As promised I am writing with the final outcome of my quest to get T3 on the NHS for my teenage daughter.
Two years ago I found Thyroid UK and joined this amazing community as I was desperately looking for information on anything that might help her. She had been diagnosed with hypothyroidism when she was 5 years old (TSH 172) and had been taking Levothyroxine since that time. Her life was disintegrating with what I realised from the list on the website, were recognised symptoms of hypothyroidism.
I went armed with info to the GP and therein started a long journey of complaints and challenges and being made to feel delusional for having been “reading on the internet” (noted in my GP referral and in the Endocrinologist’s letter refusing an appointment. The only reason I could maintain my confidence and keep pushing on was the reassurance I got from the positive stories I read on here as well as the high calibre of consistent information and advice given. It is really a gift!!
I found a private Endocrinologist who prescribed T3 and Vit D and within 2 weeks we began to see positive changes in both her mental and physical health. Within 3 months she was just about back to normal. Initially I had to buy the T3, pay for the private endocrinologist and pay to have her bloodtests done. It seemed absolutely ridiculous that the NHS would rather pay for psychological input, anti depressants, physio, CBT, dermatologist, gastroenterologist and scans for a teenage girl. Not what I would consider cost effective!?
Only with the confidence I gained here was I able to challenge the GP, NHS Lanarkshire and Greater Glasgow and Clyde NHS. Eventually after going through 2 complaints processes and the Ombudsman my daughter had her first NHS Endocrinologist appointment this week. She has been accepted for ongoing monitoring by the Consultant who is happy for her to stay on her current treatment plan. I am soooo relieved that my daughter will have ongoing access to the care she needs even if our financial circumstances change. I feel so relieved and grateful that I could cry HAPPY tears.
Just wanted to say thank you to Thyroid UK and this amazing community. and in particular to Lyn Mynott, Diogenes, Lorraine Cleaver and Holyshedballs. They all took time to read over my information and give me specific advice and tips as to what questions I need to ask, things to challenge and research to quote. Only with this consistent support was I able to continue. I am not being over dramatic when I say I believe you helped change her life path from a life of suffering to a life full of options and the potential to reach all of her goals and ambition. I cannot thank you enough. You do a wonderful job!
Written by
JMo1
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That was so lovely to read, brought a tear to my eye I love a happy ending. Hope your daughter turns out as strong a fighter as her Mum. Very very very well done you.
Thank you so much!! She’s certainly keeping me on my toes but now for all the right reason! Is her Uni course the right one, is she going out too much socialising, is competitive Cheerleading too dangerous 😂😂 All lovely, normal worries. Jx
That's great news and your girl has suffered from an infant so never knew what to be in good health meant.
Some doctors believe that mothers are too intense about their child's health. I have had that experience myself with my daughter, i.e. always complaining from about 4 years and back and forth to doctors/specialists etc. She had lots of antibiotics given.
When she was about 9 - I said to GP that my sister had rheumatoid arthritis and he turned on me and was so furious as he stated 'don't put ideas into her head'. That was that and on we continued and she wasn't diagnosed with RA until nearly 20 and is now severely disabled and has had so many operations on replacing bones etc and has a wheelchair. Thankfully she's blessed with a very concerned husband and she herself has a great attitude.
All due to the lack of a doctor taking some personal family history and a blood test.
A few months ago the Scottish Parliament agreed that if patients need any thyroid hormone replacement other than levo they will be prescribed.
That is awful Shaws! Resonates with me for all the times i asked if it could be thyroid related and they said no. None of that will be recorded, just like your question about your daughter. We have had blind faith in doctors for so many years. Thank goodness for websites like this and people like you who give your time for the good of others. It really is slowly turning the tide and I hope we are beginning to see the difference in the attitudes of GPs and consultants. The politicians are definitely beginning to take notice. I am so glad that your daughter has a good attitude and has good support. It makes such a difference. Thanks again! Jx
How lovely to read such a positive outcome after all that you and your daughter have been through. Well done. Good luck to your daughter, may she live the healthiest and happiest life possible.
What a beautiful letter to read, and how true of the people on this website who consistently reply to one and all, with their time, consideration, thoughtfulness and thoroughness.
I am sure this has all taken it's toll on you, but it's what we do for the people we love.
I'm so happy for you and your daughter - maybe it's time for you to " get down on it " and join her with Kool and the Gang. xx
What fantastic news!! I am currently in the hellish/frustrating system my self. I’ve just had my first blood test to after starting t3 6wks ago. I had quite an argumentative consultation with my NHS endo because I had to go private to get T3 and she says that it’s harmful and compares it to steriod use. Subsequently I have had my patient access locked and have spent all morning trying to get access again and also get my results.
Finally I have a print out of these last test. I was so looking forward to them because I am soooo well only to find that they didn’t test FT3!!
The incompetence is just astounding!
My DR is probably going to phone because my TSH is below range 😩 Trying to educate them is very trying!!
Story’s like yours give me hope! I’m sure the battle felt long and hard at times but I hope mine has as happy an outcome as your daughters 🤗
I can totally sympathise Paula6! The level of incompetence is astounding and I had to argue the whole risk of T3 argument time and again. The labs also refused to do the T3 a couple of times simply because her TSH was normal?! So much inconsistency and lack of knowledge across the whole system. The deciding factor for my daughter was a real reduction in symptoms and return to normal activities. It’s hard to argue against the real positives eg she was able to sit exams, stop taking anti depressant and start competitive sport again after starting T3. Still a sorry system for people to cope with, especially if they are unwell. Good luck and keep fighting!
This is truly an amazing forum! I have so benefitted from the collective wisdom here. What a wonderful outcome for you and your daughter . May her good health continue and wishing you all the best!
What a wonderful post- I’m so pleased for you and your daughter that she finally has access to T3 on the NHS. This forum and its fantastic members supported me on my journey and I shall always be exceedingly grateful too. T3 can be life changing.
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Hi, thank you for letting me join🙂
I want to thank you all
No thyroxine 
Thank You
