Splitting doses in a 1 year old: Hello Baby... - Thyroid UK

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Splitting doses in a 1 year old

willwright1990 profile image
34 Replies

Hello

Baby was born with congenital hypothyroidism.

He's now 1.

His sleep is terrible (even by baby standards).

We've always tried to give him his meds as soon as he wakes up first thing on a morning, however this can be very challenging when he wakes up hungry.

We are thinking of splitting his dose so that it's gentler on him, possibly help with sleep, reduces any risk if meds are given too close to food on a morning and I've heard absorption is better at night.

He's currently alternating between 50mcg and 75mcg. So we are thinking 25mcg every evening and either 25mcg or 50mcg on a morning depending what day it is.

Our doctor very much says we do what works for us which is sometimes challenging.

Does anyone have any experience with split doses with a child?

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willwright1990 profile image
willwright1990
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34 Replies
helvella profile image
helvellaAdministratorThyroid UK

So long as you make any changes carefully and thoughtfully, it seems entirely reasonable to try. And you clearly are thinking properly.

I have always taken my levothyroxine at night - but I'm very much older than a baby! :-)

You might find some interest in the link below - though it is primarily for somewhat older children:

thyroidpatients.ca/2022/07/...

SlowDragon profile image
SlowDragonAdministrator

Gosh that’s hard trying to work out what might suit he best

Presumably this is liquid levothyroxine?

Do you always manage to get same brand at each prescription

Many adults prefer taking levothyroxine at bedtime

Others prefer splitting the dose

You can only try different regimes and try to work out what seems better

Initially your idea of trying half at bedtime seems a good one

Are medics keeping a close eye on his vitamin levels

willwright1990 profile image
willwright1990 in reply to SlowDragon

No they won't prescribe liquid, presumably because of the cost?

We have tablets then crush them, previously we used to mix with a little bit of formula milk but he's not on formula any more so we give it to him with a spoon full of natural yoghurt which doesn't seem to have affected his levels.

I don't think they've ever checked his vitamin levels, should they?

SlowDragon profile image
SlowDragonAdministrator in reply to willwright1990

is the endocrinologist aware that levothyroxine is being taken with milk/dairy

Advice for adults is to take with water

Obviously might be different for children, especially babies

The most important thing is consistency and actually getting him to take levothyroxine everyday

Ask when Vitamin D, folate, B12 and iron and ferritin levels were last checked

Do you always get same brand of levothyroxine tablets

willwright1990 profile image
willwright1990 in reply to SlowDragon

Yes they are aware, they suggested milk to begin with and then we changed to yoghurt. I guess they are more interested in making sure that he gets his meds?

Those vitamins have never been checked, I'll ask next time, thanks for the tip.

No I think it's been a mix depending on what's available. I believe that the 25mcg and 50mcg tablets we have at the moment are different brands

SlowDragon profile image
SlowDragonAdministrator in reply to willwright1990

Different brands of levothyroxine are often not interchangeable

Suggest you try to only get same brand at each prescription

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz 

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

Northstar levothyroxine being phased out this month 

 Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.

Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet. 

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free. 

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

 

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that seems to suit him, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands 

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. 

If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Similarly if normally splitting levothyroxine, don’t take dose evening before test……take whole daily dose 24 hours before test 

Liquid levothyroxine

There is currently a national shortage of liquid levothyroxine

So that might be a problem

We have several members who are prescribed liquid levothyroxine (despite the cost) and have been struggling to get

willwright1990 profile image
willwright1990 in reply to SlowDragon

I'd best check the brands, thanks for the heads up. We always get it from Boots so hopefully they should be the same.

What's the thinking behind taking a full dose 24 hours before a blood test? Doesn't that skew the results?

They don't want to give him liquid because "it's not as effective as tablets"

SlowDragon profile image
SlowDragonAdministrator in reply to willwright1990

I believe the liquid is quite thick/viscous

It’s certainly very expensive (£100 plus per bottle) and currently very difficult to get

gabkad profile image
gabkad in reply to willwright1990

My kids got 8 ounces of formula in the morning regardless up till I knew they were eating enough nutritious food until about age 3. Formula has a lot of added vitamins especially a huge amount of vitamin K1.

One of my kids would absolutely not eat vegetables and the formula was my insurance policy, so to speak. The other kid had enormous tonsils which were removed at age 3 and then she started eating like a normal human.

So there are challenges. You could still put the thyroxine in 4 ounces of formula per dose. I found that my kids liked the formula. That was back in the early 80s.

Britpol profile image
Britpol in reply to willwright1990

milk contains calcium which blocks the absorption of levothyroxine.

gabkad profile image
gabkad in reply to Britpol

It doesn't prevent all absorption and the dose is adjusted to take this into consideration. I know someone who was taking 150 mcg levo with her coffee every morning. This effectively resulted in an actual absorption of 100 mcg. When she took it without coffee, she ended up with symptoms of too much thyroxine because her dose had been titrated for her particular situation. So she went back to her coffee habit and continued to take 150 mcg.

Britpol profile image
Britpol in reply to gabkad

Interesting. Thank you. Does it apply to every brand of levothyroxine? I wonder about interactions possibly dependent on fillers/colours.

gabkad profile image
gabkad in reply to Britpol

In Canada it's either Synthroid which contains a lot of lactose or Eltroxin which I've never checked for fillers. Both are generic. We don't have the options available in the UK.

Britpol profile image
Britpol in reply to gabkad

Thank you. We have different brands of Levo in the U.K. K heard bad reports about Teva. There are also Accord, Mercury, Wockhart. While in hospital following my second thyroidectomy 72h ago I have been started on all these brands (!!) but discharged home with 100 mcg Accord and 25 mcg Wockhardt. I am using 100 mcg Accord split into two doses and see his I am. If OK, I will insist on staying on this brand, but it is very early days. Thank you again.

gabkad profile image
gabkad in reply to Britpol

Every different dose of Synthroid is dyed a different colour. Probably not necessary. But I guess if the pharmacy gives out the wrong pills as happened with me once when I got a vial of diazepam instead of synthroid, I was able to recognize the mistake immediately. That was worse than an 'oopsie'. These days I get the Synthroid in its original bottle because I want to know batch number and expiry date. Plus it should be in a light proof container and they usually just put it in a clear vial.

helvella profile image
helvellaAdministratorThyroid UK in reply to gabkad

Just so it isn't missed, the 50 microgram Synthroid is undyed.

(This is common across many makes, but not all. Some dyed makes choose a different dosage to be undyed.)

helvella profile image
helvellaAdministratorThyroid UK in reply to Britpol

We have different brands of Levo in the U.K. K heard bad reports about Teva.

There have been bad reports about ALL levothyroxine makes.

Have you also noticed the good reports about Teva? Some people find it the nest of all UK levothyroxine tablets. We are individuals with our own variations - some get on well, others don't.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.

The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.

helvella.blogspot.com/p/hel...

Veneziana profile image
Veneziana in reply to Britpol

Paediatric endocrinologists will advise that all babies are given levothyroxine with their milk. The most important thing is that it’s taken consistently.

ThyroidThora profile image
ThyroidThora in reply to willwright1990

Hi,

I think he should be on liquid Levothyroxine. He’s a baby and he won’t be as developed as an older child or adult. Plus, there could be binders and fillers in the tablets that disagree with him. He cannot tell you this because he can’t talk.

Does he vomit a lot or have reflux? He could be allergic to dairy. My daughter was told that my baby grandson had to go on formula when she was too ill to breastfeed and he started projectile vomiting. It turned out he was allergic to all dairy products and beef. He was also allergic to soya and other animal derived formula such as goats milk formula. My grandson has also tested positive for an underactive thyroid at our local hospital but, the children’s hospital says not but he is being monitored.

If I was you I’d insist on liquid Levothyroxine, after all, we give antibiotics and paracetamol in liquid form to children so, why not liquid Levothyroxine? It’s a life limiting condition and you don’t want your child developing other problems later in life.

Good luck and I wish you well with your journey.

Take care and look after yourself.

TTxx.

willwright1990 profile image
willwright1990 in reply to ThyroidThora

I'd urge you to not use phrases like "He’s a baby and he won’t be as developed as an older child or adult." You're implying that he'll have development problems.

Imaaan profile image
Imaaan in reply to willwright1990

I think words might be misunderstood at times and I honestly dont think that's what they meant at all

willwright1990 profile image
willwright1990 in reply to Imaaan

Possibly, but a mum with little sleep might have taken it the wrong way.

Imaaan profile image
Imaaan in reply to willwright1990

Absolutely understandable. May you find the best way forward regarding your baby's treatment and may they thrive.

ThyroidThora profile image
ThyroidThora in reply to willwright1990

That is not my intention.

Veneziana profile image
Veneziana in reply to ThyroidThora

liquid levothyroxine is not prescribed to babies and children. Please leave the paediatrics experts to advise.

ThyroidThora profile image
ThyroidThora in reply to Veneziana

See radd’s reply below.

radd profile image
radd

willwright1990,

I think it absolutely disgusting you are made to crush a thyroxine tablet to be given with food that risks binding a proportion. If there was ever a more deserving case for liquid thyroxine, it has to be a baby/young child. 

The NHS website states …  

Levothyroxine is available as a liquid for children and people who find it difficult to swallow tablets.

And …  

‘Food and caffeinated drinks can both stop your body taking in levothyroxine properly so it does not work as well.

Welcome to the thyroid world where many patients have to push flippin' hard for life saving meds they are entitled to!

I would push very hard for liquid Levothyroxine. You can play health professionals off against each other by saying things like …  ‘I’m in a baby support group with parents from all over England who 'all' use liquid thyroxine with a syringe to ensure precise dosing. They have been told under no circumstance should thyroxine ever be given with food.

You could emphasise the complete lack of sleep, which can be difficult to manage with ordinary baby development. Say you are completely exhausted and can’t tell how much meds baby is having because sometimes food is left or ends up down his front, or he brings some of it back up.

Say you don’t think this pill crushing method is working for either baby or yourself, and as this condition is life long and healthy child development is absolutely dependant upon adequate and consistent thyroid hormone levels, you would like your baby to be treated as per NHS guidelines.

nhs.uk/medicines/levothyrox...

I hope baby is being monitored every 2–3 months during the first year of life, and 3–4 months during the second year, as per NICE guidelines. NICE also states tablets should not be chewed but swallowed whole with a glass of water. (Chewing could be associated with crushing. The idea of swallowing the pill whole with a drink is to whoosh it down to the right part of the stomach for best digestion/absorption.) 

bnfc.nice.org.uk/drugs/levo...

If you find it difficult to verbalise you could always print off these official guidelines and give them to your doctor. Good luck. I hope things improve for you 🤗

willwright1990 profile image
willwright1990 in reply to radd

My only worry with liquid is if it doesn't taste of anything nice he might just refuse it?

He's been monitored a bit more than every 2-3 months at the moment (poor lad has had more blood tests than I've ever had in my life!)

radd profile image
radd in reply to willwright1990

Aww, poor little mite 🤗.

I can't comment as don't take liquid thyroxine but you could put up a new post asking others what the tastes is like. He would only need a little syringe full.

I've seen flavoured thyroxine for dogs 😬 but never for humans.

Jaydee1507 profile image
Jaydee1507Administrator in reply to willwright1990

Poor baby.

I have liquid Levo and tbh it doesn't really taste of much. There's no real flavouring in any of the brands, always a clear, viscous but there is always some form of sweetner so its a bit like a very mild version of a sugar drink. It's certainly not offensive and I wouldn't describe it as unpleasant either.

It is difficult to get hold of lately though. I usually get 3 bottles at a time and my chemist has struggled to get me 1 at a time lately, no choice in brands, you get what you get.

You should still push for him getting liquid though.

helvella profile image
helvellaAdministratorThyroid UK in reply to Jaydee1507

Glycerol (a main ingredient) itself has some sweetness.

lynmynott profile image
lynmynottPartnerThyroid UK in reply to willwright1990

Have you been in touch with the British Thyroid Foundation? They are very helpful regarding babies and children with hypothyroidism and they have direct contact with endocrinologists.

bikebabe profile image
bikebabe

gosh I was born with congenital hypo in the 60s and in those days they didn’t know it needed to be taken on empty stomach so ended up in a very high dose for most of my life. How hard that must be for you. Maybe give it an hour before tea instead.

Batty1 profile image
Batty1

Can you crush the tablet and put it in a little bit of apple juice add it to a syringe and give it to him that way…. Anyway I think liquid levo would be a better option especially since it’s a baby your doctor and the cost of prescription police should understand the difficulties of medicating a baby with pills… seems cruel to me.

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