Friday, 2 November 2012
#2 The Weirdest Thing About My Health #NHBPM
Oh yes, it's me again!
Are we all getting the hang of things?
Then I'll begin.
The weirdest thing about my health is...
The abject disconnect between every "healthcare professional" to cross my path and my reality.
It's enough to make one paranoid.
I am not.
I can be at times.
I AM NOT.
The online community of dedicated advocates and fellow sufferers provide more than enough evidence to the contrary.
Quite a quandary I'm sure you'll agree.
You see, I'm in the exclusive club of hypothyroidism sufferers for whom the standard treatment of synthetic T4 hormone replacement therapy (levothyroxine tablets), adjusted until blood tests are "in range" DOES NOT WORK.
I am special.
I am still trying to get used to this revelation.
Not one "healthcare professional" I have encountered has confirmed my specialness.
Weird.
My obsessiveness? Yes.
But special? No.
Here in the UK my "treatment" is governed by fear.
Not one "health professional" had shown any desire to treat my symptoms.
They pay me lip service.
Do they respect me?
Do they think I am a malingerer?
Do I have a choice?
They make me feel like a simpleton.
It's not very nice.
Weird, right?
Remember for as long as we have hope we have a chance.
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Oh Robert! My heart goes out to you, as always.
ReplyDelete"The weirdest thing about my health is...The abject disconnect between every "healthcare professional" to cross my path and my reality."
Gulp. You and so many others it seems. It's an outrage.
If our voices can achieve anything in time I hope it's a recognition by those health care professionals who are dismissive of patient experiences that we are not simpletons and our experiences are valid. Reading the new NHS Constitution there are many fine words about how patients will be put at the centre of the service and that our feedback will be taken seriously. This needs to happen. I hope to god the resourcing issues facing the service don't prevent the new approach from being taken up. There does seem to be a will to change things from the top, with new measures to make doctors more accountable to patients etc being brought it.
Having said all of that I really worry about some patients' dogged focus on getting hold of "natural" thyroid hormone medicine. I know so many people who have tried that stuff and not got on at all well with it. (you know some of them too).
My own experience with my thyroid condition has borne out that often the things that have made the biggest difference for me have been changes beyond the thyroid medication itself.
Surprisingly Vitamin D and dietary changes appear to have turned me from someone who wasn't responding to standard thyroxine very well at all, to someone who gets on fine with it and is much well-er (and thinner, hoorah!) than before, I have even been able to reduce my dose in recent weeks. Amazing.
I know you've tried so many different things too and I totally respect your experiences and the insights you've gained, but I just urge you to maintain an open mind about what the ultimate solution is going to be for you. Our bodies are complicated and medicine is complicated. Sadly doctors don't always know everything we wish they did and their communication skills can be appalling which doesn't help and needs to be challenged.
But honestly, it may be no more "natural" for your body to take a biologically derived thyroid hormone product from another species than it has so far proven for you to take the synthetic versions developed more recently specifically for human beings.
One of the things I've learned, from the endocrinologists I talk to through my BTF volunteering, about T3 hormone and how it works in our body, is that our different organs have receptors for T4 hormone which they then convert to active T3, those organs can't pick up T3 from the blood stream so it's really in our interests to get that conversion progress working internally rather than relying on an external source of T3 which may be delivered in a ratio which is not natural for human beings (that's one of doctors concerns about "Armour".) I take selenium to help that conversion process. I've no idea whether it's really helping me or not but in the spirit of trial and error and keeping an open mind I carry on. I'm thankful for the improvements I'm seeing in my own health.
Wishing you every bit of support I can muster. Hoping you start to get some answers and to feel much, much better soon
With Love and Hope
Robert, I love your blog. Your posts are real and emotional. As readers we feel connected to you. I am also part of the exclusive club of hypothyroidism sufferers for whom the standard treatment of synthetic T4 hormone replacement therapy (levothyroxine tablets), adjusted until blood tests are "in range" DOES NOT WORK! We are special Robert even if our doctors don't know it. The only reason I feel well is because I found a doctor who listened to my symptoms and not my lab results. The T4 hormone replacement therapy did nothing for me. I only started feeling better when I started taking Nature-throid which is a combination of T4 and T3. The T4 only replacement wasn't working because my body was just not converting it to T3. Once I started on this new medication my life changed. Best of luck to you Robert.
ReplyDeleteHello Robert.
ReplyDeleteit is so similar here in finland.
"The object disconnect between every "healthcare professional" to cross my path and my reality."
Tanja