T3 Success and all thanks to Thyroid UK and this online community!

[JMo1]

This time last year my 16 year old daughter had to give up competitive sport, was unlikely to sit her Higher exams and was unsure she would ever realise her goal of getting to University due to brain fog. According to the Thyroid UK symptom checker, she was suffering from a long list of hypothyroid symptoms (she had been on T4 mono therapy since she was 5 years old). All of the many medical professionals we saw had assured me the symptoms were not thyroid related. Finding this community, accessing information and reading other stories gave me knowledge, confidence and inspiration to start of our journey to fight for appropriate treatment for her.

We went to a private endocrinologist (NHS had refused to see her as TSH and T4 were within range) who prescribed T3. Within 5 weeks she was able to sit her exams. One year later we are confident she will be heading off to University. She is thriving. I continued to fight for access to the T3 on the NHS and yesterday she received her first NHS T3 prescription!!!!

This was only achieved with persistent complaints which finally resulted in it being recognised that there is 'sufficient objective evidence' to prove she needs T3 to be well. Many, many thanks to Lyn Mynot, Lorraine Cleaver and Diogenes who gave me their precious time to provide tailored advice and support. I was able to speak with confidence at the meeting and I know that would not have been possible without your guidance. Thanks also to everyone who posts here and responds to posts. I have been fixed quietly to this forum for the last year, learning, laughing (with an occasional tear) and being motivated by at all your stories and knowledge. The support you give is truly life changing.

I will be eternally grateful I came across Thyroid UK and this community. Thank you! Jx

[fibrolinda]

I'm clapping and cheering 😃 well done.

You have put a huge smile on my face 😃

I wish your daughter all the best as she heads of to live her life

You should tell your local MP, keep up the fight!

Mums rock 🤩

[Hillwoman]

What a wonderful story for a rainy morning. I'm so happy that your daughter is getting her life back.

I agree with Fibrolinda that you should give your MP all the details of your daughter's case.

[diogenes Remembering]

I'm very pleased at being some help. I don't want to put on an eeyore face but your daughter is still growing up and therefore her detailed therapy needs will change perhaps until full maturity around 22-25. Just a warning to keep vigilant and respond quickly but not violently to any changes in health as time goes on.

[JMo1 in reply to diogenes]

I will definitely look out for that. I'm hoping she will be a member herself before too long. The lessons to learn her are invaluable. Thanks again!

[mourneadventurer]

Just out of interest, what UK region do you live in to obtain free T3 on the NHS.

[JMo1 in reply to mourneadventurer]

I live in South Lanarkshire so it's Lanarkshire NHS. It has been really tough to get it for her and at this point we are still paying for her to be monitored as the NHS Endocrinologist refused to see her. I'm still challenging that but just so glad she has at least go the medication prescribed.

[mourneadventurer in reply to JMo1]

That's really good news JMo1 and I'm delighted that your due diligence, tenacity and hard work educating yourself has got this life changing result for your daughter. Try to identify the root cause and go after that as well. I found the GI Map test by Invivo to be really accurate at pin pointing this. If you need a functional nutritionist pm me.

Best Wishes

[JMo1 in reply to mourneadventurer]

Thanks mourneadventurer. Have just had a look at that test and it looks ideal as a next step, especially now we don't need to pay for the T3! I have another daughter with Crohn's who has never recovered from Glandular Fever (contracted 5 years ago!) so it might be really informative for her too. Conventional medicine has nothing to offer. Does the functional nutritionist live in Scotland?

[mourneadventurer in reply to JMo1]

No the Functional Nutritionist (FN) is based in Surrey and works in London one day a week . She specialises in hypothyroidism/ Hashimoto’s and her London colleagues specialise in Lyme treatment. Worth every penny to invest in your daughters futures.

I work on Skype with the FN and tests are sent through the post. The challenge has been to find someone to draw blood. Thankfully blood spot, urine , stool tests are more often used. Have a read of my profile to let you know what’s involved.

Best Wishes

[EbonyEvans]

JMo1,

That’s great news! Thank you for sharing and of course Diogenes, Ms Clever and Ms Mynot’s personal shout out. This forum is wonderful but sometimes I feel people do not publicly thank others enough. Especially the main daily contributors.

This must be such a major victory for your household. And the rest of us.

Thank you 🤗

[SeasideSusie Remembering]

What a wonderful, heartwarming post. Well done to you for persisting and getting your daughter the help she needs. I wish your daughter a healthy and happy life, may she be successful in whatever is her dream.

[SlowDragon Administrator]

That is just brilliant news.

The more of us that are able to fight, present clear facts and insist on NHS prescription for T3, the more likely it is many more patients can get prescribed T3 now and in the future.

[Snqanq]

JMo1 I just by chance to see your post and it make me emotional now..I just recently found this forum start to learning and found lots and loads of useful advices, knowledge.. Im ready about to see a private Endo ..same people here see GP-NHS is useless haven't got any improvements on my symptoms for years just getting worst ..feeling really unwell ..feeling lost..

found your post like one more magical story here with the wishes it would happen to me and others also soon, finger cross.. wish to get my life back also

Bless your daughter, your family and all of us here

All the Best !

[JMo1 in reply to Snqanq]

So lovely to hear that my post has shown you another magical outcome Sinqanq and one that truly stems from the knowledge found on TUK and this community. I hope it helps keep you motivated and that you too are feeling much better soon. My daughter is now going into 2nd year at University and is living life to the full. She receives T3 on the NHS and is monitored by an NHS Endocrinologist. A true miracle. I hope you find your path to recovery soon however having this online community is a gift in itself which I hope will bring comfort and advice at each step of your journey. Thank you for your reply. It reminds me how lucky we are. Please let me know if you need any information about the journey we made. I am happy to share letters etc. Best Wishes!