Success with levo treatment...

I've just read on this site, several times, that people join this site as they're not doing well with treatment. Apparently, people who are doing well don't bother as we're all too busy getting on with life...

This may well be true for many, however I am doing well on meds. I joined the site very recently because I want to become more informed and learn more about this condition and what I can do to help my body reach/stay at optimum wellness! I'm really enjoying the questions, blogs and I've learnt so much already.

A year ago, I thought I was dying I felt so ill. It has taken almost a year to recover from undiagnosed hypothyroidism. I now feel as if I have my old body and life back! I am also careful about nutrition and I excercise a little and am now well into recovery although I may never lose the extra weight I gained.

Hypothyroidism, I've discovered, is a lifelong condition, and connecting with others who understand the condition is great. I was told some bad things by one unsympathetic GP when I was first diagnosed who claimed I couldn't be having panic attacks or muscle pain/cramps etc and he has a patient with much more serious levels than me... ie, why was I complaining? Very depressing. I wish I'd found this site when I was first diagnosed. I think it's important that people who are finding success with meds stay connected and stay informed too.

Thank you

[PinkNinja]

Hi.

Thanks for writing your blog and sharing your success story. It is great to hear from someone who is doing well; it gives everyone else hope that they will too one day

Carolyn x

[Hidden in reply to PinkNinja]

Hi Carolyn

I talk to everyone about the condition as I think it's something that's not talked about - maybe because it's so often perceived as a 'woman of a certain age' thing! Two friends have been diagnosed now as a result of me talking about it and are being treated and feeling much better.

I'm pleased my story gives some balance.

I'm now aware that one of the things about this condition is that it's so complex - it varies from person to person and will possibly change for me as I get older. The best way to prepare is to become as informed as I can be - so this forum is great.

[Hidden]

Hello Liza,

Thank you for sharing this with us, and I'm very pleased to hear that you are so much better. You are right in that we rarely hear from people who are doing well, but we really need to hear their stories too because these add to our pool of information that there are many different experiences with this condition and many different ways of treating it.

I hope that you will continue to keep us in touch with your progress, and thank you again.

Jane

thyroiduk.org

[Hidden in reply to Hidden]

Thank you for commenting Jane.

I'm now aware that one of the things about this condition is that it's so complex - it varies from person to person and will possibly change for me as I get older. My past year has not been easy and I've had to find out a lot on my own. I'm puzzled as to why GP's seem to think it's as simple as; blood test - get figures - work out dose - one pill - job done!

Liza

[tingles]

Hiya, thanks for that post. I too feel soooo much better just taking levo, and like you I am commited to maintaining my wellness and striving for optimal health. I dont know either if I will ever lose the 5 stone that I gained when I was struggling in without diagnosis....I thought I was going mad/dying.

I am hoping to start a trial of T3 soon, fingers crossed

T

[Hidden in reply to tingles]

Hi T

Thank you for leaving a comment.

I've heard that T3 can be the key for some to helping weight loss but the more I know about this condition, the more I'm seeing that one treatment doesn't 'fit all'. Apparently, some of us can convert T4 into T3 - I'm hoping I'm lucky!

I gained 3 stone, but my GP told me it had 'nothing to do with being hypothyroid'! This was when I was first diagnosed and I knew nothing about T3. I'll look into this at some point when I've explored weight loss by excercise and nutrition a bit longer as I'd prefer not to try too many solutions in one go and if I can do it without further meds I'd prefer to. It's still early days for me.

Good luck and I'd be very interested in how the trial goes.

Liza

[Hidden]

Hi Liza

Would you be interested in submitting your story for our website and/or magazine?

thyroiduk.org.uk/tuk/get_in...

Or perhaps you would consider recording your story:

thyroiduk.org.uk/tuk/get_in...

Louise

xx

[Hidden in reply to Hidden]

I'd be happy to submit my story. I've kept a short diary to keep track as I tried to come to terms with the new 'me' and I looked at what I could do to improve my condition. It was not simply a case of 'take a pill each day - look now I'm well again'. I'll add an up-date to the diary and send next weekend.

Thank you for asking

Liza

[vajra]

Hi Liza. Important that people like yourself with solid information a little off the beaten track to add come forward - we need to understand the full picture.

I too prefer to take some T4, although i need about 10% T3 as well as for some reason i don't seem to be able to use T4 properly on its own. Against that i don't feel well if the proportion of T3 is too much increased either - it generates a bit of a roller coaster feeling.

Against that there's no doubt that some of us need T3 (likely those with problems in downstream conversion and use of T4), and T3 alone seems to resolve symptoms for quite a few too.

The bit that bothers me is that it seems like there's a seeming tendency for the T3 story to migrate with the telling - to move from the knowledge that a substantial proportion need at least some T3 to feel well, to a generalised popular presumption that T3 is always 'better'.

Taken together these perspectives seem basically to suggest that there is very much a place for both T3 AND T4 in thyroid replacement. T4 has advantages too (if it works for you) in that it delivers a slower more stable 'burn' and longer half life, and requires taking only once a day.

We have a huge problem with the way that the system has hung its hat on the reliability of the stock T4/TSH blood tests and replacement regime as the de facto universal means of diagnosing hypothyroidism - when in practice it seems to really only work properly for those with recent primary hypothyroidism (where the gland simply isn't producing enough hormone, but the downstream processes are still working well) - but there's no point in our creating an opposing dogma.

My own experience is that some endos and the like will admit the existence of this problem, but the bureaucracy as a whole is unwilling to accept or to act on the reality.

Which reality has over so many years cost so many of us so much in terms of illness, suffering, loss of quality of life and even death....

ian

[Hidden in reply to vajra]

Hi Ian - you make some really good points and explain this very well. As I'm new to all this I have found the T3/T4 debate confusing at times, and this seems simple in comparison to some of the other variables I'm reading about. Judging by some of the negative comments I've received from a couple of my GP's when my symptoms were at their worst, there does seem to be a massive lack of understanding or unwillingness even to believe sufferers. My heart truely goes out to anyone who is struggling with this debilitating, disabling condition.

Best wishes

Liza