Possible Paediatric Hyperthyroidism? (old post,... - Thyroid UK

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Possible Paediatric Hyperthyroidism? (old post, now have blood results) 👇🏼🙏🏼

CandiR profile image
15 Replies

My poor 8 yr old (born 3 months prem) has been suffering from multiple health issues, the worst of which have been going on for 14 months now, unfortunately we are (like many!) going around in circles, in and out of GP surgery’s/hospital clinics not getting any answers. We are considering going private, can’t really afford to, but we can’t carry on like this, just feel so sorry for him. (He is already diagnosed with severe asthma, multiple allergies and registered as visually impaired)

I just wondered if any of his more recent symptoms sound similar to hyperthyroidism?? I’d convinced myself this could be the case…..

* Daily bouts of an intense anxious feeling, that comes on in ‘waves’ mostly first thing in the morning and at bedtime, we have to hold onto him and cuddle him tightly until it passes…this happens frequently throughout the day

*Jittery feeling, nervous energy (mistaken for hyperactivity)

*over energetic after foods-high bursts of energy followed by a slump-extreme tiredness

*severe fatigue/exhaustion

*breathlessness

*pale face, black rings under eyes

*bruising easily

*leg aches and pains

* Weight loss, no weight gain since summer 2021 and big appetite (well fed)

*Slowed growth rate (a lot smaller than his peers) looks about 6 not 8 yrs old.

* awful tummy troubles - GERD / IBS symptoms, complaining of ‘squishy rock’ or ‘bubble’ in his throat/oesophageal area

Thank you in advance for taking the time to read all of this!!

***Update…..I have received his blood test results, ‘all good’ according to the paediatrician (he’s far from good, he’s still suffering, in fact probably worse) 😕 👇🏼

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CandiR
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greygoose profile image
greygoose

His blood results don't suggest hyperthyroidism, even though the FT4 is high. But, of course, they omited to do the two most important tests: FT3 and antibodies. Could be he has Hashi's and levels are fluctuating.

CandiR profile image
CandiR in reply togreygoose

Thank you once again greygoose , not a good enough panel of bloods is it, looks like I’m going to have to pay for a private test, that way I can chose what I want testing . I’ve still got the info you gave me last time on what should ideally be tested 🙏🏼

greygoose profile image
greygoose in reply toCandiR

You're welcome. :) Good luck.

SlowDragon profile image
SlowDragonAdministrator

No Ft3

No thyroid antibodies

No vitamin D, folate, ferritin or B12

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12

Request GP test thyroid antibodies, vitamin D, folate, ferritin and B12

Also coeliac blood test

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests early morning

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Blue horizon will test children ….you would need to book a private blood draw

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

CandiR profile image
CandiR in reply toSlowDragon

Wow, thanks so much SlowDragon! What’s awful is that I made it clear that I felt he wasn’t absorbing vitamins minerals any longer, he looks dreadful, so you would presume they’d have tested Vit D, B12, iron etc etc wouldn’t you!

I was thinking of paying £250 for a private consultation with Nuffield (BUT that’s all you get) and I’m not sure of what would happen after thatMp!

Then I thought about the private blood tests and you’ve just mentioned them too, this could be a good way around things…have many of you found this a better way of getting the bloods you want (rather than asking a GP)?

I’ll have a look on Blue Horizon now thank you 🙏🏼 think this is a great idea 😊

SlowDragon profile image
SlowDragonAdministrator in reply toCandiR

Like thousands of U.K. thyroid patients, yes I was forced to get full thyroid and vitamin testing done privately to make progress

I still have to test privately, as NHS doesn’t test FT3, even for patients prescribed T3 on NHS

Many, many posts on here with private testing results

Eg

healthunlocked.com/search/p...

Come back with new post once you get results

CandiR profile image
CandiR in reply toSlowDragon

Well that’s good enough advice for me, I’ve made up my mind, we’ve been at this approx 14 months now as his next appointment isn’t until June (GPs won’t do much as ‘he’s under hospital paediatric care) I can’t leave him suffering any longer, I’ll get more bloods done privately immediately 👍🙏🏼🙏🏼

CandiR profile image
CandiR in reply toSlowDragon

…..thanks again! Really appreciated!

nightingale-56 profile image
nightingale-56

Hi CandiR , has your son had his Cortisol checked? He sounds more Hyperthyroid than Hypothyroid, but needs a few more checks really. I have Graves and had a sub-total thyroidectomy eventually after giving birth by c-section to my second son who was subsequently diagnosed with Panhypopituitarism with Septo-Optic Dysplasia, and like your son is registered visually impaired. My son , born in 1976, had slow growth and was given Human Growth Hormone until he was 8 when the synthetic growth hormone was given. Although feeding was a slow process, he did not seem to have any digestive problems apart from constipation. You can read my profile on my page. I do wish you and your son good luck and a much healthier outlook.

CandiR profile image
CandiR in reply tonightingale-56

Thank you nightingale! This is all really interesting, your son is a year older than me 😊

No, my son has never had his Cortisol checked, I should definitely get that done though thank you!! I’m positive that his problems are very much an endocrinologists area of expertise, he’s getting thinner and more ‘anxious’ but he’s still tiny looks 6 not 8 yrs old poor child and now, really weirdly (he still looks really babyish) but his underarms have started to smell of sweat (like an older child would if going through puberty) somethings defo not right.

I’m going to read your profile now, I’d never heard of most of the conditions you mentioned! Apart from Graves. Sounds like you and your son really been through it 😟🙏🏼

nightingale-56 profile image
nightingale-56 in reply toCandiR

Another thing my son has, is a slightly small head and facial features. Do hope you manage to sort a decent Endocrinologist for your son. My son has never really smelt of sweat, so can't help you there. Please let me know if you have any other queries that I may be able to help you with.

helvella profile image
helvellaAdministrator

Can I check that the reference intervals (ranges) shown are paediatric reference intervals and not just the "standard" ones that apply to adults?

This is a link which shows both adult and paediatric reference intervals at one lab. (You can't pick this example and apply it to another lab. It is solely so you have an example to look at.)

frontierpathology.nhs.uk/pu...

The differences at age 8 are not that large - but could be enough to tip a decision one way rather than another.

CandiR profile image
CandiR in reply tohelvella

Ooo I was not aware of this, thank you! I don’t know the answer to that! I just assumed they’d be the paediatric range. The bloods were ordered in a children’s clinic at the hospital, however, he had them actually drawn in with the adults in phlebotomy in the main hospital (instead of in the children’s ward) 🙏🏼😊

helvella profile image
helvellaAdministrator in reply toCandiR

In which case, consider calling the pathology lab and specifically asking!

It is much more significant with younger children.

There are paediatric reference intervals for a large number of tests.

CandiR profile image
CandiR in reply tohelvella

I will thank you! I’m glad you mentioned that! 🙏🏼

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