Hello I am looking for some support and any advise if possible.
My daughter is 7 years old we have an inherited condition MEN2a which was picked up 7 to 8 years ago so I am still learning about it. The guidelines state that children who inherit this condition should have their thyroid removed by age 5 to prevent cancer from developing. Me and my siblings had our thyroid removed in our 40s when the condition was picked up.. and up until then we were fine without any major health concerns thankfully. With this in mind I am finding it very difficult to make a decision about my 7 year old daughter. My predicament is I know she needs her thyroid removed but im worried about her taking medication from such a young age and how her growth and development might be affected..what her long term effects may be and how her medication will affect her.
So sorry for such a long post I’m just lost and very unsure of what the best route would be.
I would be very grateful of any information or advice given.
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GrandPrix
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I have my ups and down and have had my medication dosage changed a few times. My heart rate is quite high not sure if this is related to the medication as the doctors seem to think everything is fine as mynlevels are all within the normal range. I don’t feel great but do wish I could feel better.
They are almost certainly pushing because they want to get your daughter off their books. It is unlikely to be for your daughter's benefit but is more likely to be for your doctor's benefit.
One of the things that I have read is that different types of thyroid cancer have different risks associated with them. Some thyroid cancers are aggressive and could spread, and some are slow growing and are much less likely to spread. Getting more information about the actual type of cancer your family develops would be well worth doing so you can find out the actual risks involved.
If this genetic condition your family has leads to a slow-growing cancer in the 30s or 40s or 50s then I can't see why it is urgent when your daughter is 7. She will be fitter and healthier with a thyroid during her childhood and young adulthood, and if she gets a scan or MRI plus a thyroid function test once a year, then in my view it would be better to do that than live without a thyroid.
Some links you might find interesting :
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Title : Global Thyroid Cancer Overdiagnosis in Children and Adolescents
It is medullary cancer that is caused by the condition.. I have the same thoughts, if we all had it later in life then what’s to say she won’t follow that same path.. I want her monitored to see how it is but they are stating that this would not change the outcome and they are pushing for the op. . as they are the medics and they are advising what the best route is.
It might not change the outcome. But there will be a huge difference in your daughter's quality of life if she has a thyroidectomy at 7 compared to if she has a thyroidectomy at 45.
I've never been in the situation that you and your daughter are in. But personally I would want to maximise the number of years that I had a chance of being healthy.
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Looking for information on thyroid
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Hi, I’m new here and looking for some guidance 
