Talk of the devil....

Where have I been for five months?

Jail?.... no, I'm a law-abiding coward.

Found God?.... yeah, right!

Abducted by aliens?.... more likely.

Fallen in love?.... not yet.

Enough already! The truth is a little less exotic.... my old laptop finally gave up the ghost and my living arrangements changed. Both, in their own way, the consequences of "living" with a (not optimally treated) chronic health condition.

But.... I do have a fabulous new pet Sony VAIO laptop which is only 2 days old.... yay!!

And I am now back living in my childhood home with my Mum and my Brother. I love them both dearly but it is not how I saw things being when I was 40 years old. Then again whose life has gone exactly, or even close, to plan?

So I need to be selfish and concentrate on my health.... this is not my default setting.... you think?!?!

What else have I been up to?

This and that.

I moved back home in October and the understandable adjustment period (still adjusting) followed.

Since ill-health has resulted in being reclusive and skint all the time Christmas and New Year has gone from being a period of socialising and celebration to a time of fear and wanting it over with.

My very own Grinch complex.

Like I need an excuse for self pity.... right?!.... so you can imagine.... but it's over with for another year and spring is just around the corner.

Anyway, regarding my thyroid health, I have seen my Doctor and my Endocrinologist a couple of times since my last post. I have made progress of sorts in the battle between good and evil *winks* but will cover this in detail in another post soon.

I am still following a gluten/wheat free diet.

I am happy to report that I no longer require 2 Movicol sachets a day to spend some quality time on my throne!

Now I am back online I hope to find inspiration for foods to eat, recipes to try, and where specific foodstuffs can be purchased.

This will be helped when I finally get my first ever printer.... I just need to count my 2 glass jars of small denomination coins first (£50-£100 fingers crossed). I am old school and function better when I have something tangible in my hands.... those with dirty minds.... there is a joke in there somewhere *chuckles*.

I am not 100% happy with my digestive health yet, but one thing's for certain, I will never take it for granted again.

Do not fear.... I will make sure to keep you up-to-date with my bowel habits in future.... the highlight of everyone's day I'm sure!

I am still caffeine-free. But even with my improved digestive health I dare not try any type of coffee.

I still do not drink alcohol. Since #thyroidlife began any alcohol consumption makes me feel really ill. I never drank at home and was only ever a social drinker.... so no social life equates to no alcohol.... simples!

I am approaching 3 years smoke-free.... THE BEST THING I HAVE EVER DONE!.... you see, we are all stronger than we could ever imagine. I am so proud of myself for this that I have to fight the urge to pontificate to anyone who will listen, including the world in general.

As if further evidence is needed.... you are no doubt aware by now that life with me is quite the party!

I eat a very healthy diet, pay particular attention to hydration.... but my nemesis is.... portion control! I consume too much, albeit healthy food, for the calories my body burns. A body ravaged by Hashimoto's Thyroiditis consumes the bare minimum.... yet another cruel irony of this particular auto-immune disease that is not lost on me!

So, I need to work on portion control.... like I haven't got enough on my plate already....

A knock-on effect of being ill for so long, and with my particular problems, is that you become extremely.... and I mean EXTREMELY.... physically unfit. It is a horrible by-product of chronic illness.

With that in mind I have taken tentative steps towards beginning exercise again.... this is yet more evidence, that for me, I am feeling pretty good.... but, as is my want.... I am waiting for this particular bubble to burst!

I have started a stretching routine in the first hour after waking and in the evening before retiring to bed.... baby steps.... I read that stretching before bed aids restful sleep.... not quite there yet but every little helps. In time I would like to be able to attend a yoga class.... baby steps.

My flexibility has improved markedly. When you notice, and hold onto these small gains, I find it helps my state of mind just as much as my physical state.

I have been going for a short walk and/or generally being more active during the day, running errands etc. This has caused the expected muscle fatigue, generally after the equivalent of only a couple of miles walking. I really feel it in the front of my thighs!?!?

My aim is to be able to enjoy the countryside on my doorstep, with walks along the river, as the weather and my fitness improves. I intend to post photos so that you can enjoy the experience too.... you know it has been a long time coming.

All of that said, I still suffer horribly from the symptoms of hypothyroidism, it just seems that for now at least the balance between really bad days, average days, and good days has altered a little.

Unrefreshing sleep still obsessively stalks my every waking moment.... his partner in crime; brain fog/memory impairment never far behind. The sores on my skin, the heightened levels of anxiety, haunt me still.... you get the picture.... of course you do.... you "live" it too!

Libido?!?!.... do me a favour!!!!

I digress.... those of you in the same boat, on the same stormy seas, know that you can only do what you can do.... it is still nigh on impossible for me to make any plans in advance.... so that frustration continues.

Posts to follow on subjects including; my supplement regime, anonymity, and developments in my treatment from "Health Professionals".... sarcasm, as always, intended.

I would like to take this opportunity to thank all those readers who have stayed with me, those who have recently "discovered" me, those who comment, and those who spread the word.... THANK YOU ALL.

I've wanted to type this for so long....

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

Introspection....

It occurred to me today that there is something about me that I haven't mentioned in a while.

Those of you who have followed my blog (aka tale of woe) from the beginning will be all too familiar with it.... that's right.... it's time to talk about my.... "all together now"....

EXTREMIST PERSONALITY!

It still impacts on my life every.... single.... day!

I learnt the other day, at my meeting with my Project Worker from Mind (www.mind.org.uk), a mental health charity, that the correct term to use is Borderline Personality Disorder (BPD), see wikipedia page for BPD.

I felt that "extremist" was for want of a better word, well, extreme! But "borderline" implies that you are on your way to having a personality disorder but have not quite been accepted into the club just yet!

Is it any wonder I'm fucked up?!?!

From the wikipedia page for BPD there appears to be some consensus towards changing the wording of this disorder to Emotionally Unstable Personality Disorder. To me "emotionally unstable" implies one may be prone to violent outbursts, so this doesn't fit me either.

I digress, it is but a label.

Anyway, I wanted to try to explain how this impacts on my blog, my email correspondence with friends and even my "social networking".

It all hinges on the all or nothing thought processes that have become who I am (black or white thinking, NO grey!). You see, if I feel I can't do my very best and ultimately do myself justice (my perceived justice), I do not blog, email or interact online.

I am constantly working to address this and have blogged when less than happy with the result, sometimes even including some sort of disclaimer regarding how I'm not happy with the standard of writing etc.

With email correspondence it is even worse. I have the irrational fear of being judged by my peers and consequently their interaction with me must only be on my terms when I am again at my perceived best. Like I say, irrational, right?!?!

Running with this thought process for a moment it is clear that I have trust issues too. Why do I not trust my friends to understand that I may not always be at my best.

Is it because I fear they will no longer want to be my friend?

RHETORICAL ????    !!!!

Of course it is!

Still running.... furthermore, I hope that friends will appreciate a certain charm when my communication is a little bit clumsy. But I have not had the confidence to push this particular envelope thus far.

I have been told that my writing style (prose?) is appreciated and my musings enjoyed so why is this not enough. Self esteem issues, a lack of self worth? Yes and yes!

I think it's time for a favourite mantra of mine.... it is easy to talk the talk but much more difficult to walk the walk!

Or, do as I say not as I do.... espoused by all our favourite dictators/politicians/celebrities!

I can guess what you are thinking (ego alarm bells ringing!).... with this level of enlightenment and awareness surely salvation awaits *winks*

You would think so.

I want to try.

The friendships I have made on what is evidently to be my lifelong thyroid journey deserve nothing less. It is the shared understanding that has been so welcome, I just need to extend this courtesy to you, the readers of my blog, and my friends.

I need to try.

From a selfish perspective I think my blog will be better for it in a historical context if I am able to post in all weathers.

I will try.

I am but a work in progress on this journey that is my life.... and you lucky lucky people get to share in it!

"You're just too good to be true.

Can't take my eyes off you.

You'd be like Heaven to touch.

I wanna hold you so much.

At long last love has arrived.

And I thank God I'm alive.

You're just too good to be true.

Can't take my eyes off you."

Without fear how can we ever be brave?

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

Gluten Free Baby, Yeah!....

....in my very best Austin Powers voice!

I mentioned it as a footnote in my last post, the fact that I had been on a gluten free diet. It continues to be a revelation of sorts, in a good way. It has now been 4 weeks and I'd like to share a little more detail of this development with you.

I had been having a rough spell, during which times I withdraw from society and become a complete recluse. After a week or so of living on what I had in the cupboard I noticed my digestive comfort had improved and on reflection realised that I had in fact, inadvertently, been eating a gluten free diet.

When you are living with a chronic illness, any changes for better or worse are poured over in minute detail, almost obsessively. What do I mean almost obsessively?! It was obsessively OK!

Gluten free had been on my radar before. When you are looking for answers you come across all sorts of information whilst researching online. I have my own rule where I only ever try to make one change at a time, otherwise how can I be sure what it is that is making me feel better or worse? This takes time and incredible patience, something all of us in the online thyroid support community have in abundance, even if it doesn't always feel this way.

Anyway, the next time I ventured out to the supermarket I made a decision to give this whole gluten free diet thing a go, for real. It is basically a lifestyle choice, with the pros and cons this inevitably involves, but it is a CHOICE. For me it appears that the benefits far outweigh the sacrifices.

The sacrifices.... I LOVE pasta and bread!.... I LOVE pastries, biscuits and cakes!.... BUT.... I LOVE my new and improved digestive comfort MORE!

Did I mention, I LOVE PASTA????!!!!

Did I mention, I LOVE PIZZA????!!!!

(more about gluten free alternatives another time)

Right, let's cut to the chase, my digestive comfort! Which I think we all know by now is my way to avoid mentioning bowel habits too many times in any one blog post!

A little history....

Since being diagnosed with hypothyroidism my bowel habits have gradually become more problematic. My bowels are a topic for discussion, instigated by me, EVERY time I see my Doctor. For the last five years I have been taking 1 or 2 sachets per day of MOVICOL, a prescription supplement produced as an "effective relief from constipation".

Had this relieved my symptoms? No, not really, I always felt bloated and uncomfortable. EVERY DAY!

My Doctor is aware of this and not once has food allergy/intolerance been discussed as a possible cause of my digestive problems. NOT ONCE!

Again it was me, whilst in the grip of a chronic illness, who had to be proactive!

This is not right! This is another example of a failure in the duty of my care by health professionals!

NOT GOOD ENOUGH!!!!

After two weeks following a gluten free diet I no longer needed to take the MOVICOL. My digestive transit times are now less than 24 hours instead of 2 to 3 days. I open my bowels once or twice a day (approximately 10 times a week) and it feels natural. In the immortal words of Alan Partridge my visits to the toilet are now "textbook"! Ha ha!

It tells you everything you need to know about me that I can be so excited about something "normal" people NEVER talk about. But I have suffered!

After five years of discomfort and worry in this one area of my health, to have it improve so dramatically is worth the sacrifice. It has to be. It is a no brainer!

I am also hopeful that with normal service resumed in the bowel habits department it might make it easier for me to leave the house without fear and anxiety and the resulting loss of control of my bowels (translation; shitting myself!). This I have discussed many times before in this blog (and to anyone who will listen! Ha ha!).

It is too early to tell if this lifestyle change has had the added benefit of weight loss. I will have to wait and see if my clothes start to fit better, which would be great!

I am still getting used to these changes but I really hope that in the not too distant future I am able to leave the house and go for a walk, then build up to longer walks, and then possibly even getting my push bike out!

BABY STEPS!

I still believe, with every fibre of my being, that the best possible treatment of my hypothyroidism is still the key to unlocking my future wellbeing and happiness.

To recap; I have now been gluten free for 4 weeks. I have been caffeine free for 7 weeks. Also, it has now been 30 months since I quit smoking forever!

Yay! Go me!

BUT! I'm still fat as butter!

And I still have many untreated symptoms relating to my hypothyroidism.

C'est la vie!

But it is nice to be able to share news of progress with you my dear readers.

MOVING BACK HOME LATEST:

It is still happening but Mum did not want me sleeping on the couch! The box room (a 2.3m x 2.8m cell) is being cleared and a bed has been ordered and will be delivered in 2 to 3 weeks. Then it will be all change.

I have to keep reminding myself that this is a necessary move to make so that I can save a little money. Enough to see a private doctor and pay for my own medication if required.

All together now....

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

After The Storm....

Such a beautiful song, enjoy....

Mumford & Sons - After The Storm

Update: I have yet to move back home to live with my Mum and my Brother.

They are "not ready" for me!?!?

So it is likely to be another couple of days.

But....

It is going to happen!

Decision made, end of story!

Funnily enough.... am I laughing?!?!.... since informing my Mum of my decision I have found some sort of peace with it all. And to be fair to my Mum she has always said that there is a bed for me at "home" if ever I needed it.

I will be on the couch until the box room is fixed up. Not ideal, but.... beggars can not be choosers.

It will be OK.

At some point since my last post I had an epiphany.... why have I been fighting so hard to keep my house during these difficult times?

The answer to this lies in my upbringing.... I think!?!?....

I grew up poor, not destitute, but poor. There was always food in my belly, clothes on my back and shoes on my feet. Typical working class really. Nothing at all to be ashamed of, in fact it's something to be extremely proud of.... childhood shapes us all and I am no different.

I had a happy childhood.

Yet, you see, it was a sign of social mobility for my parents generation to own their own home. I was raised in a Council House.... outdoor toilet, ice on the inside of windows and all that.... but my parents worked HARD and were eventually able to, in no small part thanks to Thatcher's government, buy their home from the Council. My Mum lives in this home, which has been modernised, to this very day.

So for me to leave full time education at 16 and make something of myself to the point where I could afford to buy my very own house was a BIG deal.

It was everything. My perceived success or failure depended on it!

Or so I thought.... until this week.

I realised I have been fighting tooth and nail to hold on to my home because I am afraid of what other people will think of me.... I know!

And this from someone who for as long as I can remember has tried to convince himself that he does not care what other people think of him.... I failed, despite deep down inside knowing I am a good man.

But you know what?!

I can tell you today.... for the first time in my life.... I do not care what others say or think about me.

It's about time I thought of me!

As I've mentioned before.... nearly all of my "friends" have vanished into the night anyway.... I am alone.... and lonely....

But I now have a clean slate.... and this is liberating.

Moving back home with Mum is a short term fix.... just how temporary only time will tell.... but I know for sure it will not be permanent.

The one thing it will allow me, is to concentrate on my health and see where that takes me. If my health improves as I hope.... which there is every chance it will.... I have every reason to be excited about the future.

If it does not then I will face it and deal with it.

I have likened my life now to finally playing the hand I have been dealt instead of trying to play the cards I wish I had been dealt. And you know what? There is much less resistance.

But why did I make the decisions I have made?

Pride? Stubbornness? Denial? Ego? Stupidity? Expectation?

Answers on a postcard!

Whatever, I need to walk with my head held high, not shuffling about staring at the ground!

This post has been me thinking aloud and writing it down.... it's a little bit jumbled.... but it's me.

I will always be me.

Hopefully in the future my writing will improve too. My prose is not flowing as I would like.... and my thought processes are jerky.... and my brain foggy!

In other news.... I have been caffeine free for more than 5 weeks, I am now stimulant free.

I have also been eating a gluten free diet for the last 2 weeks or so in an attempt to relieve my digestive discomfort. I am pleased to report that my bloated, distended belly is improving, as are my digestive transit times. I will persevere with this for a while longer before being able to accurately assess the impact of this dietary change.

I still intend to keep a journal/diary whilst living with Mum, and will try to post when I can.


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

The Perfect Storm....

First off; apologies for deserting my post all too often this year.

You all deserve so much better from me.

I am sorry.

I have had to try to face up to the reality of my life more and more recently. I can put it off no more; tomorrow I have to move back home and live with my Mum and my Brother.

I am devastated.

Who knew the past twelve years had just been purgatory. I now descend into hell....

For eternity?

I hope not.

I can no longer afford to live on my own on the Welfare Benefits the Government see fit to award me.

Simple as that. FACT.

The Government's desire to extinguish all hope and have me live in poverty in perpetuity is cruel. In another couple of years I will be useless to society, too far gone.

Only then will they be happy.

If they invested in me (short-term) rather than giving up on me (long-term) they would get excellent value for money. Instead the Government has become so short-sighted that they cannot see beyond the next Daily Mail (et al) headline depicting ALL Welfare Benefit claimants as some sort of human sub-species not fit to breathe the same air as the chattering middle classes!

However, if I was a single "mother" with a handful of children spawned by different "fathers" I would be loaded!

Go figure.

Irony.

My financial predicament combined with my chronic ill health is truly a vicious circle.

I do not have the strength to fight any more at the moment.

I am not well.

I need to ask for help but I am afraid that if I do it will fall short of what I need.

I need to be rescued.

I wish there was a rehabilitation retreat for those of us with fucked up thyroids who have reached the end of their tether.

I picture a simple place by the beach where it's a short drive into a small coastal town. And best of all there will be a Doctors Surgery containing the kind of doctors we all deserve.

Good company, great food, inspiring workshops, glorious music, writing, and books. Long long walks when I'm up to it. A place where winter is as beautiful as summer.

Dreamy.

Me? A romantic?

Why of course!

Perhaps I should set up a place like this.... it's an idea for when I get well.

I could run my operation for improved diagnosis and treatment of thyroid disease by "health professionals" from there.

I will give my life to taking on the big pharmaceuticals and changing government policies. My analytical and organisational skills will be best served in that direction.

Anyway, we already have "angels" who selflessly give their lives to patient advocacy. There are many advocates out there, but the one that fate would happen to lead me to was Mary J. Shomon, my very own "silver lining", who it is an honour to call my friend.

Don't I go on?!

Anyway, to be financially viable (grown up words!) it would have to be in the US. Would they have me? How will I get in?

Where is the most beautiful place to live, on the coast, in the US, where you get to experience all four seasons? North California (San Francisco)? Virginia? Long Island? Rhode Island? New Hampshire?

Build it and they will come....

I would love to "go away" to a place like this for as long as necessary to get the help and treatment I need....

"HypoMan, a man barely alive.
Ladies and gentlemen, we can rebuild him.
We have the technology.
We have the capability to build the world's first bionic man.
HypoMan will be that man.
Better than he was before.
Better.... stronger.... faster." - The Six Million Dollar Man.

That was the 1970's. Why six? What price now?

That's my dream anyway.

*slaps face.... hard*

Back to reality!

I hope, in time, I will be able to make progress. It is just that I am faced with a huge adjustment to make and I am not sure how it is going to pan out.

It will take time.

Will you give me time?

It will take patience.

I have the patience of a saint.

I need to provide my Doctor with a "dossier" to support my argument for a trial of Natural Dessicated Thyroid (NDT).

I have researched and located freely available evidence published on the Internet by the NHS that documents that the NHS issued 1,700 prescriptions for Armour in 2010. FACT.

I have many other documents bookmarked on my laptop.

I have no printer and my laptop is doing a better job than me of stringing out it's death throes. Worse still at my Mum's I will have NO access to the Internet. I do not have a fancy "smart" phone, as the name suggests; not at all suitable for me!

I do not expect to be prescribed Armour even when I provide my "dossier", and it is this pessimism that is preventing me from going to see my Doctor. Procrastination I think it's called, right Katie?

I detest confrontation. "Thyroid Me" is a coward and not assertive.

I am afraid what my response will be to yet another rejection in the face of compelling evidence.

I can't even begin to imagine what would happen if Armour did not work for me and I requested another brand of NDT.... or whisper it.... the subject of adrenal exhaustion/fatigue.

I am full of anger.

Am I going mad? As that is surely what the NHS would have me believe.

I am full of frustration.

I am lashing out at "society".... when will I learn.... it is unproductive and ultimately futile.

I am full of self-pity.... have you noticed?

Quite a catch!

Moving back home is going to be miserable. I love my Mum dearly, but me and my Brother do not get on.

Back to my small childhood home, a place where there is no escaping each other, and where it is what is not said that is deafening.

Like I say; welcome to hell!

Try to be positive....

I hope to be able to save enough money over the next few years to see a private Doctor and if need be pay for the necessary blood tests (Reverse T3) and medication (NDT).

Am I living in denial?

I cling to the hope that I can lead a "normal" life in the future. By that I mean a job, a relationship, children, a home, a social life, a holiday....

Is this unrealistic?

Am I asking too much?

How have I become brainwashed into desiring, no, lusting after, the consumerist dream outlined in the glossy magazines and every fucking advert you see?!

It will not make me happy!

So why am I finding it so hard to let go?

What is it that I fear?

So many questions, so little time already!

All I do know is that for the foreseeable future I'm going to be off the reservation. I will try to keep in touch. I just do not know how things are going to work out.

I am thinking of keeping a journal/diary.... just snippets of me.... if I achieve this I will try to type them up and post them when I can.

No promises.

It is now that I would like to thank you all from the bottom of my heart for being here for me (and if there is a philanthropist amongst you don't be shy *winks*). You are all my comfort blanket, whether you read this blog, follow me on twitter or facebook, I am indeed a rich man to have you all in my life. I will never forget. Thank you for sharing in my story. I have kept, and treasure, all your comments. You have taught me so much. Thank you.

Don't hold back, feel the love.

"I am just going outside and may be some time" - Oates to Scott.

Wish me luck.

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

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.