T3; a soliloquy for 2011....

T3 or not T3 - that is the question;
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles
And, by opposing, to end them. To die, to sleep
No more - and by a sleep to say we end
The heartache and the thousand natural shocks
That flesh is heir to - 'tis a consummation
Devoutly to be wished. To die, to sleep
To sleep, perchance to dream. Ay, there's the rub
For in that sleep of death what dreams may come,
When we have shuffled off this mortal coil,
Must give us pause. There's the respect
That makes calamity of so long life.
For whou would bear the whips and scorns of time,
Th' oppressor's wrong, the proud man's contumely,
The pangs of despised love, the law's delay,
The insolence of office, and the spurns
That patient merit of th' unworthy takes,
When he himself might his quietus make
With a bare bodkin? Who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscovered country from whose bourn
No traveller returns, puzzles the will
And makes us rather bear those ills we have
Than fly to others that we not know of?
Thus conscience doth make cowards of us all,
And thus the native hue of resolution
Is sicklied o'er with the pale cat of thought,
And enterprises of great pith and moment
With this regard their currents turn awry,
And lose the name of action - Soft you now!
The fair Orphelia! Nymph, in thy orisons
Be all my sins remembered.


William Shakespeare's Hamlet.


Do not think for a second that if I could have done better I would have done so....

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

Christmas Playlist 2010

I am still fogbound!

I really do not want to talk about Hypothyroidism at the moment.... hurrah, I hear you cry!

As previously stated in my post.... Autumn/Winter & The Holidays .... this is not my favourite time of the year since Hypothyroidism gatecrashed the party!

Nevertheless.... I have much to be thankful for at this time.... you, who read my blog.... as followers.... or from the shadows.... give me the strength to persevere.... and I'll dare to whisper it again.... 2011 could be my year.... thank you.

Anyway.... I love music.... so by way of thanks I would like to share a Christmas themed playlist with you that reflects my taste in music.... suggested and inspired by my beloved Mary Shomon.... I hope you can find a couple of tunes that you enjoy (and that all the links work!).

Here goes....


1. The Pogues - Fairytale Of New York

2. Chris Rea - Driving Home For Christmas

3. Keith Richards - Run Rudolph Run

4. The White Stripes - Candy Cane Children

5. The Black Crowes - Back Door Santa

6. Coldplay - Christmas Lights

7. The Rolling Stones - Winter

8. Kate Bush - December Will Be Magic Again

9. Wham - Last Christmas

10. Band Aid - Do They Know It's Christmas

11. Paul McCartney & Wings - Wonderful Christmas Time

12. John Lennon - Happy Xmas (War Is Over)


Bonus Tracks....


13. U2 - Christmas (Baby Please Come Home)


14. Pearl Jam - Santa God


15. U2 - I Believe In Father Christmas


16. Pearl Jam - Let Me Sleep (It's Christmas Time)


17. Jona Lewie - Stop The Cavalry


I hope there was something there for everyone.

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

Season's Greetings.

Fogbound....

.... and it sucks!!!!

Just when I thought I could see redemption on the horizon, fog has descended thicker than I can remember for a long time.

My good natured humour has deserted me.... only to be replaced by my dear old friend.... self-pity!

With a generous helping of sarcasm and cynicism thrown in!.... it really is a heady brew!.... mulled wine?.... go fuck yourself!

Happy days indeed!

I am a recluse!.... yet even me.... I'm sick of myself.... it is just as well I don't count.... c'est la vie!

Anyway, where am I?

I am about halfway through writing my letter to my Doctor.... plan of action 2011  ....and it has been this way for a few days now.... but as soon as there is improvement I will complete it.... and share it with you.

I have taken my temperature every morning, before getting out of bed, for ten days.... as advised.... what for?.... as yet I do not have a clue.... but whatever, it is done!

I have received comments and would like to comment on these and a couple of blogs that I follow.... I am not able to prepare a coherent response at the moment....

So all in all taking into account the fact that this time of year is my nemesis....  Autumn/Winter & The Holidays....

.... I'm hardly a bundle of laughs.... it's just so foggy in here!!!!

Remember.... for as long as we have hope we have a chance.... bite me!!!!

Plan of Action: tentative first steps....

.... I hardly dare say it.... towards a plan of action.

So here it is!.... I have mentioned it enough already!.... phase one of my plan of action.... preparing the ground before writing to my Doctor.

This plan has formulated in my mind thanks to comments received through this blog, and acquired knowledge.

Detailed below is the letter I submitted to TPA-UK (Thyroid Patient Advocacy). It has been included on the TPA-UK Yahoo Group forum. 

My name is Robert and I have Hypothyroidism. Please help me with a plan of action for 2011.

First of all I would like to say a big thank you for all the work you do for those of us suffering with Hypothyroidism. It is incredible the work you and your colleagues do at TPA-UK.

I contacted you by email at the end of July for some initial advice. I have joined the TPA-UK forum in Yahoo Groups and subscribed to the automated email digest. There is so much information out there and I look at every digest received. As yet I do not have the confidence to contribute to the forum, in time I hope this will change and I can play a more active role in the TPA-UK community.

You mentioned that you had read my blog, I hope you find it “enjoyable” and will continue to follow my story. Since that first email I have finished documenting my treatment to date and continue to update the blog with day to day details of my struggle to get well. I have received too many comments to my blog that mention adrenals and T3 for it to be a coincidence.

So I need a plan of action.

I am not well and I struggle to manage the day to day details of my life, let alone exploring treatment options to find the way forward. Despite this, during 2010, I have continued to make slow progress towards formulating a plan of action. This is where I hope you can help me. I need to set out a step by step plan to follow, and not move on to the next step until the current one has been completed. One thing I have managed to retain throughout all of this is my patience so I will have no problem sticking to a strict plan of action. After all if I follow a plan, and it is successful, my general well-being and quality of life will surely improve over the next 12 months.

As you will know from my blog, I was diagnosed with Hypothyroidism in 2002, and since that time have been treated with synthetic T4 levothyroxine. I have been on my current dose of 125mcg for 6 weeks now, so I am still in the adjusting phase, it seems to take me forever to adjust to a new dose.

The problem I have is that it would appear my only option for the future is to “go it alone” and self medicate, which really is a last resort! Before doing this I intend to write a detailed letter to my Doctor outlining my findings and my intentions for my future treatment. This will include numerous appendices that I have acquired in my quest for answers, many in fact from the TPA website. I will ask my Doctor to reply, and if the treatment I ask for is not to be given, the reasons for this in writing. I want to have my Doctor on my side more than I seem able to verbalise, but if this is not possible then I really will have no option other than to “go it alone”.

There is a pattern emerging in my quest to get well: a problem that needs to be overcome results in new, seemingly insurmountable, problems being uncovered. The problem created as a consequence of my long-term ill health is that my finances are as poorly as me. I “live” at the mercy of the Welfare Benefits system. There is no way I can afford to pay for medication/tests or to be treated privately. Are there any charities out there that help people like me? I am extremely worried that my quality of life will be determined by my Doctor's reluctance to explore treatment options that are “outside the box”.

I think I have a clear picture in my mind of my treatment options but I am struggling to formulate a concise plan of action. Can you please help me with this. I will be forever thankful if you could advise me what action I need to take and in what order. If I can provide this information to my Doctor then perhaps I will have a chance. I will detail below what I think I need to do.

• Have an adrenal function test. I think I have “adrenal insufficiency”.
• Have a ReverseT3 blood test to determine if I am converting T4 into T3 efficiently.
• Is it possible to determine whether I am allergic to synthetic T4 tablets?

How do I get my Doctor to agree that these tests are absolutely crucial to my future treatment? Then, once the above tests have been completed and the results assessed I can move on to the next step: my treatment options, and which one is right for me.

• Treating “adrenal insufficiency” if necessary. I have no idea what this involves.
• Treatment with hypo-allergenic synthetic T4 and how to get my Doctor to prescribe this medication, or,
• Supplementing my synthetic T4 with synthetic T3. I need to know how to determine the correct dosage of T4 and T3, or,
• Treatment with synthetic T3 only. What dosage is required, when to take, and how to get my Doctor to prescribe this medication, or,
• Treatment with Natural Desiccated Thyroid (NDT?). What dosage is required and how to get my Doctor to prescribe this medication.
• Any other supplements that will help me live with Hypothyroidism.

It's hard to believe I'm sure, but this letter has taken me more than two weeks to write! I am experiencing a prolonged period of “brain fog” whilst my body is adjusting to the new dosage of synthetic T4, lucky me! I hope this letter demonstrates my determination to get better and illustrates the amount of thought I have given to the issue of my health, and is not too muddled!

I am gradually beginning to accept that my life with Hypothyroidism is going to be a lifelong journey with many battles along the way. I have also learnt that my life and health can be so much better than it is now. This is down to the online support community I have encountered. All in all I am further ahead at the end of 2010 than I was at the beginning, this can only be seen as progress, and I am thankful for that!

It is my hope, that with your help, 2011 can be the most significant year to date in my journey through life with Hypothyroidism.

My very best wishes, Robert.

I have already received a reply from my very own "guardian angel" at TPA-UK.... the very next day!.... incredible!.... with great advice and knowledge shared.... this was appreciated so very much.... thank you.

During the next week I hope to prepare a letter for my Doctor.... which I will post on this blog.... hopefully you will be able to follow this process with me.... and continue to be a part of my journey and share in my.... joy.... success.... frustration.... and.... whisper it.... progress towards a better quality of life!

Do I dare to dream?

Bad days, really bad days....

.... who's counting?.... that's right.... the one with the extremist personality.... me!

Jesus!.... It's been more than a week since I was last able to post....

The last couple of weeks have been like a constant kick in the balls!

It's still the "brain fog" episode....

I am living up to my billing in that I feel extremely cretinous at the moment.... since discovering the true meaning of the word cretin a few weeks ago it has provided me with much needed laughter.... what this says about my sense of humour is anybody's guess.... perhaps it's steeped in my instincts for self-deprecating humour as a defence mechanism.... you know, poke fun at myself before others do, which started at the same time as the first symptoms of Hypothyroidism began to appear in me as a child.... dramatic weight gain and delayed puberty.... wow!.... I do way too much thinking!!!!.... eureka!!!!

If, like me, you have Hypothyroidism that is not being effectively treated you will be familiar with the following scenario.... you only realise how good the bad days are when you are having a run of really bad days!

At least on bad days I am able to cling onto glimmers of hope.... even if it is false hope.... see my Groundhog Day post....

On really bad days success is measured by the "simple" things.... like getting out of bed.... making sure I drink enough fluids.... and taking my medication.... that is supposed to make this all go away and make me feel human again..... aaaaaaaarrrrgggghhhh!!!!

.... oh what folly!

I'm laughing so hard that tears are running down my face.... metaphorically.... the tragedy is they are real.... the ones that I only let you.... my dear dear readers see.

But what have I learnt on this interminable journey?.... that's right.... the really bad days eventually pass to be replaced by the blessing that is bad days.... now bad days I can handle....

When this "brain fog" has lifted I will post about my plan of action.... which is swirling about in the labyrinth of my mind.... when will the fun and frolics ever end?.... what's that?.... never?.... you better believe it!

As a footnote.... I have encountered a few more brave souls who have been courageous enough to share their story, the story that is incredibly personal to them, with those of us in the know.... you know who you are.... and I salute you.

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

Still feeling cretinous....

This ain't gonna be straight forward is it?

My battle with Hypothyroidism that is.

The penny has dropped.

I will be fighting the good fight for whatever time I have left.

The more I look.

The more I find.

Problems to overcome.

I thought it was just a question of patience.

That I would find the right dose for me.

So there was a perception of certainty.

As patience, I have plenty.

The sound of the penny dropping is deafening!

In the midst of this fog my creativity is fragmented.

I only catch glimpses.

But never enough to hold onto.

I follow forums from the shadows.

Not daring to be seen.

Let alone heard.

In this mood the pity is overwhelming.

Not a place to send a postcard from.

It's all I can do to put the kettle on.

But no answers to be found at the bottom of my teacup.

At least it's not a bottle hey!

That really would be a sorry day.

But this is good for me.

This blog you see.

Not from the fog like me.

I need to sleep that deep restful sleep.

But that ain't gonna happen.

On the bright side, I got 99 problems.

But a bitch ain't one!

You having that Jay-Z?

Even you couldn't be me!

The prospect of sleep taunts my days.

Then deserts my nights.

My eyes are glazed.

My brain short circuiting.

This Hypo shit, it's hurting!

If it ain't one thing it's another.

When I'm on it mentally, physically I struggle.

When physically at it.

Mentally I'm with the fairies.

That may sound dreamy.

Permanent day dreaming.

Are you kidding me?

How do I verbalise to society?

That this is my world.

Not a day or two, or even a week.

But my everything.

It is all I can do to tread water.

Plans for progress are left on the back burner.

Haunting me, taunting me.

Come on, let me be.

I am sick of this journey.

I want to arrive at my destination....

The Fog.... of the brain variety....

I am just 4 weeks into a change in dosage of my T4 only synthetic thyroxine medication; 125mcg per day down from 137.5mcg per day.

This is the game the Endocrinologist wants me to play.... so until I have the strength and energy to progress my plan of action I will continue to play the game in my usual obedient manner!

I digress.... the reason for this post is to announce to the world that I am now enmeshed in brain fog.... yippee!!!!.... I know that in time it will pass.... but all the same it never fails to be anything less than very frustrating!

So my thought processes, concentration levels and accessing the genius(....lol!) part of my brain, are all restricted..... I know.... you'd never of noticed if I hadn't brought it to your attention!

So I spent a little time Googling for poetry about fog and found the following poem.... which anyone who has experienced The Fog.... of the brain variety.... will be familiar with.... enjoy....


The Fog by Andrew D Robertson


Oh fog! Oh fog!
What do I see?
Nothing! Nothing!
I can't even see me!

Oh fog! Oh fog!
Why are you so mean?
Go away! Go away!
Just let me be me!

Oh fog! Oh fog!
What can I say?
You've painted this morning
A thick shade of grey.

Oh fog! Oh fog!
What can I do?
I'm goin' on home,
But I'll walk with you.


Will you continue to walk with me?

Fat or Skinny?....

.... latte.... my mind has been percolating!

A dangerous thing for me to do!?.... Thankfully I'm feeling dangerous today!

The coffee reference was of course a metaphor which I will now explain....

I have been leaning towards a full fat, caffeine loaded, blog post variety, thus far in my journey. This is largely due to my extremist personality! If I am going to post it has to be substantial and all that. Now this worked perfectly whilst I was documenting my story so far.... but that has now been completed and what am I left with?

An appetite for skinny lattes! Fat free, caffeine free, taste free and joyless!.... Do not fear, I aim to buck the trend and still compile pithy blog posts whilst continuing to update you on my progress with my battle with Hypothyroidism.

I have much thinking to do on the Hypothyroidism front.... I am in the process of forming my strategy for battle and if I'm honest the real action is likely to start in 2011.... but I must prepare diligently.... one of my favourite mantras coming right up.... fail to prepare.... prepare to fail!!!!

I have no intention of failing, my friends!.... there will still be updates with details of my preparations.... panic over people.... would I ever desert my post?

For crying out loud Robert!.... spit it out!.... ok.... I hope to update this blog with posts in the future that express more of my personality and observations.... fear not.... believe me.... there is more personality to come!

The fact that I can confront my extremist personality and even poke fun at it is a sign of the progress I have made on this journey.... and I have my adoring public.... that's you!.... to thank for this.... so I say thank you.... tongue firmly in cheek!

I intend to stick by another favourite mantra of mine.... quality, not quantity!.... I'll do my best anyway!

So in keeping with the spirit of brevity.... that's all for now.... adios

It's official....

.... wait for it.... I am a.... cretin!

In my dictionary the definition for cretin is thus.... "person afflicted with physical and mental retardation caused by thyroid deficiency".... I did not know that!

Who knew?.... all those times growing up, when my mates and I, we would call each other; cretin, retard, spastic.... and much worse besides.... as a way of taking the piss.... they were actually bang on the money with me!

Please understand this was always done in a light-hearted manner.... can insults ever be light-hearted?.... obviously a rhetorical question..... but back in the 70's that's how we rolled!

Anyway, I'm gonna sing it loud and proud....


I.... AM.... A.... CRETIN!!!!


I know, I know.... tell me something I don't know....

Heartache....

....one of the many weird and wonderful symptoms of Hypothyroidism has paid me a visit!

Costochondritis no less!.... thanks Mary!

wikipedia.org/wiki/Costochondritis

This is inflammation of the rib cartilage to you and me. And you'll just have to trust me on this.... it is very painful.... and until diagnosis just a little disconcerting. You see, the pain I experience is in the upper left side of my chest.... directly over the heart!

What with me being a worrier and not a warrior I thought a shit-storm was approaching.... it turns out I was just pissing into the wind!

Unpleasant?.... Yes!
A heart attack?.... No!

The nurse at my Doctor's Surgery gave me an ecg.... electrocardiogram.... which was ok, and checked my blood pressure.... which was slightly high, but better than when taken at the hospital a couple of weeks ago.

So to sum up, I have ended up feeling relieved.... but still in intermittent pain.... enough to wake me up during sleep.... which is over-rated! The only course of action is time.... aided by Ibuprofen.... an anti-inflammatory pain relief.

Thinking about it.... there could still be a shit-storm on the horizon.... the report from my appointment with the endocrinologist!.... surely a masterpiece!!!!

Ahhh.... that's better.... equilibrium has been restored.... I do have something to worry about!

When will it end?

Will it ever end?

How will it end?

What is it?....

Trust me, this is funny....

.... I've just been re-reading the gumph on International Thyroid Awareness Week 2010.... now I hope you're sitting comfortably because I am so embarrassed.... it is not this week but was actually the week from 24th to 30th May 2010.... d'oh!!!!

Let me explain....

I saw on t'internet that it was UK Thyroid Awareness Week and then just got carried away "researching".... oh go on then.... Googling, between you and me!!!!

I made the huge leap of faith and connected the two! Do I feel silly?.... yes, very!!!!

I try to be careful because of "brain fog" but I failed on this occasion.... but still, no excuse!

I hope this illustrates a point.... now work with me here.... I was not aware of any awareness weeks or months to be honest and I've looked into hypothyroidism support quite a bit.... we need to adopt the American Thyroid Awareness Month which is every January, and re-brand it as "World Thyroid Awareness Month" for January 2011.

There is no room for ego in the arena of patient advocacy.... they give themselves to the cause for the greater good.... they are selfless.... and I for one applaud them.

Too many "shop fronts" on the internet are confusing.... especially with the lovely "brain fog".... or if you are new to thyroid "issues".... or if you are simply intellectually challenged like me!.... yes I can laugh at myself!!!!.... so you can too!!!!

The suffering you read about and I myself have experienced really is not funny.... how many millions of people are needlessly suffering?

My journey has been many things.... but it has made me determined to use it for the good of others.... and by association, me.... if I am given the chance.

I we all pull in the same direction and work as a team we can achieve palpable results....

....or maybe I'm just deluded?

International Thyroid Awareness Week 2010....

This perfectly illustrates the frustration of so many of us with thyroid "issues"!

Did you know this week was International Thyroid Awareness Week?.... No?.... Nor did I!

Well it is!.... Apparently!

Please follow the link.... International Thyroid Awareness Week 2010

Now in my humble opinion it is not perfect.... it is funded by the pharmaceuticals industry.... but as "they" say.... there is no such thing as bad publicity!

Only when public awareness has been achieved can we then take our position within it. Until that day arrives how can I preach that it does not fit with those of us for whom synthetic T4 only treatment does not work!

The pharmaceuticals industry is quite happy for thyroid "issues" to stay on the back burner and only pay lip service to the issue with campaigns such as this.... the status quo is good for them.... the gravy train keeps on running unhindered.

If the pharmaceuticals industry were serious about raising the profile they would make sure the supporting literature to this campaign was available in every doctors surgery up and down the land.

I only stumbled across this campaign because of my obsessiveness.... which is a by product of.... wait for it.... are you ready?.... ok then.... one.... two.... three.... my extremist personality!!!!

Never forget my beloved extremist personality! My coping mechanism for the twenty years I was undiagnosed and the years since diagnosis.

As always please form your own opinions by following the link to the International Thyroid Awareness Week 2010 

I concede that for someone new to thyroid "issues" there is much to be positive about. It just doesn't cut it with this particular cynic with an.... extremist.... personality!!!!

Oh, come on! I need a laugh today....

Conspiracy theory....

....I've had a eureka moment. For those of you who enjoy a good old fashioned conspiracy theory I have a real doozy for you....

It goes by the name of.... protecting the self serving interests of the pharmaceuticals industry....

Let me get the disclaimer in first.... it is not my intention to undermine depression, as you all know I suffered (there is no other word!) a nervous breakdown in the year 2000, amid all the euphoria of the dawn of a new millennium.... don't worry, the irony is not lost on me!

The seeds of this eureka moment were sewn during my digestion of the events surrounding my appointment with the endocrinologist. You see, after a while, he began to sound like a parrot! He kept repeating verbatim; "it is not recommended by the British Thyroid Association (BTA)" as if there was NO other possible road to travel.

Being the smart arse I am I looked at the BTA website http://www.british-thyroid-association.org/  and the penny dropped!

Under the ambiguous tab of "Meeting Sponsorship" http://www.british-thyroid-association.org/Sponsorship/  all became clear! As well as welcoming "corporate membership at the discretion of the BTA committee" ....a nice way of of putting it!.... the following companies are listed....

• Genzyme http://www.genzyme.com  "one of the world's leading biotechnology companies".
• RSR Ltd. http://www.rsrltd.com  "a major developer and manufacturer of medical diagnostics with particular emphasis on autoimmune thyroid disease".
• Pfizer http://www.pfizer.co.uk  "as one of the world's leading pharmaceutical companies, we are at the cutting edge of the research and development of medicines".
• Novo Nordisk http://www.novonordisk.co.uk "has the broadest diabetes product portfolio in the industry"

So it is safe to say that the BTA exists thanks to the support it gets from the pharmaceuticals industry.

And the BTA advises endocrinologists on how to treat hypothyroidism.

Excuse my ignorance here a moment but I assumed (dangerous thing to do!) that the all official sounding BTA was some sort of Department of Health backed "quango" not, I repeat, not the puppet of the pharmaceuticals industry.

How could I have been so stupid?.... I have been reborn into the light!.... my customary over-zealous statement for dramatic effect.... but you get the picture this artist is painting!

So of course I should expect the greatest battle of my life to get the treatment I need! D'oh!!!!

I may surprise you here.... I have a certain amount of sympathy for the endocrinologist whose hands are tied by the frontman (BTA) for the multi-national pharmaceuticals industry behemoth! Surely when you pursue a career in medicine it is to help people by using all the resources available to you, including your intellect, and not to become a eunuch to protect the harem of some faceless figure in the shadows.

Maybe I'm just incredibly naive or extremely cynical.... I just do not know anymore....

Is the filthy dollar really that important?.... I'm thinking aloud here.... does it supersede the health of human beings?.... is it more important than the life of a human being?

Yes is the answer it would seem!

But mostly I feel sorry for me!.... us!.... all of us suffering with hypothyroidism.... and even more so those struggling for diagnosis!.... being force fed synthetic T4 and or anti-depressants to line the pockets of.... the pharmaceuticals industry.... their shareholders.... the bankers and hedge fund managers.... the pension fund managers.... until they end up having the nerve to say "do you have a private/occupational pension?.... yes?.... then it is your fault too!".... fuck off!!!!.... how dare you!!!!

I only want my basic human rights to be respected.... is that really too much to ask?

Now, before a hitman is sent to put me out of my misery, I know that the pharmaceuticals industry does great work and performs miracles (there is no other word for it!) every single day!

But faced with the evidence, and thousands of patient testimonies, can we please have some perspective, some give and take.... it is not a sign of weakness to admit that you are not right all of the time.... in fact it is a sign of strength, self-confidence and power!.... that's what I tell myself anyway!

I implore a multi-national pharmaceuticals company to stick their head above the parapet and admit that for some patients combined T4/T3 therapy gets the best results. Also recommend that the physician and the patient must be encouraged to work together as a team without the fear of reproach on the part of the patient.

I am not trying to be difficult.... I just want to be well!.... I am not an animal.... I am a human being!

The results of so much research material are already out there in cyberspace and just because I am able to access it and form my own opinion do not judge me!.... It is so arrogant and disrespectful to do so!.... Is it so unbelievable that I may have the intellectual ability to research and process information and form an educated opinion?

Exactly!

Now, I have said before how much I respect health professionals for the dedication and ability it takes to study and qualify to practice medicine. Please offer me the same courtesy.... respect.... we do not have to agree on everything.... but once all the facts have been considered please allow me one thing.... the freedom of choice.

Treatment must be influenced by results and by not disregarding the particular results you do not like. Many people are happy with their treatment on T4 only, but equally, many are not. Please listen to all voices.

There is room in the treatment of hypothyroidism for all options.... T4 only.... T3 only.... combined synthetic T4/T3.... combined natural T4/T3.... and other treatments I myself am not yet aware of.

A question.... what percentage of people with depression would you expect to have hypothyroidism as the underlying cause?

The first signs I noticed that something was wrong with me were mild depressive feelings in my twenties that I visited my doctor about. I remember thinking.... does everybody find life this difficult.... the getting out of bed.... constantly feeling exhausted.... if only I knew then what I know now!

The first thing I would like a doctor to do when faced with a patient who is clearly depressed, after offering support and expressing sympathy for the awfulness of the situation, is schedule a comprehensive range of blood tests to determine if hypothyroidism is lurking in the wings. If it is not then traditional treatment options will have to be explored.... if hypothyroidism is unmasked then reassure the patient that the most precious thing in their possession.... their life.... will get better.

From my own research and my own experience it is not unfeasible to make the connection between the power of the pharmaceutical industry, their influence, and my struggle to get treatment that is contrary to their guidelines.

Think about how much money is involved in the treatment of mental illness every single year.... pharmaceuticals industry; medication, research and development, marketing.... billions of dollars.... treatment and therapy, public and private.... another bottomless pit.... billions of dollars.... worldwide this could total trillions, every single year!

So even a small shift away to correctly diagnosed hypothyroidism, where the optimal treatment is something other than T4, would represent billions of dollars every year. I'm not expecting it in my lifetime but the figures I give could just be the tip of the iceberg!

How many more lives must be lost to depression and untreated hypothyroidism before the media and the world at large sits up and takes notice? There is a story here.... let's bust it wide open!

Who wants to be a hero? Take it and run with it....

The answer to unlocking this Pandora's Box can be found in a most unlikely ally.... the media!!!!

That's right, the media!!!! In this 24/7/365 21st century world we live in, in the western world (I hate that term!), the media is all powerful.... the media has a huge ego.... the media is king....

I am lucky.... I know what is wrong with me.... many are not so lucky.... all I ask is that I am helped to get better.... and that those poor lost souls awaiting an accurate diagnosis can be freed from purgatory....

I learnt a new swear word today....

endocrinologist.... easy for you to say!

I have waited more than seven years for this day to arrive.... did it disappoint?.... you know it!

Seriously!.... I think I am in shock!

What am I on about?.... Allow me to explain....

Today I attended my first ever appointment with an endocrinologist at the local hospital. Those of you who follow my musings regularly will realise that travelling the ten miles to the hospital was an achievement in itself!

Despite being a pessimist at heart I left home for the hospital full of optimism as the best case scenario could represent a massive step forward in my quest for a better quality of life. I should have known better!

Everything I have learned about the suffering of other thyroid patients and their experiences with endocrinologists came to fruition in a bizarre, almost comical, caricature. It would have been hilarious if it was not so tragic! I can picture the appointment now, it is still so fresh in my mind, looking down on it as if having an out of body experience!

I have to see the funny side and accept that it is just another hurdle for me to overcome.

I am stunned!

Listed below, using my beloved bullet points, are the results of my appointment;

• He refused to even consider treating me with T3, either synthetic or natural. I even offered to sign a letter of consent so that I, and I alone, would be responsible for the outcome of treatment with T3.
• He was not aware that a pharmaceutical company in the UK even produced synthetic T3 (Goldshield Pharmaceuticals: Liothyronine Sodium BP 20mcg Tablets).
• When I asked about the possibility of natural thyroid treatment I was told this would be a dangerous and unreliable route to take. This is because the pharmaceutical companies who produce it have absolutely no quality control procedures and as a result it contains dangerous impurities and is a unreliable product! I was not aware of this! I am of course being sarcastic! Does it look good on me?
• He did not see any value and was not prepared to undertake the blood tests I requested; Total T4, Total T3, Reverse T3 and T3 Resin Uptake (T7). My doctor told me that I would have to request these "fancy" blood tests when I saw the endocrinologist. So that worked out!
• He reviewed all of my blood test results (2003-2010), including those when diagnosed, and concluded that although my thyroid is not functioning properly, none of them were far enough outside the reference ranges to cause concern. I shit you not! He told me if it was he who saw me in 2003 he would not even have prescribed T4 as my bloods were not far enough out of range! He does however want me to continue with synthetic T4 treatment, keeping my TSH between 1.0 and 2.0! I'm not sure, and I'll have to check my dictionary, but I think this is called a contradiction!
• I've saved the best 'til last. His piece de resistance was to tell me that all of the symptoms I am experiencing have nothing to do with my thyroid or the treatment of my thyroid!!!!

He is going to include in his report to my Doctor that I should go to the gym and exercise more! I have asked him to put in writing the little gems outlined above.... he said it will be in his report and that he'll copy it to me.

Where do I go from here? Seriously, where do I go from here!!??

Who is my Doctor going to believe?.... The endocrinologist?.... Or me?.... There may be trouble ahead....

Every request I made for help today was dismissed out of hand.... I am surprisingly calm about this at the moment.... it has just reinforced my view that it is me against the world.... with the help and support of my secret weapon.... the "Thyroid Patient Community".

If I believe what I have been told today that makes the Patient Advocates I have encountered nothing more than a bunch of deluded narcissists. I respect, trust and believe those same Patient Advocates so it offends me that they have been rubbished today!

My experience with the endocrinologist today contradicts everything I have learned and everything my head and heart is telling me!

The endocrinologist wants to see me again in six months time.... that's something to look forward to!

I really wanted to explore the possibility of supplementing my treatment with synthetic T3 with the blessing of my Doctor, working together as a team, but this now seems increasingly unlikely. Going it alone will be a last resort.... so I have much thinking to do....

Welcome to my world!

Is it any wonder that my glass is always half empty?

Bob says he has had one of his best days ever!!!!

The greatest trick the Devil ever pulled was convincing the world he didn't exist....

DearThyroid; my letter....

DearThyroid is a wonderful website and is a patient led resource for all things thyroid. The DearThyroid brand also supports interactive Facebook pages. I wholeheartedly recommend DearThyroid and suggest you check it out if you have not already;

http://dearthyroid.org/

http://www.facebook.com/dearthyroid

The original premise of the DearThyroid website was for people with a thyroid condition to have somewhere to let off steam and share their experiences with other like-minded people by writing a "DearThyroid" letter without fear of being judged. It has evolved into so much more.

When I first started my blogging odyssey and contacted Mary J. Shomon about my venture she suggested that I may be interested in "sharing" with the DearThyroid community. I am proud to announce that I have written my first DearThyroid letter and that it has been published on their website, see link below;

http://dearthyroid.org/why-hes-hes-hes-hypoman/

I found it to be a profoundly cathartic process which has helped regenerate my desire to get well.

Please feel free to check it out.

I'll be in touch again soon.

Weight on my mind....

You all know by now that I am a whining whinger! I also hope by now you realise when I'm serious and when I'm trying to be more light-hearted...... so here goes......

Weight gain is an issue for this alpha male as much as it is for the ladies out there...... it really gets on my tits!...... yes, before you ask, I do have rather a nice pair...... if a little hairy...... oh come on! Laugh with me!

To recap...... I am a big boy! 6 feet, 3 inches tall. A 52 inch chest and a 40 inch waist! And I weigh 280+ pounds. I do not know exactly how much I weigh because I have no scales.

Even if Hypothyroidism had not gatecrashed my life I would still be a big boy...... I am of a large build with a barrel chest (thanks Dad!). My dream tale of the tape would be a 46 inch chest with a 36 inch waist and tipping the scales at 210 pounds...... I did say "my dream"!

Getting clothes that fit me...... difficult! Getting clothes that I like that fit me...... damn near impossible!

Now the real reason for this information...... the sizing of clothes!!!!

Is it really too much to expect in the 21st century for clothes manufacturers to work together so that a 2xl is a 2xl and a 3xl is a 3xl and a size 10 shoe is a size 10 shoe!...... Come on!!!!

I feel like Jim Carrey's character in Dumb&Dumber "whoo hoo! We landed on the moon!"

Seriously! We have put man on the moon!!!!

I can pick up a 'phone here in England, hit some numbers on the keypad, and I get to speak to my friends in Australia!!!! Even better...... using Skype I get to have a video call with them...... in real time!!!! If I think about it too much it blows my mind!!!!

It is not rocket science, or brain surgery for that matter...... add your own metaphor here......

I do not give a shit if it would mean I was sized as 5xl so long as clothes that I bought labelled as a 5xl were a 5xl!...... or am I crazy?...... hang on, don't answer that!...... but you get me, right?

The European Parliament spend millions of pounds worrying about things like the shape of cucumbers, funny shaped carrots...... I could go on...... implying that we the consumers are idiots!!!!

"They" do not fool me!!!!

Am I missing something so blatantly obvious that it will take my breath away if it was explained to me? Or, as I suspect, are the people who decide these things at clothing manufacturers a bunch of idiots?

Why do "they" have to make life so difficult? It is perhaps only a small thing...... but surely in the 21st century it is possible to regulate clothes sizing...... "they" keep telling us that the world is a smaller place.

You would think "they" wanted the consumers to be happy to maximise profits......

Will "they" listen? They haven't so far so it is not likely is it?

Aaaarrrrgggghhhh!!!!

Hands up if you want to come and live in my Utopia?...... a place where people listen to you...... and everything makes sense...... to me at least!

Moving on, an observation I have made during my treatment for Hypothyroidism...... two statements, both true, but opposites......

• When I am under-treated (Hypo) or was undiagnosed I put on weight. This is because my body's functions have slowed down, I have no energy for life let alone exercise. I seem to go into "starvation" mode and store fat!

• When I have been over-medicated (Hyper) I put on weight. This is because my body's functions are all fired up, including my appetite, but I am such a nervous wreck I can not leave the house. I am always hungry and become gluttonous!

Just another of the ironies of living with Hypothyroidism...... this is known as Morton's fork (check it out on Wikipedia!)...... the joke wears thin at times...... so much so there is even irony in that statement!

I am going to mention something that many of us with Hypothyroidism feel......

• I eat a fairly healthy diet. Also......
• I drink at least two litres of water every day, plus tea and 1 or 2 cans of Diet Coke/Pepsi.
• I try to control my caffeine intake and limit it in the evening.
• I try to limit processed sugars. Excessive processed sugars equal fat!
• I try to limit "bad" fats.
• I try to eat good fats regularly.
• I try to eat 5 portions of fruit/vegetables each day. I love veg!
• I take a supplement containing Omega-3 fish oil plus vitamins D and E.
• I snack on walnuts and almonds most days.
• I have a sweet tooth and my weakness is chocolate! I have a small amount most days.

If you knew nothing about Hypothyroidism and read this you would expect to see someone of a healthy weight, would you not?

Hence the ridicule we suffer! Health professionals and even family and friends roll their eyes...... or do I imagine this?

It is not enough to feel like shit...... I have to look like shit as well! I find it incredulous that anyone would think I would choose to live this way! I don't like using the word hate...... but here goes...... I hate being fat!!!!

On a positive note...... if (when!) I ever get my treatment right I will be ahead of the game. I have been eating what I consider to be a fairly healthy diet for years, I do not drink any alcohol and I have stopped smoking.

All I ask for now is refreshing sleep and a body that can tolerate exercise......

...... I can live with the extremist personality...... never forget the extremist personality...... it is always there on my shoulder......

I'm off to McDonald's......

Autumn/Winter & The Holidays....

Autumn/Fall; here's the thing....

It is no good me trying to deny it; Autumn is rapidly approaching. Before Hypothyroidism it was one of my favourite times of the year......

Now Autumn invariably finds me in a melancholy place as I reflect on the past and look to the future. These thoughts are all the more prevalent as I approach another couple of weeks on the "night shift".

You see, the days are getting shorter and the nights longer. This means that I see even less daylight during the "night shift" period...... hence the melancholy...... this is what I have to look forward to between now and next March.

I'm going to sound like the Grinch now...... are you ready...... I do not like the Christmas/New Year holidays...... no that was not a typo, I'll repeat...... I do not like Christmas!...... Now hold on!...... Before you leave this blog in disgust, let me explain......

One, I live on my own and I'm a virtual recluse...... Two, what about family? I hear you cry...... dysfunctional at best...... that subject is for another blog in another lifetime...... Three, my finances do not allow me to buy gifts and I'm a giver not a taker...... Four, I'm a glass half empty kind of guy at the best of times so during this bleak time I dwell on what is missing from my life...... not a pretty picture! Do I really need to go on?

You'll have to trust me on this...... I used to love the holidays, I really did, but that period in my life seems a long time ago. On a more positive note...... I have not given up hope (that word again!) of recapturing the good times...... Anything will be possible if I feel human again......

But for now I will commit the cardinal sin of wishing my life away, as far as January, when I will feel as if I have broken the back of winter. October's not too bad, it's just the period from when the clocks change here in Blighty and it is dark by 5pm...... romantic? ......cosy? ......snuggled up in front of the fire? ......maybe in the future, but for now...... no!

You've got to admit; I'm full of it today......

So, how am I doing right here, right now?...... I've been better, but I've also been a lot lot worse! So that's a positive!

I have been on 137.5mcg of levothyroxine for 49 days now, so things are still settling down...... I need at least 12 weeks before I can make any kind of assessment as to where I'm at. The worst thing...... and I'll never tire of saying this...... is the whole sleep thing (trouble getting to sleep, followed by unrefreshing sleep, followed by trouble waking up)...... now don't get me wrong we're not talking 2005 here but it's still a right royal pain in the arse! Frus...... trat...... ing!!!!

The secondary symptoms are; the aforementioned melancholy, a feeling like "stitch" in my heart, "brain fog", painful feet (in the bones), constipation and bad skin. There are others but they escape me at the moment.

But the real frustrating thing is that I will miss my appointment with the endocrinologist next week because of the "night shift"...... I am seriously pissed off...... I've only been waiting 8+ years...... but at least I can reschedule. Do you know, that is one of the most frustrating things about my battle with hypothyroidism...... I can't make appointments with any degree of certainty that I will be able to make them. And I hate letting people down...... as I imagine it will only give them ammunition to ask the following question......

"Why don't you just set your alarm and get up? Surely you can manage that, it is your life we are talking about here!"...... if that thought entered your head you need to go back and start reading this blog from the beginning! Do you think I have a choice? Do you think I choose to live a "life" this way?...... Yes?...... Then listen to me very carefully...... fuck off!!!!

Like I say, I am feeling so/so. You would not think it if you had just reread the previous few paragraphs...... but hey, that's honesty for you!

On the bright side, I am fully aware that over the coming months I will...... at my own pace...... be getting answers to many questions, which will be a huge step forward. I am confident that I am going to get better...... just how much better I'll just have to wait and see......

This progress will no doubt bring more questions with it...... and I'll just have to get the answers won't I? And with the continued support of The Community, the burden will be shared and the possibilities endless......

The Community provides me with great comfort and if I in turn contribute to it in my own small way then all the better...... come on...... have I been forgiven for not liking Christmas yet?...... Too soon?...... Ok, I can live with that.

I have a feeling that I will look back on this period of my life and realise it was the time when huge progress was made...... a discovery on a par with diagnosis in 2002 and the realisation of over-medication in 2005......

So, looking to the future...... a long dark winter ahead, sprinkled with a few positives and newly acquired knowledge, the element of fear...... the T4/T3 combination therapy, synthetic/natural, doctors approval question(s)!

My finances need life support...... but I've received a positive recommendation about a debt counselling charity...... I must contact them next week!...... as I understand it; they will act as an intermediary between me and the wolves at the door...... thus relieving a bit of the pressure...... things could be worse, not much, but they could be worse!

If Santa really wants to win me back then a month in the sun should do the trick...... I'm not holding my breath!...... oh to spend a month chillin', that's right, chillin' by the pool!

See ya!...... Wouldn't wanna be ya!...... Haha!

I'll be seeing six dots in my sleep...... OCD my arse!!!!

Groundhog Day......

......I keep repeating the same pattern of behaviour and it goes something like this......

Most evenings I have the same thought; "if I feel like this when I wake up tomorrow I will be able to have a productive day".

Sucker!!!!

You see it is in the evening when I feel most human...... mentally I am at my sharpest and physically I feel quite perky.

And I am full of hope......

Then reality kicks in...... why does it have to kick in...... so inconsiderate!

I feel tired so I go to bed...... still thinking...... "if I get to sleep then nirvana awaits me in the morning".

Sucker!!!!

Inevitably getting to sleep is an ordeal...... sometimes I have to get out of bed go downstairs and start the process all over again.

So, finally, I get to sleep...... sweet dreams and all that...... then morning comes......

Groundhog Day!!!!...... I feel like death warmed up......

I make my way downstairs with this deafening racket ringing in my ears......

It is hope's Antichrist...... reality!

SUCKER!!!!

By now it is the middle of the day and I have managed to reboot and I am functioning about as efficiently as my broadband connection...... private joke...... I trust you can work it out!

During this Utopia I am supposed to have the time to concentrate...... yeah, right...... on getting better, acquiring knowledge, and what's it called...... that's right...... living!

Sucker!!!!

Do not despair...... during all of this I have somehow managed to make progress. And anyway during the remainder of the day I continue to warm up...... to the point where on my better days I treat you all to a blog post...... lucky you!

Now who's the sucker!!!!...... oh come on, that has got to be worth a laugh!

The fellow obsessives amongst you will have noticed my penchant for...... dots(?) today...... and each time six of the precious beauties...... and a liberal sprinkling of exclamation marks!

So, as the day draws to a close a thought occurs to me;  "if I feel like this when I wake up tomorrow I will be able to have a productive day"......

Blood test results; August 2010....

As promised....

For those of you interested in the more technical aspects of my battle with hypothyroidism, the results from my blood sample taken in August 2010 are detailed below.

Verbatim....

Serum TSH level: LO. 0.16 mu/L. (0.35 - 5.5).

Serum free T4 level: 22.2 pmol/L (11.5 - 22.7).

Serum free triiodothyronine level: 5.6 pmol/L. (3.5 - 6.5).

Thyroid peroxidase antibody level: HI. 64 U/ml (0 - 60).

I'm glad we've got that straight! Interesting, right!

The first thing to say is that the above sample was taken after I had been taking 150mcg of levothyroxine every day for 238 days, or 38 weeks. Do I need to remind you? I have.... altogether now!.... an extremist personality! So I obsessively take my tablets every day, every day!


Why is nothing straight forward? The fact that stunned me the most was that my "Serum TSH level" was 0.16 mu/L which indicates hyperthyroidism!

The million dollar question? Here goes.... why for 4 years from 2002 to 2005 when I was taking 200mcg per day, every day, were my blood tests coming back as "normal"? Where's Sherlock Holmes when you need him my dear Watson?

The "Serum TSH level" does explain why I have been having more difficulty getting to sleep and waking up. Another million dollar question; why have I not been experiencing the devastating panic/anxiety attacks and heart palpitations?

Do you want my theory? Of course you do....

The only thing that has changed during that time is that I gave up smoking on 13th February 2009! Well done Robert! Why thank you one and all! So, to recap, during the period 2002 to 2005 I was smoking 15-20 cigarettes per day (yuck!) and since February 2009 zero! Well done Robert! Why, once again, thank you one and all! Yes I am pleased with myself!

Does smoking really affect the body's ability to absorb synthetic T4 (levothyroxine) this much? If so the fact that I have stopped smoking is huge! This would mean that I am like two different patients; smoking Robert with hypothyroidism, and quit smoking Robert with hypothyroidism. I have "hypothyroidism schizophrenia" ha ha.... no! I shouldn't laugh!

Enough with the million dollar questions already!

You have to laugh that the more you learn about hypothyroidism the more questions you have! The irony is not lost on me! Even though I now know more I feel like I know less! Does this make any sense?

Now, I'm thinking aloud here.... do the "Serum free T4 level" results suggest anything?....

....is "Serum free triiodothyronine level" the same as "free T3" and do the results suggest anything?....

now this is a biggy.... do the "thyroid peroxidase antibody level" results suggest that I have "Hashimoto's"?

As you can see, many questions have been percolating in my mind since early August.

Another development.... I have my first ever appointment with an Endocrinologist later this month. It has only been more than 8 years people!

Despite the many questions, I feel like a breakthrough is just around the corner.... I've mentioned the importance of hope before.

I am also aware that just because I have an appointment with an Endocrinologist it does not mean I'll get to see one who is sympathetic/understanding/open-minded etc.

Oh, before I forget.... ok, I forgot!.... I am now taking 137.5mcg levothyroxine per day so my body (and mind!) is still in the adjusting period.... but I am still here.... and that is to be celebrated, right?

I think that is enough to be going on with....

Treatment 2008 to August 2010; patience of a saint....

Hello everybody. I am back on terra firma with my own laptop in my own home! Yippee!

To mark this auspicious occasion I am about to complete the last instalment of my treatment history. I would be lying if I said I was insouciant about this as the last part of my "story" does not contain the extremes of the period 2002 to 2007. No bad thing for me at the time believe me! This period in my life was more a marathon than a sprint; the tortoise and the hare if you will, and continues to be to this day.

Anyway, as you will recall, during the period 2006 and 2007 I was "chasing nirvana" and at the beginning of 2008 I was at a loss as to why this had not been achieved. I came to the conclusion that I was not being patient enough and would have to stay on the same dose for longer than 12 weeks.

Basically at the start of 2008 all I knew for certain was that a daily dose of 200mcg of levothyroxine resulted in me having the symptoms of hyperthyroidism even though my blood tests indicated I was "normal". I decided, with the agreement of my Doctor, to start again on a dose of 125mcg but to give my body much more time to reach an optimal level.

The problem I have always had since being treated for hypothyroidism is that not all of my symptoms are constant over a period of time so I have never known if the dose I was taking had reached it's optimal level. Perhaps now is as good a time as any to list those symptoms I experience constantly and those that only show their face arbitrarily.

My constant symptoms of hypothyroidism;

• unrefreshing sleep
• "brain fog"
• poor concentration
• poor memory (disclaimer; I hope these lists are complete)
• little or no energy
• no sex drive
• painful lumps under the skin that take forever to heal and leave scarring

My arbitrary symptoms of hypothyroidism (August 2010);

• irregular bowel movements (80% of the time constipated)
• trouble getting to sleep and waking up (75% of the time)
• sinus infection (50% of the time)
• depression, depressive thoughts (20% of the time)
• obsessive, obsessive thoughts (20% of the time)
• breathing difficulties, struggle to catch a full breath (10% of the time)
• pain in the bones of my; feet, ankles, knees and even hips (10% of the time)
• feeling really sleepy all day (10% of the time)
• gritty/sticky eyes (10% of the time)
• heart palpitations (5% of the time)
• anxiety/panic attacks (5% of the time)

Then there are the symptoms of hypothyroidism that I do not see or feel.... I really do not like thinking about that!

As you can see, life at casa Robert is one big party! Ha ha ha!

Since the beginning of 2008 I have only been on three doses of levothyroxine; 125mcg, 137.5mcg and 150mcg. I was on each of these doses for more than 40 weeks! Even after this length of time my symptoms did not settle down. I would experience false dawn after false dawn. Short periods of time without many of the arbitrary symptoms above would be followed by periods of nearly all of them. My thyroid gland seems to be unable (or unwilling!) to process levothyroxine consistently day after day. Frustrating!

All the while the practicalities of my life have been deteriorating;

• relationships with family and friends
• contract of employment terminated (August 2003)
• finances reached critical point
• forced to perform like a dancing bear to receive welfare benefits
• my home and garden desperately need some TLC, as do I! Here's hoping!

Ooops! I seem to have fallen in love with bullet points! No more, I promise!

The one thing I have managed to keep hold of is.... hope! 

What is there without hope? Realising I was on too much medication in late 2005 gave me hope (as did the ensuing glimpse of normality). Stumbling across the beautiful Mary J. Shomon and her book renewed my hope. Finding the courage to start this blog, and the response from you for taking the time to read it, fills my heart with hope!

I seem to have been blessed with the patience of a saint.... not literally, but you get the point.... and this gives me? Yes! You've guessed it; hope!

You might remember that before my forced hiatus from this blog due to technical problems I had had a blood test and was awaiting the results. Remember? Good. I will provide details of this in my next post. The media have a name or phrase for this but it escapes me at the moment.... a "teaser" will have to do.

I would like to put on record again my appreciation for the comments I receive; they mean the world to me, and renew my strength and.... wait for it.... hope! Thank you and goodnight.

I am still here....

....but I am still offline!

Just when I think I am making progress events conspire against me.

A broken laptop and an insurance claim is not a match made in heaven.

I was just beginning to feel that I had started to establish this blog. Your continued patience is greatly appreciated.

I am really frustrated with not being able to post regularly.... sorry everyone.

I'll be back....

Ooops, I had an accident....

.... I have managed to break my laptop, clumsy me. I somehow managed to get tangled up in the various cables whilst getting out of my chair and I went down like a ton of bricks along with my laptop and various other furniture items. My left knee conveniently landed right on the laptop screen and it is no more.

If a tree falls in a forest, with no witness to it, did it still make a noise? In my case, yes! The air was littered with my vast repertoire of beautiful profanities and expletives. I have woken today with a sore knee and the unenviable prospect of dealing with the consequences of said broken laptop.

I have insurance, have contacted them, and set the wheels in motion. I am not a happy bunny! It will take two weeks minimum to sort out.

"Where are you posting this from" I hear you cry!

Well, good question. As you know already; I am a recluse. So picture the scene if you will of me using a computer in the public library, with the sweat pouring off my brow, just to keep this blog up to date.

I am serious about maintaining this blog into the future.

I will try to post again from the library but do not expect the same standard of literary genius I have been spoiling you with thus far! Ha ha ha!

If you are frustrated with this arrangement by all means consider spending a day walking in my shoes.... I thought not! Ha ha ha!

Doctor's tomorrow for blood test results.... exactly!

Mahler's Symphony No.5; 4th Mvt "Adagietto"

....I just had to share this with you.

I listened to the BBC Proms last night from the Royal Albert Hall, London, where Mahler's Symphony No.5 was performed.

I hope the above link to the 4th movement "adagietto" works. It is a truly wonderful piece of music performed beautifully.

Sit in your favourite chair, turn out the light or close your eyes and be spirited away to a place that only exists in our dreams.

Enjoy.

Drum roll please....

....why thank you one and all!

The reason for the drama queen moment is this; I went to see my Doctor today! This is a very big deal for me so I'll say it again; I went to see my Doctor today!

The reason this is such a big deal is that I am a recluse! I find it very difficult to leave the house for positive situations, so to go to see my doctor filled with trepidation is huge! And I did it!

This was Friday morning. I had been up since 1am (night shift) so at 8.30am I decided to call my Doctor's surgery to see if I could get an appointment. Strike while the iron is hot, take the bull by the horns, you get the picture.

My Doctor could see me at 9am, bonus! This was the best possible outcome as it did not give me time to work myself up into an anguished state or worse still the dreaded panic attack! So, all good so far.

I had already prepared a list of questions I wanted to ask and had Mary's book tucked under my arm like a comfort blanket. So off to battle I went.

I think my Doctor could sense that I was in a bit of a mess and did not try to rush me out of the office. I was in the arena of battle for at least 45 minutes, amazing!

Now, do not by fooled! I am nowhere near as eloquent in the flesh as I am in this blog, ha ha ha!

But I covered all the bases and told my Doctor that I was struggling to cope and was near to breaking point. It all got a bit teary at times, me, not the Doctor! But the gravity of the situation was communicated eventually, how effectively I am not sure. I even managed to get a laugh, it went something like this;

Me: "Doctor my digestive transit is about 4 days from top to bottom and this continual constipation is unpleasant."
Doctor: "Oh, that's not very nice. We'll have to see what we can do about that."
Me: "Thank you. So I guess you could say I'm full of shit."
Doctor: "Ha ha ha."

Those of you who have followed this blog know that I was only making a statement of fact! Anyway I have been prescribed Movicol for the foreseeable future.

We also played an amiable game of catch (or hot potato) around the subject of depression. My view; I am not depressed but my thyroid issues result in a poor quality of life. You know I have had a nervous breakdown in the past and I know what depression feels like. I am under extreme mental pressure from many angles but that does not mean I am depressed. Doctor's view; depression, hypothyroidism, hypothyroidism, depression, chicken, egg. Go figure!

The surgery was quiet due to school holidays so my Doctor managed to arrange for me to have a blood sample taken by the nurse there and then. This was very much appreciated as it avoided the need to go home and repeat the process of leaving the house! So I was on a roll!

I have a problem with blood samples being taken; I have "deep veins" apparently so hitting oil can be a bit of an ordeal. In the past I have had to go back another day after a butcher had 12, yes twelve, unsuccessful attempts at getting blood. Someone was smiling on me yesterday as the nurse struck pay dirt first time! I kid you not!

So overwhelmed was I by my experience exceeding my expectations that I have forgotten exactly what my blood tests are for. TSH, T4, T3 and something else, along with kidney and liver function tests I think. Anyway, an appointment has been made to discuss these results next Wednesday, so we will see what is what then.

My Doctor has also agreed to refer me to an endocrinologist at the local hospital. To discuss "fancy" blood tests and T3. Happy with that as I had only been asking for more than 5 years!

Overall a positive outcome. Could it have gone any better? Yes. But disaster was avoided and progress has been made towards taking control of my health.

Friday was a good day.

I am thankful for that much.

Flip side to "I have a dream"....

I do not have a sunny disposition today!

All my energy is spent trying to keep a roof over my head.

I have no energy left to concentrate on getting well.

Will the system only be happy when I am broken?

What then?

Is this how it was meant to be?

I have not had a day off in over ten years.

I certainly have had no holiday.

I do not remember the last time I did something for me.

I am exhausted.

I have no energy to get well!

Do I carry on? Should I carry on? Will I carry on?

Feeling sorry for myself.

Why can't I?

I've been dealt a shitty hand!

Being told I'm not the only one does not help.

Allow me this much.

I have no outlet for my anger.

I am angry.

There is no one here to see the tears.

Were they shed? Did they fall?

When I am all alone.

I have been starved of affection.

I am an affectionate guy.

To be held in the arms of another....

A dream to dream.

Too honest?

Or not honest enough.

aaaarrrrgggghhhh!!!!

Life is to be shared, right?

Why is it not like the movies.

I am a worrier not a warrior.

More's the pity.

I'm a giver not a taker.

What more can I give?

I'm a talker not a fighter.

I have nothing left to say?

What else is there to say....

Today.

Back from the brink....

....of extinction?

When you have been poorly for as long as I have would it surprise you to learn that I find the prospect of getting "well" a little scary?

I have been witness to too many false dawns.

The reason I mention this is that the talk of adrenal fatigue and supplementing my T4 with T3 has got me, among other things; excited, hopeful, frightened, terrified, optimistic, tearful, daring to dream and seeing the possibility of an improved quality of life.

This is shaping up to be as big a discovery as realising I was displaying symptoms of hyperthyroidism in December 2005! Those who follow this blog (thank you, thank you, thank you) will know what a significant moment that was!

It's times like these; ooh, ooh, Foo Fighters song! Chorus:

It's times like these you learn to live again 
It's times like these you give and give again 
It's times like these you learn to love again 
It's times like these time and time again 


How appropriate! Good tune!


Anyway, as I was saying, it's times like these that I wish I lived next door to Mary. (Whether Mary would think this is such a good idea is another matter! Ha, ha, ha!) Then I could go round, have a civilised cup of tea and a chat. I am new to this "virtual" world so my etiquette might leave a little bit to be desired. So many questions, so little time!

I have to go to the well one more time!

I must be fully prepared when I next go to see my doctor. Fail to prepare, prepare to fail! Why am I such a pessimist? I might make my little speech and my doctor respond; "you know what Robert? I was thinking the same thing. Let's get on top of this once and for all and get you well!" Yeah, right!

That crashing sound you just heard was me falling off my chair in the doctor's office!

I am expecting a less than positive response and that is making the prospect of my next appointment a little daunting. My assertiveness abandoned the sinking ship many moons ago! Along with confidence and positivity!

The reality of my next appointment will be somewhere in between I am sure. Unfortunately my current and future doctors are paying for the sins of the family doctor I had had since I was born and who laughed in my face!

The irony is that I am also paying the price! Ain't that just a kick in the balls!

Anyway, I'm on night shift at the moment (awake at night, asleep during the day) so it will probably be the week after next before I can get to see my doctor, It's not like I have any thinking to do is it?

All in all this blogging game has been a huge positive!

Thank you, Robert.

Let It Be....

I love the Beatles and I love the song Let It Be. It is a beautiful song and I find it incredibly moving. Get yourself a copy and enjoy the song.

Whenever I listen to this song now I think of Mary J. Shomon and how selfless she has been to the thyroid community and all because she wants us to have that most basic of human rights; a quality of life.

I know it is perhaps a literal step too far but "Mother Mary" is what I feel Mary is to the thyroid community. I am blessed to have found Mary twice in my life; first in print and then in the "virtual" world.

Perhaps the lyrics are uniquely personal to me and the influence Mary has had on my life during the darkest of times, if so I am the lucky one. Please read the lyrics below....

Mary, I dedicate this song to you....


Let It Be
Songwriters: Lennon, John Winston; McCartney, James Paul;

When I find myself in times of trouble
Mother Mary comes to me
Speaking words of wisdom, let it be

And in my hour of darkness
She is standing right in front of me
Speaking words of wisdom, let it be

Let it be, let it be
Let it be, let it be
Whisper words of wisdom
Let it be

And when the brokenhearted people
Living in the world agree
There will be an answer, let it be

For though they may be parted
There is still a chance that they will see
There will be an answer, let it be

Let it be, let it be
Let it be, let it be
Yeah, there will be an answer let it be

Let it be, let it be
Let it be, let it be
Whisper words of wisdom
Let it be

Let it be, let it be
Let it be, yeah, let it be
Whisper words of wisdom
Let it be

And when the night is cloudy
There is still a light that shines on me
Shine on until tomorrow, let it be

I wake up to the sound of music
Mother Mary comes to me
Speaking words of wisdom, let it be

Yeah, let it be, let it be
Let it be, yeah, let it be
There will be an answer, let it be

Let it be, let it be
Let it be, yeah, let it be
Whisper words of wisdom
Let it be

Lennon and McCartney; there are no words....

Treatment 2006 & 2007; chasing nirvana....

This post picks up after the "my moment of clarity" post. My darkest days were behind me but that was by no means the end of the story....

Less than two weeks after stopping my 200mcg daily dose of thyroxine "cold turkey" (do not do this!) something very strange happened. I began to feel better than I had since I was a child!

Obviously at some point in the process of the thyroxine leaving my system the planets aligned or something and everything was in equilibrium! I need not of worried as this period of nirvana (I miss you Kurt!) only lasted about a week!

The funniest thing that happened during this week was experiencing a sex drive for the only time in my life so far! And no, I have not given up on it one day returning, ha ha ha! I was like a horny teenage boy walking around with a loaded gun in his pocket!

But this was not the best of it, honestly! Do you know what was? And here I hope I have sympathy from the ladies! I was experiencing the unfamiliar sensation of falling asleep soundly shortly after going to bed and waking up refreshed, yes refreshed, the next day, along with the surprising but not unpleasant "morning glory"!

I can only explain it like this; refreshing sleep is a necessity whereas a sex drive is a luxury item! If I had to chose just one, and I take this very seriously, I would chose refreshing sleep every time. I felt great! Anyone who has spent the last twenty years of their life with their quality of sleep gradually deteriorating will back me up on this.

Reading this back I just want to make one thing clear; even without a sex drive the equipment is fully functioning! Sex drive is different to desire. Please excuse the alpha male moment!

I hope this demonstrates how debilitating the repeatedly poor quality "sleep" was. Any men out there will realise how serious the situation was, and still is!

To get your dirty minds back on track; my bowels also functioned like a dream for this one week only! Normally I would make more of a song and dance about this but taking into consideration the aforementioned you could only tell to look at me by the innocent grin on my face!

Basically I felt tip top! But it didn't last. And I've been chasing this nirvana ever since!

After a month of no thyroxine, the symptoms returned, and I had a blood test that confirmed I still had hypothyroidism. So I was back to square one!

It was around this time that my friends suggested I research a little bit about hypothyroidism on the internet, and offered to help me on their computer at home. They are two very special people and I'm blessed to have them in my life and honoured to call them my friends. Love you!

This was to prove to be the single biggest moment in my fight with hypothyroidism; education, education, education! So important I said it three times!

Remember at this point I knew less than nothing about hypothyroidism. In fact if I knew I knew nothing I would have been ahead of the game!

The first significant information I came across was a hypothyroidism patient resources guide on the American Thyroid Association website. The extract below changed my life, it was like opening the curtains on a sunny day and the light flooding in!

American Thyroid Association ٠ Hypothyroidism ٠ Page 18

Side effects and complications of treatment


The only dangers of thyroxine are caused by taking too little or too much. If you take too little, your hypothyroidism will continue. If you take too much, you’ll develop the symptoms of hyperthyroidism—an overactive thyroid gland. The most common symptoms of too much thyroid hormone are fatigue but an inability to sleep, greater appetite, nervousness, shakiness, feeling hot when other people are cold, and trouble exercising because of weak muscles, shortness of breath, and a racing, skipping heart. Hyperthyroidism can also cause changes that you can’t feel, like bone loss (osteoporosis) and irregular heart beat.


This was written evidence that 200mcg of thyroxine a day was causing me to have symptoms of hyperthyroidism. And had been for 4 years! I still do not know if my heart has been damaged or I have suffered any bone loss. How did my doctor not know this? I was always honest with how I felt but was told I was a "difficult patient"!

Anyway, I made a decision, I would change doctor! It was now the beginning of 2006.

I also made a decision that I would need access to the internet at home to continue my research. I bought a basic laptop, which I still use today, and arranged an internet connection. I went without to make this happen but I had to do it.

When I started to research hypothyroidism properly at home I came across my guardian angel in the form of Mary J. Shomon and her book Living Well With Hypothyroidism.

In my humble opinion it is the most informative, inspiring, uplifting, optimistic and hopeful book on the topic of hypothyroidism! I have always believed in quality over quantity and Mary's book would be the one book I would recommend to someone who has just been diagnosed with hypothyroidism.

Mary's book is never far away and is always to hand. Just recently I have been paying it more attention as my confidence has slowly been improving and keeping this blog has raised many questions. In particular adrenal fatigue and T3. Anyway I looked up adrenal fatigue and was rereading it as if for the first time! Please remember (excuse the pun!) that poor memory is one of the most common symptoms of hypothyroidism and most days mine is like a sieve! My point is, the list of symptoms could not of been written better by myself as a way of describing how I feel, except for "premenstrual syndrome", although I'm sure if someone explained it to me I suffer from that as well! Joking ladies!

In all seriousness I have a renewed respect for women who experience their unique symptoms on top of those of hypothyroidism. How do you do it?

Anyway I started 2006 with a new doctor, an angel on my shoulder, and on a new dose of thyroxine; 125mcg. Over the next two years I spent twelve weeks on each of the following doses; 125, 137.5, 150, 162.5, 175, 187.5, back to 162.5 then 150 then 125mcg. Every dose I was in the "normal" range! This took just over two years to the beginning of 2008 and all the while chasing nirvana!

I still had all the symptoms of hypothyroidism that I'd always had except not as serious as during the period 2002 to the end of 2005. I was making progress but it was bloody slow! And I was a long long way from being what a "normal" person would call well!

The importance of Mary's book during this period and the thyroid forums on About.com were immeasurable. Mary did not know it, and all of those contributors on the thyroid forums did not know it, but I gained the strength I needed to get through the tough times from these sources. I know there are many forums and websites out there but during 2006 and 2007 I could only cope with a limited number of sources of information.

As I have got a little bit stronger I have had the confidence to begin to embrace the thyroid support community in all it's guises. I wish I could hug you all!

Next time I will cover the period 2008 to the present day. I am sailing on calmer waters but still have to weather storms along the way.

I hope this post was worth the wait, sorry about that. I was caught in a storm.

This blog is for you as much as it is for me. Let it go and laugh and cry with me and let us heal together.

It has been emotional, again, Robert.