Challenging the treatment

[NWA6]

Has anyone ever formally challenged their GP or Endo about their treatment? Written to their MP?

I feel like I’m just a number because of the numbers 😩 It’s so frustrating to finally have some knowledge of Hashimotos and yet it means nothing when I can’t get the proper treatment.

Are there any petitions to sign? Are there any letters that I could copy to send to Endo/GP/MP?

[SlowDragon Administrator]

Now you have positive DIO2 gene test result your NHS(?) endo should give trial of T3 on NHS

But first you need to concentrate on getting vitamins optimal

Plus trying strictly gluten free diet, if not done so yet

If endo says you have clinical need, but they can't prescribe NHS prescription, he should provide private prescription while individual funding request for a NHS T3 is arranged

It's unacceptable for there to be a post code lottery on T3 prescription availablity

Which CCG area are you in?

Some areas are worse than others.

Dossier presented to Government November 2018

drive.google.com/file/d/1c2...

Helpful post

healthunlocked.com/thyroidu...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

Recent debates in parliament

theyworkforyou.com/search/?...

[NWA6 in reply to SlowDragon]

I emailed the secretary today to ask when I would be booked in for a follow up appointment after I sent my DI02 result. It’s been 2wks now since they received them.

This was her reply

‘I saw Dr R*****earlier today and he has discussed this with Dr B******. All your results are normal. As your genetic testing was done privately we need to discuss the result with a Geneticist at Frimley Park to validate the results. As soon as this has happened we will be in contact’

I have been unwell for months now and virtually housebound for 4wks. My poor children are parented from the sofa, my poor husband works and does the housework. The impact on my family unit is immense.

My symptoms are manageable if I stay slow and housebound, the fuzzy head doesn’t go away but at least I don’t feel like collapsing. This is not a life!! I’m soooo frustrated.

I am gluten free, taking daily Vit D, other test results to follow as I messed up the last blood test.

[SlowDragon Administrator in reply to NWA6]

Email Dionne at Thyroid Uk for list of recommended thyroid specialists. There may be an NHS one in your area

please email Dionne at

[e-mail]

Best option is an endocrinologist who sees patients privately and on NHS. Starting with private consultation will be much shorter wait

Which CCG area are you in?

[NWA6 in reply to SlowDragon]

Thanks Slowdragon. I’m in Surrey. I am just emailing some private endocrinologist now. I replied to the secretary’s email asking her to reiterate to the Dr that I am housebound and very symptomatic.

I missed her phone call at 4pm and I’m glad I did because she phoned to reassure me that my blood tests are normal and so there is nothing to worry about and there is no immediate rush and that she cannot day when the Dr will speak to the genetist. I’ve just cried my heart out through sheer anger but I’m glad I didn’t speak to her because otherwise I’d have told her to go f*** herself 😢

[TSH110 in reply to NWA6]

Don’t blame you what a stupid attitude - you are just a number according to her. I wrote to my MP who was sympathetic, what good It did is questionable. I self medicate with NDT and T3 at least I have a life now and I am freed from the insanity of thyroid (mis)treatment on the NHS. I have the DIO2 mutation and some thyroid resistance genes I felt like pants on Levothyroxine which improved immediately on NDT and most problems completely resolved. That secretary is talking through her backside.