Granddaughter being medicated, any advice please? - Thyroid UK

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Granddaughter being medicated, any advice please?

Elle137 profile image
16 Replies

Happy new year to all....My granddaughter has had her second blood test results back:

TSH 16.9 (0.51-4.3)

T4 8 (7.4-15.6)

T3 6.2 (4.8-7.8)

TPO 600

So she is hashimoto's unfortunately, but fortunately we have found it early. Dr called my son, after advice from endo she is to start levo, that's it?

She is 11, can she take the vitamins etc that we take? If not can anyone recommend please?

Do medichecks do blood tests for children?

Does thyroid UK have recommended paediatric endocrinologist?

I'm going to ask my son to join this group, you all helped me so much with my "road to health" x

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Elle137
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16 Replies
helvella profile image
helvellaAdministrator

A couple of things that might help:

helvella - Paediatric Reference Intervals

Discussion of the importance of using paediatric reference intervals for interpreting laboratory test results.

Last updated 28/12/2024

helvella.blogspot.com/p/hel...

The USA' Office of Dietary Supplements puts requirements into quite finely graduated age ranges.

I simply chose B1 at random and attached a screenshot. Link below:

ods.od.nih.gov/factsheets/T...

Because it is not UK-based, it does require care to interpret appropriately in a UK context. But it is one of the few sites that consistently does age ranges.

Obviously, adult level vitamin intake is way different to young child, but the gap closes as they grow up.

ODS Thiamin by age
Elle137 profile image
Elle137 in reply tohelvella

Thank you 😊

SlowDragon profile image
SlowDragonAdministrator

GP or endocrinologist should test vitamin D, folate, B12 and ferritin

And coeliac blood test too

Dogmomma76 profile image
Dogmomma76 in reply toSlowDragon

I'm new to the group. What does celiac have to with thyroid? Not question your response looking for answers.y TSH is 40! USA all other labs for thyroid are within range. I went from 300 micro of syntheoid 2 years ago to 50! Now taking 75 micro of levothyroxine. Help I feel like something in the picture is missing. I had thyroid cancer many years ago. Thyroid and parathyroid complete removal.

Pandora777 profile image
Pandora777 in reply toDogmomma76

A lot of thyroid disease sufferers are intolerant of gluten. So eliminating it from your diet can help eliminate symptoms

pubmed.ncbi.nlm.nih.gov/375...

Dogmomma76 profile image
Dogmomma76 in reply toPandora777

tha k you very much I was never told this! Would that be why only the tsh is really high but everything ceelae is ifine?

helvella profile image
helvellaAdministrator in reply toDogmomma76

Please would you write new post? It causes confusion when people ask new questions in replies to another post.

jgelliss profile image
jgelliss in reply toDogmomma76

Welcome . I too am from USA. I had TT many years ago for papilary cancer. In my case Synthroid did not work for me. The filler in Synthroid caused me to have palpitations. Acacia is one of the fillers in Synthroid. I now dose with Levoxyl if that helps you. I can not say enough how nutrients play a large roll in our thyroid meds to work well for us. I learned so so much from the wonderful members of this community. I can't Thank Them Enough. I hope you get sorted out very soon and feel Great.

figster profile image
figster

hi,

I am so sorry to hear that your granddaughter has been diagnosed with Hashimoto’s.

My daughter was diagnosed with the same 6 months ago so I absolutely feel your pain. My daughter is 10. We are seeing a paediatric endocrinologist in Sheffield and we are exploring a functional medicine approach at the same time. I have found that there are not many functional doctors who will treat children in the UK. It is also prohibitively expensive for some people.

There is precious little information available to support children and families with the condition in the UK. I have found some support and am very happy to share it with you. If you PM me then we can have a conversation.

humanbean profile image
humanbean

Celiac disease is an autoimmune condition. And it is known that once someone has one autoimmune condition e.g. Hashimoto's Thyroiditis that the risk of getting another is higher than if you had none. This might explain why people with thyroid disease are at greater than average risk of developing celiac disease.

en.wikipedia.org/wiki/List_...

en.wikipedia.org/wiki/Coeli...

en.wikipedia.org/wiki/Hashi...

Elle137 profile image
Elle137 in reply tohumanbean

Thank you 😊

Pastille profile image
Pastille

Hi Elle137 ,

I'm sorry to hear of your grand daughter having to deal with this rubbish at such a young age!

Ah bless her, but on the bright side, it's been diagnosed! & I can only imagine the many that are not.

I have just looked through your posts to see what made you get her tested in the first place & can only see fainting & dizziness ( as though that's not enough !! ) of course it is, but my question is were there any other symptoms?

Does she struggle with her weight? Does she have a sluggish metabolism? And does she have mood swings/ sudden frustration..like when she is trying to fasten a zip and can't do it right away?

Also does she sweat a lot?

My grand daughter has all of these symptoms /signs & has done since birth. She was constipated a lot as a baby. And she sleeps a lot for a 10 year old and always has done. She has quite a big tummy.

Do any of these symptoms ring a bell with your grand daughter? I'm asking because mine has only ever been diagnosed as hypometabolic, and I'd like to suggest to my daughter to get her tested but she just thinks I'm obsessed with thyroid & think everyone has it since I was diagnosed 😆 🤣 I really don't, not everyone...just most people over 50 😆. But I could, then show her this & she might do so.

Sorry for the long message.

Elle137 profile image
Elle137 in reply toPastille

Hi, thank you for your kind words. Symptoms of hypothyroidism vary so much from person to person & my granddaughter had no symptoms of note according to my son? However......now my son has now said that she's cold all the time, suffers with constipation & has "brain fog" but he put that down to her training hard (gymnastics) and being tired, as we well know these are classic symptoms....she wasn't tested specially for thyroid, it was a whole raft of bloods to see why she was fainting & it showed a high TSH with low T4, the GP said "I'm sure it's a mistake, we'll re test in a while" second bloods came back with a higher TSH, not a mistake then! I know my son thought the same as your daughter, we're obsessed! No, we have been through the mill & know how hard it is to get diagnosed & treated as the symptoms "cross over" with many other illnesses etc.....or could just be them growing up!It is very important for a young girl to have enough of this hormone whilst developing, so I am very grateful this has been "picked up" and would encourage your daughter to test for hypothyroidism, it's just a blood test & it could potentially save years of misery? My very best wishes to you & your family x

Pastille profile image
Pastille in reply toElle137

Thank you for your reply Elle137

This is my concern! That she will have a hard time in secondary school, and when her periods start, and will never get diagnosed, whilst struggling with tiredness.

Being always cold is another ( yet she sweats a lot, too)

My daughter was over weight as a child because I had gestational diabetes when I was carrying her & she was born weighing over10 lb & was always big as a child and this resulted in some very unhappy times for her. She was a dancer & loved it,but her weight would make her so self conscious once the other children started teasing. I Just don't want my grand daughter to go through the same. It's heart breaking. Plus it's all endocrine related isn't it so it makes you think.

I think my daughter is reluctant to ask her GP for the tests, as she has heard about their attitudes re: thyroid from me.

But maybe she will do a private one.

Hoping all goes well with your grand daughter and that she responds well to treatment, and feels much better.

Elle137 profile image
Elle137 in reply toPastille

Your daughter is lucky to have such a caring mum 🙂 your granddaughter too.....I was reassured by another member on here so I hope I can reassure you, your knowledge & experience will help greatly on the road to better health for your granddaughter, all we can do is advise & guide, with hugs & patience! I do have a recommendation of a private endocrinologist (video consultations) who treats children if you want to private message me, every best wish x

Pastille profile image
Pastille in reply toElle137

Another thing, my daughter has just reminded me of, is that my grand daughter was also found to have high cortisol levels. I don't know if this is significant, but what I have learned on here, is that it is possible that that won't correct itself if her thyroid is struggling. (I'm not saying this is what it is, but it's another possible sign, maybe)

I have added this here, just incase anyone else reads & can advise, also.

I just find it odd that they have found high cortisol levels, and said she has slow metabolism but not tested for thyroid issues. Or maybe, with children they don't always test, as a rule.

Thank you

I do appreciate the info of the private endo, and will PM you. 🙏

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