My 11 year old daughter was recently diagnosed with coeliac disease. She had no symptoms, but I was dispairing of her restricted diet and went to the doctor in the hope of being referred to a dietician. The 2nd set of blood tests revealed that she had a slightly underactive throid and we were then referred to a paediatric consultant. She again has no symptoms. She is tall, thin and very active. No treatment was agreed at this stage and we agreed to have more blood tests done 3 months later. This set showed that her T4 was now normal. Her TSH was raised at 7.66, but this time they also did and antibody test which show that her thyroid peroxidase antibody levels are raised at 183. I am under increasing pressure from the consultant to start her on Thyroxine, but as she show no symptoms I am reluctant to do this. Should I ask for further tests? Should I just agree with the consultant?
I am reluctant to start my 11 year old daughter... - Thyroid UK
I am reluctant to start my 11 year old daughter on Thyroxine.
Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Starting your daughter on Levothyroxine now will delay progression of hypothyroidism. It is better to do it now before she becomes symptomatic which she will if TSH rises much more.
Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
What Clutter and Greygoose have said.
I know it seems very depressing with the thought of one so young to be affected by this condition and the thought of being on medication, probably for life. As has been said some of the symptoms can be very subtle and the list is very long!
The reason for this long list is that the active T3 is a cornerstone to just about every process at a cellular level in the body.
There is also the fact that your daughter is approaching puberty and all the changes that will happen to her as she becomes a young woman that it will be very beneficial to help her body to be in tip-top working condition as far as can be aided.
The only thing I can add to the above is that a lot of people have autoimmune issues and are asymptomatic. You can have a problem brewing for a long time before you feel unwell and a young person w reserves of energy and enthusiasm may not show the same signs as an adult. Coeliac in particular is important to control whether there are symptoms or not.
If you are questioning the actual diagnoses - if you suspect they're incorrect - you can always request a second opinion, but if these are your daughters incontrovertible health issues, it's good that it was all caught before she shows signs of illness. Many of us have suffered for years and in some ways the illness begins to define you so it can be a long road back not only in terms of restoring good health but restoring self-image. If your daughter can be treated early so she remains unscathed by symptoms I'm happy for her.
Of course it is less than ideal that she has these problems at such a young age, and I'm sorry for both of you, but I wish her success w her treatment and continued good health.
My opinion - it's good she has been diagnosed coeliac and diet alone may in time improve the thyroid numbers without medication.
However, my son had a TSH of 4 (not high enough for treatment) when his body tried to enter puberty at 14 and he crashed completely - everything went wrong.
When the thyroid struggles it uses up all the minerals and iron in the body to keep things level and when it uses them up it can't carry on - in my opinion this caused his microcytic anemia as well.
They still wouldn't treat him even though he had (still has) a goitre and lost 5 months of school. We treated his issues with minerals to adress his adreanals and b vitamins because he became so low. The TSH normalised, he entered puberty and a year and a half later he is now taller than me and has bigger feet than his big brother.
I wish he had been offered Thyroxine in his time of need but supplements have done it . He is negative coeliac so won't give up gluten even though his brother and I are non coeliac gluten sensitive - he will eventually if needed.
BTW- when he was at his worse the school tested him for dyslexia which just showed he had 'slow prossesing speed' and he gets an extra 25% time on all exams - it can massively affect schooling and brain function so keep an eye on this for warning signs. (Now he is better he won't need the extra time but has it for his gcses anyway, happy days)
For mineral balancing the magnesium advocacy group on facebook has been a saviour to us.
What is wrong with starting her on thyroxine? She may not be telling you all her symptoms in fact she may not know them all! I do not see the problem.
Thank you for all your replies above, they have been really helpful. My reluctance to put her on thyroxine stems from her young age and lack of symptoms and the daunting thought of her having to be on medication for the rest of her life. However, if it is the right thing to do, then so be it. We have an appointment with the consultant on Weds for the latest set of blood tests, so if there is no change I will heed all your advice and also ask for her T3 to be tested as well.
Don't think of it as medication. Levo isn't a drug, it doesn't change anything in the body, as a drug does. It's just replacing something her body can no-longer make in sufficient quantity. And, you'll be amazed at how quickly one gets into the routine of taking it. It becomes second nature, in the end.
Now that you know her TPOAb is 183, I would clean up her diet just as much as possible, wait about 12 months, and test again. My experience is that, from the time I removed gluten from my diet, it took almost 18 months to get rid of TPO antibodies. If the antibodies go away and her TSH drops, there is no reason to burden her with taking thyroxine.
Ultimately this comes down to a matter of symptoms. If she has none of the 300+ symptoms of hypothyroidism, then making her take thyroid hormone is not appropriate. I'm assuming she is being honest with you about symptoms; she is not hiding anything, like feeling low and depressed. Did the consultant say she has enteropathy? If so, you need to let that heal, *then* decide what to do.
The only symptom I could possibly say she has is that she does say she feels tired sometimes, but this does not stop her doing anything. She is never too tired to go to school or hang out with friends etc. I think she would tell me about anything else. I know you can't be 100% sure she would, but I do encourage and open honest relationship both ways.
I really really DON'T understand why people have such bees in their bonnets about taking drugs or in this case, hormones our bodies cannot make. We are the lucky ones people, in days of yore we would have slowly but very surely DIED!
I would like everyone to think about that, less than 80 odd years age we would have had an extremely thin (or weighty) time of it, mocked as the slow fat village idiot, then dying way before our allotted span.
Thank God I live in the time of freely available cheap medicine that can replace what my poor immune system can't do, so I have the chance of a good life. I have also been the lucky recipient of three rounds of heroic spinal surgery which mean I can still walk, albeit with daily doses of industrial grade pain relief but do I care? No, I do not, I neck them down with gay abandon, as without them I am a very miserable little person. When I hear people saying I hate taking drugs, I just have to laugh and what most of us have to do pales into insignificance next to the travails of the transplanted and Cystic Fibrosis. Those poor kids have to take an absolute handful of drugs, some the size of horse pills at EVERY single meal, so I don't think having to take a few tiny little tablets is so awful. I know it isn't a competition, I lived in a shoebox, my God your had the luxury of a shoebox but I'm sure people get my drift. It is wonderful that there is treatment for what ails us and long may it be so. Peace people.
I have a medical background and autoimmune Hashimotos that I passed onto both my children. I would agree to start her on medication, of course only my opinion. Her tsh is high and would be better 2.0 and under. Some doctors say 3.0 and under as you see she is hi. When you have antibodies in you system that means the thyroid is under attack. A full thyroid panel after a couple of weeks on the medicine and follow her blood test monthly. Autoimmune antibodies means she has an autoimmune disease that decide to attack her thyroid but it doesn't always stop there. There are 9 episodes online called the thyroid secret that can explain everything to you. Dr Isabella
They were on the internet last weak and I learned so much more than I already knew.
Look up "Izabella Wentz Thyroid Secret"....She did a video broadcasting about Thyroid issues...one thematic was about children and Thyroid issues...Iam sure you will find some usefull info there...I totally understand your concern about putting your child on medication! We often forget that the medications just relieves the symptoms but not heal the thyroid...Dr Izabella Wentz and other experts in this video broadcast series seem to treat their patients from a different approach...they try to find the root cause of the problem rather than just treating the symptoms...I wish you and your daughter good luck and energy to find a solution...It seems not an easy way to aproach lots of doctors as they don't know themselves often...hope you find one who work with you rather over you...
Firstly, I’d like to say you’re right to ‘ask the experts’ on this forum regarding your daughter’s diagnosis. Without doubt, they know an awful lot more than most GPs and Endocrinologists.
From a personal perspective, I’m no expert but I am the product of a low thyroid diagnosed 15-20 years too late due to TSH guidelines and the internet not having being invented!
Trust me, you do not want to inflict unnecessary pain on your baby, however big she now is, and however little her symptoms currently appear.
I started off like your daughter, and if I could have given my young self simple medication to avoid the health hell that is still ongoing in my life at 41, 15 years AFTER my diagnosis, then I would have moved heaven and earth to be fully functioning and well through my teens and beyond.
You are creating strong foundations for the future of your daughter’s health and well-being.
‘Not medicating’ isn’t being kind here: your child is not being prescribed medication like sweeties, as some kids are over-medicated in America, for example. It’s not like your daughter is one of those effervescent, energetic kids who play up because they’re stuck indoors in front of a screen all day rather than running around letting off steam like they’re supposed to (and yes, my eldest has ADHD and I know the difference between needing meds, and prescribing meds because their lifestyle and diet are unhealthy and not serving them well).
No, your child needs help with her thyroid as a diabetic would need insulin. This is *that* important to her wellbeing.
Our girls are 8 and 10 and I am keeping a very close eye on them in case they develop hypothyroid symptoms similar to mine.
So on a personal level, I couldn’t be more concerned about you not taking your doctor’s advice about medicating your child for a thyroid condition.
The irony is, too, that most doctors are very poor at monitoring and treating the thyroid, so no doubt at some stage you may end up disregarding your GP or Endo’s advice and going it alone by self-medicating.
In fact, you may already need extra private blood tests on her thyroid function that the NHS don’t usually provide, as well as considering supplementing her diet - especially considering her age/ puberty.
But right now, since your doctor is on side and diagnosing and treating correctly (for once!) please start with heeding their advice.
Finally, please keep us updated with your daughter’s progress. I wish you both all the best.
Haha, just realised how old this post is. But that’s great because it means you can give us an update now!
How is your daughter getting on? Have there been improvements? Does she need T3 as well as T4 Levothryoxine, or is she a good converter?
Hope all is well - your daughter especially
I was diagnosed when i was 14. The year before my symptoms began, I was very very slim and active. My paediatrician at the time told me that some people actually lose weight right before their hypo symptoms start. As you know, it takes a couple of weeks for Thyroxine to build up in your system. How about starting her on half the dose first to see how it goes?
I was literally given a bottle of pills and told that I would have to take the meds forever. No internet, no forums no nothing. I accepted my fate and took them. I went on to lead a normal life, have a baby and a great career. I later needed to add T3 to boost my conversion around the age of 26 and have never looked back since.
If she has no symptoms with a TSH that high, then she's very lucky. But, are you absolutely certain she has no symptoms? Not all hypos put on weight. There are over 300 known symptoms of low thyroid. Are you saying she doesn't have a single one of them?
If she has raised antibodies, then she has Hashimoto's disease. That does not just go away by itself. It will get worse. How long that will take, is anybody's guess, but you can slow down the process by starting thyroid hormone replacement straight away. Her TSH needs to be a lot lower to avoid the Hashi's swings from hypo to 'hyper' and back again.
Also, antibodies themselves can cause symptoms. Going onto thyroid hormone replacement very early, will support the gland during the attacks. In fact, the fact that she is thin and very active, could mean that she's in - or coming out of - a 'hyper' phase at the moment. It won't last.
But, can you tell me why you are reluctant to put her on thyroid hormone replacement? Have you been hearing all sorts of horror stories about it shutting down the thyroid gland, and the like? Ignore them. If you have any doubts, worries or questions, ask them here, instead. Our collective knowledge is greater than that of any single endo or paediatrician. We can help you understand.