Hi my 10 year old daughter has a underactive t... - Thyroid UK

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Hi my 10 year old daughter has a underactive thyroid (the autoimmune type) she was diagnosed 18 months ago and been on thyroxine since.

Sharon710103 profile image
13 Replies

Recently her thyroid levels went high and she experienced tremors, visual problems, headaches and stomach aches. Her thyroxine was reduced 2 weeks ago but she seems to continually panic now about feeling ill. She struggles to get to sleep and then convinces herself she's pale, feels sick and is dizzy. She seems to be turning into a hypochondriac - is this normal?

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Sharon710103 profile image
Sharon710103
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13 Replies

Hi. I'm sorry to hear about your daughter. It must be frightening for her. Speaking as a clinical hypnotherapist here, she's not becoming a hypochondriac, bless her, she is developing anxiety about what has happened to her at a very young age, and no doubt after several visits to doctors, and now having to take tablets. It's a lot for a mature adult to take on board let alone a child with only a child's understanding of things. And the thing about anxiety-induced symptoms is that they are as real as any others, it's just that they are generated by the brain rather than by illness or medication. Reassurance that things will be okay etc will help her, and perhaps an explanation that because she is (understandably) worried, her worry makes her mind create the symptoms of feeling sick and dizzy. Maybe tell her how, on the few occasions I skived a day off school by pretending to my mother that I was ill, I felt so guilty that I actually did start to have the headache or sickness that I'd pretended I had - that's the power of the brain! I wish you both well.

Heloise profile image
Heloise

We aren't doctors but are finding that many doctors seem to have less of an understanding than many of us collectively on the Forum. Is it possible for you to say what doses she started on and what levels her thyroid function tests are. Most of us get printouts of all blood tests and track our progress. It's important to find the level at which she feels best. If she over dosed for a lengthy period she may have become thyrotoxic, or perhaps she stopped converting T4 to FT3 and built up reverse T3. It might even be better to stop all T4 for a day or two and see if it helps and then titer down.

She may be just telling you how she feels. She might even do better on T3 rather than T4. stopthethyroidmadness.com/l...

Marz profile image
Marz

I am so sorry your daughter is having to cope with Hashimotos. The only positive thing is that you have a diagnosis which enables you to move forward. I expect you have read all the books and websites about Hashi's - if not please ask me and I will send them to you. There is an excellent on-line summit about gluten and thyroid...

thethyroidsessions.com/day-...

I know it is a long and difficult journey for you both - but you will get there. I had tummy ache from a very early age and spent hours on the step of my parents bedroom crying hoping they would hear - which of course they did eventually ! ( Farmers are so tired they sleep soundly ! ) After a lifetime of medical struggles/illness I was diagnosed with Hashimotos at 59 - some 9 years ago. ( Take a peep at my edited profile ! ) The improvement has been great and learning from this forum has been invaluable....

thyroidpharmacist.com/1/pos...

Do hope you find something that helps your daughter...lowering the dose may not have been a good idea.

Hennerton profile image
Hennerton

Has she had checks made on her iron levels, ferritin. Vit D B 12 and folate? All of these need to be high in range for her to feel well and process the thyroid hormone. Ask your doc to do a blood test and post results here, together with her thyroid tests.

I do not believe for a minute that she is becoming a hypochondriac and I am sorry if this sounds harsh but you, as her mother, must try to understand what she is going through. Your doctor may have played it all down and told you she just needs to take a pill a day and she will be fine. Sadly it is not that simple as you will see if you read many desperate posts here of people who are still not well after taking their "pill a day". Her levels may also change constantly as she grows up and you will need to be watching for this and helping her to recognize signs and symptoms that things are not right. Obviously you and she must not become anxious but certainly need to keep on top of it. Your doctor is unlikely to do that for you. At the moment she needs lots of hugs and reassurance and definitely not any thoughts of hypochondria.

Sharon710103 profile image
Sharon710103

thank you so much for all your advice. I feel bad now that I've even contemplated her being a hypochondriac. Ur right she was given a tablet and more or less told everything will be fine. It has been for over 12 months and that's why we are both having problems understanding what's happening. I forgot to mention she also has coeliac disease. Her blood tests 3 weeks ago (when she was having tremors etc mentioned in first message) showed her serum free T4 level was 18.9 and her TSH level was 0.02 she was in 75mcg of thyroxine which has now been reduced to 62.5mcg for last 2 weeks. Her tremors, headaches and tummy pains have gone slightly better now. She still gets a lot of feeling sick and dizzy but at night time when she goes to bed she can't settle. She goes at 8.30 and is normally still awake at 11pm and is then crying and frightened that's that's something's wrong and going to happen to her. She has in the past had a very low iron count and been on meds for that a few times but I'm not sure if that was checked with these last results. I'll check at the doctors. Thank you so much for everyone's advise and info it's such a relief to know people understand xx

shaws profile image
shawsAdministrator in reply to Sharon710103

It is understandable that people who haven't had to deal with thyroid gland dysfunction cannot understand when the patient is given medication that they still complain.

The thyroid gland produces the hormones necessary for our body to function and we have billions of cells in our body, and each and every one must have enough T3 for our body to function. If we are 'out' even a little it can play havoc with emotions, etc.

You and your daughter have my sympathy as it is horrible to be diagnosed as an adult and your body feels as it it's under assault (which it is) and the medication you are taking which you expect to feel better makes you feel so much worse and more symptoms. The GP doesn't believe you when you tell him the medication is making more unwell and giving you more clinical symptoms. The GP is following the guidelines which is why most of us still feel unwell.

Evenutally, you do find a dose which makes you feel better. Many do o.k. on levo but most on this site find it doesn't work for them and have to go private, unfortunately.

I used to go to bed and like your daughter sleep evades you. You drop off around midnight and are awake about ten to twenty minutes later.Vitamins/minerals can help but we need proper medication. Maybe your GP can refer your daughter and if you email louise.warvill@thyroiduk.org she may have someone on her list. Or you can post a question asking for anyone with information to private message you as we don't name doctors on the forum.

thyroiduk.org.uk/tuk/treatm...

Sharon710103 profile image
Sharon710103 in reply to shaws

Thank you so much it's good to know she's not alone and 'normal'. As a mum it's so hard to see ur child unwell when they used to be so carefree and happy. I'll definitely use that contact and see if they can help. How do the consultants she's under react to you taking things into ur own hands? X

Hennerton profile image
Hennerton in reply to Sharon710103

I don't think you should exactly take things into your own hands when dealing with a child but certainly try to find a doctor or consultant who is more familiar with children's thyroid probs. it is good that she is gluten free as I believe this helps to control the antibodies caused by Hashis. Btw, her iron and all other results need to be high in range although the doc will probably say all is well, even if she is at the bottom. You might need to tell him that good levels of ferritin are needed to convert T4 to T3. In fact you now need to read everything you can find regarding Thyroid probs, so that you are one step ahead of your GP, who mostly will only use blood test results and ignore symptoms. There are many excellent books as well as huge amounts of info online. I hope she starts to feel better soon and please post again to let us know how she is getting on. Big hug for her from me. x

Louise76 profile image
Louise76 in reply to Sharon710103

Hi my daughter also has the same and is the same age I understand what ur feeling it's horrible not totally understanding how they feel , she had juvenile arthritis from the age of 4 and now this so they say she has an autoimmune problem, I hope ur daughter is ok x

IslandLocal profile image
IslandLocal in reply to Sharon710103

My daughter also has celiacs! What have you done to change the diet now that your daughter has hypo and celiac?

Sharon710103 profile image
Sharon710103

Thank you for your help. I've had a chat to my little one and explained about the anxiety induced symptoms. She seemed to understand and was relieved I think that she's not actually poorly with all these symptoms she thinks she has. She said "mum will u keep reminding me I'm ok" bless her. Her consultant has been quite good and I'll have a proper chat with him now I understand what's actually happening. U mentioned good books to read - are there any specific ones you would recommend? I'll keep you updated on her progress xx

Sharon710103 profile image
Sharon710103

Hi just an update on my daughter. After 6 weeks of reduced thyroxine (62.5mcg) she feels much better and tremors and other symptoms have stopped. I explained to her about symptoms feeling real but are anxiety related and she seemed to understand and is now not having the crying and panic attacks she was. Her blood tests came back today as: vit B12 528, folate 10.1, ferritin 17, serum free T3 5.4, serum free T4 16.9 and serum TSH 0.05

Her ferrotin level seems low when range is 11-307 but GP says ok. Her T4 is just within range (7 - 17) but GP now wants to reduced thyroxine again and I'm concerned this will take us where we've been before with a low T4 next time bloods are taken x

IslandLocal profile image
IslandLocal

My 10 year old daughter just got diagnosed...any thoughts about synthetic vs natural remedies? What positive changes have you seen since takung the meds?

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