No Surprises....

You know the drill....

"No Surprises" by Radiohead seems to encapsulate this blog post you lucky people!

A heart that's full up like a landfill
A job that slowly kills you
Bruises that won't heal

You look so tired and unhappy
Bring down the government
They don't, they don't speak for us
I'll take a quiet life
A handshake of carbon monoxide

No alarms and no surprises
No alarms and no surprises
No alarms and no surprises
Silent, silent

This is my final fit, my final bellyache with

No alarms and no surprises
No alarms and no surprises
No alarms and no surprises please

Such a pretty house, such a pretty garden

No alarms and no surprises (let me out of here)
No alarms and no surprises (let me out of here)
No alarms and no surprises please (let me out of here)

This blog post is a continuation from the events outlined in my previous post I Should Have Known....

As soon as I got home from seeing the Endocrinologist I made an appointment to see my Doctor.

I wanted to discuss, as a matter of urgency, the whole Neurologist angle. It transpired that there really were....

No Surprises.

I dove right in and asked about the letter from the Endocrinologist that was sent after my April appointment that had suggested I be referred to a Neurologist.

To which my Doctor replied, verbatim; "we thought we would wait until you next came in to discuss it".

No Surprises.

Anyway, I thought.... we????

What, like the fucking Royal we?!?!

Nevermind, it was obvious that my Doctor did not feel this was urgent enough to interrupt my suffering!

No Surprises.

What followed was another example of, well, you work it out....

My Doctor had already received a letter from the Endocrinologist providing an update from my appointment only two days before.

Fair play Endo., points for being prompt in providing details of your incompetence.

The Endocrinologist now wants to refer me to a Rheumatologist! 

A Rheumatologist!!!!.... I shit you not!

Have you heard the one about the Endocrinologist, the Neurologist and the Rheumatologist?

No?

They walk into a Gynaecologist's office.... who says.... "what are you cunts doing here?!"

No?.... Not quite?.... There is a joke in there somewhere, I know it!

Who knows, the Endocrinologist is likely to refer me to a Gynaecologist next! *winks*

No Surprises.

Back to my Doctor's appointment. He said; "well the Endocrinologist doesn't think it's your thyroid".

No shit Sherlock!

No Surprises.

I then proceeded to run through my Endocrinologist's appointment from my point of view.

One area of concern is my high blood pressure. Every time it is taken it is high. My Doctor said that although not ideal it does not require medicating and is not a priority at the moment. I asked if I should be concerned and my Doctor said no.

Every time I go to the hospital a nurse weighs me, and every time I am heavier than before!

No Surprises.

It sucks!.... I am now 135kg!.... don't even go there!

I am confident that when my Hypothyroidism is being treated effectively these two areas of concern will be improved upon with my continued discipline and exercise!

It's the simple things I miss the most.... like being able to exercise without it taking weeks to recover.... after a few years it puts you off even trying.... believe me!

I disgust myself at times! 

My line in the sand always used to be.... keep my weight below 100kg.... now?.... don't make me laugh!

The weight gain is SO cruel.... huffing, puffing, sweating.... all the while bloating, retaining(?), constipating....

No Surprises

Did I mention?.... I disgust myself at times!

No Surprises.

With the hors d'oeuvres (as Del Boy would say! *winks*) out of the way I moved in and began my sales pitch for Natural Desiccated Thyroid (NDT).

I struggle to differentiate confidence from arrogance.... I know.... what gives?

Anyway, I nailed the sales pitch for NDT as best I could in the circumstances.... yay!

I hit all my marks.... 

• why a Reverse T3 test would prove if the T3 my body is producing is pooling in it's inactive form in my bloodstream!
• how I had been a good boy and done it the NHS way for eight years despite feeling very poorly!
• how the Endocrinologist had reneged on an agreement to prescribe NDT if there was no improvement in my symptoms!
• how I had informed myself of the facts. And that NDT can be prescribed on the NHS!

I had taken notes with me that detailed where I had obtained my information from regarding prescribing NDT.

I had also included my proposed timetable for the transition from synthetic T4 (levothyroxine) to natural T4/T3 combined therapy (NDT).

My Doctor could see I had brought my A-game with me and was not going to be fobbed of no more!

NO MORE!!!!

A little background for those of you not familiar with the healthcare system in the UK....

Healthcare is provided free at the point of delivery by the NHS (National Health Service) which is funded by the taxpayer.

Private healthcare is available to those who can afford it.

No Surprises.

Currently the purse-strings of my Doctor are controlled by the local PCT (Primary Care Trust).

This arrangement has become known as the post-code lottery. Depending on where you live the medication available to you may differ. This has received widespread media coverage whenever the media feel there has been an injustice. And there have been some truly heart-breaking stories.

This could all change if proposed NHS reforms are implemented and GPs

Anyway, my Doctor asked if I would leave my notes with him, and told me he will write to the PCT to see if they will fund NDT!

This is a result!

A necessary step in the right direction.

I am nothing if not realistic.... so I am not getting my hopes up.

No Surprises.

The ace up my sleeve is the one where my Doctor can still prescribe NDT without funding from the PCT if I am able to pay for the medication. Approximate cost £50 for three months in the first instance and then once a stable dose is reached the cost should be about £25 every three months (because, for example, instead of separate half grain and one grain I can replace them with one and a half grain).

In all the excitement I did not come away with copies of the letters from my Endocrinologist for the April and June appointments but this can be easily rectified.

I have asked for a copy of my Doctors letter to the PCT and their written response.

If at the end of this part of my journey towards improved health I am refused treatment with NDT I want it categorically in writing.

I have noticed that if you keep requesting copies of letters and decisions in writing it makes health professionals uncomfortable.... no bad thing after what I have been through! *winks*

No Surprises.

My Doctor has asked me to give it three weeks for the machinations of bureaucracy to move. The similarities between this situation and my bowels has not gone unnoticed!

No Surprises.

Still no "movement" on a RT3 blood test.... if it becomes necessary I will get this refusal in writing too!

No Surprises.

The disgust I felt after my appointment at the Endocrinologist served to fire up my adrenals.... I think.... as I was able to end up having a productive week!

I am feeling it now though.... a #zombieday has turned into a #zombieweekend.... I've been here before so it holds no fear for me anymore....

No Surprises.

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


nb. I have re-read this post again the morning after the night before. I can tell that it was written under the influence of brain-fog. Can you? I will leave it as is, even though I'm not too happy with how it flows.

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.

Ramble On & On....

You see what happens?!?!

I was not, and I am still not, happy with my previous blog post.

My brain seems to be short-circuiting and I am unable to convey the message I would like in my writing.

Now, having a perfectionist trait makes this difficult for me but I will leave it out there in the interests of the "bigger picture".

My reason for doing so was my need to let you know that I'm still here.... selfish?.... moi?

One day I will wonder what all the fuss was about and be proud that I "let it all hang out".

I'm not there yet so.... *suck it up big boy!*

In the midst of this imagined chaos I have made some progress....

But I didn't feel I could record these events and do them justice.... *get over yourself fat boy!*

Yes, well, easier said than done.

Progress, right....

I managed to make it to an appointment with my Endocrinologist in April (I think) when I was not feeling great at all.

I think this helped in a weird way because it must have been obvious to the Endo that I wasn't on terra firma.... I am a poorly boy.

My endo casually dropped into the conversation; "I can prescribe you Natural Desiccated Thyroid, let's see how your next blood tests are and we'll take it from there."

This contradicted previous statements made to my face, MY FACE.... but I remained "Kool and the Gang"....

The moment has passed but not been forgotten....

Can I carry a grudge?!?!

Anyway....

I need to arrange a blood test this week ahead of my appointment with my Endo next week.

The problem is I am feeling really shit at the moment. But....

This could be a defining moment in my journey to wellness....

I need this.

I want this.

I am hoping NDT will help me feel better day to day.

The Endo better come through on this.

My legendary patience (ennui) will assist me with this I'm sure.

It could be the answer, or, it may be one part of the answer....

But I will know.

I need to know.

I want you to know.

I want you to see the best of me.

You deserve nothing less.

Ramble On....

Ooops!

Where to start?

I've lost my creativity when it comes to writing/blogging. I've fallen off a cliff.

I hope you will indulge me and allow me to ramble on for a bit until the spark returns.

2011, what gives?

The days have become weeks, that have melted into months, and here we are it is June already!

I have not felt so unwell since the time I was on 200mcg of levothyroxine daily, the years 2003, 2004 & 2005.

It's hard to pinpoint any specific symptoms it is just the whole raft of thyroid shit that goes with being hypothyroid.

It sucks and society does not understand.

But you do.

I want society to acknowledge that my life is difficult and to give me a break.

Meanwhile in the real world this is not going to happen.

The media seem to portray all of us who rely on welfare benefits as having made a "lifestyle choice".

They use examples of abuse/fraud to tarnish us all.

I can't help but begin to feel guilty.

I should not have to feel this way.

No.

I have enough to worry about without being made to feel guilty.

Fuck 'em!

I am not well.

Anyway.

I try to eat my main evening meal with my Mum and my Brother at my childhood home.

Recently (March, April, May) I was not even able to get out of the house to go to Mum's.

The drip drip effect of a poor diet and other things has impacted on my health.

I have been a proper recluse recently and it is a destructive pattern of behaviour for me to fall into.

Part of the puzzle is the impact of Government policy on my life.

They make life so difficult.

It will only get worse due to welfare benefits failing miserably to keep up with the cost of living of essential items like gas, electricity, petrol and food where inflation is soaring.

Broken record.

You would think that the Government would want to help me improve my quality of life.

Not live in poverty as I do now.

I know.

Naive.

Still.

I am a hopeless romantic fool!

So I do what I do best and feel sorry for myself.

Ugly.

My confidence and self esteem are but a memory, like a washed out fading Polaroid.

Elusive.

Things that need to be done become huge obstacles that I believe are insurmountable, but at the same time I know are achievable if only I could have a little improvement in my health.

As I've mentioned before, my health has impacted on areas of my life that are slowly but inexorably deteriorating, while I battle to get a foothold towards a brighter future.

My house is mimicking me and slowly falling apart.

It has seen no investment for more than 11 years now.

Take my kitchen.

I have no cooker/oven, no microwave, my toaster broke earlier this year, leaving me with no way of cooking food.

I have no washing machine.

I do not have the means to replace these items.

It has now reached the point where I have a kettle and a fridge freezer.

Fuck it!

I'm bored of detailing the same old shit!

Nothing changes.

You get the picture.

Some lifestyle choice!

I so desperately want to be the best of me.

Understand?