Child recently diagnosed with hypothyroid - possibly autoimmune - advice please

[massey3070]

My 10 year old daughter has just been through a series of tests which I think are now saying she has hypothyroidism.  No-one has actually said Hashimoto's but from my research I am thinking this is the probable diagnosis.  She has been suffering with lower abdominal pain on and off for 4 years but in recent months this has ramped up and she is now experiencing this every day, which prompted the testing.  Her TFT was 7.0, T4 is 11.8 and her antibodies are over 600.  She has just started on 50mcg of levothyroxine and this was has been told she is vitamin d defecient and is about to stat on an 8 week course of vitamin d supplemens.  To add to this she has already well through puberty and started her periods before Christmas, she is on the edge for the definition of precocious puberty.  In all other things she doesnt fit the 'norm' for childhood hypothyroidism, she is tall for her age, is doing extremely well at school and is ahead of where she should be for her age developmentally.

I suppose my question is what can I expect over the next few months and does anyone have experience of helping a child through this diagnosis.  I know we still have more tests to go through, as we dont know yet why she has the abdominal pain - is it related to the thyroid or not????  And she has blood and protein in her urine which is also being investigated and we are waiting for results on that.  The docs understandably dont want to to do too much until we can see what effet the other 2 treatments might have but as I a parent want to know the answers asap!  Any advice greatly received.

[shaws]

I'm sorry I am unable to help but I know it is a worry for the parents. In the meantime this is a link and it's a helpful site (not like this forum where questions are asked/answered).

hypothyroidmom.com/

With antibodies I think you are right to consider Hashimotos (Autoimmune Thyroid Disease).

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[Hidden]

Hi. I'm sorry that your daughter is going through all this. It's hard to understand as an adult, never mind a child.

I have hashimotos, but only found that out a dew weeks ago thanks to this forum. But I was diagnosed with hypothyroidism 18 years ago. Gluten free diet is though to help and I've just started it.

With hashimotos disease people are often found to have deficiencies in vitamin d, ferritin, folate and b12 so they should be tested too. I get abdominal pain too. Deficiencies can cause many symptoms. If your doctor doesn't do them, mine didn't, then you can fet them done privately with blue horizon. Have you looked at our mother site? There is loads of information on it about testing and hypothyroidism and hashimotos. I don't know the differences with children, the site may have information.

If you can post the results on here, with the ranges, and someone who knows about hypothyroidism in children may be able to help interpret them.

In the meantime, good luck.

[massey3070 in reply to Hidden]

Thanks.  What is the mother site?  I stumbled accross this forum while googling for more information.  I havent got her results, the numbers are what I remember from what the docs have told me.  Thanks for the advice on the private testing for the defeciencies, I will definitely look into this.

I have read about the GF diet and am also giving this some thought.  SHe has already been tested for coeliac and that was negative.  The strange thing is she is always hungry and craves carbs all the time.  From what I have read there arent many differences between child and adult symptoms for Hashimotos, I just want to understand what other influences he hormonal changes she is experiences will have on her.

[Hidden in reply to massey3070]

Hi. The site is thyroiduk.org.uk

There is loads of help there. Look at the health unlocked thyroid forum too. Both have put me on the right track. 

Get your results too, you are entitled to them. When you get her results put yhem in a locked post on the health unlocked thyroid forum and someone will be able to interpret them.

I'm so sorry you and your daughter are going through this and  I hope the information helps.

[Hidden in reply to massey3070]

When I say look on this forum I mean looking through the posts by putting a query, e.g., b12 deficiency or hashimotos disease into the search engine in the top right corner! 

[Jmay88]

I would test for food allergies, like dairy, gluten and eggs. Probiotics would help too. 

[humanbean]

Your daughter might have an ovarian cyst perhaps? The tissue needed to develop a dermoid cyst is often present at birth.

medicinenet.com/script/main...

en.wikipedia.org/wiki/Dermo...

If it hasn't already been done, ask for an ultrasound scan to be done if the pain is anywhere in or near the pelvic organs.

[massey3070 in reply to humanbean]

Thanks.  Thsis has crossed my mind as well.  Her abdominal pain is all low down, typically where you would expect period pain and also will travel into either hip.  I am waiting for the results of a urine test to come back this week, as she had blood and protein in her urine when we saw the consultant at the start of March.  When I speakt to the consultant I am going to ask for the ultrasound as well, as this really cant go on much longer.

Thanks for all your advice.

[ThyroidThora]

Hiya,

Oh dear, I'm so sorry that you and your daughter are going through this. It would seem that she has a problem with her thyroid, possibly Hashimoto's. My grandson is 3 years old and we're going through it because he has had numerous blood tests that have come back positive for sub clinical hypothyroidism. We've been to a children's hospital who say there's nothing wrong because their blood tests have come back normal, and then we've been told he could have Cushings and they'll test for it and then been told today that they won't do anything because he is growing and is big for his age. They're not taking into account his genetics, his father is 6ft 2 and all the men in my family are 6ft 4 and taller. My daughter has complained and the specialist he should be seeing has phoned her within 10 minutes saying he will sort something out when he returns from his own elective surgery in a couple of months.

I'm wondering if there is something more than an under active thyroid because my grandson has the same symptoms of stomach pains but now complaints of joint pains, is off his food and seems very anxious and irritable. Is your daughter the same?

You're very welcome to PM me should you need to chat and further advice.

Take care,

TT x

[massey3070 in reply to ThyroidThora]

Hi TT,

Thats tough going through it with such a young child, its bad enough with a 10 year old but at least I can explain everything to her and she can tell me how she is feeling  - its no so easy when you are 3 and dont understand everything.  

My daughter certainly suffers with anxiety and gets anxious about everything.  I had put it down to her age and puberty but I think it is actually more than that.  She has also complained of joint pain, espcially knee and hip pain and again because of her age, I had put this down to growing pains.  However, we found out 10 days ago that she is severelty vitamin d defecient, which goes with the Hashimotos, and is now on an 8 week course of vitamin d supplements and will then be on a longer maintenance course after that.  The joint pain can be exlained by the vit d problem.

We have also just got back a urine test result which was looking at the protein which had been present but it is apparently normal.  She has been on thyroxine for just over 2 weeks and says that she is starting to feel better in herself but she is still having the abdominal pains - about 3-6 a day.  We dont see the consultant until the beginning of june but I am going to ask for a scan then if she still has the pains, as I want to rule out anything gyneacological.

It is very difficult trying to get to the bottom of everything but I have to admit that I have found most of my information online.  The GP just said she was vitamin d defecient but I have since discovered that this isnt uncommon with Hashimotos, along with other defeciencies.  I hate to say it but I think you just have to keep pushing the medical professionals to look at things and follow your own gut feeling about what is wrong - I am yet to meet a mother who's 'gut' was wrong about her children!!!

I hope you start to get some answers soon.

Massey