Each time I have to go through the process of buying NDT I go through a series of emotions.1. Angry that in this day and age I have to buy meds from Thailand
2. That the NHS won't let us have the meds we need
3. The cost if these meds, how will I afford once I've retired
4. The fact the cost is highly inflated every year, like everything else goes it up but more than inflation.
5. What I'm taking isn't approved it could actually harm me, it scares me anything could be in it.
6.It makes me feel dirty and seedy like I'm some sort of drug user when in fact I'm only buying these meds to stay alive out of necessity.
I absolutely hate it.... Yet I don't suit levothyroxine what choice do I have?
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Diamond61
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And if you haven't already, please sign the petition for more research into treatments for hypothyroidism. We need this to get over the 10,000 count! Give more funding for thyroid research and patients after price hike petition.parliament.uk/peti...
This reality is what needs to be brought up at the likes of this research some of us are in the process of contributing to right now. Hopefully Diamond I might be able to use at least some of your language. This is not specifically my problem but it’s not a million miles away in essence. Our treatment is just so very bad, I just have trouble getting my head around it. How can it be that so few (usually men) have so much sway over our treatment, whilst ignoring both up to date research and also ‘old tried and tested’ prescriptions? I really don’t get it in this day and age in a ‘free’ country.
The reasons you list above resonated with me, I got on well on NDT but the cost, availability and having to import medication just weren't sustainable. You are at the vagaries of the global market and there have been a few posts in recent months questioning the potency of Thyroid S.
Nothing worse than spending all that money and getting a sub standard batch. I'm now trying T3/ Levo.
Unfortunately, you, me and many others who are on this forum have exactly the same dilemma. I have actually gone privately but as soon as it was clear I was having problems on T3, it was as quick as they could get rid of me. There is no possibility of a tailored approach within the NHS. If you don’t fit their ‘criteria’ you have reached the end of the line. The only option is what you are already following. Self medicating. It’s a ridiculous state of affairs. Everything is stacked against us as hypos (including those who have been made hypo by removal of thyroid). We are paying for a health system which can’t (or won’t) treat us properly. It’s pretty much criminal but ‘their’ bases are covered because they make the rules.
I took thyroid s for over seven years after my TT and felt very well. I was only on Levo for six months.
Now the Thyroid s doesn't work for some reason. I not only have to buy my own but because I live in France and it's banned here I have to have it sent to a friend in the UK and then on to me here. Why should we have t put up with this lack of treatment, but we all do! I do get T3 here FOC but it doesn't suit me.
By the way I have bought three different batches of Thyroid s since 2022 and none of them work, it's changed.
It's disgusting really it's incredibly stressful wondering first can I access this drug then can I afford it, like I say makes me feel like I'm doing something criminal.
Yes price has its place, although that argument is less relevant now T3 prices are reducing, for example. I am much more inclined to think that medics egos have a much bigger part to play. This is a combination of the egos themselves but also the fear of being sued. Their making of the rules protects them from being sued. This combination is deadly for us - the patients. QOL for patients is totally absent. We can see this in the lack of seriously accepting new good quality research, lack of investment, lack of will to work with patients and the blank looks when doctors are confronted by patients queries, or worse being shouted at by certain medics. It’s said that losing your temper (doctors and ourselves) mean you have already lost the argument. We (naturally) are emotional and it pays doctors to sit and look blankly at us. On the face of it they are still ‘winning’, whilst our health is diminishing.
It’s said that losing your temper (doctors and ourselves) means you have already lost the argument.
That's me, then ...biggest loser.
Still breathing = Still fighting. One of the reasons I've chosen not to retire yet is the ongoing cost of my meds / vits / blood tests / calm-down herbs. Yes, there's worse...usually life-threatening and acute - if this is you may the Gods shine brightly in your direction.
Chronic ill health is badly served by our overburdened NHS. Every day I spare a thought for those in my position, but blindly and ever hopefully, following doctors' orders. How many posts have you seen which start...I have never felt well and have been taking levo for decades?
Yes Rapunzel, me too. It’s utterly degrading. I have run businesses, got good degrees etc but been shamed on a number of occasions through being ‘emotionally’ unstable. I read notes on my file where my words were twisted to suit any possible whiff of this “Be kind” crap. Of course we should be kind but it’s difficult when you are ill and simply wanting to get better and be ‘unheard’. Why are we the ones with nowhere to turn?
It’s become us and them with us being the ones viewed as unco-operative. It’s amazing if it was not so blooming serious.
I need high dose T3 to function and have to buy it from abroad because NHS medics in general do not understand T3 and the devastating effects deficiency causes. Their eyes glaze over at the sound of the words "T3"
I'm 78 and dread the thought of having to go into hospital or a care home where I would no longer be ( fully) in control of my medication.
I know what it feels like to have deficient cellular T3....the body starts to slowly shut down.
20+ years on increasing doses levothyroxine left me barely able to function.
I will never understand why there is so much ignorance amongst the profession that is charged with our well being or why there is such a blind adherence to lab results, to the exclusion of what the central part of the problem is.....what the body is feeling, and telling us!
I'm now having this problem with a chronic UTI. The tests show negative so the prophylactic antibiotics were withdrawn and my symptoms have returned ...screaming! I'm about to discuss this with a medic later this morning. I'm back to square one, not because I'm cured as labs suggest but because the prophylactic antibiotics were controlling the problem fairly satisfactorily in the absence of a definitive cure.
Sorry, I'm ranting yet again on this subject....I'm wholly with you on this and I'm literally sick and tired of having to research and treat myself because the medical profession is failing to treat me with what my body tells me is the correct treatment.
You are 100% correct when you say, "It makes me feel dirty and seedy like I'm some sort of drug user when in fact I'm only buying these meds to stay alive out of necessity."
And you know what, I sometimes think those addicted to drugs are treated ( quire rightly) with more understanding than we are.
(Now I think I'm ready to have that conversation about treating chronic UTI!)
Research is key because it's high time medics treated patients on the basis of scientific facts not on long established mistaken beliefs....as seems to be the case with thyroid disease. It's not rocket science!
Have they got the courage to admit that they've been wrong for about 60 years!
I know how you feel, I've just spent over £400 buying the same and I always worry whether it will be ok, or what would happen if I were suddenly to go into hospital, whether I could afford it in the future etc.. The only consolation for me is that the NHS doesn't believe I have a thyroid problem, so it's not on my medical record and therefore none of them can alter my dose or try to influence me in any way. We're being treated so very badly!
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I feel the need to vent my anger
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