What does it feel like?

[marlathome]

It's been so long since I've felt well I truly can't remember what it's like! So this is not a flippant or facetious question but does any member feel well in both mind and body and what's it like? Or do we just have to settle for feeling not too bad?

It seems I've been chasing this illusive state of being for over 30 years and it consumes so much energy and financial resources. Perhaps I should just accept that losing my thyroid gland has condemned me to a life half lived and get on with it?

As always feeling depressed hence post.

[shaws Administrator]

I never thought it would be possible as we are very slowly becoming ill and have strange symptoms but doctors fail to know any so instead of being diagnosed early some of us remain undiagnosed due to the TSH never being tested or not 'fitting' into the equation. I was ill for such a long time, being diagnosed with 'this' 'that' or something else for which I had treatment (one under anaesthetic) for which there was no need and still becoming more unwell.

I then found Thyroiduk.org.uk - no forum then. I was prescribed levothyroxine, felt much more unwell than my 100 TSH when finally diagnosed.

My NHS Endo added T3 to T4 first of all and I felt a massive difference - I could breathe freely and my flesh felt as it was absorbing oxygen. She wanted me to stop taking T3 due to my blood results and I refused so my T4 was dropped

Fast forward 4 years or so, changing and trialling different options of thyroid hormone replacements through my own efforts . Anyway, to cut a long story shorter I am now fit and well and energetic with no clinical symptoms.

The fact that you have no thyroid gland and have been unwell for thirty years they should allow you to trial natural dessicated thyroid hormones which contain all of the hormones our healthy gland would have produced (it doesn't agree with everyone - but unfortunately due to False Statements made by the British Thyroid Association enabled it to be withdrawn from prescribing, just as they've done recently with T3. They could also add T3 to your T4.

I am on T3 only has given my body the freedom from ill-health. I aslo sourced several NDTs tried T4/T3 but settled on T3 only.

I believe that some of us cannot convert levothyroxine to sufficient T3 thus we remain unwell.

In the UK it is insisted that a TSH should reach 10 before being diagnosed whereas in other countries it is around 3+.

web.archive.org/web/2010112...

[Clutter]

Marlathome,

I've read that 100% recovery is unlikely and that for some of us 80% may be as good as it gets.

[Saggyuk in reply to Clutter]

I've resolved many of my problems and am working on a few others but I agree with Clutter . I've accepted that I will never be 100% as pills will never work as well or as stable as your own body. 80% Is good for me where I spent most of my adult life more at 30-40% maybe even less. Might be easier for me to accept as don't know what it's like to be an adult feeling fully fit and able. I do remember as a child though, no pains, no energy watching, no problems getting out of bed and most importantly for me, no will power needed to want to do things, just did them but it's the lack of understanding from others that gets me more than anything - such as when they say "why don't you just do it". There's definitely less possibility since my thyroid stopped working - actually had a good year or so feeling better than this before this happened. I'm just so happy to be better than I was before this to be honest

[marlathome]

Thanks for your interesting responses. I'd settle for 80% health but I reckon I'm a long way from that. It's the tiredness I find most difficult to contend with - I wake up in the morning tired and come to a grinding halt by mid-afternoon. And the depression is energy sapping. I'm currently taking 2.5 grains of naturethroid and will continue to increase the dose until the tiredness becomes less debilitating (hopefully this will be the answer).

I wish I had a magic wand (I wouldn't keep it to myself!).

[Mamapea1]

Having been fit and healthy before, I often try and remember what that felt like ~ I watch people dashing about getting on with life and try and cast my mind back ~ but the memory of feeling pain free ~ or even comfortable ~ has gone. Every day I wake in agony with the usual myriad of symptoms, which are now actually escalating, a fact that leaves my GP incredulous as usual. I also wonder how long a person can stay alive with this level of bodily dysfunction ~ I seem to still be here and I don't think we should accept that half life until we have exhausted (pun - sorry) all avenues of remedies and treatments. It seems to me to be incredibly complex and despite being tired, ill, not believed,financially stretched and depressed, we are left to our own devices to regain every smidgen of improvement or recovery. But we must keep at it! I thought I'd tried everything ~ or so I was told numerous times ~ but now I've found this site I realise I haven't tried anything yet! Shaws reply to you has given me so much hope............ x