My 17yr old daughter was diagnosed with severe hyperthyroidism 2days ago. This has followed severe stomach pains, weight loss of 17kg in last 6months along with other symptoms such as tremors, nausea etc.
She has been prescribed 30mg of Carbimazole per day, and told to take it as one dose. She took the first one this morning (before food) and within moments of eating a small bowl of cereal was in the most severe stomach pain she has ever experienced! I’m wondering if people have also experienced this? Also on the patient leaflet in med box it says dose should be split over the day? Very confused (and all very new to this horrible condition, so also very scared). Watching a loved one in such pain/distress is heartbreaking.
Any advice/ideas would be SO gratefully received! 🙏🏼
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Hyperthyroiddaughter
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I've never been hyperthyroid but I've always read that dose of carbimazole should be split into (usually) 3 or 4 doses across the day.
Thyroid disease of any kind can affect the body's absorption and use of nutrients. So, it would be worth finding out what her iron, vitamin B12, folate, and vitamin D are, and to optimise any that are below optimal.
I think it would be worth her while to take vitamin C (no need to test) as well.
Look at it this way...
If someone has disease X but all nutrients are optimal they will feel much better than if they had disease X and were low in iron and Vitamin B12, for example.
Has your daughter had a Full Blood Count done recently? I think white blood cell info needs to be monitored regularly in people with hyperthyroidism. If yes do you have results you could post? If you have any results and decide to post them please make sure to remove all identifying information - name, date of birth, address, doctor etc.
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Please make sure that you keep records of all blood tests, dates, results, and the relevant ranges for any tests. And on each day that blood is taken for testing record the symptoms that your daughter is suffering from. It's surprisingly easy to forget symptoms or to exaggerate or forget the severity of symptoms as time passes.
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I have no personal experience of hyperthyroidism, but collected some information together in a blog:
helvella - Splitting Carbimazole Doses
A short discussion about Carbimazole primarily focussed on splitting doses but containing other information which may be helpful to anyone taking, or considering, Carbimazole.
This must be a very scary time for both you and your daughter. This is a friendly and supportive forum and members with knowledge of carbimazole will be able to advise. I will tag in PurpleNails and pennyannie .
So we can offer better advice, can you tell us more about your daughters thyroid condition, eg blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of her thyroid health:
Don't forget that the patient is under 18. That can make it more difficult for people to get private tests done. It is always worth checking with the various blood testing companies when they are open whether they will deal with minors.
Thank you SO much! Yup, it’s all feeling pretty overwhelming right now ( I think we’re both still digesting the diagnosis after so many months of hitting brick walls and a previous diagnosis and treatment for Helicobacter Pylori, aswell as a trip to A&E and dietician and a bodged endoscopy 2wks ago). It’s exhausting and heartbreaking in equal measures atm but a huge relief to come across this site and forum as I imagine we’re going to need some help to navigate everything for a while.
I’m afraid that I don’t have any answers to the question about my daughters blood results/ranges yet. The doctor called her the day after her bloodtest to tell her that they had shown her to be ‘incredibly overactive’ and was prescribing her a daily dose of 30mg of Carbimazole to be followed with bloods again in 4wks and a follow up appointment. He gave her no details of the actual result numbers/ranges.
I think when she has her appointment I will ask him then!
I was diagnosed with a thyroid condition after having an endoscopy (highlighting gastritis in my case). Encouraged by this forum, I trialled a gluten free diet and this fully resolved all previous stomach issues. If you are considering a GF trial for your daughter, you may want her to first have a coeliac test. This can be easily arranged by GP. Whilst I’m not coeliac, I (like many others here) am certainly gluten intolerant.
My apologies for not mentioning that many private testing companies will only test over 18s (as highlighted by humanbean ) so if you are considering this route, please double check before ordering.
Carbimazole can have some side effects most are manageable and resolve quickly. The stomach issue maybe related to being hyper or it might be a sensitivity to carbimazole or an ingredient in the tablet brand.
Carbimazole is safe to take in a single daily dose, but it’s often more effective to split into smaller doses through out day, especially early on. Carbimazole works by pausing production on new thyroid hormones, so shorter timings between doses has added benefit of slowing production more evenly. It may also help lessen any reaction she’s having to pill.
If it continues to cause this problem speak to your doctor, they may consider switching to PTU. It’s second choice anti thyroid.
Later on when levels are more stable a daily dose is usually more convenient.
Thyroid levels must be retested 6 weeks after starting carbimazole. GPs sometimes think it’s ok to refer to endocrinology & assume they will deal from then on, but often there are wait lists. GP practices can arrange Thyroid function & TPO antibodies, labs may add TG antibodies if positive. It may require a specialist to arrange TSI or Trab.
I'm so sorry to hear how much your daughter is suffering! I was terribly hyper this time last year and I'm still taking carbimazole. I've slowly reduced the dose over the past year. Carbimazole helps a lot but takes a few weeks to kick in and notice a difference. For the h pylori, have you tried zinc carnosine and mastic gum? I took a pill with these inside and I found them to be so soothing for my gut. All the best.
Really sorry that your daughter is experiencing this. I am much older but also had very high levels when diagnosed (not only above range but also above the measurable limit). I could barely walk. It can be debilitating.
I was on 40mg of carbimazole initially and I took it in one go because I wanted to make sure I didn't forget. I would say that I started to feel better after a week or so, very quickly and didn't experience side effects apart from a weird rash on my neck.
I understand that only the hospital can order antibody tests so you can get a diagnosis about Graves disease or thyroiditis. Even with very high levels and an urgent GP request, this took 6 weeks for me. The carbimazole should start to work quickly, probably better to split dose as suggested. Also, has she been prescribed propanolol for tremors, high heart rate etc?
It's early days but do read as much as you can so you can advocate for your daughter. This is such a valuable forum for help and advice or even just to vent.
I'm now 67 and was diagnosed as hyperthyroid when in my early 20's. Whilst everyone is different, carbimazole quickly stabilised my health and I have been fortunate to have no serious health issues since.
I hope it's the same for your daughter and her health settles down quickly, once the correct dosage is achieved.
Hello Hyperthyroiddaughter and welcome to the forum :
There are 2 main reasons why your daughter is said to be ' hyperthyroid ' and if there are no clinical symptoms such as an obvious swelling around the neck or trouble swallowing and or breathing - we are looking at a Auto Immune disease - or both - as when the thyroid malfunctions there can be more than one set of antibodies found over range and positive in the blood sample.
Graves Disease unfortunately named after the man who first wrote / discovered the health issue - Robert James Graves - is treated with an Anti Thyroid - such as Carbimazole and all this does is semi block the thyroid hormones T3 and T4 rising higher and higher.
Slowly the thyroid hormones will fall back down into range and the AT drug is reduced accordingly as we need to maintain T3 and T4 in the ranges - otherwise if the thyroid hormones fall too far through the ranges your daughter may start to experience the equally disabling symptoms of hypothyroidism and too low a level of T3 and T4 to function on.
So it's a little bit like being on a see saw - one end your hyperthyroid - sky high - and the other end you have hypothyroid - and stuck in the mud - and no fun at either end -
so the AT drug is currently semi-blocking new, own daily thyroid hormone production - reducing down your daughters ' extreme ' levels - ( I really do not understand why such words are used but not qualified and simply frighten people ) - which hopefully will alleviate symptoms - while we wait for her immune system to calm down again and hopefully her thyroid reset itself without the need for any drugs.
There is an alternative to Carbimazole if this Anti Thyroid drug does not suit your daughter - Propylthiouracil - PTU for short :
The NHS generally allocate a treatment window of around 15-18 months with an AT drug - though we now have research suggesting different - as detailed below:-
and for Hashimoto's - named after the Japanese physician who first wrote about this thyroid health issue which is not treated with any medication as the T3 and T4 do not keep rising, as with Graves, but fall down back into range themselves - as this AI disease over time, systematically sets out to destroy and disable the thyroid and longer term with the patient needing thyroid hormone replacement.
Initially the only way to tell these 2 AI diseases apart is to run an Antibody blood test and then you may see different sets of antibody readings looking like - TPO / TgAB - TSI - TRab - with results and ranges or maybe just a single line detailing TSH Thyroid Receptor ABs and a single number and cut off range -
There's like a genetic pre-disposition to both AI diseases - with family members maybe a generation away from your daughter dealing with some thyroid health issue - and Graves tends to get triggered at puberty, pregnancy, child birth and menopause with stress and anxiety being common triggers.
How are your daughters eyes ?
If dry, gritty, burning, light sensitive, or watering all the time - please ensure if using anything to relive the discomfort - that all Over the Counter spays, drops or ointments are all Preservative Free even those prescribed.
If with Graves - the most rounded of all I researched is that of Elaine Moore - books and website - which we now need to access through the archives -
Having been severely overactive like your daughter, I can advise that it takes a while for the carbimazol to kick in. But persevere. Symptoms will get better. I was referred to the endocrinology clinic at my local hospital and they monitored progress. I also developed thyroid eye disease and had to visit the eye hospital as well. Eventually the hyper symptoms changed to hypo symptoms and I was discharged on a permanent dose of levothroxine. I still get hyper symptoms and believe this is called hashimotos.
I was similar to you daughter I was servery hyperthyroid , I also had server stomach issues when eating and I eventually ended up vomiting everything back, I couldn't stomach the anti thyroid drugs both carbimazol & ptu.
It took my silly surgery years to eventually diagnose me as hyperthyroid [ very over active thyroid] and another 4 months of me telling my GP I couldn't keep the anti thyroid drug in my stomach [ I also split my dose throughout the day].
I was unfortunately rushed into hospital in thyroid storm, so keep an eye on your daughter, I became lethargic and couldn't wake up and vomited.
Also you should ask or in my case I demand a full thyroid blood count with thyroid anti bodies, when I was in hospital in thyroid storm the ward doctor also got me checked for graves disease, in most cases a very overactive thyroid is usually graves, but most GPS don't know this ...as my ward doctor said.." first we must establish what type of thyroid condition you have, then we need an uptake scan on your thyroid.
I was informed that the anti thyroid drugs wouldn't have worked anyway as I was thyrotoxic to high levels of T3..T4 my TSH was undetectable.
The horrid truth is GPS and even some specialist's ( endocrinologists) don't even understand the complexity of the thyroid and push us off with medications, if your daughter is not responding well to the anti thyroid drug tell your GP, if like me she is not absorbing it it will not be doing its job in keeping her thyroid levels stable.
Please do some research into hyperthyroidism ( graves disease)
I hope your daughter receives the care she needs❤️
stomach issues can be a side effect of carbimazole in the early days. When I started on 40mg a day I was told to take it as one dose which I still do first thing in the morning. Taking it not too close to meal times can help. Blood test are done regularly every 6 weeks. The GP should have discussed potential serious side effects and what to do about symptoms such as sore throat which can indicate a drop in white blood cell count which needs a full blood count test on that day.
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