Question about a 10yr old

Hi,I hope everyone's doing good.I have a question about my younger son,10,for whom I was told that he has Hashimoto's. His labs from 2016/6 came with a TSH of 4.04 μIU/ml(0.60-4.22) and FT40.94ng/dl(0.97-1.67) . No antibodies test was ordered at that time. Lately he has rapid heartbeat up to 127 beats per moment (blood pressure is stable & normal) his body temp is down to 34.7-35oC (95F) and complaining of exhaustion,headaches.nausea and dizziness. We saw privately a cardiologist who ordered labs which all came fine and then we saw again privately an endo who ordered more labs which again came back fine,his TSH dropped to 2.36,ft41.25, AntiTPO 26.8 IU/ml(<34) AntiTG19.1IU/ml(<115): Note: No medication was ever prescribed for my son.

Cardiologist said he's all clear as far as he is concerned. Endo dismissed the case and al of the sudden he's no Hashi's now. Note that I,my sister,my older son and my mother we all have Hashimoto's.The problem is that I don't know what else to do while my son still has those symptoms . I'd appreciate any suggestions,thank you.

25 Replies

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  • Mother's instinct is way ahead of doctors usually. You know your son far better than all others.

    Antibodies do wax and wane and due to doctors being told not to diagnose until the TSH is 10 (I suppose it's the same for children). Sometimes it is a huge hill to climb before we reach 10. In other countries we are diagnosed around 3+. The fact that there's a strong familial background of hashimotos and it is the commonest dysfunction of the thyroid gland.

    I think (and you GP will most probably not do them) a new blood test would be beneficial. We do have recommended labs and you could have all the necessary ones. Free T4 and Free T3 are important plus antibodies and I'll give you a link, (plus a couple of others) for the reason these are necessary.

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

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/testin...

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

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

    The blood test should be the very earliest possible, fasting and if hormones were being taken you'd miss this dose and take after test.

    Always get a print-out with the ranges (these are important as labs differ and it makes it easier for members to comment).

    P.S. TSH is earliest very early a.m. and as most endocrinologists now diagnose upon this alone it's best to get earliest appointment. Before blood tests were introduced clinical symptoms were priority.

  • Thank you for replying and for the links you have provided so kindly. So I guess we start taking lab tests privately. Doctors refuse to order T3 labs saying that it's not necessary and that testing just the TSH is enough

  • Are the medics using the proper paediatric reference ranges?

    There are age-banded reference ranges specifically to be used in relation to children. The differences are very significant to begin with and slowly tail off by age 16 to 18. Even if differences are small they should show professional integrity and use them.

  • No,from what I read on the print-out ,the ranges are same for both children and adults.

  • Sadly, that is no surprise.

    This is a link to the ranges at one UK lab:

    frontierpathology.nhs.uk/pu...

    The numbers are not vastly different by age 10, but, as I said earlier, what reason is there to ignore them? If they are believed to be rubbish, then get them changed. Don't unilaterally and seemingly arbitrarily, or by ignorance, duck the issue.

  • Thank you so very much.

  • The range for children I think is not very reliable, any more than those for adults. You could continue to test the antibodies annually or bi annually privately to see if they climb. I am doing this for my daughter.

  • Thanks so much for replying. I noticed that his B12 levels dropped slightly so I am monitoring this closely. But what gets me confused is that the endocrinologists said that now his thyroid is working properly (based on the labs) and that the situation is over and I don't know if I can settle for that.

  • Do you know what his ferritin was?

  • No he wasn't tested for that because he's too young or so they told me.He was diagnosed with Asperger's though and now I am looking into the connection between Asperger's,thyroid and various deficiencies.

  • That's ridiculous, of course his ferritin can and should be checked. I also have Hashi's, my son also has an Asperger's diagnosis, he too moved into a period of high heart rate. His ferritin was below range, and he has gone on to develop tinnitus and restless legs syndrome, probably as a result. He too has no antibodies to thyroid... there are things going on medicine does not understand yet here.

    When I tested his T3 at the point you are at, it was slightly above range. But I found no solution.

    Ferritin D and b12 can be privately ordered as a test without going through a private consultant.

    Does your son have a restricted diet? Mine has, and looked emaciated to the age of around 14. Does your son have sleep problems?

  • PS, I looked into all the thyroid autism studies at that time. Was your thyroid problem diagnosed when you were pregnant with him?

  • I don't know. My problem started with a sudden hair fall-out back in 1990 when i was 21,but nobody diagnosed me,I was diagnosed just a month ago.Till last December I was convinced I'm a mental case.So I guess that when I was pregnant I was an unmedicated hypo. For the record my older son has a diagnosis of PDD-NOS,both of my kids in the spectrum and both with Hashimoto's. As far as restricted diet,my older one tries to limit gluten and sugars but not very successfully while mt younger one,the aspie,doesn't even want to hear about it. I still try though because I went gluten,sugar and grain free a year ago and got better immensely.Also ,my son does have a sleep problem. He gets up tired and complains of little or no sleep at all.He also sleeps during the day and seems like he has no energy. I asked the GP to order cortisol tests but he denied even though I went privately. I always do so because the health system where I am covers less than the basic.I've been arguing with doctors ever since we had the autism diagnosis and now with the thyroid things got worse. We had an endo who takes no initiative and we've lost precious time.Now we are in search of a new one.

    He looks disorientated,unable to focus and drowsy. He has started losing weight,has a rapid heartbeat constantly throughout the day & night and he's doing badly at school.He also has lost his appetite and I am afraid that the low B12 will be followed by other deficiencies as well.I am trying to go ahead of the symptoms but I don't seem to get medical help.I will see again privately the GP this afternoon to ask for more labs for my son,that is iron,folate,ferritin and vitD but I am not sure if he will agree.

  • and his T3 I guess..

  • I was not clear did you actually get adrenal tests done? If not I would push for them. Sounds like symptoms could be adrenal, and after all -connected. Causes poor uptake of meds. Certainly should be rules out...especially if your son has temperature so low. (My own son 22, has just been to see Dr P - he presented with 'obvious' adrenal problems, one of which is very low temperature - he is back up to 35.7!!!) Disturbed sleep patterns - just another symptom.... I cannot believe they are treating a young child like this, they should be pulling out all the stops to find out what is going wrong? Madness! Good luck and Best wishes.

  • No,I didn;t have the adrenal tests done and now that his TSH is down to 2.40 I am being told that the problem is solved.I will definitely have the adrenal hormones done most likely I will buy a test online. Body temp. is stuck to 34.8-35C and not going higher.Thank you so much for your replying,wishing you all the best as well.

  • Madness that the body temperature can be so low and nothing is done about it - yet if it rises they jump! I'm not medically minded but it must mean something? Surely! Common sense. If you are in the UK and have any chance of getting to Crawley I would recommend a visit to Dr P. I reckon he would know straight away if it was adrenal and you may not need test. Money would be better spent seeing him? I do hope you get the help you need for him and soon. All the best.

  • OK, well one research study found increased autism risk with undiagnosed Hashis... I prob had it when pregnant too, and I am sure that I would have had low iron and maybe B12, likely D too, when pregnant with him.

    Low appetite and low energy can be assoc with anaemia, and perhaps with low ferritin. Ask your GP for a melatonin prescription to help the sleep issues, this is of proven help in ASDs with sleep issues. The ferritin test is v v important. Melatonin can be bought over the internet if the gp refuses. Research it and go for a low dose .. 1 or .5

    My son eats no meat or fish, mainly dairy and cereal, both of those inhibit the absorbtion of iron, so it is clear why his levels were so low.

    I have never solved the high heart rate, but it is common in ASD, as though they are cars with the engine running too fast. Something causes the heart to pound and a constant sense of anxiety... the adrenal system is not working, but no dr knows what is up.

  • Thank you so much.

  • interesting piece in medical express, changes in blood brain barrier and intestinal permiability found in individuals with autism (google should find). I have wondered whether the bbb restricts iron entering the brain in autism because it lacks antioxygents... adhd brains are low in iron, autism brains low in B 12, suspect my son is both.

    Also on the latest vit D council newsheet is some new research on the effect on babes born to mothers with low vit D.

    forgive spelling..

  • thanks really ,the article was actually enlightening but left me with more questions that need to be answered because if that's valid and I'm sure it is, and the bbb is not as mapped already then people with autism are susceptible to diseases invading from unexpected routes than then known to medicine. I'm afraid I haven't phrased my thinking clearly ,apologies.

    The latest blood results just in case there are some thoughts,should he supplement B12?

    ferritin: 120ng/ml (7-140) vitB12: 447pg/ml (225-1000)

  • So ferritin is good, inflammation can raise it, but I assume past CRP showed nothing. B12 only slightly under 500, if you have not already been giving B12 supps it looks as though his absorbtion is good then, and his diet good too. Opinion seems a little divided on the PA forum, 500 is fine in many informed eyes. You could give him a weekly good B complex just as belt and braces. Looks as though nutrient shortages are not his problem.

    I agree re the research, drs do not understand what is going on in ASD re the BBB or much else. Research on genes is well funded though, and that is clearly so that states could offer abortion and reduce the huge costs associated with ASD. Not that the spending seem to help ASDs, in my opinion. It pays the mortgages of vast nos of professionals,, and the children remain as ill as ever.

  • I agree,children remain almost as they are,mine have made some sort of progress but in general they are still autistic and this alone poses a huge limitation in our lives no matter how many specialists we've been at and how many therapies they followed.

    I already started my son on a mild vit B complex supplement to see how he goes hoping that this situation won't advance to something else. Thank you so very much for the time you took to reply.

  • Please let me know how things go, and if you have any successes or insights I would be v grateful to hear.

  • Will do :)

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