Finally got my T3 back!: Just want to thank this... - Thyroid UK

Thyroid UK

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Finally got my T3 back!

NICOLA74
NICOLA74

Just want to thank this site for all the help and guidance you have given me over the last few months, I don't know what I would have done without your help! After the biggest battle I finally got my T3 given back to me. I used the templates and the dossier and guildline letters you guys provided. I had to send more emails to let my GP endo and MP know how Ill I had become, even phoned NHS England for help and the head of medway CCG. As I was just hitting a brick wall, all blaming each other.

The day after i had phoned the CCG I was allowed my prescription back. I've also had a big apology letter sent to me. Apparently my GP wasn't aware of the new guidelines even though I had sent him copy, to this day my GP thinks liothyronine is not easily available. I just think it's so shocking how people can be treated this way and I worry for the people that have been told all these lies about t3 being unavailable and don't know which way to turn, I'm very lucky my husband helped me fight for it as I felt I was giving up, i had no fight in me, I felt I couldn't live the rest of my life this way as there was no quality, it's terrible . So please don't give up guys we deserve to feel well and live a life.

Thank you once again. I feel almost human again. Xx

11 Replies
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SlowDragon
SlowDragonAdministrator

That is absolutely brilliant

Well done.

lynmynott LouiseRoberts we need more successful outcomes like this

Perhaps this case could be used to demonstrate that guidelines are still being very wrongly interpreted

NICOLA74
NICOLA74 in reply to SlowDragon

I'm happy to help with my story.

helvella
helvellaAdministrator

Well done for keeping at it. Very pleased you got there in the end.

Yay! Brilliant! 🤸🏿‍♀️🤸🏿‍♀️🤸🏿‍♀️🥛 #fightforyourthyroid.

Brilliant! Well done.

Hi Nicola I am so pleased for you, I am under threat of having my t3 stopped soon my go says his hands are tied but I will be sent to some top consultant at Charing Cross hospital for some tests first. I would welcome a pointer in the right direction to to the documentation you used to fight your corner, regards Moira

shaws
shawsAdministrator

You showed real tenacity to get your T3 back. You deserve it, as do others who've had it cruelly withdrawn and without notice to boot. It is well seen that those at the 'Top of the Endo' Tree really have no absolute knowledge of how unwell a person can be if they cannot tolerate levothyroxine.

Well done.

Well done for fighting your corner and having a positive conclusion.

The help and advice on this site is second to none - often better than ‘highly trained ‘ medical professionals.

Hope you start to feel better once you’re back on your T3

So pleased for you! These guys on here are brilliant! It's a crying shame we have to fight to get the right medication. Hope you get back to good health very soon.

Hi Nicola thanks for posting.My endo nurse is telling me my tsh is flat suppressed and it shows I'm over medicated.She wants to lower my t3 but this was my life saver too.Im on combination therapy as t4 on it's own made me very sick.What dose are you on?

My latest results were tsh less than 0.05 t4 9.2 t3 6.0.

I'm taking 75mg t4 20 mg t3.Any advice welcome thanks xx

SlowDragon
SlowDragonAdministrator in reply to Sunnyandcher123

Sunnyandcher123

Your endo nurse needs to get some retraining

TSH is nearly always suppressed on any dose of T3

TSH is largely irrelevant. Most important is FT3 followed by FT4

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test

Is this how you do your tests?

Do you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies?

What are your most recent vitamin D, folate, ferritin and B12 levels. These need testing regularly, we frequently need to supplement to maintain at optimal levels

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