My youngest has DS, several years ago one of her blood tests apparently showed antibodies.
Now no details given, told we will just carry on yearly bloods. Now I am on here and realising how poorly Thyroid conditions are treated I want to chase it up.
I found a piece / well a couple of pieces of research specifically about the fact that appropriate treatment improves growth and development and reduces excess weight. I have lost the bloody things. Basically people with DS typically tend to be smaller height and heavier, however when treated there was a marked improvement in stature and weight maintenance. Those with similar blood results when not treated growth stopped so height was less and weight increased.
Has anyone else seen this research , searching but have lost it .
Daughter is 13, up until approx 2 years ago she was quite tall , taller than everyone in her class , was in mainstream school. Her paediatrician even commented that although another Dr had said she was becoming overweight /obese, he felt she was not as she was above the 98th percentile for height and was a percentile down for weight.
Have recently had her bloods done again and am waiting, waiting and waiting for her appointment with paediatrician would love to be able to argue for further checks with some valid research evidence.
I know it's a long shot but Thanks as always
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Polo22
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I've certainly seen something which seemed to suggest that no or insufficient treatment is usual. Which is awful.
Because I am so desperately ignorant, I simply plugged in a search to Europe PubMed and got 963 results. But have no faith whatsoever in my ability to see which might be of relevance.
You might find you can add or change the search and reduce the number of hits.
Thanks, yes have spent hours going through stuff tonight, just can't find the one which really made sense. Think the monitored growth weight, and come to the conclusion that if appropriate treatment started earlier even those whose growth had halted could recover the lost impetus and recover their previous growth pattern and weight pattern within a year of treatment starting as compared to those who received no treatment growth remaining halted. Just have to keep looking. Bet I sit bolt upright at 3am because the reference has popped into view with amazing clarity 👍😂
dr shandeep Momi has a daughter with Down’s syndrome and has a masterclasses on thyroid health, it may be worth seeing what resources he offers
It is more likely that people who have Down’s syndrome will develop hypothyroidism as they grow up and get older. This usually happens because of autoimmunity (the body’s defence system attacks itself, this is sometimes also called Hashimoto’s hypothyroidism) although there can be other causes.
She needs full thyroid and vitamin testing
You’re legally entitled to copies of her test results
See exactly what has been tested….
If she has high antibodies this confirms autoimmune thyroid disease also called Hashimoto’s
Need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
she should have thyroid and vitamin testing at least annually via GP
ALWAYS get copies of results
If GP not tested recently get her tested including vitamin levels
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH and most consistent results.
I wish I could get her results having a child with additional needs can be hard but many professionals make it near on impossible. Having been trying to get her added onto MY GP app for last 2 years, apparently she has to give consent 🤬🤦♀️. I took her in one day on way home from school stood her in front of reception and said very loudly " gone on Orla tell the people that you fully understand the concepts of capacity and consent" Orla smiled, it went very quiet. It will get worse at 16, officialdom can step in and take over all decisions regardless of parental concerns. I stand no chance with GP's of getting any regular appropriate testing hoping paediatrician might but not convinced. Don't have her last results, GP wouldn't share, asked at last hospital appointment told "all fine" when I tried to look at screen she turned it off.
Only do private testing early Monday or Tuesday morning. Post kit back straight away. They email you to tell you when results are online on your account
I use Blue Horizon, so might do that. Its a bloody nightmare have to tread very carefully, there is the spectre of professionals , using that term very loosely, viewing anything like this as harm/abuse. Dare say many GP's might agree with that view as they see proper thyroid testing and treatment as not important.
That just isn’t right. Is there a parent group or support group of some sort for DS children / young adults - you are going to be the person who fights in her corner - if there is perhaps they could help you? If not what about bringing it up with your MP. I know a lot of them are pretty useless but you might be lucky and find yours can apply a bit of pressure.
When I was pregnant with Orla, couldn't find any support or any positive information. Met some other parents mostly Mum's on line and was invited into a secret DS only group. Apparently we upset people by just being. We set up our own on line support forum, Future of Downs moved it onto FB now it's quite a busy knowledgeable group 7.6K members. Lots have lots of "stressful" dealings with Doctors but lots have ok or even good experiences, the postcode lottery is thriving
There are a couple of studies in these Google Scholar results that may be helpful. Sometimes if you can’t get access to a study you can copy and paste a paragraph into normal Google and you might find a free version.
If you put all the wording you can remember from the study you are looking for into the Google Scholar search box you may find the specific study you are looking for.
Hi Polo22. I know you said your daughter is in mainstream education, but if there is any way you could communicate with the school nurse of your nearest special school they are very knowledgeable about all things DS. Maybe just turn up at reception just after the pupils have left and ask if it’s possible to speak to the school nurse, they may agree. Its a long shot, but most special school staff are only too keen to help if they can.
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