PRICE OF T3: I am totally stressed out with the... - Thyroid UK

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PRICE OF T3

marigold22 profile image
8 Replies

I am totally stressed out with the real possibility of my T3 prescription being replaced with T4, after reading over the last day or two what the NHS is doing. I have googled Concordia which is the pharmaceutical company causing this problem for hypo's who need T3.

concordiarxinternational.co...

Their website states that they care about the world, donate to many charities worldwide and only wish to do the best for everyone taking their wonderful drugs.

i have twice now sent complaint forms to the CMA (Competition & Markets Authority - a government body), have just emailed Billy Kenber a journalist at The Times newspaper who has written a few articles about this problem. No idea where else to go with this nightmare apart from my MP who no doubt would make her excuses.

Could we perhaps gather hypo’s who rely on T3 to ask Concordia what on earth they think they are doing? Though I’m certain they would ignore us. Any ideas anyone please?

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marigold22
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Rapunzel profile image
Rapunzel

Hey marigold22 it's worse than you thought - nhscc.org/latest-news/400m-...

If your GP refuses you your next repeat script just remind the practice that you are clearly one of the minority who does not respond well to T4 monotherapy and you have an equal right to feel well. One of our admin team, Marram has written about her righteous frustration here healthunlocked.com/thyroidu....

I have remonstrated with the CMA, my MP, The Times, various Government and NGO petitions...I may as well swim in treacle. The difficulty is that each of these actions takes a little from a spoon of my inconstant and limited supply of energy butyoudontlooksick.com/arti...

The medical profession just wish we would F off and die, I think and this is likely to be a self fulfilling prophesy when we are denied the meds we need to feel well.

Best to you x

marigold22 profile image
marigold22 in reply to Rapunzel

That link says they want to redirect funds into mental health. Us on T3 will end up under mental health. I'm going insane here with this very recent news. I'm going to have to fork out for a DIO2 gene test, though it probably won't make any difference.

marigold22 profile image
marigold22 in reply to Rapunzel

Rapunzel, do you self medicate? I'm wondering what self medicaters tell their GP they are doing, so in effect are out of the endocrine loop with the NHS. Though now we have more logical reason to do so.

Clutter profile image
Clutter in reply to marigold22

Marigold22,

If the NHS pulls the plug on Liothyronine I will tell my endo that I am buying online and self medicating. There's no reason why it should take me out the endocrine loop as you put it.

Rapunzel profile image
Rapunzel

Hey m my dunce of a doctor refused to give me any more than 50mcgs of levo claiming I was in range. I was right at the top of the freaking range. He is most definitely not the type you can have a consultative conversation with and is the second GP I've had in the G*dforsaken tip I live within. But I love my home which is a place of peace calm and elegance; so I shut it all out and live within, mostly :D

During my time in his 'care' he's told me I was too early for the menopause ( I was, but it was happening ) to pull myself together when I told him I was depressed ( I'd had an episode earlier in my life and knew what to look for...without searching it out - that cost me £200 to see a consultant shrink who basically told him to pull himself together and listen to his wiser patient ) I have since found that a patient of his actually died in his consulting room whilst pleading for further investigations on the weak heart which saw him off. You couldn't make him up, the tool. He practises within an area of rampant and often clueless proletariat and has got too used to telling instead of consulting. Do I need to move ? Pfft. Where to ? Excepting a different town, I believe I'm well and truly stuffed.

So I don't tell him. He is a dope and hasn'tr a clue what I'm doing. I smile when he tells me to reduce my T4 and wants a retest b/c my T3 is just over the range. My husband keeps a note of what I take for unexpected hospitalisation and we bumble along. The pharmacist where I fulfil my scripts has my confidence and I don't fulfil the levo, just my blood pressure and AD meds. The blood tests are great b/c then I can have a vacutainer drawn to send for my private blood tests arranged here thyroiduk.org.uk/tuk/testin....

Long answer but not a straightforward question - yes, I self medicate. I'm better, so much better, wholly thanks to my online questioning, reading and taking that leap of faith. But I'm not well. I'm obese...a size 20 b/c I shop for clothes at places where their sizes flatter. I'm often dog tired. But I can live my life. Were I remaining on T4, I am confident that I'd be dead by now, or off the scale obese and considering a noose :( My weight gain stopped the minute I stopped T4.

Sod a gene test. I refuse to jump through their hoops and would rather spend the money on meds and blood tests. I know that I need something other than T4 and if that ain't good enough, they can all take a fat flying leap and play on the M25. Not that I'm bitter, marigold :P

Skyebeardie profile image
Skyebeardie in reply to Rapunzel

I love it, you speak for me too!

Rapunzel profile image
Rapunzel

((( Skyebeardie ))) 😘

marigold22 profile image
marigold22

british-thyroid-association...

british-thyroid-association...

I hope these two links work. Thyroid UK is advising T3 users to use the British Thyroid Association guidelines to appeal to their GP/endo. I used the Guide for GPs which IS there for public viewing, printed a copy off and sent it to my GP with a letter - begging to be kept on T3.

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