Tuesday 26 October 2010

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?....

Wednesday 20 October 2010

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....

Friday 15 October 2010

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....

Wednesday 13 October 2010

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....

    Wednesday 6 October 2010

    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.