpretation of the results which were normal for a non pregnant woman - in pregnancy thyroid production will increase in someone with a thyroid gland as the developing baby needs it for neural development (I now know). A week later a consultant endocrinologist told me that my thyroid had been 'sub optimally replaced' which would impact on the brain development - but baby would not be 'severely retarded' - only a matter of a few IQ points he said and quipped that as my husband and I seemed pretty bright the baby probably could afford to lose a few points - I was not in the mood for laughing.

My child had severe tantrums and OCD behaviour from toddlerhood and I suspected autism when aged 3, finally getting a diagnosis aged 5. He is now aged 11 and has severe OCD, phobias and anxiety, sensory issues and difficulty with emotional regulation and many other issues. He has said many times that he hates his brain and wishes he was normal and wants to kill himself. I have given up work as he is only in school 2 hours per day as our heartless local authority does not believe in specialist schooling for autistic children and he sits in the 'inclusion room' with a TA - he would not cope in normal classes. My husband is spending his pension savings taking the LA to tribunal.

We love our son and he has great ideas. His imagination is amazing. But his condition causes him to suffer every day. It is difficult for his brother, my husband and me as it affects our day to day family life, but immeasurably worse for our autistic son who just cannot cope with his own brain. Society is not willing to support children with autism, constantly pressuring them to fit in when sometimes it is simply beyond them. The government cuts funding to local authorities yet delegates to them responsibility for these most vulnerable people. Officials in the local authorities employ 'clever clever' lawyers to come up with ways of denying these beautiful beings access to education and mental health support that might help them to live decent lives and elected representatives wash their hands of it. I would not wish it on any child.

When we first got the diagnosis in 2010 I googled autism and thyroid and nothing came up and I put it down to a genetic lottery and/or bad luck. However I ran a support group and found out by word of mouth that so many of the mums had some form of thyroid disorder that I thought of doing my own survey to try to establish if there were grounds for medical research. I thought I would google it again and I found that there is now research showing the link - Dr Gustavo Roman a neurologist and neuroepidemiologist has shown a link that there is a four fold risk of autism in children born to mothers found to be hypothyroid when tested in week 13. Clearly there are genetic factors in autism as well, and possibly environmental but it seems that hypothyroidism is certainly a big risk factor. Further research to establish the causal link is ongoing.

I do not know if the NHS has improved the screening for hypothyroidism in early pregnancy but if you are thinking of conceiving, the crucial time is the FIRST TRIMESTER as that is when the neural networks are being formed. I would advise anyone who is hypothyroid or has hypothyroidism in the family to ensure that they are properly monitored pre conception and through the first trimester by both an endocrinologist and an obstetrician and if you are told the results are 'normal' check out whether the lab is aware that you are pregnant.

Also there is a risk of miscarriage if under replaced (yes it happened again and I lost that baby whilst the GP dithered) and also it will impact on breastfeeding - get tested when your milk comes in - my GP thought no test would be necessary post pregnancy and I struggled to breastfeed finally discovering after 5 months of purgatory with breast pumps and exhaustion that I had a TSH of 18!

in reply to Mummio

Great reply, Mummio - I just tried to pm you but I am not sure it went off...

For those who like the full science, here is a link explaining how thyroid dysfunction affects development. It needs an alert brain and a lot of coffee though.

thyroidmanager.org/chapter/...

I know now that I had hypo when I was pregnant as I had all the symptoms but I wasn't tested till after I had my son. He has autism.

I know this is a super late reply but just been searching on connection to autism. During my first pregnancy a girl I kept getting very swollen and puffy and lost hair. I just put it down to pregnancy as I mentioned it to my midwife and she just brushed it off as nothing. I had a girl, she is not autistic but shows traits of it and also some symptoms of actually having an overactive thyroid, sweats a lot, has hypomobility, is very hyper and has attention issues. Doctors won't even look at her thyroid.

I pretty much went back to my normal weight within 12 months of having her but I was huge in pregnancy. I was always tired and drained but just put it down to something else.

My 2nd child was a boy and I felt awful after him and got definate thyroid symptoms, started losing hair, swelling and just couldn't lose weight. The GP did a TSH test which came back normal, at the time I had no idea about all the hormones involved and just accepted the results and carried on. He was diagnosed with ASD and had a developmental delay. He is now more high functioning and manages ok. 

My 3rd child was also a boy and after him it was very obvious I was suffering from hypothryroidism. The weight just piled on and I kept getting swollen, lost hair, skin went dry, exhausted despite taking vitamins and eating healthy and also walking 6 miles a day. He has been also diagnosed with ASD/autism and he is severly autistic. My 2nd child was not diagnosed with autism until I had already had my 3rd. I believe there is a definite link and that my thyroid took quite a long time to malfunction severely. Autism is also recognised a lot more in boys because they present with symptoms a lot differently to girls. Girls often get by in the background with Aspergers as they tend to mimic other friends and they generally don't tend to have the speech delays ECT that boys have. Each child with autism is different though.

Mizzle profile image
Mizzle

My daughter is almost 20. I had hypothyroid symptoms during pregnancy but only treated 2 years ago. I had been diagnosed with Clinical Depression when 18. My daughter, I love her soo much, is beautiful, kind and bright as a button. Her father, an Educational Pyschologist, believes she has attention deficit disorder. I believe she has a low threshold to stressors. Nontheless, she is lovely and brightens up many peoples lives.

Good luck, x x.

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