Thyroid Hope, my first post

I've been thinking about creating a blog about my experiences with hypothyroid for a while now. I'm active on a patient support site, www.medhelp.org and I've read a lot of different stuff from different people online and in books, in an attempt to educate myself about this frustrating illness. I'm a member of the British Thyroid Foundation, the organisation for thyroid patients in the UK which is affiliated to the British Thyroid Association, the organisation for medical professionals and I'm a patient at my local health centre (which is a fantastic practice but I’m not going to name here as I want to protect my anonymity) and UCH London.

I'm no medical expert and recognise that I'm unlikely to become one any time soon. I'm a little bit sceptical about just about everything I read. Clearly there's little consensus on treatment regimes for hypothyroid when the standard Thyroxine therapy doesn't appear to do the trick - and the good doctors that I've dealt with in the last year or so have acknowledged that. I'm shocked at the lack of solid knowledge around T3 therapy, for example.

I've been unfortunate enough to come across a couple of doctors who didn't appear to be so good, who certainly were not great communicators or did not appear to be very patient focussed. I came away from those consultations distressed, frustrated and even angry. I recognise that no-one's perfect and hard pressed doctors perhaps need to be cut a bit of slack, but I feel that poor patient care should be addressed. I feel so vulnerable with this illness and I think that's one of the things that it does to people, so I think being treated with consideration and sensitivity is terribly important. I’d like to be able to raise awareness of that with doctors.

I've had some experience with alternative therapists and for now have pulled away from going down that route though I don't rule it out for the future. I’ll say more about those experiences in a future post.

I have found myself really turned off by what I see as the negative and hysterical tone of some high profile "thryoid patient advocates."  I feel there's a real need for a calmer dialogue between thyroid patients and medical practitioners. Who knows, perhaps I'll eventually end up as frustrated and angry as some of those other voices out there. I'm going to try not to though. I'm going to try and address my illness and it’s treatment in a positive and constructive way.

I hope this blog might prove in time to be of interest to fellow patients and to doctors working with hypothyroid patients. If you're reading this it would be great to know why you are here and what you'd like to read about in future posts. I’d be so happy if we could create a dialogue here that would help even one hypothyroid patient or practitioner working in this field.  I think we patients get such a lot out of sharing our experiences and I’m pleased that the medical profession in the UK is increasingly recognising the validity of listening to patients in order to improve standards of care.

Right now I’m particularly interested in the emotional and mental effects of a malfunctioning thyroid gland, so I think that will be the subject of my next post.

Thank you so much for reading this, I hope you’ll come back and even get involved in the conversation if you’d like to.

Hope