I believe that the below links open official documents that make it clear that the UK government and NHS will not change their position no matter how many petitions:
I think the only way to change their position would appear to be a number of studies carried out scientifically on sub groups of patients proving that ndt or t3/t4 combination treatment is beneficial enough to those sub groups..
Hi to all you suffererers out there. I am suffering from under treatment (mistreatment) of thyroid replacement hormones, having had a total thyroidectomy for amiodorone induced thyrotoxicosis. My symptoms are:
- Mental health problems
- Cold patches on my body
- Joint aches
- Serious fatigue
- Weight gain
- An undescribable horrid feeling throughout my body and mind that I guess some will relate to.
I'm currently taking 150 mcg levothyroxine daily, my tests have been FT4 mid to upper end of range, FT3 lower end of range, TSH high end of range usually above 5.0
Because they are all "within normal range" there is nothing more the NHS will do in terms of treatment/testing. I exercise a lot, don't smoke, drink, or take rec drugs.
I have teenage boys who I love immensly and a wife who is trying hard but sometimes we all bicker and fight.. When that happens I feel like something is wrong in my head and I start to have rages that I can@t get out of for days.
Thanks to the wonderful folk on this forum, I have an affordable source for the medicines that I think I may need to help me and I have some here. I haven't started taking them yet because I have one more meeting with the endo on sept 09 and hope to convince him to prescribe the medication I need along with a testing regime so that I can continue trying to get well within the safety of testing regularly. I don't hold out much hope because he seems to be very corporate about it nowadays...So most likely I will start self medicating Sept 10 but I cannot pay for the regular testing privately, actually I am nearly bankrupt now!
For me this is complicated because of having had a cabg two years ago and then atrial fibrillation I was given amiodorone for the AF which apparently triggered underlying Graves disease resulting in a long course of carbimazole and eventually a TT. I wish I had known about all this before having the TT but alas I was ignoramus and just trusted the cardio and endo with my health. Like I said it's complicated but after everything has been said and done I truly believe that the surgical removal of my thyroid gland was certainly more beneficial for the 'ologists' than for me!! But all of that has since led me to this.
Having done some research (to the best of my ability) and arguing with various GPs and an Endocronologist in the NHS who is known to have prescribed Liothyronine in the past. I have come to the following conclusion:
Without any disrespect to anyone involved with Thyroiduk, (I think this is a wonderful resource for all us sufferers!!) people on this forum are brilliant!
This situation needs a serious benefactor who wants to leave a legacy of helping thousands by funding the necessary testing and trials to force the UK govt to rethink its position if indeed, as many believe, we are being denied truly beneficial medicines. I think this would cost serious money and would take serious committment. Is there anyone out there like that??? or willing to offer up a testing facility and some serious funding?? If so please get in touch..
Maybe I'm completely crazy to even think about all this? Perhaps it's all just insanity, in my head like the GPs infer!