9 year old on levothyroxine: My 9 year old son is... - Thyroid UK

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9 year old on levothyroxine

Laralou36 profile image

My 9 year old son is on levothyroxine. He has trouble with terrible stomach gas and says his tummy hurts. It’s got worse since they upped his dose from 50-75microgram. Is there anything that could be causing it like the brand? I asked them to stick to the same brand which they have been (Mercury pharma) not sure what else is causing it

60 Replies
SlowDragon profile image
SlowDragonAdministrator

Looking at previous post

Your son has coeliac disease too?

So presumably he has autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

How long since he was diagnosed as coeliac?

Has he had vitamin D, folate, ferritin and B12 levels tested

What vitamin supplements is he taking

Is he seen by dietitian

How long since dose levothyroxine was increased

Does he take levothyroxine waking or at bedtime

Levothyroxine must be taken on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours minimum

Laralou36 profile image
Laralou36 in reply to SlowDragon

HiyaYes correct he has coeliac disease too: they told me he may be getting traces of gluten in his body but it can’t be the case as he is very fussy and strict with his diet.

He’s been diagnosed coeliac 4 years

His tsh levels were tested recently and pediatrician said they are borderline so upped his dose. We’ve only increased it over the past week or so.

He takes the levothyroxine in the morning before food crushed in milk (paediatrian had no problem with us doing this) there’s no other way to get him to take it.

He takes abidec multivitamins

All other blood results satisfactory

SlowDragon profile image
SlowDragonAdministrator in reply to Laralou36

Levothyroxine should be four hours away from any calcium rich foods including milk

Calcium significantly affects absorption of levothyroxine

nhs.uk/medicines/levothyrox...

Take levothyroxine once a day in the morning, ideally at least 30 minutes before having breakfast or a drink containing caffeine, like tea or coffee.

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

How to take levothyroxine

Swallow the tablets whole with a drink of water.

Levothyroxine is available as a liquid for children and people who find it difficult to swallow tablets. It’s available in different strengths.

If you or your child are taking levothyroxine as a liquid, it will usually come with a plastic syringe or spoon to help you measure out the right dose.

If you do not have a syringe or measuring spoon, ask your pharmacist for one. Do not use a kitchen teaspoon as it will not give the right amount.

Is there any food or drink I need to avoid?

There are some foods and drinks that do not mix well with levothyroxine:

drinks containing caffeine, like coffee, tea and some fizzy drinks, can reduce the amount of levothyroxine your body takes in. Leave at least 30 minutes after taking levothyroxine before you drink them.

calcium-rich foods, such as milk, cheese, yoghurt and broccoli, can reduce the amount of levothyroxine your body takes in. Leave at least 4 hours between taking levothyroxine and eating calcium-rich foods.

soya in food and supplements may stop levothyroxine working properly. If you regularly eat soya or take soya supplements your doctor might need to do extra blood tests to make sure you're getting enough levothyroxine.

kelp (a type of seaweed) can contain high levels of iodine, which sometimes makes an underactive thyroid worse. Do not take supplements containing kelp if you're taking levothyroxine.

Suggest you request liquid levothyroxine

or

Could you try orange juice instead

Essential To get TSH, Ft4 and Ft3 tested and all four vitamins at least once a year

shaws profile image
shawsAdministrator

Maybe taking his medication with glass of water on going to bed (as long as he hasn't eaten for a while) may enable his stomach to remain calm - or in the middle of the night f he usually awakens..

We should take levothyroxine with a glass of water on an empty stomach and wait an hour before we eat.

It could be the levothyroxine tablets (excipients in them) or too much or too little dose or nothing to do with his treatment.

As regards it getting worse after the dose increase you could try the lower dose for a couple of weeks (let the doctor know). How long after taking the tablets does the pain come on? If there is a consistent link it would point to the tablets. In which case you could try a double dose on alternate days to establish the link. It would be better if this could be blinded, so he isn’t aware of whether there is a tablet in the milk.

Levothyroxine absorption is impaired by bran and coffee (I’ve never seen any evidence that caffeine causes malabsorption, the NHS document seems to have jumped to this conclusion, not good science). Levothyroxine needs an acid environment in the stomach for good absorption so calcium supplements and antacids are avoided but I don’t think milk would be a problem, especially in a young person. I have cereals or porridge immediately after taking my levothyroxine and have never had a problem. In cases of poor absorption a top pharmacist advises some fruit juice.

It would be really useful to know his blood test results to see if it looks like he may be over or under medicated. Any impaired absorption of levothyroxine would also show up. Both hypothyroidism and hyperthyroidism (or too much levothyroxine) can cause loss of magnesium leading to IBS type symptoms including a sensation of bloating. Green vegetables and tomatoes are good sources of magnesium.

Do you have his blood test results from when he was diagnosed? You could switch to giving him the levothyroxine with milk at bedtime to see whether it is the tablets or eating breakfast. Of course, if he starts getting bloating during the night you would need to switch back quickly.

Laralou36 profile image
Laralou36 in reply to jimh111

HiHis tsh a year ago was 5.7 (0.27-4.2)

Free t4 17 pm/l

His tsh was creeping up each blood test so they chose to medicate due to him having coeliac disease and they being ‘sisters’

I’m not sure what his recently result was but apparently it was borderline.

It’s frustrating because we had 4 years of issues and then finally resolved with him being diagnosed coeliac and he’s been thriving on the gluten free diet until this happening over the past year or so. Tummy ache and terrible gas. I can defo try giving the milk at bedtime with pills as he likes a bedtime milk still :)

Laralou36 profile image
Laralou36 in reply to Laralou36

Sorry about my terrible mistakes on the message half asleep 😂

jimh111 profile image
jimh111 in reply to Laralou36

That sounds good. Try to move to a more magnesium rich diet as wholegrains are a source of magnesium and of course he has to cut these out. I'm a patient not a doctor but I would be reluctant to put a child on supplements as they should get all they need from food. Also, magnesium supplements can cause loose stools.

It may be that he is on too much hormone, you would need the latest blood test results to confirm. When you get around coeliac there is better absorption of levothyroxine and so levels can go too high. Try and get hold of the actual results.

helvella profile image
helvellaAdministrator

It could most certainly be something to do with the make he is getting. It is (as you are obviously aware) usually a good idea to stick with the same make all the time.

However, if that is even possibly the cause, you need to check by trying other makes.

Might be best to try a lactose-free product. Which could be Glenmark or Teva. (There are two new makes approved - Ranbaxy and Intermed - but I'm not aware that anyone has yet received either of them.)

You might see lots of negative opinion about Teva - but some people find it the very best of all the available products. We are all different!

I'd like to think that as it is one of the least expensive medicines available, your GP won't be too unhelpful in giving you a new prescription.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/12N...

The document also includes levothyroxine oral solutions - in case you decide to try that route.

When I saw Dr Peatfield he suggested taking thyroid hormones with food as he said it's better for the stomach. I know that on here it is usually recommended to take it on an empty stomach, but many of us do take it with food. The main thing is to do it the same way all the time.

This is also recommended by Dr Myhill who is an advisor to Thyroid UK. Here's a link to a page of her website.

drmyhill.co.uk/wiki/Thyroid...

She quotes from Dr Kenneth Blanchard, who said that for most patients it did not affect their dose. He also said that his theory is that thyroid hormone contacting the stomach wall has never occurred in the evolution of the human race until we started taking oral thyroid.

From my own experience I can suggest that it's much simpler to take thyroid meds with a meal and not have to worry about waiting for half an hour etc. I do make sure that I don't drink coffee or tea with any meal where I've taken thyroid hormones.

Your son may well have a sensitive stomach lining which objects to having a pill in contact with it. I understand that he's coeliac, but he may also have other food sensitivities.

I hope that you can sort this out for him.

jimh111 profile image
jimh111 in reply to Anthea55

Good idea, as long as you are fairly consistent the rate of absorption will be compensated by dose adjustment. The point about thyroid hormone not contacting the stomach is wrong, thyroid hormone is continually released into the gut and reabsorbed. (I’m assuming he meant the gut and not literally the stomach).

radd profile image
radd in reply to jimh111

jimh111,

Nope, he mentions the 'stomach,' although I thought he referenced this with weight gain as the Levo interfered with leptin & ghrelin levels (hormones produced by the stomach that have an effect on weight) 🤷‍♀️.

jimh111 profile image
jimh111 in reply to radd

I see, this gets rather complicated and will distract from this post. The main point is to be consistent and dose adjustment will compensate for any variations in absorption rate. Generally I would take levothyroxine away from heavy meals, bran or coffee.

helvella profile image
helvellaAdministrator in reply to Anthea55

He also said that his theory is that thyroid hormone contacting the stomach wall has never occurred in the evolution of the human race until we started taking oral thyroid.

That is a rather overblown way of making what should be a simple scientific/technical /medical claim/observation.

In addition to the correct point made by jimh111 , there are many, many reports of people consuming various foods containing thyroid hormone. These include animals in which questionable butchering left thyroid tissue which should have been removed. Through all vertebrates and even lower-order animals like Pacific oysters.

Fair enough if you or Blanchard point out that the quantities, the concentrations, the circumstances are different to those that occur when swallowing tablets. In which case he should not make a blanket and absolute claim which is demonstrably not true. Simply word the claim such that is reflects what is known.

Litatamon profile image
Litatamon in reply to Anthea55

How interesting Anthea.

Laralou36 profile image
Laralou36 in reply to Anthea55

Thanks for your reply. I will try giving it with food and see if that helps. I think like someone else said it could be the fillers in this brand of levothyroxine because it’s been since they changed the brand. Hopefully a different one will be better for him

Have you checked to see what the fillers are? The pharmacy should know. Many times those can cause a reaction. Best wishes and God bless!

helvella profile image
helvellaAdministrator in reply to Jbrooke

The excipients are listed in the Patient Information Leaflets which are readily available. (Though they should be supplied when dispensed - and usually are as UK products are mostly supplied in original packaging with the PIL inside.)

Jbrooke profile image
Jbrooke in reply to helvella

Well that’s good because some of the fillers in the medication can cause a reaction (i.e. dairy, gluten, peanuts, etc).

helvella profile image
helvellaAdministrator in reply to Jbrooke

One of the reasons for my medicines document is to try to provide links to such information for all the thyroid hormone products members are likely to come across - around the world.

It is not, and never will be, complete but I keep updating it when I find more information and can understand it sufficiently well!

Laralou36 profile image
Laralou36 in reply to Jbrooke

Thankyou I will change brands I think as it’s been since he’s been by this certain brand so hopefully it will help

Hedgeree profile image
Hedgeree in reply to Laralou36

If it contains acacia as a filler (which I think it does) then that can cause excess gas and bloating, nausea and loose stools.

Again I've read on the forum some having issues with acacia and avoid any levo that has it listed as an ingredient.

Hibs1 profile image
Hibs1 in reply to Hedgeree

Acacia was definitely a problem for me in the levothyoxine and T3. I also have coeliac disease

Jbrooke profile image
Jbrooke in reply to Laralou36

Yes, I have been on the 50mg and it is white (no dye) and it did have a couple potential allergens as fillers. You will have to double check. Best wishes!

Laralou, this is probably not helpful but I have had consistent gas issues since medicated that did not exist prior. If I could afford a lactose free equivalent I would. We do not have the lactose free options that are available in the UK. I simply would make that change and see. But then again you are taking it with milk anyway.

Also I believe the dye in my increase tablet was even more bothersome in this area. And they were simply different colours.

Synthroid 50 mcg and generic here have no dyes, not sure of other manufacturers. That could be it right there for him, either way. So maybe getting 75 with a 50 & a cut in half 50 would work better.

Laralou36 profile image
Laralou36 in reply to Litatamon

Funnily enough he’s been taking it with lactose free milk because we wondered if lactose was the problem will definately be asking for a change of brand

SeasideSusie profile image
SeasideSusieAdministrator in reply to Laralou36

Laralou36

What brand is he taking?

Teva is a lactose free brand but contains mannitol instead which is believed to be the source of adverse reactions in some members; however, there are some members who find this brand the best for them.

Other lactose free brands are

Aristo

Glenmark

and a couple of others not yet generally available.

You can find details of all brands of Levothyroxine in helvella's document here:

dropbox.com/s/wfhrlmb5983co...

and click on the first yellow T4 tab under UK

No UK thyroid medication is called Synthroid, they're all called Levothyroxine, and as far as I am aware all UK thyroid medication contains no colouring.

Hiya he takes the Mercury pharma brand they changed it recently from the teva as they were struggling to get hold of teva. He always got on fine with teva brand before

SeasideSusie profile image
SeasideSusieAdministrator in reply to Laralou36

OK, so Mercury Pharma is made by Advanz, who also make Eltroxin brand, and they contain lactose, so it would seem that he needs a lactose free brand which your GP should stipulate.

If a brand is stipulated on your prescription - in the first line - the pharmacy must supply that brand. If they haven't got it you can get your prescription back and ring round to find a pharmacy that can supply.

So now you have the names of all the lactose free brands, those that I have mentioned plus the others in Helvella's document.

Also, Northstar 25mcg only (not the 50/100mcg dose size) are made by Teva so that's something to bear in mind.

helvella profile image
helvellaAdministrator in reply to Litatamon

It is suggested that, sometime soon, Canada will be seeing Genix supplied levothyroxine - made by Acme in India (now being taken over by PAG).

However, I have not yet managed to find their ingredients. Nor how it will be branded. In 11 dosages 12.5 to 300 micrograms.

helvella profile image
helvellaAdministrator in reply to helvella

IBSA Tirocaps are also approved by Health Canada - containing gelatin, water and glycerin. Dosages 13 to 200 micrograms.

No idea what you might have to do to get them prescribed.

Litatamon profile image
Litatamon in reply to helvella

Thank you so much helvella. Your guide is incredible. And I have used it to make inquiries.

I have made several phone calls to pharmacies about lactose-,free options, to no avail (so far!)

Two pharmacists told me that all levothyroxine options contain lactose. Not just what they offer, all. Insert whatever word you want here - smiling.

When I am one pill for my dosage I can get Synthroid for as low as $15 for a 90 day supply (now doubled due to lack of options at high dosages). For that I am very lucky, as I do not have coverage and have to severely budget.

helvella profile image
helvellaAdministrator in reply to Litatamon

I am in the process of adding Canada levothyroxine products.

Hi Laralou36,

Are the multivitamins your son takes gluten free?

Also I had a quick look and one of the products from the Abidec Multivitamins range contains peanut oil; does your son have any problems with peanuts?

From my reading on the forum it's usually advised to avoid multivitamins as they often contain certain vitamins that shouldn't be taken together though I'm not sure if that also applies to children's multivitamins. Another experienced forum member or admin will be able to advise you.

Hope you find what's causing his digestive issues. It must be very miserable for him.

Best wishes.

Laralou36 profile image
Laralou36 in reply to Hedgeree

Hiya yes they are gluten free they were recommended by his dietician. To be honest I amNot consistent in giving him them I forget most the time so not sure it would be that. He seems ok in himself most of the time but his wind issues are bothering him bless him

ICE187 profile image
ICE187 in reply to Laralou36

Are you talking hours or days of missed doses?

Laralou36 profile image
Laralou36 in reply to ICE187

Multivitamins not levothyroxine. He doesn’t actually need a multivitamin as his levels are fine

Hi Laralou36 😊

I’m guessing “levels are fine” means Doc says in range or ‘NORMAL’. . Ranges are a guide and where each of us sits in the range to be optimal is different. Most Doctors don’t know this. They will leave people vitamin deficient so long as they scrape into the bottom of the range. There are loads of links on this site with useful info. All my knowledge on thyroid hormone and vitamin levels have been gleaned from this site - the medical profession are worse than useless (I have come across no exceptions thus far) Getting the patient between the goalposts is not in itself enough.

I’m so sorry you are going through this - just awful to have a little one in pain ❤️

Ginger’s suggestion of brand change is a good call also. I’m on Teva and do well but as others have said the fillers (excipients) can cause havoc. I’ve fixed the brand through the meds management team at our surgery and with the pharmacy and double check when I pick up.

I have been lucky, going gluten-free free cured my “jet propulsion” and has saved my blushes for well over a year 🤣. Knocking off milk and yogurt and cream finally sorted the remains of heartburn, I can get away with occasional cheese and butter though (strange!).

Not sure if it is worth mentioning, but I did notice certain combos of foods together - even gluten-free would kick off the heartburn/tummy discomfort. High fat , high sugar high carb, even the gluten-free variety desserts were doing it to me so have to be extremely careful.

Perhaps keep a food diary for a while?

Really hope he gets sorted soon 😊👍❤️

I know we're all different, but I'm a coeliac too and my stomach pains nd bloating came back before I was diagnosed with hashis, it settled except for when I've had Teva or mercury pharma which caused severe stomach pains and brain fog. It might be worth seeing if you can get your son accord or northstar (50s and 100s only) - my gp prescribes additoinal 50s for me to cut in half instead of 25s from another brand due to the reaction I've had to the other brands.

Thanks for that I will defo get a change of brand

ICE187 profile image
ICE187 in reply to Laralou36

I haven't been diagnosed yet with celiac/coeliac or hashis as my doctor hasn't ran the tests, but I have noticed that "some" gluten foods and dairy will mess me up bad for a day or 2. Gas, bloating, burping, burning pains in my mid to lower back. It can be something as simple as my hamburger meat touching another hamburger patty that was seasoned different. The strange part is I can eat some gluten foods without any issues, but other gluten foods will instantly trigger the above. Any dairy milk triggers it. I now drink rice milk. I have to take digestive enzymes before eating to help. I'm going to assume I have celiac/coeliac. I am quickly getting away from all gluten and taking the vitamins needed. I hope you get the answers for your son.

Has your son been tested for viral, bacteria infections or parasites? Chances are your endocrinologist isn’t going to look at that, but a functional medicine doc can look into the root cause of his autoimmune diseases and chronic inflammation. Does your son/family follow the Autoimmune Protocol Diet? It’s a game changer for sure. Autoimmunity is not curable but can go into remission. I wish you luck and hope your son feels better soon.

No I’m going to speak to the doctor about it again tomorrow but they never do anything. Last time they just told me they were concerned because he doesn’t have diarrhoea or frequent stools. His diet is hard work as it is so I’m not sure about following an auto immune diet aswell

JenniferW profile image
JenniferW in reply to Laralou36

Hi Laralou

When I am underactive I get constipation, it could be a symptom of him being borderline underactive.

Best of luck with the poor lad

Jennifer

Hello,

Have you ever tried switching over to goat milk and goat kefir? Some hypos struggle with dairy and do better with goat dairy. I drink a glass a day of goat kefir to help with my digestive issues. Started out with half a glass in the beginning

Laralou36 profile image
Laralou36 in reply to Imaaan

When he was a baby he had cows milk protein intolerance. I do sometimes wonder if he has a problem with dairy. I really don’t think I’m going to be able to stop dairy aswell As gluten. He struggles to accept anything new and he doesn’t eat great as it is. It’s hard.

Imaaan profile image
Imaaan in reply to Laralou36

If he can tolerate chocolate, you could add it and make it into chocolate milk. Hope his health improves.

Laralou36 profile image
Laralou36 in reply to Imaaan

thanks very much worth a try

SlowDragon profile image
SlowDragonAdministrator in reply to Laralou36

Lactose intolerance can be a consequence of undiagnosed coeliac and should improve once on gluten free diet

coeliac.org.uk/information-...

coeliac.org.uk/healthcare-p...

It may be the acacia in Mercury Pharma tablets upsetting him

Keep trying different pharmacies to get hold of Teva brand

Small independent pharmacies are often more helpful

Have you tried eliminating wheat and gluten from his diet?.. It might sound drastic but it may may a big difference. It did for my daughters, son and myself.There are lots of alternatives for him to try and it could make a big difference to brain fog, digestive upsets and generally feeling well.

Hope thus helps, bless him he's so young.

Laralou36 profile image
Laralou36 in reply to Sisternina

He’s coeliac so he doesn’t have any wheat or gluten been diagnosed 4 years x

Jeppy profile image
Jeppy in reply to Laralou36

If a thought , the lactose free milks taste nice to me. Morrisons do good range I buy lactose free ‘milky drink’ from Aldi. Nobody knows when I use it for brews etc. For me, gas and heartburn no more it’s like a miracle.

..Take a probiotic for a few days or live cultures if symptoms appear also digestive enzymes. Unsure about young age just looked on bottles and not mentioned

Good luck poor little chap

I had been taking Mercury Pharma and Almus for last 5 years. I recently had a stomach virus and since that have been sensitive to Mercury Pharma which may be because of the Acacia filling. I’m ok with Almus though. Maybe just stay away from Mercury Pharma for the moment and see if that helps at all, maybe worth a try.

Laralou36 profile image
Laralou36 in reply to Tristy

Yes I think it may be the way forward Thankyou will try it

You could also look into Tirosint. It is totally free of everything as far as excipients. It comes in a liquid or in a gel cap.

helvella profile image
helvellaAdministrator in reply to Luna1390

Tirosint and Tirosint Sol are, effectively, unobtainable in the UK.

As Imaan said earlier, you could try goats milk. My sons both had terrible colic as babies and different milk formulas were tried, including reduced lactose. It was not the lactose in the milk that was the problem though it was the protien. My one son was later diagnosed a celiac. I have had digestive issues all my life and have graves disease which is auto immune. I find having goats milk is gentle on the digestive system. I can only tolerate a small amount of cows milk, even lactose reduced. Goats milk protien is different to the protien in cows milk and easier to digest. Taste wise I don't think your son would notice the difference, maybe a bit sweeter? It is certainly the best alternative to cows milk we have found, both from a taste point of view and easy on the stomach. One of the worst offenders for pain and gas was soya. Rice milk caused constipation, some nut ones had a load of sugar in, others tasted weird. It is very difficult with diet and children I hope you can sort out the problems, it could be a bit of both, tablet brand and diet related.

Anthea55 profile image
Anthea55 in reply to mothsballs

An aunt of mine bred goats. I was told that she had regular customers who couldn't tolerate cow's milk, but could take goats' milk.

Hi. I have had stomach problems my whole life. When I was young my mom gave me cereal with milk and everyday I felt sike, nauseous, gassy, lethargic and bloated. When I was 19 yes old a doctor finally diagnosed a lactose intolerance. From there on I eventually eliminated all diary. When I do have some I make sure I take a lactaid pill with the smallest amount of milk, cheese or ice cream. I even have to take a pill with lactose free milk. I still get sick on those lactose free milk. The best I feel is eliminating ALL dairy and eat as much gluten free as possible although gluten doesn't cause too many problems. Many people with thyroid problems end up having to eliminate these from their diets. I wish my mom would have figured this out early and kept me from milk when I was a kid. When the intestines get constantly inflamed they have trouble absorbing nutrients and can cause nutritional or vitamin deficiences which in turn can cause things like thyroid problems, anemia etc. If you cut these foods out you may see that the thyroid meds eventually work better on a lower dose. Secondly, if he's getting too much thyroid medication he can get diahrrea and insomnia. Third, the acacia and lactose in the pill can be a problem. So, I would suggest trying to get off all dairy, find a brand with no acacia and no lactose and see if maybe the doctor can put him on 50mcg and take just half of a 25mcg to make the full dose 62.5mcg everyday. Young kids and older adults are very sensitive to changes in thyroid doses so start low and slow is a safer way to go. And please stay with the same dose everyday is better to keep homeostasis.

Just a little update the doctor told me it wouldnt be the brand causing problems (absolute rubbish!) but my son has been started back on the teva brand he used to have and so far so good 🤞

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