Please help me-need to know if my son might have hashimoto's thyroid disease

I really need someone here to help me. I am so worried and anxious about my 5 year old son. He is small for his age and has a speech issue. I have hashimoto's disease and was recently put on levothyroxine after pestering my doctor for over a year. My TSH was 5 at its highest and has been between 4 and 5 for the last few years, but my symptoms have been debilitating. I am so worried that my son has hashimotos. I can't find any information as to whether or not he could have gotten it from me (in the womb, as out blood mixed during the birth- I am rhesus negative so that is why I know this is the case. He had jaundice after birth).

What I need to know is, could I have passed my antibodies onto him? If so, should I be getting his thyroid tested? So anxious. Please help!

40 Replies

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  • Momo33,

    Your son will have had a heel prick thyroid test after he was born before he left hospital to check for hypothyroidism. The only way to confirm or rule out Hashimoto's is to have thyroid peroxidase antibodies and thyroglobulin antibodies blood tests. I think it is unlikely your son's GP will test thyroid antibodies unless your son is hypothyroid or displaying hypothyroid symptoms. If your son does develop Hashimoto's it may be decades before he becomes hypothyroid.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I had no idea that he was tested at birth- what a relief! He is not displaying any hypothyroid symptoms, except slow growth. I keep feeling his neck to see if his thyroid is inflamed, but it's hard to tell. I will keep watch and see if he does display symptoms. If he does, I will take him to be tested. Thanks for your help!

  • Momo33,

    New borns have been tested at birth since the 80s.

    Although you don't have coeliac disease you may have non-coeliac gluten sensitivity and may find an improvement in Hashimoto's symptoms and antibodies if you adopt 100% gluten-free diet.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

    __________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • That is really interesting. I do make pasta and bread at home, so we actually have quite a bit of gluten. The endocrinologist who I saw said nothing about gluten to me- other than I didn't have celiac disease. Thanks for the links- will investigate them now.

  • Clutter, didn't the heel prick test start before the 80s? My daughter and my second son were both born in the early 70s. They were born at home, so I saw them have the heel prick done. Or was it for something else in those day?

  • GG,

    Probably was started during the 70s but I don't think it was universal until the early 80s.

  • Ok, l don't know, then. One was born in Kent in 72, and the other in Bedfordshire in 74. Quite far apart. Be nice to think that they were tested and were ok.

  • GG,

    i can't think of anything else the heel prick blood test would be for.

  • Ok. Thank you.

  • They test for these now, though I don't know how long this schedule has been in place:

    nhs.uk/conditions/pregnancy...

  • Thanks, Josiesmum. I had no idea so many things were screened.

  • I don't remember being offered these tests... will check with my doctor!

  • that is good to know. I will ask next week! Thanks

  • The original heelprick test was for Phenylketonurea (PKU) definitely done in both 77 and 80 when mine were born. The others have been added graudally since.

  • You could have him tested for celiac disease as this can affect growth. Regardless of the result, you could think about trying him (and yourself!) on a gluten free diet as you can still be gluten sensitive even if you don't have CD. If he has antibodies, then this may reduce them.

  • Thanks for the tip. Had no idea gluten was involved! I think I'll just have to watch if he develops any hypothyroid symptoms. I don't have celiac disease (they thought I did, but turns out that I didn't). There is just so much to think about-- this hashimotos has upturned my life. I hope my son doesn't have it :I

  • Food sensitivities are really common, especially gluten:

    thyroidpharmacist.com/artic...

    Lots of other great info on this website, well worth spending some time trawling through it.

  • hmmmm, gluten seems to be a real issue. My son starts school soon, so it's something to consider. thanks

  • Don't assume just because one coeliac test was negative that you definitely don't have a gluten issue.

    (I did that....20 years of ill health later, just found out by actually going GF, that I do in fact have significant gluten issue)

    I would suggest it is good idea to actually try going 100% gluten free at least for a fortnight to see if you feel any better.

    Wish I had done just that, many years ago

  • That is so weird! Yeah, the endocrinologist I saw was very dismissive of gluten being an issue. I will give it a shot and try to move the family onto gluten free options.

  • It's terrible how unaware Endos are about this stuff. Please do give it a try.

  • all children of hashimotos parents should ALWAYS be tested for Thyroid Antibodies and watched for developing thyroid disease either Graves or Hashimotos

  • And also sensibly supplemented for vit d and watched for other nutrient deficiencies, inc iron, since a hypo mother may well have been low during pregnancy and breastfeeding.

  • That is good to know. I have him on children's multivitamins now. I am low on iron so will get some iron supplements for children.

  • Make sure he gets plenty of time in the sunshine for vit D. You probably should avoid supplementing iron unless he tests low.

  • He does get out as much as he can. He hasn't had an iron test as far as I know. The children's multivitamin I give him does contain vitamin D, but not as much as I'd like.

  • If you breast fed and were low in iron and he's small for age the gp might allow a ferritin test. But often they just pull down the eyelid and say .. he's fine .. even though that test doesn't rule out mild anaemia, let alone low serum ferritin.

  • Well, I was very anemic post birth. They almost gave me a blood transfusion but then decided not to and I was left to struggle on for years until I was no longer anemic but now have low ferritin. Iron issues are a real battle for me. I hope he isn't anemic! That is a good suggestion as to why he is so small.

  • He might have low serum ferritin - low iron stores - rather than anaemia. If so they might tell you the result is normal when it is bottom of the range, so always get printouts. Post here. Drs are more focused on the dangers of high iron than low, but low iron is a major danger in childhood and adolescence when it is so needed for body building.

    My son was emaciated throughout childhood, he was average in height - though that in itself was a signal, since both parents are well above average - and there was a marked mismatch between weight and height. When I finally got a ferritin test he was below limit even though I had been supplementing 100 per cent rda. I started supplementing properly, everything that was low, inc D and though he still has many problems his body transformed during adolescence and he is now fully muscled and tall.

    Zinc deficiency can cause poor appetite, if that's a problem.

    If you as a mother have an instinct something is wrong, something will be wrong.

  • Both my husband and I are small in stature, so I'm not so worried about his height. But now you mention it, he does have a paleness in his face that worries me sometimes. Do you have any good recommendations for children's supplements? The ones I have found only have 50% rda of iron. He HATES tablets, we have tried the blackcurrent wellkid ones and he refuses to take them. :( Thinking about trying a liquid supplement.

  • thanks for this. When do you think they should be tested? Do you think they should have antibodies tested if their TSH is 'in range'? My son isn't fatigued- but he is small for his age.

  • thanks for your replies everyone

  • if he is small for his age I would suspect coeliac and ask for him to be tested for both coeliac and thyroid antibodies but that's my opinion based on the experience of my family with a coeliac granddaughter who also at 9 became hashimotos

  • okay. I will try to get him tested if he continues to not gain weight. Can't help but feel that there is something up with him... it's something I can't quite put my finger on. Just get worried sometimes :( thanks for help

  • If it is any reasurrance I have Hashi's but have not passed it on to my 4 year old (he was tested due to slow growth and severe constipation but they have found no cause).

  • that is reassuring! :) I hope your wee one is doing okay now. I think what I need to do is rule out the things that it could be but it's good to know that it might not be hashi's that is causing the delay in his growth.

  • Hi I am in the same boat as you, I was diagnosed with severe hypothyroidism 3 weeks ago and then tested positive for hashimotos, I have a son age 24 became diabetic age 3 his routine bloods showed positive for antibodies for hashimotos at the same time and straight away was put on levothyroxine to prevent symptoms coming, my girl is now 4, a big age gap between them! I am now worried to for my daughter having this hashimotos, she is also small, speech slower than her peers. I am also rhesus negative, and my daughter was tested the same at birth. I have probably had hashimotos for a while and thinking back to symptoms through my life makes sense now, would like to know if my girl is too so she can get quick treatment. :) nat

  • Poor you-- you must have been feeling awful for a long time. I can see why you are worried about your daughter having hashimoto's, especially since your son tests positive for it as well! It's such a worry, isn't it? The speech development is interesting... With my son, he has difficulty forming the sounds of words. They thought he had hearing problems, but that has been ruled out.

  • My little girl can't pronounce her L and th, school have had a speech therapist in to assess her but they don't seem that bothered by it, which is a good thing I suppose, it's quite scary all this auto immune stuff, I always seemed to have the hyper side of hashimotos never really bothered, thought it was just me, but after my daughter was born I started really slowing down, really bad muscle pain in shoulders, felt like I couldn't breath right, and other symptoms like my memory and mind was super slow! went to the doctors about it for two years! They kept saying muscle knots and anxiety. One doctor gave me a printout on breathing exercises lol,eventually one doctor decided to do a whole load of bloods and my tsh was over 100. Im still not right but I think it takes time to heal, I'm going to take my girl to get tested just for peace of mind. I am trying to do the gluten diet too to see if there's any benefits, also I think stress plays a big part in hashimotos so going to start walking alot. Are you on levothyroxine. They started me on 100mcg knocked me for six for about two weeks with flu like symptoms. I thought it was going to be a magic pill haha.

  • yeah, I thought it would be a magic pill too! I am on 50mcg and haven't yet noticed a great change other than sleeping lots. It was the same with me after my son was born-- I've never felt right since but my TSH was nowhere near 100. You must have been feeling really awful... I hope you feel better soon. Yes, it is a thought-- I think if I'd known about hashimoto's while I was pregnant I would have been really stressed, but at least aware of what was going on. I get the impression sometimes that doctors aren't very aware of potential thyroid conditions .

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