#6 News Style Post: The Science Behind "Brain Fog" Revealed #NHBPM

BREAKING NEWS :

THE SCIENCE BEHIND "BRAIN FOG" REVEALED

We all know that our metabolism is clobbered by hypothyroidism.

But did you know the brain is so energy hungry in humans that it accounts for 20% of the resting metabolic rate?

Twenty percent!

Yet it makes up just 2% of body mass.

No, me neither.

The penny has dropped.

It makes sense now.

My shrink-wrapped brain had been unable to join the dots.

The Guardian, 22 October 2012 : Invention Of Cooking Made Having A Bigger Brain An Asset For Humans

I will regurgitate this information when I next meet my endocrinologist, my doctor, or anyone else who will listen to me for that matter.

Remember, for as long as we have hope we have a chance.

#5 Health Activist Soapbox #NHBPM

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.

The NHS, patients, and public, are all being asked to respond by 28th January 2013. Views sought on strengthening of NHS Constitution.

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

1. 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.
2. 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.
3. the connection between hypothyroidism (in particular Hashimoto's Thyroiditis) and gluten/wheat intolerance needs to be acknowledged.
4. accept that some patients will benefit from T4/T3 combination treatment with the addition of liothyronine (synthetic T3).
5. if synthetic combination treatment does not alleviate symptoms then natural T4/T3 combination treatment (NDT: Natural Desiccated Thyroid) must be an option.
6. 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.

#4 How Do I Decide What To Share #NHBPM

Today is day 4 of WEGO Health's National Health Blog Post Month (#NHBPM): "How Did I Decide What To Share. What Do/Don't I Share."

And on the sabbath! *mock horror*

So how did I decide what to share?

It was easy.

Everything.

Everything relating to MY LIFE "living" with a chronic illness.

I see things in black and white.

I am learning to find room for some grey in my life.

A sliver.

It's a start.

Just not fifty shades!

After suffering a nervous breakdown I was diagnosed with an "extremist personality", clinically known as Borderline Personality Disorder (BPD), Mind, Wikipedia.

I now know I had a nervous breakdown because of undiagnosed hypothyroidism.

Either way it lead to a diagnosis.

Eventually.

Dark Days.

Black.

Metaphorically my life with chronic illness is now grey.

(If you are wondering: yes, I do "do" irony)

Not yet into the light.

But progress.

I digress.

When I started this blog the only way it would work for me was if I told the whole story.

No sugar coating.

If I was to help myself and others.

Everything.

Honesty is important to me.

I have trust issues.

I believe that democracy has to be secular.

So too my blog.

Hypothyroidism > Hashimoto's Thyroiditis > Thyroid Health > Chronic Illness > Mental Health > Gluten Free.

This is MY LIFE.

I have room for little else.

But when I do.

I've even been known to share my joie de vivre.

Remember, for as long as we have hope we have a chance.

#3 I Don't Know About This, But I'd Like To #NHBPM

Is it only day 3 already?!

WEGO Health, I will hunt you down, and when I find you I will jab my finger at the nearest #NHBPM poster and utter these immortal words...

"I don't know about this, but I'd like to."

*blows raspberry*

This pretty much sums up my life "living" (am I living a LIFE?) with a chronic illness (the autoimmune disease Hashimoto's thyroiditis resulting in hypothyroidism).

"Living" my LIFE through a laptop screen is a sobering experience.

It is my portal on the world, my health cost me my job and my dignity (forced to "beg" for welfare benefits).

One of the many ironies of my LIFE is that on the rare occasion I feel up to doing something/anything I do not have the money.

A familiar tale of woe.

Boring.

"Whaddya gonna do."

*in best Tony Soprano voice*

Enough.

Looking for answers, if I had a penny for every time I've thought: "I don't know about this, but I'd like to."

Well you know.

So what prevents me?

My disgustingly poor memory.

An unwelcome symptom of hypothyroidism.

I can invest a not inconsiderable amount of time researching/reading/listening and a little less than fuck all actually sticks.

The more demanding the material the easier it slips into the abyss.

But.

Hope keeps me coming back for more.

"I don't know about this, but I'd like to."

I do exactly the same thing when daydreaming about the LIFE I would like to live.

A futile fantasy.

Acceptance/denial is a battle to be fought every day.

Every day.

But, hope keeps me coming back for more.

So on that note.

See you here tomorrow?

Remember (irony! *winks*), for as long as we have hope we have a chance.

#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.

#1 Why I Write About My Health #NHBPM

I am back.

I am sorry.

What is this blog post all about?

Please allow me to explain...

November 2012 is WEGO Health's National Health Blog Post Month (#NHBPM)...

2012 may be winding down, but Health Activism is going strong. Let’s rejuvenate our blogs and do one last advocacy project before we head into 2013.

You may have heard about National Blog Posting Month or NaBloPoMo, a month dedicated to the art of blogging, taking it to a new level by pushing all participants to blog every single day of the month.

Well, we are doing our own Health Blogger version all month long. NHBPM 2012 is here! Sign up now to join the 30 day carnival and get 60+ prompts catered specifically to online health leaders, bloggers, and anyone who wants to try their hand at blogging about health.  

We'll also be spotlighting your health blogs throughout the month of November so be sure to let us know if you're interested in being featured.

 WEGO Health : Join National Health Blog Post Month


A little more information about WEGO Health...

WEGO Health is a different kind of social network, built from the ground up for the community leaders, bloggers and tweeters who are actively involved in health online. WEGO Health is a platform for committed health advocates to foster new relationships, gain access to helpful resources, and to grow their communities. And it’s free.

Our goal is to equip our network with opportunities designed for the active contributor,relevant content, powerful educational resources and shareable interactive media. We hope that the bloggers, tweeters, and community leaders that we call Health Activists will find inspiration, strength and support here.

WEGO Health : About Us


I would have liked to have been able to embed the above pages within this blog post, to make it look more "proficient" (whatever the word is to describe that it looks like I know what I'm doing), but I do not know how to do it... or if it is even possible in blogger... I could not find any help.

That is the housekeeping done, on with the show...

WEGO Health have found it in the kindness of their heart to provide a prompt for a blog post for each day of November.

The prompt for today is (as if the title of this post did not give it away!)...

"WHY I WRITE ABOUT MY HEALTH"

A good question.

I started this blog in the summer of 2010. It seemed like a natural progression to my increasing awareness that hypothyroidism was a chronic illness, it was not going anywhere, and that I had it for life.

So I had better get used to it.

I still have not got used to it.

I still think that one day I am going to get "better".

I write about my life with hypothyroidism to try to make sense of it all when those around me in the "real world" think it is "no biggy".

When I began to educate myself about my illness I found a beautifully fragile and complicated online community. A community where I was accepted. With open arms. Where people understood.

Where I found hope.

Hope is why I am still here today.

I will not give up.

I now know (and feel) that I am not alone on my journey through life.

A beautiful inspiring thing.

A comfort blanket for the dark days.

You are welcome to share in my journey.

See you tomorrow.

Remember, for as long as we have hope we have a chance.