Today is day 5 of
WEGO Health's National Health Blog Post Month (#NHBPM): "Health Activist Soapbox".
Those of you familiar with my blog will know by now that I require no second invitation to mount said soapbox.
I received a wonderful comment to my post
#2 Weirdest Thing About My Health #NHBPM. This comment was made by my health activist friend Lorraine, she of the excellent blog
Thyroid Hope, and it touched on her hopes for the future of treatment of hypothyroidism in the UK.
"Oh Robert! My heart goes out to you, as always.
"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 in.
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.
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"
I was struck by how our similarities far outweigh our differences when it comes to the big picture.
Occasionally we approach our health from different directions.
After all, each of our journeys is unique.
Who can ever be sure where they are on their journey?
But there's never any doubt that we both have the best of intentions.
After all, we share a common dream.
Better health for all those suffering with hypothyroidism.
Not as simple as it sounds.
Especially if you live in the UK.
The devil is in the detail.
But.
We have a window of opportunity.
And it starts with the NHS Constitution, or more specifically the "strengthening" of it, which is nearing the end of it's "consultation period".
What is the NHS Constitution?
I thought you'd never ask.
Now the
NHS Choices (about) website, "...(a patient's) online 'front door' to the NHS", has a page
What Is The NHS Constitution?, let us read it together.
"The Constitution sets out your rights as an NHS patient. These rights cover how patients access health services, the quality of care you’ll receive, the treatments and programmes available to you, confidentiality, information and your right to complain if things go wrong."
Sounds good.
And this is to be "strengthened".
Quite a "buzzword".
Actions speak louder than words.
You talk a good game.
Talk is cheap.
I should know.
So what does "strengthening" the NHS Constitution actually mean?
Funnily enough there is a dedicated
Department of Health NHS Constitution website (home),
Department of Health NHS Constitution website (about).
Within this website there is a blog that addresses this particular question:
What does "strengthening" the NHS Constitution actually mean?
"It seems to me that, apart from questions of content, there are three vital ingredients for strengthening the Constitution:
- visibility: making it better known
- traction: making it a force for driving improvements and sustaining high standards
- challenge: making it a tool that people can use to challenge health and social care to do better and, where necessary, to seek redress when things go wrong.
In this context, the new statutory duty to ‘promote’ the NHS Constitution may turn out to be very important. This duty will lie with the NHS Commissioning Board and with the new clinical commissioning groups. How should it be carried out? It would be possible for the Commissioning Board to put copies of the Constitution in every surgery and clinic in the land and to devise some kind of performance management framework for assessing compliance with it. How effective would that be?"
So where are we at today?
Well the proposals to strengthen the NHS Constitution were sent out for public consultation on 5th November.
If you wish to offer an opinion/share your views, you can do so here.
The ultimate aim being to feed into the revised version of the NHS Constitution due to be published in April 2013.
The proof will be in the pudding.
Never more so than when it comes to the treatment of hypothyroidism in the NHS.
Currently.
Diagnosis of hypothyroidism is via the "gold standard" TSH (Thyroid Stimulating Hormone) blood test.
Levothyroxine (synthetic T4) is prescribed and tweaked until you are within the "normal range" via the TSH blood test.
Any remaining symptoms are not attributable to your thyroid once in the "normal range".
Still symptomatic/unwell?
Here, have some antidepressants.
And be quiet.
You are not entitled to live a life.
When you are almost forcibly prescribed antidepressants, in the future this has to be the moment when you and your doctor take a step back and think: why is the standard treatment not working?
Radical?
You would think so.
In my experience this next stage has all had to be initiated by me.
Disgraceful.
With resistance met at every turn.
Shameful.
I am not well.
And therefore not functioning at anywhere near my best.
Disgraceful.
You try convincing a reluctant "healthcare professional" when you are worried that you are coming across as a babbling idiot.
Disgraceful.
Any evidence you provide is dismissed out of hand.
Disgraceful.
Nine years from diagnosis, and six years from my own awakening, "healthcare professionals" are still trying to prescribe antidepressants.
Shameful.
Been there, done that, got the zombie T-shirt!
Disgraceful.
This must change.
Patients and "healthcare professionals" in the UK are miles apart.
Do I think this distance will close as a result of a "strengthened" NHS Constitution?
Is my glass half empty?
Always.
So no.
I am but a product of my undiagnosed hypothyroidism.
Since childhood.
Shameful.
I have never wanted to be wrong more in my life.
Despite everything I believe that "healthcare professionals" start out with the best intentions, after all they take the Hippocratic Oath (Wikipedia).
Upon reading apparently they do not, not all of them, in the UK anyway.
Shameful.
Explains a lot.
So what moral obligation do they have?
All I have ever wanted is to work in partnership with the "healthcare professionals" as part of a team responsible for my care.
It does not feel like that at present.
Shameful.
What would I like to see in the future?
So glad you asked.
So if in the "normal range", taking levothyroxine, but still symptomatic, then
- rule out any possible vitamin/mineral deficiencies. Hypothyroid patients need to be towards the top/bottom of the range where applicable as it is common to have problems with storage/conversion.
- adrenal fatigue/insufficiency/weakness. This too needs to be acknowledged as a problem and addressed as part of the big picture of treatment of hypothyroidism.
- the connection between hypothyroidism (in particular Hashimoto's Thyroiditis) and gluten/wheat intolerance needs to be acknowledged.
- accept that some patients will benefit from T4/T3 combination treatment with the addition of liothyronine (synthetic T3).
- if synthetic combination treatment does not alleviate symptoms then natural T4/T3 combination treatment (NDT: Natural Desiccated Thyroid) must be an option.
- as I understand it liothyronine (synthetic T3) only treatment should be the last option considered.
If the above steps are taken in order the number of patients reaching points 4, 5 or 6 should be few and far between.
But they need to be an option.
If they do become necessary and you have the support of your "healthcare professional" team then the transition process will be much less scary and desperate.
Scary and desperate is where I am at.
Disgraceful.
I've been on my soapbox long enough.
I really hope that the "strengthening" of the NHS Constitution is a positive development for all patients and their families in England.
I really do.
I REALLY DO.
This is a fantastic opportunity for positive change and inclusion.
My way of coping has always been to hide behind self-deprecating humour.
I am (just about) coping.
Never doubt that I want the best for all hypothyroidism patients.
Always.
I always have.
I always will.
Remember, for as long as we have hope we have a chance.
