It makes me so angry when I see how many of us suffer on here. I am NOT clever enough to self medicate like some on here. I read comments and find it amazing how knowledgeable you all are. My brain just wants to shut down when I try and read, yet some have a thirst for knowledge. I read and instantly forget. Same with reading books and watching a film. Anyway I digress. I came on hear to say I have contacted GMB and have asked them if they would run a story on thyroid issues. I have told them since joining a forum I have seen how many suffer in silence and now having to pay for private blood tests and some self medicate. That we have had tests removed and medication removed down to cost issues.
Anyway the question I am asking in a long winded way is IF they get back to me, can I tell them which forum I am on and would anyone be interested in speaking to them.
The only reason I ask is I have written in before and they wanted me on the show. A different subject years a few years ago. But I declined as I am not a clever or articulate speaker. They did run the story though.
They may not ask. But any backup would be appreciated. I think this suffering in silence needs to stop. Our stories need to be told.😊
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Foxy23
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Bearing in mind that anyone can find this forum through a search engine, a program researcher could easily identify the forum (or, at least, the most likely forum) in next to no time.
It would be good to know what happens as we do sometimes pick up some unwelcome traffic (e.g. spammers) after publicity.
You could contact Lyn Mynott who began thyroiduk due to her 'sorry story' too. She has been trying to change attitudes of the medical professionals and has also spoken with The Lords regarding the withdrawal of T3, without notice. Her office is a garden shed in her garden.
Some scientist/researchers also support/advise her .
Thats brilliant .I am still in the dark re my situation ,otherwise i would have loved to do something to help.Raising awareness is the only way to get things changing.
Do make sure you have enough of the micronutrients we need to feel better. I initially had to write the what & when of everything down, & it still took a while to get it right. It gets easier once our body starts to work better. Self-medicating definitely helps & it’s not rocket science. Try something easy to get such as Metavive with your T4 to see how you feel.
Hi Foxy23 , you do sound very eloquent on paper though.
The basic reason(s) for the situation we are all in originates from the pharmaceutical companies and the power of the $.
I have good reason to believe that those below that level simply follow orders, not daring to do otherwise in fear of recriminations, the same excuse used by some at the Nuremberg trials in 1947.
My CCG has stated to me that I can get NDT by getting the backing of a endocrinologist in NHS premises. As this rule actually relates to T3, then they are either incompetent, liars or even incompetent liars. Perhaps they tried to shut me up by giving me a solution they knew was impossible for me to achieve.
They then informed me that " natural desiccated thyroid is not suitable to be considered via the Individual Funding Request (IFR) route as it is not a Payment By Results (PBR) excluded drug and there is no funding mechanism to recharge it back to" this CCG.
I am awaiting an answer to what on earth these strange words actually actually mean. If true this would of course be equally applicable to EVERY blacklisted drug in the UK.
Nobody is prepared to offer a single word regarding my statement that the GMC INSTRUCTS every doctor to inform patient of any product that may improve their wellbeing if they are aware of its existence IRRESPECTIVE of whether they are permitted to prescribe it.
As there exists a system within each and every CCG in my county that NDT will be prescribed (on private prescription only and NOT by a consultant endocrinologist) if you pester them sufficiently, then every doctor here is blatantly disobeying the rules of the GMC when appropriate patients are not normally even informed about the existence of NDT.
I doubt your CCG is aware that NDT (which has been prescribed to hypo patients since 1892 throughout the world) - had False Statements made against it by those (in UK) who should know better - in order to get it withdrawn.
The NHS had to stop prescribing it (without any notice) and forcing people who did get it by prescription in the UK to have a desperate and worrying time. As we are aware on the forum, many do recover with NDTs as well as T4/T3 or T3 alone.
The statement they made was opposed by one of Thyroiduk's Advisers (he is now deceased) and he sent the following Rebuttal to the 'prominent' endocrinologists and despite three yearly reminders before his accidental death - they never did respond.
Don't be so self critical because when you have this disease you feel too ill to do anything. I actually worked for the NHS and my husband was a hospital manager and we couldn't get the care I required and we know how the system works. At the moment the NHS is busy trying to contain and cope with the coronavirus so we cannot expect them to do anything but deal with that. I will keep trying to change things but as I have said many times before we won't get helped until Endocrinologist stop using the TSH as a guide to treat thyroid disease. The NHS needs to change the guidelines but I do wonder that if they did how many people would flood the NHS asking for treatment. Everyday I see people who I think have enlarged thyroids and thin hair and I feel like asking them if they are hypothyroid but I don't because they would probably think I am being rude to ask that question.
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