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.

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.

Numbers

Going to the endocronologist is a little bit like a highbrow game of bingo, and there are only a handful of numbers being played for. But if you get those numbers right then you win….something. Warm fuzzies? It’s funny too how you feel like you, the individual are responsible for achieving certain number, as if you had complete control over your physiology. If the numbers are good, you feel like you’ve achieved something. If they’re not right, you somehow feel like you didn’t work hard enough to get them right. The whole problem of course, of having an auto immune disease is that…you have no control. You wouldn’t sit around with a drip adding poisonous toxins into your own blood stream, or at least a sane person wouldn’t. But essentially thats what Graves is. And the evil genius behind it all are those pesky antibodies. The endo said to me ” I was a bit worried about you because your body wasn’t reacting the way it’s supposed to”. No kidding! But then I’ve always been a little…left of centre.

Finally my T3 is within normal. It’s at the upper end of normal but still….normal. The doc said it might take a month or so for my symptoms to catch up (I still have the odd heart palpitation , breathlessness, muscle weakness etc). She said within a few weeks I should start to find exercise somewhat easier so once I start my new job (next week) I’m going to get a trainer who can help me, especially with strength training. It’s hard to explain how weak I’ve become. I’m as ‘plushy’ as a foam sofa to use a funny phrase from a friend of mine. I used to be one of those people who did boot camps and could happily ‘drop and give me 20 man style push ups (at 8am on Saturday mornings…crazy right?!)…but not any more. Opening jam jars is hard enough! It’ll be tough but I know I feel better when I’m stronger and exercising regularly.

Meds have been reduced from 5 down to 2 carbimazole per day and I’ll stay on that regimen until October when I’ll have my next blood test and consultation (and pending those results, another in January). Apparently they’ll then review me in April next year (12 months into this journey) to see where my antibodies are at and what my chances of still having the disease are, along with potential for relapse (a 50%+ chance).

When I see the relapse numbers there’s a part of me that feels like I’m on a long journey towards a thyroidectomy ( as has my grandmother, my mother and two aunts) but I’m trying to stay positive that I might be the one for whom this rigmarole all works and I can remain surgery free!

Turning around

So lots and lots has happened since my last post.  Almost too much to tell.  But here’s some of it.

My sister has had surgery to remove two malignant tumours.  After a week in hospital, she’s now home, still in remarkable spirits for someone who has been through so much.

With that and a lot of pressure at work, there’s been days I’ve forgotten to take my meds and I’m getting heart palpitations intermittently.  Still much better than before.  I do think I’m beginning to chunk up a bit though.  Could really do without that part.  Guess I will have to be really really careful about eating.  Finding that I still can’t really drink alcohol.  Even two glasses makes me feel quite ill.  And still keeping caffeine consumption low although allowing myself the off cup of tea here and there.  Next blood test is next week.

And today I was offered a new job with great pay, conditions and they seem to be a really cool group of people with a lot of empathy for their staff.  I’m considering things over the weekend but more than likely I’ll accept and be able to put my current job situation behind me.  With a new sense of strength I can see even more clearly that being there in the first place was the wrong move and not just because it coincided with my diagnosis at the height of my symptoms.

I read somewhere this week that the singer, Toni Childs (not my musical cup of tea), suffers with Graves disease and she had a ten year ‘break’ in order to recover.  In the article she said that she had to change her whole life.  It really brought home to me the need to take this disease seriously as the ramifications can be far reaching not just for the sufferer but their friends and family too.

Back to work blues

Back to work in the morning following a sunny weekend spent mostly on the road heading to, then from, my parent’s new house in the country. Chatting with my mother, she told me about a first cousin (who I haven’t seen since childhood) who was also diagnosed with Graves some years ago and she opted not to follow up with any treatment. Nothing at all. I should add she’s also Schizophrenic so I imagine Graves doesn’t seem that big a deal to her. She’s also living in a small redneck village with limited professional medical resources let alone specialists near by. I hope she doesn’t regret her choice later. Tomorrow I’m going for a blood test which will see if the medication is doing anything so far and I’m going to try to convince my sister to go get her blood tested too.

I’m taking an oath here and now not to get too stressed this week…lots of politics and intrigue at the new job…but I am going to try and stay serene and rise above. Good freakin’ luck to me!