Hi there, i was wondering if i could have any ideas on the following please;
If you would medicate a 6 year old based on the results below?
Her diagnosis is Autoimmune Thyroiditis- can the results (below) alone establish this?
She has had lots of symptoms over the past 1.5 years on and off, including frequent tummy aches, anxiety, reduced food intake, weight loss, heart palpitations (she was diagnosed with SVT last year and put on Antenlol) mudcle pains, fatigue, brain fog, poor concentration, hyper episodes etc Paediatrician said she should not be symptomatic at this stage and that these symptoms are not all related to thyroid!?! Thanks
TSH - 12 (0.27-4.20)
Free T4 - 17 (12-22)
TPO’s - 183
T3 not done but I’ve requested for next week. TSI and TG were not tested - should they be?
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Dolphin40
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I have done a lot of reading. I question myself and diagnosis because GP and x2 paediatricians ive spoken to give contradictory information. Her Paed said Autoimmune Thyroiditis does not mean she has Hashimotos and that hair loss is not a symptom for e.g. Her hair has started thinning since starting Levothyroxine 7 weeks ago!
Here in uk they only call it autoimmune thyroid disease. Hashimoto’s is uk is only autoimmune with goitre. Lots of autoimmune thyroid disease is technically Ord’s thyroiditis ....no goitre
I agree with SlowDragon. Her TSH is very high, meaning her FT3 is probably very low. And it's low T3 that causes symptoms. The problem is, doctors don't know anything about symptoms, so tend to claim that all symptoms are due to 'something else', without any idea what that 'something else' might be. And, her high antibodies confirm autoimmune thyroiditis, whatever one calls it.
She does not need her TSI tested, that is for hyperthyroidism. With a TSH over 12, she definitely doesn't have hyperthyroidism. And she doesn't need Tg antibodies tested, either, because they are for Hashi's, and her Hashi's has already been established with the TPO antibodies. No point in doubling the test.
A gluten-free diet may or may not reduce her antibodies, but that will not mean it reduces her Hashi's. She will always have Hashi's even if her antibodies go down to zero. The antibodies are not the disease, and Hashi's is for life.
It's quite common to start losing hair when one starts levo, but that should only be temporary. I wouldn't start worrying about that at this point. It doesn't mean the levo is doing her any harm.
Hard not to worry though when she is so young and having to deal with things like this. Not knowing when it will stop Others have said they lost all of it
I'm sure it is very worrying - even more so when it is your child than when it's yourself. Does it worry her that she's losing her hair? It will grow again.
I lost all of mine, once. But, it was after a period of malnutrition when I was very ill. When I started to eat properly again, and supplement according to nutrient test results - especially iron - it started to grow again. And quite honestly, it wasn't so bad losing my hair. I survived.
But, don't give her nutritional supplements without getting her tested first.
The high TSH with average fT4 is unusual, it’s well worth getting fT3 tested. It’s rare but possible she has a genetic condition called resistance to thyroid hormone, this can present with unusual thyroid blood tests. It can also put stress on the thyroid leading to thyroiditis. If you are in the UK her endocrinologist would need to refer her to Addenbrookeks Hospital. Consider this if they can’t sort out her condition.
If her fT3 is low she could be selenium deficient or simply hypothyroid and would need more levothyroxine. Although children are much smaller they turn over thyroid hormone much quicker so need doses approaching adult doses.
Sorry - also, do you think her SVT has anything to do with this? I hadnt heard of Resistance to Thyroid Hormone. Shes already on Beta Blockers you see.
Ask her paediatric cardiologist to refer her to a suitable endocrinologist. Your daughters problems sound complex and they should be working together to get her on track.
They say she has SVT, Autoimmune Thyroiditis and Subclinical hypothyroidism i have started meds which 4 of them suggested as i wanted more opinions. Should i be concerned she is on the wrong meds then?
I can’t say if she’s on wrong meds but I would be asking doctors if she is on right medications if she is still symptomatic. Beta blockers can cause tiredness, achy legs etc - is that causing some of the symptoms or is it the thyroid treatment is not optimal?
SVT one of the most common arrhythmias in children but I’m assuming she wasn’t treated by local, general paediatrician but referred to a paediatric cardiologist? Did they give you a reason why she developed SVT?
As a child with hypothyroidism is she growing and developing as you would expect? Not following her growth centile would be an indication she isn’t optimally medicated regardless of blood results.
You can demand a second or even third opinion if you feel your daughter is not getting optimal care. It doesn’t matter who you ‘upset’ at your local hospital your child is your priority.
I suffered a variety of immune related issues my whole life after I had my thyroidectomy 3 yrs ago alot of things that always troubled me disappeared..... So I'm a believer in the thyroid can cause other problems.
I had a bad reaction to any Beta Blockers they prescribed for me so I never took any but that's just me. Six-years old is too young for such a life-long problem but I have seen and know of some of these things enveloping a person with a world-changing character of very dynamic proportions; of course no one ever knows, that's left to god. I will say a prayer for this child if you allow, BTW what is her name? May peace be with us all in these trying times and may Dolphin 40's child recover quickly as the human race is being sorely tested enough at this time in history.
Too much thyroid hormone can cause tachycardia. Her latest results do not indicate this but she could have had high levels in the past.
Resistance to thyroid hormone (RTH) is rare and very specialised, it is only treated at Addenbrooke’s. RTH is something to keep on the back burner if no other answer Is found. It’s a very specialised topic so I wouldn’t bother trying to swot up on it, by it’s nature it can lead to general hypothyroidism but with overactivity in the heart. I came across it after years of studying thyroid hormone.
When you get the fT3 result post the figures here so we can see her latest results.
If the paediatrician can’t help her insist on a referral to a paediatric endocrinologist. If might be an idea to hunt around for one in your area and perhaps get your doctor to refer her to them. The paediatrician is using simple rules to treat her thyroid condition and perhaps out of their depth, it is against GMC rulesfor a doctor to work outside their expertise. So, e in a position to bypass the paediatrician if they are not able to help.
If you haven’t done so let your daughter’s school know she has a thyroid problem that affects her work. They can make allowances and let you know if they see any changes.
I also notice on previous post you say daughter swapped from liquid to Teva. If you feel symptoms have increased since the change insist she is changed back to original medication.
Having a child with any on going health condition is exhausting as you have to constantly fight and advocate for them. Do take care of yourself too at this time x
Mulling this over I think it is essential her fT3 is tested. The labs often refuse to assay fT3 if it has not been requested by an endocrinologist so make sure her paediatrician states firmly that the fT3 must be done. At the moment it is not clear whether she is hypothyroid or there is something more complex going on. An assay of TSH, fT3 and fT4 will clarify this.
Thank you. She is getting this done Wed at my request. I read up on resistance thyroid hormone, and SVT and ADHD traits are symptoms which I believe she exhibits. I have said to Paed on many occasions that she shows hypo/hyper at times and he says this is not possible! I feel completely lost with all this. I have asked GP to refer to GOSH but she doesn’t seem to want to go above Paed whenever I question things
I would wait until you get the fT3 result before trying for GOSH or anything else. If fT3 and fT4 and TSH are high it is definitely something an endocrinologist would need to investigate and possibly RTH. So, in this case the decision would be made for you and the results would be so unusual the paediatrician would be willing to refer on. If her fT3 comes back low then it would indicate a deiodinase problem and again would need an endocrinologist. So, don't make any decisions until you hav ethe results.
Has anyone else in the family had similar problems?
Yes, im going to wait from results and go from there.
Her T4 mid range at present. So her T3 will show one or the other. Nothing else? They said T3 won’t matter as it changes often!?! I want to see in range too then i guess? Will that then just confirm Autoimmune Thyroiditis like they have said? And then need to investigate the SVT more? Its so confusing! Never heard of deiodinase either. Do you mind me asking what you do? You seem very knowledgeable on thyroid matters. Thanks
I used to be a computer programmer but I became very ill with virtually no working memory and had to give it up. I had perfectly normal thyroid hormones but got diagnosed on signs and symptoms by the late Dr Gordon Skinner (a wonderful person). I eventually found the problem (endocrine disrupting chemicals) after about 20 years of studying thyroid.
fT3 changes very little if you are not taking T3 tablets. With primary hypothyroidism, the most common recognised form, the thyroid starts to fail and fT4 falls. The pituitary responds by secreting more TSH which pushes the thyroid to secrete more hormone including more T3. The extra TSH also promotes conversion of T4 to T3. So, fT3 levels tend to remain stable until there is simply too little T4 to convert. In healthy people fT3 and fT4 tend to see-saw around their mid points. T3 levels are reasonably stable unless the patient is taking T3 tablets. The statement T3 changes often is generally wrong.
Her fT3 levels may be low indicating she does indeed have hypothyroidism. They may be high suggesting she has hyperthyroidism perhaps caused by a pituitary problem, or it could be due to RTH. They could be normal which would suggest her thyroid is failing but currently her high TSH is managing to stimulate enough T3 but nonetheless she is hypothyroid as she has lots of symptoms. None of this is clear cut but fT3 will be a good pointer.
If her fT3 is normal there is the possiblity that her TSH reading is wrong. Sometimes antibodies can interfere with the TSH assay giving false results. If her fT3 comes back normal the paediatrician should contact the biochemist at the lab and ask for advice because the TSH, fT3 and fT4 results are inconsistent. They would probably just do another blood test (poor girl) using a different assay to see if the results are the same.
It's not clear as she has varying symptoms but I would say it is unlikely. The fT3 figure will be informative and there will be fewer avenues to consider making things a little simpler. We don't know if the high TSH normal fT4 is because her fT3 is low (hypothyroidism), because her fT3 is also high (hyperthyroidism or RTH). So wait and see.
This is very clear, she has abnormally high thyroid hormone levels with an elevated TSH. This could be a pituitary problem leading to excess TSH secretion stimulating too much hormone from the thyroid. This is the usual cause of hyperthyroidism. It could also be a form of RTH.
In either case it needs specialist endocrinologist care. She may need an MRI to check out the pituitary. An endocrinologist can check other pituitary hormones to see if they are abnormal.
Make sure she gets an urgent referral to an endocrinologist. Be polite but make sure it's done. If you don't get any joy consider a complaint or help from your MP. It sounds like her paediatrician is reasonable so perhaps a friendly approach with the facts will work.
Both fT3 and fT4 are high normal. Usually fT3 and fT4 tend to sea-saw within their reference intervals. Both suppress TSH and combined they retain TSH within its reference interval. Having both fT3 and fT4 near their upper limits is too much hormone. That’s why they are abnormally high.
We really don’t know if she is hypo or hyper, or possibly both (RTH). Hence I wouldn’t adjust her medication.
She needs specialist investigation. It seems the autoimmune hypothyroidism diagnosis was based on her elevated TSH, the UK guidelines say that a TSH above 10 can be used to diagnose hypothyroidism. Her fT4 of 17 would contradict that but I wouldn’t blame a GP or paediatrician for making a (wrong) diagnosis of primary hypothyroidism, especially as she has elevated TPO antibodies. It’s possible her thyroid is failing in addition to her prime problem. High levels of TSH whacking the thyroid make it more likely to fail.
Her latest blood test is clear, it would be easy to misinterpret the first one so I wouldn’t be critical of the GP or paediatrician. This new blood test clearly shows something unusual is going on that needs specialist input. Point out the rapid increase in TSH even though fT4 is a little higher.
Her Paed who is now looking after her for thyroid. He's lovely and agrees to do tests but i have had to ask for them and he doesn’t seem to know whats going on. I have said there was something else going on for a year after SVT was diagnosed.
He is the one that can refer to GOSH and I would email him today listing your daughters symptoms and your concerns. If he is a general hospital paediatrician I would assume he either has an interest in cardiology or took a tertiary centres advice before treating her for SVT? However lovely he is he will understand your concerns and wanting to escalate her care.
Your GP, will have done a 16-20 week paediatric placement during her GP training. During this time she will have covered general paeds, neonates, instrumental delivery and newborn checks. If she was lucky she may have had a placement prior to starting her GP training but not all of them do. The chances of her encountering either of your daughters conditions during this time is remote and if she did she would have been an observer as more senior staff made decisions. Where I work we maybe get 1 or 2 congenital hypothyroid babies per year and over last 5 years I can remember only 3 with SVT.
Yes they do need to refer if you ask and in all honestly I’m surprised he hasn’t before. I would email him today listing your concerns and asking that your daughter be referred for a review by a paediatric endocrinologist at a tertiary centre.
Out of interest what investigations did they do before diagnosing the SVT?
Also is she growing and developing as you would expect? Is she following the centile chart and keeping up with her peers when at school?
I mean to GOSH. Do they have to refer there if i ask? I have Emailed already and requested an Endocrinologist referral a few times but he said he discusses with the Endo anyway and they are not taking new referrals !?!
An ECG and then Holter monitor for a week. Episodes were becoming more frequent. Eg 5 times a week. Getting worse when started school and seemed to correlate with when she was getting anxious but Paed said it doesn’t happen due to anxiety but didn’t investigate further just diagnosed with SVT!
Yes she’s growing normally. Always been skinny and short on the Centile but i was like that too.
Most medics don’t understand the autoimmune aspect of Hashimoto’s
They only treat the resulting hypothyroidism
But for the patient to feel well we need to look at what’s causing the autoimmune thyroid issues. Frequently gluten and/or lactose or dairy intolerance is exacerbating symptoms
Low vitamin levels are extremely common result of being hypothyroid and vitamin levels need to be optimal for good conversion of levothyroxine (Ft4) into active form - Ft3
Far too frequently medics believe ...”just take this little white pill and your cured”.
Looking at vitamin levels and food intolerances often essential if symptoms remain once thyroid levels are optimal....Usually optimal levels in adults that’s TSH under 2.5, Ft4 in top third of range and ft3 at least half through range.....but obviously children’s ranges may be substantially different
TSH=12 is ridiculously high; I was a babbling idiot at 8. Yes, TPO is sufficient to diagnose Hashi's. Get her to a doc who understands food allergies and environmental causes of autoimmunity. And before you do anything else, make sure she isn't gluten intolerant by having tTG and gliadin antibody tests done. Many allopathic docs are worthless in a situation like this, I had to go to a naturopath to find out that my condition was not due to a shortage of anti-depressants, benzodiazepines, and anti-psychotic drugs. 🤬
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