10 year old suffering with fatigue, joint pain, nausea, very poor general health-need a good endocrinologist that will do T3/T4 testing

This is my first time on a forum so forgive me if I struggle to reply/communicate quickly back.

My 10 year old has been suffering from awful fatigue, nausea after eating and drinking anything, joint pain, painful sinuses, headaches, tons of mouth ulcers, and recurring kidney infections. Doctors keep implying she is 'stressed', which is insulting. We have BUPA but have had a bad experience with one paediatrician who put it down to 'a bit of knee ache and tummy ache'!!!!

She has recently had an endoscopy and colonoscopy and we are STILL waiting fro the results. The 'nearest' any one can get, it CFS. I cannot believe that the body suffers so much pain without there being a specific cause. I have been in touch with a lady who was diagnosed with CFS over 20 years ago and was actually wheelchair bound by it. However, she was fortunate enough to see Dr Gordon Skinner (who sadly has now passed away) and he diagnosed her with a thyroid condition and has since recovered very well and is out of her wheelchair!

I have spent over a week trying to find an endocrinologist that will do more detailed tests than just TSH. This search has been made extremely difficult as most will not see children! So, I am in desperate search for a consultant-private preferrably for speed- that will look at these deeper thyroid concerns but for children. I am prepared to travel anywhere but live in the West Midlands. Can anyone help? I clearly seem to be looking for another 'Dr Skinner'. My child's mental state is very poor due to the lack of medical support she is receiving and it will only get worse if I cannot find her someone to help her.

Thank you, all. x

11 Replies

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  • Am so sorry to read about your daughter and the struggle you are both going through. I have been concerned about my Grandson - now 16 - and whilst he was here on holiday this year I took him for blood tests. ( I live in Crete so things are much more relaxed ! ) His Iron and Ferritin were below range and his Folate also low. His B12 also was very low - in spite of having sent him lozenges to give him a boost whilst doing his exams. VitD reasonable. These are the building blocks of our health and are often overlooked by the GP's. They do a Full Blood Count - but rarely the specifics. So I would have Ferritin - Iron - Folate - B12 - VitD tested and see where they are in their ranges. Do not accept 'normal ' from your GP. Obtain copies of the results with ranges - this is your right so you can monitor things for yourself. You could then post them in a new post for people to advise.

    The main website of Thyroid UK has details about Private Testing for the Thyroid and you can receive a discount too. When the above vitamins and minerals are low the thyroid function is also impaired.

    Hopefully you will soon have answers. Stick with this forum and you will learn loads from so many good people. My health has been improved so much by implementing things I have learnt from others :-)

  • Before you go to those lengths

    do you use aluminium or non stick coated cookware or does the school

    do you use foil or slow cookers or selectric steamer , George foreman grill

    Do you have drinks in cans or use food from cans or is your water treated with any form of aluminium or fluoride

    All the above can cause havoc in the body inc affecting thyroid

    is there thyroid, diabetes, RA , lupus , coeliac /gluten sensitivity in the family

    nausea after meals and kidney infections is often concomitant with Coeliac Disease

    Has

    Thyroid Antibodies

    Free T4

    Free T3

    Ferritin

    Folate

    B12

    Vit D3 been tested

    What was the TSH test result

  • Hello,

    TSH reading is 0.69. :)

  • Then Central /2ndary Hypothroid would be only form as TSH is very low

    I need answers to rest of the questions I posed before we can help furthur

  • Has your daughter been tested for Lyme Disease?

  • Hello, SHe has not been tested for Lyme disease but I have thought about this.

    Vit D apparantly is OK but I do not have this reading. I am awaiting B12 results as we speak. The other things you mention have not been tested and I have just made an appointment-after weeks of online searching- with a Dr O'Connell in London to test for these extra things. I am not happy that the thyroid T3/T4 has not yet been looked at.

    Does anyone have experience of Dr O'Connell?

  • If you've been told by a doctor that your daughter's vitamin D level is okay, please make sure you actually get a copy of the result. Doctors often declare a result is "okay" or "normal" even if it is right at the bottom of the range or even a bit below it.

    As Marz said above, you must get copies of results for yourself. Whoever told you it was okay may well have been telling the truth. But so many of us have been fobbed off when nutrient levels are very low that, sadly, it is safer to assume you have been lied to until such time as it is proved otherwise.

    If your daughter was fighting fit then levels of nutrients within the reference range would probably be fine. But when we are sick it is best to get nutrient levels into the optimal range. And what is optimal depends on the substance being measured. Sometimes things need to be mid-range, sometimes in the top half of the range, sometimes in the top third or top quarter.

  • Regarding the other questions-we hardly used these type of cookware. She has always had a very good and clean diet and drinks tap water-we live in the Midlands and our water is great-or so I believe.

  • She is lucky you are helping her. Worth excluding celiac - you can get a test v cheaply on line. The chances of her being celiac are low, about one in 50, but it would be fabulous if you found she had it, so worth £30 or so in my book. Poor lamb.

  • Hi all,

    Thank you for your advice. I agree with comments regarding 'normal/optimum ranges', thusly taking her to see the private consultant above.

  • Hi, my son has been referred to a endocrinologist specialist at Alder Hey Childrens hospital in Liverpool. His appointment isn't until the 18th of September but I will let you know how he gets on if you like?

    Linseyd.

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