I Should Have Known....

Indulge me for a moment please.

And all will become clear....

This is a fantastic song "I Should Have Known" taken from the brand new Foo Fighters album, Wasting Light.

You will be rewarded if you listen to it.... it might even help you get through this blog post *winks*

I should have known,
That it would end this way,
I should have known,
There was no other way,
Didn't hear your warning,
Damn my heart gone deaf.

I should have known,
Look at the shape you're in,
I should have known,
But I dove right in,
One thing is for certain,
As I'm standing here,
I should have known.

Lay your hands in mine,
Heal me one last time,
Though I cannot forgive you yet,
No I cannot forgive you yet,
You leave my heart in debt,

I should have known,
I was inside of you,
I should have known,
There was that side of you,
Came without a warning,
Caught me on a web,
I should have known,
I've been here before,
I should have known,
Don't want it anymore,
One thing is for certain,
I'm still standing here,
I should have known.

Lay your hands in mine,
Feel me one last time,
Though I cannot forgive you yet,
No I cannot forgive you yet,
You leave my heart in debt
No I cannot forgive you yet
No I cannot forgive you yet
You leave my heart in debt
I should have known

Maybe you was right,
Didn't wanna fight,
I should have known,
Couldn't read the signs,
Couldn't see the light,
I should have known,
Though I cannot forgive you yet,
Though I cannot forgive you yet,
You leave my heart in debt,
No I could not forgive you yet,
No I could not forgive you yet,
You leave my heart in debt,
No I cannot forgive you yet,
No I cannot forgive you yet,
You leave us all in debt,
I should have known.

The beauty in songwriting (and poetry), in my humble opinion, is that it is personal to the individual listener (reader). 

For me the same song can touch my heart in so many different ways depending on what I am feeling at that particular moment. It can be profound, throw-away, and everything in between.

Dissecting the lyrics (words) in an academic manner does not "float my boat". I want to feel.

The song's or poem's structure can be examined. But the author is the only one who truly knows what "it" means.

For us mere mortals?

I take from it what I feel.

Don't I go on sometimes *winks*....

Back to the business in hand.

I had an appointment with my Endocrinologist yesterday....

It was an unmitigated disaster!

While the feelings were very raw I fired off a couple of "cunts" in my "tweets"!

I apologise if anyone was offended.

Did it help? Yes and no. My mind was still racing which prevented me from having a decent night's sleep. But I never have a "decent night's sleep" anyway.

All that was left was the satisfaction of swearing.... *makes sign of the cross on chest and looks to the heavens*.... which I am quite partial to at times.... and yes, whisper it.... I would even go so far as to say I enjoy it!

Stop waffling and get on with it!

Right, the match report from yesterday with a little bit of history and context....

Still waffling....

At my previous appointment with my Endocrinologist in April I was told that if there was no improvement in my well-being and that my blood tests were still in the "normal" range I would be prescribed natural desiccated thyroid (NDT).

I Should Have Known.

This was a massive step forward for me in my treatment. I have walked the walk, like a good little boy, the way the National Health Service (NHS) has wanted me to for 8 years. That's right. EIGHT YEARS!!!!

I have played their game.

I Should Have Known.

Taking Levothyroxine (synthetic T4) every day, EVERY DAY!!!! Blood has been taken more times than I care to remember, dosages have been tweaked, and I continue to feel just awful.

I Should Have Known.

The one thing that has remained consistent in all this time?

I have been ignored, and any of my suggestions dismissed, by every health professional I have encountered.

A damning indictment of the NHS today!

I Should Have Known.

I have been made to feel like a second class citizen.

Familiar?

So forgive me but I am beginning to feel a little aggrieved!

I Should Have Known.

So for the two months since my last Endocrinologist's appointment I have continued to feel really quite awful. But I have had the spectre of hope with me that if I can just carry on for a while longer a really big step forward awaits. Not the answer, just a step forward.

I Should Have Known.

If my experience has taught me anything it is to keep my expectations in check. So I shuffled off to see the Endocrinologist....

I Should Have Known.

We started by evaluating the results from the blood taken on Monday after being on 150mcg for ten weeks ("Teva" Levothyroxine)....

TSH 2.8

FT4 18.4

FT3 5.1 

No surprises, they we all within "normal" ranges.

I Should Have Known.

What followed was the "normal" back and forth of me asking for a Reverse T3 (RT3) blood test to determine if the T3 hormone is "pooling" in my bloodstream in it's inactive form.

My questioning of what exactly "normal" means seeing as it is so subjective.

My willingness to try adding synthetic T3 to my medication or preferably giving NDT a go for a trial period.

I Should Have Known.

My Endocrinologist responds with the opinion that there is no need to test my RT3 as my FT3 results show that my body is producing and converting T3 just fine.

Also that synthetic T3 is "dangerous" and only used as a last resort..... basically I need to be in a coma!

My blood test results are used to support the argument of my Endocrinologist.... sometimes their accuracy.... status quo.... sometimes their inaccuracy.... T3/NDT.... 

Contradictions that have NEVER escaped me!

I Should Have Known

He reverted back to stating that NDT is also "inconsistent" and therefore dangerous because of this and that it is not prescribed by the NHS for this reason.

I reply that there are patients who are prescribed NDT by the NHS. His retort; "I see more thyroid patients than you so you are wrong." They all have my deepest sympathies!

I Should Have Known.

You may have missed it amongst my brilliant writing *winks* so let me repeat....

In April I was told that NDT would be prescribed if there was no improvement in my condition.... thereby giving me HOPE!

In June I was told that the NHS do not prescribe NDT yadda yadda yadda.... wrong wrong wrong!

So correct me if I am wrong.... I WAS LIED TO!

To placate me?

To shut me up?

To insult me?

To be so arrogant as to assume to be "better" than me?

NO, NO, NO, and NO!!!!

I Should Have Known.

If you no longer respect someone what do you do?

I bit my tongue, rocked in my chair to control the rage I felt, and managed to walk away....

Another appointment has been scheduled for 6 months time.

I Should Have Known.

You think that was bad well here's is a real doozy.... verbatim....

"I am afraid you have become fixated on T3/natural thyroid which is not the answer."

Fixated. FIXATED.

From my dictionary.... fixation n. preoccupation, obsession. fixated adj. obsessed.

Kudos for a good word. But it is hardly a compliment!

I Should Have Known

But I have to hold my hands up here.... it is true. I have become fixated on NDT.... but not for the reasons imagined by the Endocrinologist.... but because it is the next thing I need to try to get my life back!

To me this is a positive. Not the cowardly insult my Endocrinologist intended.

I Should Have Known.

Let me step back for a moment....

I understand that there are many thousands of members of the "hood" (brothers and sisters.... mainly sisters!) for whom synthetic T4 replacement therapy works just fine and they get their life back 

Conversely there are a significant number of us for whom the hard line, inflexible, approach of the professional endocrine community just does not work.

But I am suffering.

We have all suffered. You will get no "point scoring" from me.

This is my life.

We all have a life we deserve to live.

My story.

We all have a story to tell.

I repeat.... I have done it the NHS way for EIGHT YEARS!

And it is not working for ME!

It is time I took a leaf out of Frank Sinatra's songbook and "did it my way".

If only it were that easy!

I Should Have Known.

Right, the last part of my appointment yesterday....

My Endocrinologist told me that the letter to my Doctor after my April appointment suggested that I be referred to a Neurologist.

STOP. REWIND!

Neurologist! What the fuck!!!!

Now, correct me if I am wrong.... again *winks*....

But would you expect your Doctor to ask to see you, or at least inform you, that a specialist had recommended you be referred to a Neurologist!

This tossed.... like confetti into the air.... has resulted in many thoughts and questions that I am still grappling with.

I have made an appointment to see my Doctor on Friday.... should be interesting.

Do I now have an even bigger problem with my Doctor?

I Should Have Known.

So I need to get copies of the letters from my Endocrinologist to my Doctor.

Discuss the Neurologist angle and it's implications.

Ask my Doctor to prescribe NDT as my Endocrinologist refuses to do so. The Endo told me to ask my Doctor for this.... I suspect to keep me chasing my own tail for his pathetic amusement.

We all know it is possible for the NHS to prescribe NDT you just have to find a "caring" health professional!

Why is this so hard?

You know me.... the irony is always intentional! *chuckles*

I Should Have Known.

For as long as we have hope we have a chance.