And I do understand what you are saying SeasideSusie. I'm not sure we are ever going to fully agree on this and I expect the Yellow card system may agree with you, but it has to be worth a try? If enough of us have had problems with it in this way it should be looked at. And let's face it maybe that is why so many are on here.
They say the 'majority' do well on t4. How do they justify that comment? Yes, I accept that those on t4 only doing well, are unlikely to be on such a forum as this. But are they doing well, or have the real problems not started for them yet? I'd bet for some at least, this is the case.
How many are supposedly still 'doing well on t4' when they may only be in the first stages of being lied to, ignored and fobbed off? They have yet to become totally disillusioned with their GP's, and start looking for external help. They may only be where I was 15 - 20 years ago - getting fed up of being fobbed off with their symptoms being accredited to everything but their thyroid condition?
In the meantime, GP's can count them as part of their 'majority' still 'doing well'. I do not buy any of these vague assessments/percentages and figures, plucked out of the air, when we know that anyone with HypoT is guaranteed not to be listened to by most GP's. Not all. But most, and increasingly so.
It does sounds very like we have had similar experiences. I struggled along without any meds for a decade or more. I think longer and now think aspects of my childhood held clues and signs to problems arising. I then had t4 only for 20 years.
I honestly believe that had I been given t4 when first saw an Endo, in 1981ish, it many well have halted the destruction of the thyroid. But as I wasn't, by the time I did get diagnosed and given t4, my system was so compromised that it could not convert and use t4 properly. What makes this drug somewhat dangerous is the fact that it is the only thing offered and by taking it continually when it was not doing any good, it is at least contributing to harm.
I never felt better in any way shape of form on T4. I kept telling the Dr's this, they just kept altering doses and telling me lifestyle excuses - i.e working/kids etc. I told them that the fatigue was not 'lifestyle' but they would not listen. I am also certain that all this time my thyroid was struggling more and more, and this drug is dangerous if allowed to build up in our systems to cause all these other debilitating symptoms - fibrmyagria, migraine etc...which it did. I proved this by trying to reinstate it on several occasions - within days of stopping all adverse symptoms stopped. Within less time starting back on t4 all returned and persisted.
I think this aspect of this drug should be considered. Especially when it is the only option offered by GP's for a potentially fatal condition. It needs better understanding at the very least?
I do totally agree with you that it is the issue that GP's just do not understand enough, nor do they appreciate that this condition can affect everything - so why shouldn't it cause migraines, fibro, CF etc?
We do not have the time to educate them. In my view, they should accept they are not 'specialists' and refer us. But they don't, not readily. And no amount of educating them, or changing procedures will solve this problem, if they and even the specialists are actively discouraged from discussing the use of this drug never mind using it!
I do not want my son, who is struggling, to go through the same number of years dealing with the same 'head in sand' attitudes, that we have endured and been fighting against. I do not want him to go through life, like you said, losing out of the enjoyment of life itself, being unable to cope and function on normal levels, like we have had to. I don't want him to have to give up future jobs because of bouts of ill health and long term illness. I do not want him to face the prejudices and negative attitudes and jokes, that we have had to endure.
He has already missed out on life opportunities because of 'unexplained' illness!
You didn't mention if you ever tried t3 only? I'm sorry if you did and I missed it. Because it does sound like you are/were struggling to convert also? If you haven't maybe it is something to consider. I do understand your feelings regarding your husband. And I am sorry that you have now lost him. My own is generally understanding, more so since seeing Dr P with me 7 years ago - I think it was at that stage that he realised I did have a 'real' problem.I think before that he did have some doubts because I was fighting it - running a home, bringing up too small boys, doing a 3 year degree. To this day I do not know how I managed that...but I do think it knocked me for six! I was trying to keep going - to be honest, I did not know that what I was feeling was not 'normal'.
I am sure your husband understood. You should not blame yourself for a condition that literally steals our quality of life away.
I wish you all the best and above all good health.