How did I get Graves?

In some respects, this is a dumbass question.  After all, it doesn’t change anything.  It’s here – I’ve got it…for life.

Most of the literature talks about three separate theories.  Because no one really knows.  They can be quite complex to understand but in summary…

Theory one.  It’s genetic…a silent marker sits on you DNA waiting to be activated at a time of it’s choosing.  And if there is a history of auto-immune disease in your family, you have a greater chance of getting an auto-immune disease (and not necessarily the same one your family member has).

Theory two.  Some kind of cell reaction occurs as a result of an infection, setting off the chain of events that manifests as Graves disease.

Theory three.  An extremely stressful event leads to a severe physiological reaction i.e. Graves.

Based on these three simplistic interpretations of the possible causes (and there may be many more), well I had no chance at all.

Genetics.  My mother, grandmother and two aunts have all had complete thyroidectomies.  None were diagnosed with Graves or any other auto-immune disease but possibly this is due to lack of appropriate medical attention early in the piece (not uncommon for people living a poor, rural life).  A first cousin also on that side was diagnosed with Graves nearly the same time as me.  On the other side of the family, my father was diagnosed with the auto-immune disease, sarcoidosis, 15+ years ago.

An infection.  About 4 years ago, I developed a seriously bad case of pharyngitis.  Thats tonsilitis, without the tonsils (snipped out when I was 5).  The infection was so bad, I had to take two full courses of antibiotics (something I would normally do anything to avoid) and moaned through two painful weeks spent in bed.  I’d never been so sick before, and never since.  More than 12 months later I was having trouble with sore throats and was constantly losing my voice.  I went to see an ENT specialist who told me my vocal chords were still inflamed and my throat muscles were overcompensating, causing the voice loss.  It was a shock for someone who had years of vocal training behind them (I was a vocal major in a music degree) to end up in speech therapy.

Extreme stress.  About three years ago, and after 13 years of remission, my sister suffered a cancer relapse.  After ten years, Doctors consider you ‘cured’ from cancer and so we all thought that episode was done with.  So it was a big shock to get the call from my mother, that my sister was in hospital because she’d collapsed at work because of a previously undetected, 15 centimetre tumour sitting between her chest wall and her left lung.   Then of course the shock of her urgent surgery (lung removed along with a significant chunk of her rib cage), waiting for pathology (malignant), seeing her lying unconscious while the respirator moved her body up and down in such an artificial, mechanical manner.  Observing the awful months of chemo and scans and waiting for results.  Feeling helpless and guilty, all while trying to hide our grown up fears in front of her kids.  Dealing with morons at work or in life who think you care about their petty day to day complaints.

So yeah…genetics, infection and stress.  I think I’ve got those covered.  I’m thinking about this tonight because yet again, my sister is back in hospital.  They don’t think it’s cancer.  They think she has a collection of fluid around her kidney and spleen causing intense pain and nausea.  It’s almost certainly because of the surgery she had a few months ago (which was for cancer).  It’ll need to be aspirated one way or another.  Seriously, she can’t catch a break.

So I’ve got Graves and I don’t really know how.  But I don’t have cancer.

The thrill of lawn maintenance

Not something that would normally float my boat but…

If you’ve read some previous posts then you know that this Graves ‘thingy’ has badly affected my muscle strength.  I’m two weeks in to a supervised training programme including weights training and while it’s early days, I’m remembering how good it is to feel fit and strong and looking forward to achieving some goals.

Yesterday I decided to re-attempt trimming the lawn.  The last time, I could barely lift the machine thingy…but this time managed to give the lawn a nice little hair cut, all within about ten minutes (it’s only a small patch) and without once having to stop in agony.  Afterwards, I went for a forty minute hike to and from the supermarket, carrying two heavy-ish bags home with me, up and down hills etc.  Ordinarily I would drive 2 minutes to get a litre of milk!  Now, my arms are a little sore today, but in that “I feel like I did something good” kind of way.  And last night I slept like a baby sans any kind of chemical aid…something I almost never do especially on a Sunday night.

I have been a little bad this week in terms of regularly taking my neomercazole.  I guess this is the danger in feeling better…without being overly symptomatic its easy to forget those two little pills every morning.  As I understand it, neomercazole (carbimazole) has a fairly long ‘hanging around time’ in the body so hopefully the odd inadvertant day off schedule is no big disaster?

Sticking to a fairly strict nutritional plan most of the time (more protein, less carbs, eat more often) but no apparent weight loss yet.   If things don’t start to shift soon I guess I may have to redefine what most of the time means, to all of the time (and even when I’m not ‘on plan’ I’m quite cautious).  The seasons are changing and nothing fits so hopefully I’ll start to see some improvement before I have to go buy a whole new wardrobe!  I love shopping but it’s not that satisfying when you have to keep going up sizes!

Recommended Links?

I’ve started to add some links to sites about Graves that I think are worth visiting.  If anyone has others to recommend, including other blogs you like, please drop me a comment.  R xo

Another year older and hopefully a little bit wiser

So here I am finishing off my birthday weekend.  Even though I started my new fitness and eating plan this week, I did negotiate with my trainer to have this first weekend off.  Yes I’ve eaten too much, drunk too much…and generally feel like a blob…an older blob.  Anyway, there is always tomorrow.

I’m reminded of my birthday last year when my then boyfriend took me to a beautiful little French restaurant.  He brought flowers and we drank champagne.  It really was the most perfect ‘date’ I ever had.

Things went wrong between us not too long after that.  We had some stupid fights that didn’t seem to have either a beginning or an end and I felt him little by little pulling away from the relationship.  He’d come from a quiet, polite family who don’t express themselves, so he really hated any kind of conflict.  But even up until the last moments he swore everything was ok, but when it came down to it, things couldn’t be saved and we went from romantic nights at the little French bistro, to not being able to be in the same room together, in a matter of weeks if not days.

Now I don’t think that Graves was what finished us off as there were plenty of other mitigating factors, but I certainly know it contributed.  Of course at the time we had no idea.  I definitely was having bad headaches, trouble sleeping and what we thought was a lot of anxiety.  My friends kept telling me to dump him because obviously the relationship was causing that…or so it seemed.  The week we split up was when the doctor prescribed anxiety medication for me….seemed like a reasonable assumption that I’d be anxious in those circumstances.  It didn’t occur to her or to me, to test my thyroid.

In some ways I’m glad he wasn’t around then because my symptoms certainly got worse before they got better and at the end of the day, I don’t think he had the stamina or the understanding to help me through the cranky days (weeks?) and the frustration.  It was almost better I think to be alone so neither did I have to consider him (selfish?  yes I guess so).  We don’t even talk any more.

So this birthday I’m very, very single.  Of course I’ve got great friends and a wonderful family but sometimes it would be nice to have a stronger set of arms around the house…I can think of all sorts of uses (jam jars, lawn trimming…).

Anyway…I guess the one thing I’ve learned after this year is to never take your health for granted.  At the end of the day, it really is all you’ve got.

Oh my aching bones….

The only symptom worth getting and I didn’t get it

I’m talking about ‘unexplained weight loss’.  And I’m only being slightly facetious.

Instead, I’ve had weight gain.  40lbs of it.   And the explanation is pretty clear.  I’ve been eating as if it were an Olympic sport and I’m the gold medal hope of a nation.  And not just eating, but eating food I previously didn’t consider to be actual food.  Like frozen crumbed chicken (not eaten until 30+ minutes in the oven of course…I’m not that pathetic!) or muffins (which I could never understand as a breakfast food…it’s cake people!).  The sorts of things I would previously have avoided like anything.  And it’s not that I don’t understand nutrition.  In fact I’ve studied physiology and nutrition at College so I’m hardly ignorant about the composition of food.  The endocrinologist did say that with treatment hopefully my appetite would normalise.  I’m just not sure she understands how committed I’ve been to abnormalising that part of my lifestyle and how hard it’s going to be to bring it under control!

When I was given the Graves diagnosis (made all the more complicated by the fact that I was stacking on, not taking off, weight) I think I subconsciously took that as the OK to start shovelling all manner of crap into my mouth.  If I’m sick anyway, and I can’t control it, why bother looking after myself?  And exercise?  Well that wasn’t realistic given the muscular pain, the shortness of breath, the palpitations.  And so I ate, and didn’t move and a few months later I’m bursting out of my clothes whilst people look at me with one eyebrow dubiously raised as I say “No really, my thryoid is too fast”.

I went to a family funeral last month and saw some relatives I haven’t seen in years.  Some may remember that one of my sisters has cancer.  Physically, she’s doing well (mentally has up and down days) and looks pretty good, or at least a lot better than someone with her troubles should look.  We nearly pee’d our pants laughing when we realised everyone at the funeral would be looking at the two of us and muttering “She doesn’t look like she’s got cancer.  And the other one…look at how fat she is….she can’t possibly be hyperthyroid.”  Gotta laugh I suppose.

As of yesterday I’ve committed to the next few months with a personal trainer.  I’ll see her three times a week (2 x light cardio, 1 x weights plus ‘homework’) and she’ll monitor my food intake.  At regular intervals we’ll assess progress.  Even if I don’t lose stacks of weight, hopefully I can regain strength (last night, 5 girlie push ups were all I could manage and this is after years of being able to give 20 or 50 man style push ups no problem) and motivation to have better general health.  I want to turn that heavy ‘blech’ feeling into ‘feeling pretty good’.

My trainer is a petite blond (aren’t they all) with a perky disposition (hey, you can do it!) and she’s so used to pep talking that even her normal conversation sounds like yelling.  I’ve told her about the Graves, told her I’ll complain and moan all the way, but to ignore me for the most part and keep me on the straight and narrow.  It’s not a cheap commitment and I know I’m lucky I can afford this little kickstart.  I see this as an investment into a better future hence why I can justify the expense.

I called my friend about the ‘contest’ and told him I wasn’t weighing in this week (he answered “Oh thank god!  I’ve been a pig!”) but told him about my new commitment.  In order to win a $150 voucher I’m going to spend much, much more than that.  He completely misunderestimates just how competitive I can be!

Has anyone else stacked on the lbs and kgs with Graves?  How did you handle it?

R xo