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.