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....