my hypothyroidism experience since birth

[mikey_is_alive]

so i was born with this. and had many visits to hospital as a kid. doctors told parents i might end up in them 'special schools' parents had to move closer to town due to frequent hospital visits and also for possible school when of got to that age.

i suffered from hearing issues and mental difficulties, if i crossed my legs or sat in same position for just 10-30 minutes i got pins and needles. my body temperature was messed up so i sweated alot and had a flushed face.

so the doctors done surgury on me to fit gomits into my ears and kept poking me with blood test needles every 6 months. and although my mind was not 100% i manage to scrape together enough intelliagence to go to normal primary school

at school, this was not fun, not hearing the other kids talk now and again made me avoid conversations, the flush cheeks got me the nickname tomato or beetroot. and the body temperature and sweats got me called stinky even after daily hygience practices

great fun right?!?!

and here is the thing. when telling the GP every 6 months of these issues. including the pins and needles of just crossing legs(something you had to do in assembly so always an issue every day i couldnt avoid) the doctor just said 'yea they are known symptoms and the only medication is levothyroxine. so just keep taking levo thyroxine.

in my late 20's i started learning about liothyronine and when i was granted use of it boom, clearer mind, more energy, everything felt better.

then the CCG took that away a few years later.

anyway couple yeasrs ago i started gaining weight, but it was my leg and groin that was expanding, which was strange. i went to the GP and he said, oh yea thats fluid retention, thats expected. just try to limit your fluids and also take these dieretic tablets to flush it out.

year ago after it not getting better and nearly unable to walk i decided to go to the ER of hspital. and instead of waiting the usual 2 hours. they seen i said water retention and seen mmy breathing strained. and rushed me in...

suddenly i am being told new things about the side effects of hypothyroidism. such as the pins and needles and the breathing and water retention are all due to heart issues. yep i had a underlying heart issue all my life due to thyroid issues that due to not being treated because it was a known thyroid issue and the only known thyroid medication was levothyroxine back then. yep the GP for decades thought all my ailments would sort themselves out if i just took levo.

kind of furious about it. the ignorance GP had in the 80's-90's that a kid complaining of gaining weight and pins and needles they didnt even care to talk about heart issues or even go seek possible treatments to catch it early

anyway. now im in the situation that without dieretics i can gain 4lb from just 2litres of water intake. and if i take dieretics i can pee out just as much that same day but be thirsty for more fluids. so now always in a limbo of trying to drink just the right amounts of water to not be thirsty but not enough that it sits in my body as dead water weight(i am also on other heart tablet now, but the main visible signs is the water weight)

the only good thing about the ER hospital visit is i went from a massive 21st to a 18 stone in 3 weeks and got down to 14 stone a month after that.. yep 7 stone in 2 months. best diet ever.

but overall i am still peed off that for over 3 decades the GP's only advice when telling him all my issues was 'just keep taking your levo' and 'yep its a known thyroid symptom. so just accept it and try to live with it'

so if anyone else has young kids complaining of this stuff. dont just settle for the 'yep just continue as you are' stuff. actually tell them to get a referal and get it sorted earlier. especially pins and needles and swallon ankles where school sock elastic leave marks on skin like they are too tight they dig in.. tell the doctor it heart related and levo just aint gonna fix that

anyway. i thought id share a brief experience of some of the issues i grew up with just to hep any other people with kids with this know that its not just a 'hormone thing'

[Marz]

Thank you for sharing your story. I see you joined 6 years ago so hopefully you have read lots of helpful posts here and have been able to sort some things for yourself.

Did you get your T3 back ?

[SlowDragon Administrator]

Many people with zero thyroid function need the addition of small doses of T3 alongside levothyroxine

Sounds highly likely you do and GP should not have stopped prescription

Have you had any recent FULL thyroid tests?

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have low Ft3 due to poor conversion

Ask GP to test vitamin levels and FULL Thyroid including Ft3

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

british-thyroid-association...

GP should not alter T3 prescription - should refer to endocrinologist

pulsetoday.co.uk/news/clini...

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Recommend getting Full Thyroid and vitamin testing before booking a consultation with a recommended thyroid specialist endocrinologist who is known to prescribe T3

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists

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Add any recent results if you have any

Or

Come back with new post once you get full results