I am 13 weeks pregnant and unfortunately my hypothyrodism has been very pooly managed. Please can anyone help me?

I am 13 weeks pregnant and unfortunately my hypothyrodism has been very pooly managed. At 7 weeks my levels were as follows: 8.6pmol/L T4 and 35.73 TSH mu/L at 11 weeks T4 10.7pmol/ and TSH 13.36mu/L. Can anyone give me any experiences or medical advice on how this may havce affected my baby. I am going out of my mind with worry. I have just found this information and my dose has now been raised to 75mg. Thank you

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  • Dear 'worriedlady'

    your TSH should be kept below 3.5 in mid-trimester (12 to 24 weeks approx) adn your fT4 is believe it or not in an 'ok' range for mid trimester though the 'ok' range goes higher than that, in some hospitals up to 16.

    HOWEVER, bloods are only ONE SNAPSHOT of your health, your symptoms play a BIG part and a doctor should review your bloods and your symptoms together and strike a compromise which is good for you and your baby.

    I doubt you are feeling well right now with your results, do you?

    PLEASE PLEASE if you dont have an appointment with an obstetrician or endocrinologist make one asap.

    what dose were you on before? 50mcg? if you have just been raised to 75mcg please don't let them make you go any longer than 4 weeks MAX to review by taking new bloods and I can see you will most likely need another increase then x

    PS babies are very resiliant and it takes a lot of abuse for them to struggle, so well done for getting on top of this, you can watch that they 'do their job' now :)

  • Thank you so much for the reply. I'm feeling OK (a little tired) but worried sick about the neurological affect this has already had on my baby. Do you have any experience of this. Appreciate your honestly as I want all the facts. With my Ft4 being in an OK range do you know what affect my high TSH could have on the baby if any. I have my care in hand now no thanks to the doctors who failed to give me the detail of my results and told me all was well when it wasn't. Have agreat GP who is now supporting me and I am back with the consultant in four weeks for my next check. Thanks again!

  • Hi,

    I don't know if there is any evidence or 'scales/graphs' of when a TSH is too high to affect a baby, but I will back up what poppy said, babies take what they need off you first and are quite tough and yes looks like your TSH was high because your body was producing what you needed to keep going.

    Worrying off your head is not good for you, I know it's not much use for me to tell you not to worry, how can you not? you are a mother to be :)

    make sure to have your bloods tested 4 weeks on the dot from your increase and reviewed promptly so that you can have another increase if due (which is likely)

    hugs your way

    x

  • Just to let you know I was an undiagnosed hypothyroid patient when pregnant with my now 5 year old. Finding my records I saw that I clearly had a problem with my thyroid way back in 1995 and no one kept an eye on it. I was diagnosed when my little one was 8 months old in 2008. Just had parents evening and the teacher tells me my daughter is off the scale. Her reading is years ahead, no one in class can touch her (ok a little bit of mummy pride coming out now). My point is, try not to worry, your baby will take everything from you first and it seems that your thyroid has been going crazy making sure your little one is getting enough. But nobodysdriving is right, make an appointment now and don't let anyone fob you off.

    Good luck with your pregnancy.

  • Hi Poppy. Thanks so much for your replky. I am in bits and so angry as this was all preventable. Can I ask. Do you know what your levels were for FT4 or TSH?

  • During pregnancy I have not a clue because I was never tested despite having two miscarriages before my little girl and other autoimmune conditions. However, when diagnosed I was at the lower end of 12 for my T4 on a scale of 9-23 and my TSH was 8.17. My antibodies were off the scale of over 1,000 as they stop at 1,000 and I had all the symptoms of hypothyroidism but just didn't know it.

    I completely understand where you are coming from on this. I have been unable to track down my daughters TSH result that they do in the heel prick after they are born as I wanted reassurance that she was fine then. The Drs/health professionals just look at you like you are crazy. I will say that my daughter is incredibly healthy, very bright and a total blessing. She shows no sigh whatsoever of being affected by this.

  • Thank you

  • Apparently ht is a really common occurrence in pregnancy which can be exacerbated by pregnancy, so perhaps the reason your TSH was elevated is because you're pregnant. Do you know what your test results were before you fell pregnant?

    Does anyone here know about iodine supplements during pregnancy? I read that it should be 150mcg daily but can anyone else verify that?

  • Thank you. My levels were about 10.4 before I got pregnant so about the same. I have been taking Iodine supplements since I fell pregnant. Praying it will be OK. Just wish I could relax and enjoy this pregnancy.

  • I had my eldest DD in 2006. I was undiagnosed Hashi's from about 1999 (every time i went to the GP with what in retrospect were very obvious thyroid symptoms i was fobbed off because i was overweight). I even had a goitre during pregnancy which was passed off as "just your glands" by a midwife!

    Fairly unbelievably, they let me have a homebirth (for which i'm very grateful but which was probably a bad idea given the risks of hypothryoidism!).

    I was finally diagnosed when DD was 6 months old, because by then i was thin (!) and the goitre was massive. My daughter is perfect, she is in the top 20% of her class academically and socially she is brilliant too. My birth was very straightforward, though i did go 11 days past 40 weeks (though up to 42 weeks is NORMAL for humans, however knee-jerky they get once you get past your EDD) which may have been thyroid related. My labour was fast and i had no complications.

    Try not to worry.

  • Hi

    Thank you so much for your response. So good to hear. Delighted to hear you daughter is doign so well. I can't seem to relax or enjoy this pregnancy now. Do you have an idea what your levels were like of TSH and FT4 once you got diagnosed? All current data shows I am in th elowest percentile which is worrying. Thanks again

  • At diagnosis, with a large goitre, my fT4 was 6 and my TSH was 37.something i think. There's no way of knowing what my levels were during the pregnancy. I would say though that from how i FELT my levels actually improved during pregnancy (probably because the immune suppression of pregnancy gave my thyroid a bit of a break). I didn't lose weight when pregnant (i was 3 stones overweight at conception) but i only gained 6kg overall, and i lost them all by 4 days after the birth. Once my immune system "woke up" again though, i did end up with post partum thyroiditis, being hyperthyroid (lost another 4 stones in weight in about 18weeks, twitchy all the time, fast resting pulse and BP and a LOT of my hair fell out!) then hypothyroid (eyebrows fell out, skin was dry, joints ached, bruised easily, minor injuries wouldn't heal for weeks, i lost my breastmilk supply and my resting pulse was 38bpm on waking). When i first saw the GP in that state he thought i was anorexic!

    My TSH on only 25mcgm/day went to 4.1 (which in those days, in that lab, was "normal") though, so though my levels were crazy on paper my body only actually needed a teeny bit of help to normalise (i don't say that to dismiss subclinical conditions - i didn't FEEL too good on 25mcgm/day and i'm on 100mcgm now, but i just mean the baby is very teeny before 16 weeks and though they know babies need thyroxine to grow until their own thyroid is mature, they can't actually tell you what levels will give which outcomes for an individual baby, your baby might be fine on the levels you had). Try not to worry (i know, impossible!) about what you can't know.

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