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!

Deja vu all over again

New blood test back and a call from my endocronologist. “No change”. I mean…what? Despite increasing the dose from 2 up to 3 x 5mg carbimazole per day…no change. My T3 is still too high and is exactly the same as 6 weeks prior. So the doctor describes me as a puzzle and has asked me to go up to 5 tablets per day. Now most of the time, the dose is decreased…not increased! Can T3 toxicosis be resistant to drug treatment?

Meanwhile, I still get heart palpitations from time to time, but not as often as before. I still have trouble sleeping but always have had. And my muscles are sore and my skin is itchy. I guess I should have anticipated a set back.

Another month, another blood test, and another doctor visit at the end of it. Sheesh!

And also by then, a new job which I’m looking forward to. Hopefully, a change of scene will do some positive things for my health. I mean…c’mon!

And the results are in

Somewhat upsetting as I was hoping to feel better by now. But as the heading says…at least I know I’m not crazy. Certainly it feels like it sometimes.

My T3 level hasn’t come down as expected and my medication has been increased to three a day, rather than two. The endocronologist puts this down to high levels of antithyroid antibodies in my blood, and her assumption that I’m under a lot of stress. Well thats the understatement of the millenium!

She asked me if I was feeling any better and I had to admit ‘not really’ and asked her about the joint and muscular pain especially in my left arm. She replied that yes, this is most likely related and finished with “You have an auto-immune disease.” like that should help me cope with everything. So I spent the rest of the day seconds away from tears, tears of frustration and self pity. I even got caught with a tear in my eye by my assistant but she kindly pretended she didn’t notice.

I’ve decided I need to leave my new job, maybe take a couple of weeks off and then look for some contract work…a low level of responsibility sounds good right now. Will need to chat to the folks in case I run out of cash but right now I feel like I need to prioritise feeling better. Also talking to my old bosses who in general are more sympathetic people (not perfect mind you but at least we all like each other!) and with luck this might be a short term financial solution for when I leave the other job.

Keeping everything croossed for better luck!