Saturday, 9 June 2012

We Are All Advocates...



Advocacy, in the wider sense of the word, has been on my mind lately... has piqued my interest if you will...

ad-vo-ca-cy n., pl. +cies. active support, especially of a cause.

ad-vo-cate vb. 1. to support or recommend publicly; plead for or speak in favour of. ~n. 2. a person who upholds or defends a cause; supporter. 3. a person who intercedes on behalf of another.

By lending emotional support to others: we are all advocates.
By opening up and being honest about our suffering and triumphs to friends and family (even if this falls on deaf ears): we are all advocates.
By writing, reading, or commenting on blogs: we are all advocates.
By joining, reading, or contributing to facebook pages/support groups: we are all advocates.
By doing our own research, educating ourselves, and increasing self-awareness: we are all advocates.
By hoping for a better treatment outcome, deserving a brighter future: we are all advocates.

You see where I'm going with this...

We are all advocates.

As much as I would never wish my suffering on my worst enemy (OK, a few *winks*) I will be forever grateful that I live in the "internet-age"... I shudder at the thought of what would have become of me if it were not for the world-wide-web, if I think too hard about it the internet still boggles my mind, it beggars belief!

Imagine having to go to the library to find out whether you really were losing your mind. Me? I was able to have my nervous breakdown in the comfort of my own home, and not until nearly six years later did I get a laptop and access to the internet... they really were the lost years (2000-2005 incl.). Then the painfully slow education process could begin, all the while meeting resistance at every turn in the real world... self-doubt was gorging itself by now, with my sanity the prized morsel.

It wasn't until this point that I discovered there were others... cue Pink Floyd, Comfortably Numb...





I may have mentioned before that I do not like to spread myself too thinly (just as well as I'm a fat fucker!) and value quality over quantity. The thing with the internet is that it is so easy to go off at a tangent (rather like this blog post!) and before you know it you are lost and your well intentioned starting point is but a memory... a road we all have to travel at least once...

Anyway, I have settled on what I consider to be reliable and trustworthy sources of information and first-person support: facebook pages/support groups, twitter, other bloggers.

My starting point though is always a good old-fashioned book, the excellent Living Well With Hypothyroidism by Mary J. Shomon. The balance of this book is just right for me.

Mary's other resources:

On facebook: Mary Shomon: Thyroid Patient Advocate, Author. In the last two years the number of "likes" has increased from 4,000 to over 15,000 and counting...
On twitter: @ThyroidMary.
On About.com (Part of The New York Times Company): About.com Thyroid Disease.
Website: thyroid-info.com.
Newsletter: Sticking Out Our Necks.

Mary has been the trailblazer in the world of thyroid patient advocacy since the mid-nineties, can you imagine the path she has travelled? Amazing. The internet has fanned the flames of patient advocacy, nothing more so than social-networking: facebook and twitter in particular. We are a virtual community connected by cyberspace and our numbers are heading in one direction and our voices will be heard.

With this in mind I have been made aware of an online petition by a fellow blogger, a real sweetheart, Sarah Downing of the blog: Butterflies & Phoenixes at SarahJDowning.com. Sarah is a wonderfully talented writer and it is an honour to call her my friend (Butterflies & Phoenixes facebook page).

I know, I know, the petition already!

The petition is titled Endocrinologists: Patients With Thyroid Dysfunction Demand Better Care and is the brainchild of  Michelle Teresa who was joined in this endeavour by Denise Rodriguez and it is their intention to affect change for the greater good of all thyroid patients, now and in the future. I don't mind telling you that such selflessness makes me go weak at the knees! *winks & chuckles*

Please take a couple of minutes to read all about the petition and do not forget to sign it!... remember, together we can affect change.

There is also a facebook support group: Patients With Thyroid Dysfunction Demand Better Care.

The petition is hosted by www.change.org: "Our mission is to build an international network of people empowered to fight for what is right locally, nationally, and globally. We hope you will join us."

If you require further proof that Sarah, Michelle and Denise are not too good to be true please read the interview Sarah conducted with Michelle and Denise on Sarah's blog: Butterflies & Phoenixes.

I can smell revolution in the air... and we are all in it from the beginning... history will be our friend.

We are all advocates. 

It feels appropriate today... never forget... for as long as we have hope we have a chance.

Friday, 1 June 2012

Thinking Aloud (Allowed?)...



So, what's going on?

With me?

Well for starters: I am not being a very good blogger! All the "how to blog" guides tell you to post regularly so that your followers can get in a rhythm. But I am sporadic at best.

There are many reasons (excuses) for this... and they are all on me. But do not worry... the flagellation and self-loathing has been turned up to eleven!

Many of you will know by now that my Borderline Personality Disorder (blog post: Introspection) is a daily struggle for me, and that when I think too much (as if!) it becomes... as if by magic... even more prevalent in my life.

I have been thinking a lot lately.

It is what I do.

It has a name... procrastinating.

I am sorry.

But I am here now.

Anyway, since my last endocrinologist appointment (Endo The Line?) I have begun researching, at my own pace, my options going forward, it goes something like this... and yes, I've been here before...

Do I go down the adrenal fatigue route first?

Or, do I explore the NDT (Nature-Throid) way forward?

Sounds oh so simple, but it throws up LOTS of questions... to which I need to find answers...

I am crippled by indecision.

Eventually I hope to assemble some sort of "thyroid 101" that makes sense to me... yeah right!

So I am going to prepare my own crib notes on the topics I need to get to grips with... and I will share them with you by way of blog posts, with links to the source information where necessary, all right and proper like. Something tangible. This exercise will serve a dual purpose... kill two birds with one stone if you will... as my hypo memory is so poor I find I have to keep re-researching, re-reading, as so little information appears willing to convert itself into acquired knowledge that is happy to make a home for itself, and commit for the long-haul, in my beautiful cranial cavity.

Why didn't I think of this sooner? D'oh!

Fail to prepare, prepare to fail. I do not want to fail. I have heard it said that there are people who would jump on in the deep-end no bother, sink or swim, but I need to dip my toe in the water first. You see, I am terrified of making a mistake that has serious consequences in the long-term.

I am also filled with doubt about everything thyroid.

My belief has been rattled.

Why?

Because not one "health professional" has shown even the remotest interest in my health/wellness/quality of life going forward... they all appear to be following an agenda to which I am not privy but which feeds my wild, self-doubting, imagination. And to make matters worse... my family feed these doubts with their total lack of empathy or support, bordering on a total disinterest, when it comes to my battle for wellness. My brother flat out doesn't care and my mother is of the persuasion that all doctors are above and beyond reproach.

I have been living back home for 8 months now and their attitude towards me breaks my heart.

If I can find the strength to ask for help I can be saved.

I digress, back to the crib notes... the first topic I will cover, and share with you as I think aloud, will be on adrenal fatigue...


Just don't hold your breath *winks*


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

Thursday, 10 May 2012

Endo The Line?...



I made it to my appointment with a new Endocrinologist at a different hospital. Different location, different faces, same old bullshit!

I'm feeling: sad, disappointed, frustrated, incredulous, angry, FUCKING PISSED OFF! Every cell in my body is telling me one thing whilst the health "professionals" are telling me something else.

Maybe I'm wrong and everything I've read and "learnt" is bollocks. Maybe I should just give up, go to that dark place. Maybe...

Maybe not! Do they not know that I am HypoMan?

I. AM. HYPOMAN!

And the fuckers have not got me beat... yet.

I need to retrace my steps to the very beginning and learn and learn and learn... knowledge... power... awareness... a great big "fuck you" to the health professionals who have let me down.

Let me recap for you what happened...

I was up at 5AM so that I would be "awake" enough to leave home at 7:30AM to make it for my 10AM appointment (the traffic to Cambridge during rush-hour can be a real bitch!). I arrived early as planned. I was pleased with myself that I had managed to get there what with the anxiety I felt and my history of panic attacks.

So far so good.

I knew that mentally I was far from my sparkling best but being a first appointment at a new place I thought I would see what they offered, go with the flow, roll with the punches...

First off a nurse performed the usual: height (6feet 2.5inches... where did the half inch go?), weight (127kgs or 280lbs... little by little), blood pressure (lying down and standing OK... can't remember the numbers).

Then the Endocrinologist asked for my medical history, greatest hits only, you know the drill. I thought: fair play, you are taking an interest. Next we went through all the results from the extensive blood work (7 vials) taken last week.

Liver and kidney function: OK. This is a positive as they have been cause for concern in the past.
Glucose (blood sugar): a little high. But I had not been told to fast before bloods so need to get test redone.
Ferretin and iron: OK. Did not get numbers/ranges etc. Need to get details from my GP.
Vitamin B12: OK.
Vitamin D3: a little high, 121 when above 125 is over-treated. Will reduce supplementation from 4,000IU to 3,000IU.

Right, thyroid numbers as at 1st May 2012 on 8ml/160mcg liquid suspension thyroxine (in brackets numbers as at 8th February 2012 on 162.5mcg synthetic levothyroxine):

TSH: 4.4 (0.44) range 0.35 - 5.5. A significant increase in TSH. Only explanation I can think of is the potency of the liquid medication as opposed to the synthetic stuff. Scientific I know. Now you can see how I dazzle any health professional put in front of me. Seriously, I've been feeling off the boil, maybe I need to tweak my medication up to 8.5ml, 170mcg equivalent, see how I go. Thinking.
FT3: 4.8 (5.2) range 3.5 - 6.5. Quite a drop. Needs further investigation.
FT4: 15.4 (17.4) range 10 - 19.8 (11.5 - 22.7). Do not understand if any significance here. Different ranges too, wtf!?

What's going on with my TSH? But get this: Endocrinologist not concerned as "in range" (that old chestnut!) despite previous Endocrinologist insisting a TSH of between 1 and 2 as being optimal. Is it any wonder? Who's on message? Consistency is all I ask.

Dream on.

This next bit is a real doozy... as my thyroid bloods are all within range there is categorically nothing wrong with my thyroid function. My symptoms appear to be due to depression, DEPRESSION! No, no, no, no, no, no, NO!!!!

It was at this point I knew I was fucked!

I  picked myself up off the floor to request a trial of NDT all the while trying to block out the voice in my head laughing at me and my futile attempt to seek the wellness I deserve.

Needless to say: not alot happening on the NDT front... the same old excuses and lies. The 1,700 prescriptions of Armour Thyroid in 2010 (just checked: 2,600 in 2011 a more than 50% increase year on year!) must have been "private prescriptions"... so little respect for me, quite an impression I must have made, that lying to my face took less than 30 minutes!

For once I would like to hear: "oh, that is interesting. I was unaware of that but I will look into it, see what I can do and write to you when I have the information available. After all your health is our priority."

You can stop laughing now.

As something of a compromise the Endocrinologist agreed to discuss my case at the lunchtime team meeting to see if a trial of T3, to supplement my T4, can be agreed upon. A letter would be sent to my GP, who would then contact me, but who is not obliged to follow the recommendation of the Endocrinologist. I can't see it happening, can you? Especially if it is stated that my blood tests show that my thyroid function is normal.

So here I am. That age old battle between good and evil: the Endocrinologist believes it is all in my head: depression. Whereas every fibre of my being is telling me it is physiological.

I was so sad when driving home from the appointment that all I wanted to do was cry... but there are no tears left to fall...


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

Saturday, 31 March 2012

Thyroid Life: Foundations, Building Blocks....



I mentioned in a previous post that I would share my Vitamin and Supplement Regime with you all. That got me thinking.... don't look SO surprised!.... a blog post began to germinate in my mind into something so much more, so here goes....

I have found that my vitamin and supplement regime is one of many building blocks applied to the foundations of my overall well-being. The "foundations" being the optimum treatment of any underlying health conditions. In my case: hypothyroidism as a result of the auto-immune disease Hashimoto's Thyroiditis. Every element is important but if your foundations are not "up to code" I believe you will struggle.... struggle being my given middle name today!

Perhaps this will illustrate things more clearly....


FOUNDATIONS: Optimum Treatment of Underlying Health Conditions.

This for me is an on-going process, more than likely a lifetime commitment. There will no doubt be many more ups and downs along the way.... you think?!?! Now as any builder knows: your foundations are VERY important (like having good cheekbones). Therefore as my foundations prosper the building blocks I place upon them will have the opportunity to flourish and enable me to fulfil my potential (and my heart's desires). However, it is an ever-changing scenario.... no shit?! But would I really want it any other way?!

But there is something nagging away at the back of my mind that needs to be brought front and centre: Adrenal Exhaustion, or is it Adrenal Fatigue? What's in a name anyway?

To continue my building analogy (oh go on admit it, you're loving it!), Adrenal Exhaustion, yes I'm going with Exhaustion, is like the planning permission required before you can even lay foundations.... I think, I know, right?! Don't you just love all the "red-tape"?! It's like a ticker-tape parade in here!

I will give an entire blog post over to my musings on Adrenal Exhaustion and how it affects me.... rock 'n' roll.... you know the drill.... what tests confirm diagnosis, treatment options etc....

So it's looking like I don't have planning permission.... rebel with a cause!


BUILDING BLOCKS 1: Diet and Hydration.

I have learnt that the way I fuel my body impacts significantly on the reality of my overall wellness and my perceived wellness. A crucial part of the jigsaw! I genuinely feel better when eating a healthy diet. Physically and mentally. I eat very little processed food and lots of fresh fruit and vegetables. I love fish (but it's very expensive), in particular shellfish, and meat (ladies, I LOVE roast chicken). This boy could NEVER be a vegetarian! If you haven't worked it out already the way to my heart is through food cooked with love. Then watch me grow (as in as a man, NOT as in putting on weight.... phew!).

I start every day with 3 400ml glasses of bottled water followed by breakfast cereal with semi-skimmed organic milk with a little sugar on top.

During the day I eat at least 2 portions of fruit and sometimes some nuts, and whisper it, sometimes some crisps (potato chips). During the day I typically have 6 mugs of decaffeinated tea, NO sugar.

I have my main meal of the day in the early evening. This normally contains at least 3 portions of vegetables. Followed by 2 more mugs of decaffeinated tea, and if I've been good in the evening I will have a small portion of chocolate.

In late evening, before bed, I will have 2 more 400ml glasses of water.

You will have noticed that I drink as a bare minimum 2 litres of bottled water per day. Why bottled? I live in a hard-water area (limescale), also I had a kidney stone in 1999.... ouch! During my stay in hospital I was advised to drink bottled water. So in my black and white mind it was settled: bottled water from then on (mainly due to the hard-water it must be said).

I try my best to eat my 5-a-day portions of fruit and vegetables. I do this comfortably over the course of a week, especially taking into account my issues with portion control! *winks*

But please remember: one can always find room for a little naughtiness.

Diet and hydration is not as easy to control as one would imagine. Especially when other factors such as food intolerances are taken into consideration, I am intolerant to all wheat so my diet has to be gluten/wheat free. I have read that it may be possible to reintroduce wheat into my diet when my health improves and after a suitable period of abstinence (is any period of abstinence EVER suitable?).

I have amazed myself with how disciplined I have been regarding the wheat-free diet. The benefits of avoiding wheat are far greater in my mind (and body) than the suffering endured when I eat wheat. An example of my Borderline Personality Disorder coming to my rescue for once.

The obligatory money issues are always lurking somewhere in the shadows. Gluten/wheat free = more expensive. Not rocket science but a fact of life. Good nutritious healthy tasty food is more expensive, takes skill, planning, and a little more time to prepare than the cheap processed unhealthy crap so much of society seems to exist on. And I'm the one with health issues?! Therein lies the rub!

In the interest of factual balance I am still 6 feet 3 inches tall and weigh 129kgs at my last weigh in at hospital ( a mere 284 pounds or 20 stone 4lbs in old money). So let's not get ahead of ourselves here: I am a fat fuck! And I have very few days when this does not disgust me!

And after all this you know what I worry about? What a palaver it will be if I ever eat out.... God forbid it ever be on a DATE! Enough, I am sweating already!

BUILDING BLOCKS 2: Vitamins and Supplements.

As mentioned previously it was when writing the blog post on my Vitamin and Supplement Regime that I had the idea for this post. I KNOW!

BUILDING BLOCKS 3: Lifestyle Choices.

*mounts soap-box* Now then: "lifestyle choices". This is a whole new ball game. Different but still equally important when striving for the best possible outcome for one's health. I took my self-flagellation to levels I had previously thought myself incapable of in anticipation of the pontificating sermon I am about to unleash....

Not really, OK, a little bit. The key word in all of this is "choices". We all know that poor ill-informed choices do not result in positive outcomes. To think otherwise, well there's a word for that: denial. I have swam many times in those particular intoxicating futile waters.

Smoking. I am now 3+ years smoke-free. It feels good. But I did start smoking in the first place, with no gun against my head, d'oh!

Choices.

I have to be honest with myself: how could I complain of air-hunger, breathing difficulties, the general deterioration of health, if I still smoked?! Come on! You will find very little sympathy knocking at that door.

How hard is it to give up? Not very if you want to, and I mean really want to. Again my Borderline Personality Disorder (BPD) perhaps helped me here, but I truly believe that if you really want to give up you will.

I read somewhere in some quit smoking literature that after 2 days the body has processed all the shit from your last cigarette. There is no longer a physical dependency. After 2 days all you are left with is the disgusting habit, it is all played out in the head. If you can handle all the bullshit that comes with hypothyroidism you sure as hell can quit smoking.

Choices.

Alcohol. I have not touched alcohol for nearly 10 years. This is my choice. I have never had a "problem" with alcohol and for that I am really thankful. I have just found that since being on medication to treat my hypothyroidism alcohol does not agree with me. The feeling of alcohol in my bloodstream is unnerving (or was that the effect of over-medicating with levothyroxine 2003-2005?) and the days after just a couple of pints were hellish.

For me personally it would be nice to be able to drink alcohol occasionally, and in moderation, in the future. I miss a pint of Guinness: so thick, creamy, and dreamy. I miss an ice cold lager on a hot summer's afternoon/evening at my local pub by the river. A glass of wine over dinner with friends (what friends?!). Hell, I miss having a life!

Choices.

Again there is no denying the negative impact that alcohol can have on one's health. I find people who consume higher than recommended levels of alcohol daily and/or weekly are prone to denial and being hypocritical, especially if they do not smoke. But hey, I'm generalising.

Choices.

There is no denying one thing: hypothyroidism has made me extremely sensitive to everything I consume.

Caffeine-free. I have chosen to minimise the amount of caffeine I consume by going caffeine-free. I understand that the "free" part is not entirely accurate. Caffeine-free teabags do contain some caffeine as does chocolate *pulls face of mock shock horror*

Choices.

I first decided upon my version of caffeine-free to see if it would help alleviate my chronic sleep problems. I think it has helped, I am not "cured", but just how much I am not entirely sure. I read that caffeine places stress on the adrenals. With that in mind I do not even have caffeine-free tea after 7pm.

Are you starting to appreciate how all the little building blocks, on solid foundations, are beginning to take shape? I hadn't fully appreciated it until I deconstructed my lifestyle in search of greater understanding and a few answers, but still quite some way from enlightenment. But boy am I stylin'!

If I was a women my fellow man would no doubt call me "high maintenance"! Translation: I'm more trouble than I'm worth....

Choices *performs aesthetically pleasing dismount from beloved soap-box*

BUILDING BLOCKS 4: Exercise, Flexibility and Breathing.

This particular building block is very much a work in progress, is excruciatingly slow, and has been neglected for far too long.

It worries me.

Exercise. The big problem here is the scar tissue that remains as a result of being over-medicated for nearly 3 years upon diagnosis, when I knew less than nothing about hypothyroidism, and the journey I had unwittingly embarked upon.

Namely over time becoming a recluse as a result of panic attacks. This is difficult. For years I could not leave the house for fear of shitting myself (physically happened more times than I care to or dare remember). Leaving the house was a game of Russian Roulette, only it wasn't a single bullet in a revolver, it was turds in bowels and whether or not they would explode in my pants!

I have been so wrapped up, to varying degrees, in this whole "I'm not well" head-space that physical activity has been the last thing on my mind. Believe it or not it is a sign of significant progress that I am even doing a little exercise right here, right now, in 2012.

I am running errands and generally being more active, I have taken a few very short walks (about 1 mile) and I am building up the courage to walk to the river and back (2+ miles). You'll love this: I have to be extremely careful not to run before I can walk when it comes to exercise. I have a small success and involuntarily my head is full of ideas about what it must feel like to be properly physically fit. I need to learn to savour the little things, each individual triumph.... and not to keep beating myself up for perceived failures on my part! Yeah right, like THAT's gonna happen!

I have cleaned mine and my mother's car, by hand, inside and out, a few times. And yes, I get a sweat on doing this! If I'm going to do a job I have to do it properly.... all or nothing.... black or white.... you get me?

These minor triumphs may appear innocuous but taken collectively they improve my physical and mental well-being. But I still have more than my fair share of shit days where I have no option but to surrender and accept that there is always tomorrow. This is, and always will be, frustrating!

Flexibility and Breathing. For 6+ months now I have been following my own stretching and breathing regime every morning, at intervals during the day, and in the evening before retiring to bed. Now, don't for a minute picture in your head some yoga-like routine!

This is something very gentle that I have devised for myself and where I can see and feel lasting improvements since I started. I can now touch my toes with my hands pressed flat to the floor.... go on I dare you.... picture that in your head.... spectacular!

There are a couple of other stretches I do that have had the added benefit of really toning up my "bingo-wings". Whilst holding the stretch I can really feel the burn through my triceps (back of the upper arm), deltoids (top side of arm/shoulder) and laterals (side of torso from armpit to bottom of ribcage). I was a gym rat in a previous life (actually 6 years from the age of 18-23) with very little progress considering the effort and dedication put in, I hit a wall where I could not improve aerobic fitness, strength, muscle mass or weight loss. With hindsight all the signs were there, crystal clear: I had undiagnosed thyroid disease.

Whilst performing my stretching routine I concentrate on deep breathing, through the stomach, not light chest breathing. You get a much fuller, deeper breath, and I can feel the benefit of 3+ years smoke free.... no coughing and spluttering.... you see.... I managed to mention it one more time.

My aim for this year is to enjoy the countryside on my doorstep. By this I mean progressing so that I can walk to and along the river (it is part of the Ouse Valley Way). I have binoculars and I'm saving to buy a camera, I hope to share my photographs with you.... so that you can see I'm for real! Eventually I'd like to mix my routine up by cycling along the Way on my mountain bike.... baby steps!

This building block is important to me! I can really gauge my progress. I am approaching 41 years of age and I would like my middle years to be my best years yet! I want to feel physically fit and healthy. Something in our youth we take for granted but which I would now cherish dearly. Head up, chest out, spring in my step, smile on my face....

BUILDING BLOCKS 5: Administration.

Administration. Not the most glamorous of building blocks, but do not let that fool you, this is a very important piece of the jigsaw, and when properly attended to, has a hugely positive impact on stress levels. The flip side to this, as I know all to well, is that thing can get away from you. I am beginning to take control of my affairs but have much to do. Don't even go there.

A long time ago, pre nervous breakdown, when I had a career as a respected auditor the day to day admin of life was taken easily, almost nonchalantly, in my stride. It was what I was good at. How the mighty have fallen. It is now a shit-storm, that self-perpetuates, morphing into an almighty stench pervading every waking moment of my life. That's what it feels like much of the time, but not today thankfully. I am facing it little by little but it is a long slog.

I am talking about my perilous financial state. The big things. But once sorted, a load off!

All the while on the periphery of this storm, or is it in the eye? I have even made and kept appointments with my optician and dentist. Optician: OK, but have astigmatism, new bins as a result. Dentist: OK, still no fillings in my mouth, EVER, and a clean and polish.

I have also had blood tests, kept appointments with my endocrinologist at the local hospital and with my doctor at the surgery. Also being on liquid suspension thyroxine (The Liquid Suspension Experiment) necessitates frequent visits to my doctor's surgery to collect my prescription certificate, and from there to the local market town to place prescription with the chemists and then back to the chemists again to collect medication once prescription has been fill. It is all go and I would not have been able to cope just a few months ago.

Never look down on Administration departments, if they fuck up the wheels really do come off! (Not to be confused with Customer Service departments which are no longer fit for purpose in the 21st century!)


CONCLUSION:

You only need look at the above to comprehend what a daunting prospect it is.... my #thyroidlife. And that is before employment can even be considered a possibility, which in turn would allow new exciting friendships to be forged and a life to be lived .

There have been many days, weeks, months.... and even "lost" years.... where it all too often becomes too much to bear and I assume my most comfortable (default) position: "head-in-the-sand". I have to accept that the future will hold many more of these days.... please not weeks, months or years *shudders at the thought*.

It is my intention (hopes and dreams) that this blog will continue to document my struggle with hypothyroidism so that these "episodes" can be kept to a minimum.... all the time sharing my successes and failures with you without fear of judgement and always with heartfelt honesty. It is also my hope that my experiences will provide moral support to other thyroid brothers, sisters, and carers lives.

I need an algorithm to make sense of it all.... or even a flow chart.... sexy!

If you made it this far, thank you.

Please remember that for as long as we have hope we have a chance.

Thursday, 8 March 2012

My Vitabiotics Vitamin and Supplement Regime....

I mentioned previously that I would provide details of my vitamin and supplement regime.... just one piece of the jigsaw.... so here you are....

I have found, through trial and error, that the Vitabiotics range of vitamins and supplements (for men and women) suit me best. They are widely available in the UK, where I find it more convenient to order online, they offer "3 for 2" on all products, plus reward points (that soon add up). This is true of the UK - Worldwide site: Vitabiotics (UK - Worldwide) link to online store

The also have a site for the USA, unfortunately this appears to offer multi-vitamins only: Vitabiotics (USA) link to online store

I am not sponsored by Vitabiotics and I have no affiliation to them. I am just a satisfied customer.

The links provided are to the Vitabiotics website where you can see exactly what each tablet/capsule contains. I hope you find this blog post informative and that it perhaps enables you to compare and contrast.

Please remember that this is what works for me. For example: I tried taking extra vitamin C but whatever brand I used I found they gave me a persistent headache every day without fail.

I have been following this regime for the past six months now....

BREAKFAST: Immediately after breakfast, and before having a hot drink, I take 4 Ultra Vitamin D3 tablets and 1 Ultra B Vitamin Complex tablet with a glass of water. I then wait for another half an hour, enough time for another glass of water, before having my first cup of decaffeinated tea.... PG tips: The Delicate One






MAIN MEAL: After my main meal of the day, and again with a glass of water, I take a Wellman multi-vitamin tablet and it's accompanying omega 3-6-9 oils capsule, plus a slow release Feroglobin capsule. At this time I again have another glass of water and leave it half an hour before having a hot drink.






BEDTIME: This is when I take my thyroid medication. It works best for me at night. Mornings were a total disaster for me.... I became even more of a Zombie.... I never felt like I had woken up.... EVER! It sits well with me that I'm giving my medication the chance to work on me whilst I am sleeping.


CONCLUSION: I generally only have the 2 meals per day. I have become quite regimented in my approach, even more so since I discovered that I am wheat intolerant. This again seems to suit my personality (Borderline Personality Disorder) so I am happy to stick with it for now.... any changes and you'll be the first to know.

Preparing this blog post got me thinking about how my vitamin and supplement regime fits into my whole plan for well-being. Another blog post will follow soon about "Foundations" and "Building Blocks".... I bet you can't wait! *winks & chuckles*


For now, please remember, that for as long as we have hope we have a chance.


Friday, 2 March 2012

The Liquid Suspension Experiment....

I hope this blog post will bring you up to speed with what's been going on with my Doctor and Endocrinologist.

In late 2011 I had an appointment with my Endocrinologist at the local hospital. With what was going on in my life, coupled with the Endo's attitude, it was a routine appointment; dotting the i's and crossing the t's.

I followed this up with a visit to my Doctor where I repeated the whole "I do not feel well and would like the opportunity to try other treatments (including.... whisper it.... Natural Desiccated Thyroid) dance routine".

So I was adhering to the status quo, in a holding pattern if you will. It is my experience that "Health Professionals" rather like this!

So Christmas and New Year came and went.... hello 2012! After bigging up 2011 as "my year" I am reluctant to place any expectations on 2012 other than getting out of it in a better state than I came into it.

It was now early February and I trudged off to my next appointment with the Endocrinologist, expectations low.... just how I like it, in my comfort zone!

We danced our dance whilst I whispered sweet nothings in his ear....

"You, my Doctor, the PCT (Primary "Care" Trust), you all tell me that NDT is not available on the NHS so how come the NHS's ("The Information Centre: for Health and Social Care") own National Statistics  (Prescription Cost Analysis 2010 England) show that there were over 1,700 prescriptions for Armour Thyroid in 2010?"

"I wonder what a lawyer would make of that?"

NHS National Statistics; Prescription Cost Analysis 2010 England. You need to scroll down to page 200 and 201, "BNF: 6. 2. 1. 0. Thyroid Hormones", it is there in black and white, and you'll need your glasses!

AND THEN EVERYTHING CHANGED.

By the end of the appointment the Endocrinologist had referred me to the "Thyroid Clinic" at another regional hospital. He sold it to me by saying it had more blood testing and treatment options. According to my Doctor this was not true (another lie!) he was discharging me from his "care". No bad thing really, for me, it could even be seen as a positive development. He also recommended that my Doctor prescribe "liquid suspension levothyroxine" after my repeated questions regarding it being the fillers in the tablets that could be causing my skin breakouts and possibly other symptoms. This, my Doctor, has agreed to do.

"Hush money".... fucking hilarious! I was not born yesterday!

To recap. I have received notification of my appointment, in early April, with The Thyroid/Endocrine Clinic at the regional university teaching hospital, a far more prestigious hospital than where I've been "treated" 'til now. But, "prestigious" does not guarantee results.... expectations in check.... however my odds on regaining some semblance of well-being have improved. Progress!

Now then, the liquid suspension experiment. My Doctor agreed to prescribe Liquid Suspension Levothyroxine (LSL) for a trial period of 3 months due to the cost of the medication. I'm in! He referred me to the in-house pharmacy at my Doctors Surgery who proceeded to tell me this medication is no longer made. I repeated what Doctor told me but Pharmacy's computer screen was saying "no". Went back to reception to get them to pass this information on to my Doctor, who was now seeing another patient, he spoke to the Pharmacy. Back at the Pharmacy they 'phoned an independent local pharmacy; nothing doing. Was told that I was welcome to visit other pharmacies in the area to see if I could have better luck but that you will not be able to get medication!

You hum it, I'll sing it, I'd heard this song before!

Anyway, so off I popped brandishing my prescription....

The first 2 pharmacies I tried in town could both get the medication for me! I plumped for the more professional outfit, which happened to be Boots, a nationally recognised chain of chemists with an in-house pharmacy. They were kind, courteous and welcoming.... how refreshing!

They explained to me that the medication is made to order, has a shelf-life of 35 days unopened and 14 days once opened, and that it needs to be kept in the fridge.

One 100ml bottle, where 5ml equals 100mcg (so 150mcg equals 7.5ml), will last me 13 days (13 x 7.5 = 97.5). Not just a pretty face me!

I still require my prescription to be issued by my Doctor's in-house pharmacy. I explained to them how a prescription for 2 bottles at a time would be easier so that I would only have to put everyone through the rigmarole every 26 days. This has been agreed.

Did you get all that?

I do believe this will prove to be a step forward, however, I do not expect it to be the answer. I believe that ultimately I will require a medication that contains T3.

I hope I do not come across as ungrateful or too negative. If you have followed my story from the beginning you will understand what a big deal this is!

I am extremely thankful.

More than words.

Enough to make me weep.

The ball is rolling.

Buckle up!

Coming soon; The Liquid Suspension Diary.

You see what hope has gone and done?

"You telling me I have a chance?" - Dumb & Dumber.

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

Thursday, 23 February 2012

Talk of the devil....

Where have I been for five months?

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

Found God?.... yeah, right!

Abducted by aliens?.... more likely.

Fallen in love?.... not yet.

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

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

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

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

What else have I been up to?

This and that.

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

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

My very own Grinch complex.

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

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

I am still following a gluten/wheat free diet.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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