Hi thanks for letting me join. I think my daughter is hypothyroid. Her face is puffy and more rounded, she is more tired and her neck is swollen. Any ideas about what to do about this? She is 3 years old. Thankyou
TSH *20.7 (0.2 - 4.2 mIU/L)
FT4 *10.3 (12 - 22 pmol/L)
TPO antibody *80.6 (<34 IU/L)
Thanks
I am sorry you are worried about your little daughter.
Make an appointment with your GP and he should palpate her neck and take a blood test.
The blood test has to be at the earliest possible (the TSH is highest then and drops throughout the day and that's all doctors take notice of).
Or he should refer her to a paediatrician.
TSH *20.7 (0.2 - 4.2 mIU/L)
FT4 *10.3 (12 - 22 pmol/L)
TPO antibody *80.6 (<34 IU/L)
Thanks
Your daughter is very hypothyroid and FT4 below range. She has hashimoto;s due to the antibodies. Going gluten-free can reduce the antibodies which wax and wane and sometimes they are too many and will make her feel hypo It is called An Autoimmune Thyroid Disease commonly called hashimoto's.
Has the doctor not prescribed levothyroxine for her or sent her to a paediatric doctor??
Thankyou no levothyroxine prescribed yet
They better get cracking then and I'd phone the doctor and hopefully he knows what to do but I have lost my faith in doctors.
Ask for a referral poor little thing.
Yes will do this tomorrow morning
If she gets levothyroxine (I don't know how they treat children) it has to be taken on an empty stomach with one full glass of water and wait an hour before eating.
If you prefer it can be taken at bedtime as long as she's last eaten about 2.5 hours before as stomach has to be empty and food interferes with the uptake of the hormones.
If taking a bedtime dose, it should be missed if she is getting an early morning blood test. TSH is highest then and she can take levo afterwards and night dose as usual.
GP should also check B12, Vit D, iron, ferritin and folate as everything has to be optimum.
Thankyou she had these checked some time ago
Ferritin 15 (15 - 150 ug/L)
Folate *2.2 (2.5 - 19.5 ug/L)
Vitamin B12 *186 (190 - 900 pg/L)
Vitamin D total *25.3 (25 - 50 nmol/L deficiency)
Kellie
What is your GP doing about these dire results?
Her ferritin is rock bottom, suggesting she could have iron deficiency anaemia.
Her Vit D is 0.5 away from severe deficiency.
Her folate and B12 are below range, she could have Pernicious Anaemia - please post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc
Thankyou she has iron deficiency but isn't on iron. Vit D she is taking 800iu. Going to pernicious anaemia forum now
I personally don't know about Vit D Deficiency in 3 year olds, but this is the NICE Clinical Knowledge Summary cks.nice.org.uk/vitamin-d-d...
Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L.
** I would be pushing for this as she is only 0.5 over that limit **
How should I treat?
Consider the need for referral or seeking specialist advice.
Refer to an appropriate specialist (using clinical judgement to decide on the urgency) if a serious underlying condition, such as cancer or a malabsorption disorder (for example Crohn's disease), is suspected. See the sections on Causes and Differential diagnosis.
Refer to a paediatrician if the child or young person has clinical featuresof rickets (such as bone deformities).
Refer or seek specialist advice (depending on clinical judgement) if the child or young person:
Has hypocalcaemia - if symptomatic (irritability, tetany, seizures, or other neurological abnormalities), arrange immediate referral to A&E; if asymptomatic, seek specialist advice from a paediatrician.
Has a fragility fracture, documented osteoporosis, or high fracture risk, or is being treated with an antiresorptive drug for bone disease.
Has raised parathyroid hormone levels.
Has a malabsorption disorder (for example Crohn's disease) or other condition known to cause vitamin D deficiency.
Has a co-existing condition associated with increased sensitivity to vitamin D (such as sarcoidosis, tuberculosis, lymphoma, or primary hyperparathyroidism).
Is taking a drug that can increase the risk of vitamin D deficiency (such as some antiepileptics or oral corticosteroids) or the risk of vitamin D toxicity (such as a thiazide diuretic or digoxin).
Choose the most appropriate vitamin D preparation for the person.
Vitamin D2 is recommended for strict vegans as it is derived from plant sources. There are also vitamin D preparations for people with peanut or soya allergy and for people with halal or kosher requirements.
See the section on Available preparations for more information.
Prescribe oral high-dose vitamin D treatment, followed by daily supplemental doses.
The doses currently advised in the British National Formulary (BNF) for Children are:
Age 1-6 months: 3,000 international units (IU) daily for 8-12 weeks.
Age 6 months-12 years: 6,000 IU daily for 8-12 weeks.
Age 12-18 years: 10,000 IU daily for 8-12 weeks.
These may need to be changed depending on the availability of other vitamin D preparations and evidence of alternative dosing regimens.
Calculate dietary calcium intake.
Several online calcium calculators are available, such as the Institute of Genetics and Molecular Medicine calcium calculator.
The recommended daily intake of calcium is:
Age younger than 12 months: 525 mg (13.1 mmol).
Age 1-3 years: 350 mg (8.8 mmol).
Age 4-6 years: 450 mg (11.3 mmol).
Age 7-10 years: 550 mg (13.8 mmol).
Age 11-18 years (boys): 1000 mg (25.0 mmol).
Age 11-18 years (girls): 800 mg (20.0 mmol).
If the child or young person has an inadequate dietary calcium intake, advise on dietary measures to correct this.
See the British Dietetic Association (BDA) factsheet on Calcium (available at bda.uk.com) for information on how the recommended daily calcium intake can be achieved.
If they are unable or unwilling to increase their dietary calcium, consider the need for supplemental calcium (in addition to high-dose vitamin D) - consider seeking specialist advice.
The supplemental calcium doses currently advised in the BNF for Children are:
Age 1 month - 4 years: 0.25 mmol (10 mg) per kg four times daily, adjusted to response.
Age 5 - 12 years: 0.2 mmol (8 mg) per kg four times daily, adjusted to response.
Age 12-18 years: 10 mmol (400 mg) four times daily, adjusted to response.
Combined calcium and vitamin D preparations (such as Calcichew D3®) are available; however, they are not recommended for people on high-dose vitamin D treatment because they contain very low levels of vitamin D (200-400 units per tablet) and may result in high dosing of calcium, thereby increasing the risk of hypercalcaemia.
Advise the child and/or the parents/carers:
To seek medical advice if they develop any adverse effects during treatment with high-dose vitamin D, such as nausea and vomiting.
On lifestyle measures to reduce the risk of recurrence.
Follow up the child or young person to ensure that vitamin D deficiency has been treated and to assess for vitamin D toxicity(although this is unlikely at the recommended doses).
Be aware that vitamin D treatment can unmask previously undiagnosed primary hyperparathyroidism.
Why is she not treated for the iron deficiency?
I don't know, her complete blood count said her MCV was below range and her MCHC above range but everything else ok. I don't know how the GP should be treating her
I think you should consider seeing a different GP. Your poor child has many issues, we see this a lot with members although they are adults, poor little girl must be feeling dreadful and she needs urgent treatment.
Is that a GP test? If so what has the GP said about the results?
She is clearly Hypothyroid and has raised antibodies which means she is positive for autoimmune thyroiditis aka Hashimoto's.
I have no knowledge of treating small children but she should probably be referred to a pediatric endocrinologist (if there is such a thing) but she needs a referral to an endocrinologist specialising in thyroid rather than diabetes.
Thankyou it is a GP result and no levothyroxine prescribed
Push for something to be done urgently. Treatment initiated by GP or referral to endo.
SlowDragon do you know anything about Hashi's and very young children?
Kellie2203
Not sure if there is paediatric endo on Thyroid UK list
Email Thyroid UK for list of recommended thyroid specialists tomorrow morning
dionne.fulcher@thyroidUK.org
Roughly where in UK are you? With regards to where you can get to see a consultant
Thankyou I am in North Devon
Bristol Royal Children's hospital has paediatric endocrine department. probably your nearest specialist centre
This is way beyond a GP initially. You need specialist advice
Read up about Hashimoto's. I will add some links in the morning
I just had a thought about flouride which is in most toothpastes these days.
I’m sure they do, but this seems a clear case of overt hypothyroidism - which was possibly present from birth, given the vits and mineral levels.
The forum’s making for sad reading this evening, isn’t it? I’ve now read at least half a dozen posts where it’s clear the GP and / or endo is being grossly negligent.
Your daughter should probably have endoscopy to rule out coeliac, before changing her diet to strictly gluten free. Push to get this done within 6 week timeframe
Hashimoto's affects the gut and leads to low vitamin levels
Low vitamin levels stop Thyroid hormone working
So it's essential these low vitamin are improved urgently
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
So if coeliac test is negative it's still highly likely she needs to be strictly gluten free
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
thyroidpharmacist.com/artic...
thyroidpharmacist.com/artic...
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
Gluten free and improving vitamins will help, but she will need replacement thyroid hormone- Levothyroxine
Push for urgent referral to specialist centre
GP should ask endocrinologist what dose of Levothyroxine she should be started on
Probably Scan of thyroid too.
The first step is to get a coeliac blood test, which will confirm if antibodies are present. If she is over range for coeliac, then they will refer her for an endoscopy. The minimum wait for endoscopy is around 3 months at the moment. My OH waited for 6 months, but I know others currently waiting 8 months.
The GP doesn't jump straight to endoscopy - the service is so much in demand at the moment, and blood tests are a good enough first indication.
According to eminent gastroenterologist blood test is very unreliable, can either give false negative or false positive
Private endoscopy would cost around £1200 plus consultation fee, but no waiting time
While they are not always reliable, it is a good enough first step. The false positives are identified by the later biopsy. The private option would suit someone who feels they have a false negative result though, but with the cost, it's worth seeing where you get on the NHS first.
I have nothing to add only that I hope your little girl gets the treatment she needs and starts feeling better soon.
It’s a tough call really
If she gets coeliac diagnosis then they take that more seriously (incorrectly) than gluten intolerance
It depends how long have to wait for endoscopy
I would get the test done before going gluten free. People who cut gluten out their diet seem to regret not going for the coeliac test first so they can be sure.
The benefit of getting a test is that you then get access to prescriptions, better support in making the jump to gluten free & people take you more seriously if you have a medical name for being gluten free, otherwise they often treat you like you're just being faddy.
As others are suggesting you get your daughter tested for coeliac disease, this assessment might be helpful:
isitcoeliacdisease.org.uk/o...
If you fill in her symptoms, they will give a recommendation letter for you to take to your doctor saying Coeliac UK recommend she be tested. It adds clout to your request.
Typically she will have a blood test (results take a couple of weeks), and if positive, she'll be referred for a biopsy which takes around 3-6 months. Don't cut gluten out of her diet in the meantime, as it's necessary to have gluten in her system for the tests & cutting out & reintroducing later will make her sicker (if it is coeliac, that is).
Your daughter is VERY Hypo-T ... She needs to be seen ASAP
Baby needs to be in hospital. Needs care ASAP
This is not a situation to be taken lightly.
Helen000,
I would certainly want coeliac disease ruled confirmed or ruled out in a 3 year old child before switching her to a gluten-free diet.
Helen000,
Because I think it better to test a 3 year old while she is eating normal amounts of gluten rather than start GF diet and later make her do a gluten challenge to establish whether she has coeliac disease.
Really glad coeliac disease has been mentioned - if your Daughter doesn't have it I'd be shocked as her blood readings are classic. I have CD and so does my little girl. I'm the Hashimotos sufferer too.
She'll be feeling pretty rotten with all the low vitamin and mineral readings bless her! What a difference a diagnosis would make - my own daughter improved significantly with her well-being once diagnosed.
Your GP should urgently make a referral to a paediatrician (ideally with an interest in autoimmune conditions) and a thorough blood work will be done by them- GPs NEVER request enough or even the correct tests.
Good luck and may your Daughter feel better very soon x
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