Monday, 11 October 2010

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

8 comments:

  1. I am looking forward to reading more of your experiences! I for one today and totally brain dead and over tired. I hate the stupid disease and hope that here in Australia our doctors will be more educated in dealing with the emotional and mental issues, too.
    Cheers!
    Maria

    ReplyDelete
  2. Great post, well written, I thankfully do not suffer from hyperthyroid but I have had my own challenges with health & finding the appropriate health care support.

    I whole heartedly support your effort to express the views of a patient of our health care system, I'll spread the word about your post & hopefully others may get the support they need too.

    ReplyDelete
  3. Thanks so much for posting Maria and Claire! It's great to think that people are interested and might get something out of reading this.

    I've had an interesting week, the doctor has advised me to cut my hours at work for a couple of months. I'm going down to 3 days a week till mid December and then I guess we'll see... It felt like a big deal to agree to this - like admitting defeat which I resist with every bone in my body! But then when I finally agreed it with my boss, I felt like a weight had been lifted from my shoulders. Learning to accept my limitations is one of the biggest challenges of this illness. That and dealing with my fear of how others will judge me (ooh, I don't WANT to be a "failure"!!!, I don't, I don't, I don't! But it's all a fascinating learning experience.

    When will I ever truly realise, resistance is futile and all that good stuff people keep telling me about surrender!

    This weekend I plan to write another post, on the whole "brain fog" thing. Maria I hope you're feeling better by the time you read this.

    love and light

    ReplyDelete
  4. Am definately looking forward to following your posts!! Another one here who is totally over the stupid disease which is thyroid disease!!

    Well written, Great post!!!

    I to, have recently had the conversation with the doctor which went along the lines of "you must cut your workload, slow down!" I felt like I was admitting defeat (and still do to some extent).
    Will definately keep reading!!
    Nat :)

    ReplyDelete
  5. Hi there, I've just been pointed in your direction by a mutual friend (who says hi, and sends lots of love). I can see I have a LOT of reading to do, as I need to get my head around this.

    I've been feeling rubbish for a fair while - utterly knackered, even after a good nights sleep. I've been blaming that on my very stressful life - and that also got the blame for the weight that kept piling on and wouldn't shift, regardless of diet, or daily 6am gym sessions before work.

    What finally got me to the doctor was constant dizziness - literally, I feel drunk constantly. A lot of blood tests showed an underactive thyroid, but nothing else, so I'm being treated with thyroxine, and we'll review in two weeks, and retest in two months. No offer of a referral to an endocrinologist yet, and no real information from the very nice doctor I saw at my GPs surgery ("it just happens")

    Meanwhile, I'm trying to cope, but am struggling with tiredness, a head full of fluff (so totally unable to concentrate)and fairly constant dizziness.Not fun.

    So, I'm going to read, learn, and ask lots of questions,and hope that I start to feel better soon.

    Thanks

    ReplyDelete
    Replies
    1. Hi Kat, I'm glad you found the blog and hope some of it might be useful. I remember I felt really dizzy around the time I was diagnosed too. It's horrid, I sympathise! But it shouldn't last long, hopefully you'll get back to normal fairly quickly.

      You won't need to see an endocrinologist unless your GP can't sort you out. Hopefully you'll start to feel lots better soon now you're on thyroxine. For some of us it can take a while but for most people treatment is straightforward. There's no reason to expect that won't be the case for you.

      www.btf-thyroid.org is a good place to get info

      and do feel free to call me if you'd like to, I gave Jo my numbers to pass on to you. It might be worth having a chat if you find you're feeling worse before you feel better.

      sending wellness wishes your way.

      xx

      Delete
  6. Hi Lorraine,

    I'm happy to report that I am a lot less dizzy now - and I rarely feel like I'm drunk. I still have to be careful, as moving too suddenly or too quickly isn't a good idea. I am feeling a lot better too, compared to how I was. I do still get fuzzy head moments, so I do have to try not to overdo things.

    I am under investigation for another health problem, and the second doctor is keen to see my retest results in about 6 weeks, as she isn't 100% convinced my thyroid is abnormal enough for treatment. An extra test has been ordered to check for antibodies and confirm an auto-immune cause.

    I'm hopeful that the excess weight will start to shift soon, as frankly that is the most disturbing aspect of all of this.

    Thank you for the offer of a chat, I do appreciate it and will take you up on it.

    With thanks and best wishes

    Kat x

    ReplyDelete
  7. Hi Kat, I'm so pleased to hear you're feeling a bit better now and hope you will continue to get back to normal now, including dropping the excess weight. Good luck with the extra tests. Sounds like you have a doctor who's on the ball. Will look forward to chatting at some stage, whenever you like.

    warm wishes

    Lorraine x

    ReplyDelete