DIY Graves treatment?

I wonder about those people who say they’ve ‘cured’ themselves of Graves without any kind of medical or surgical intervention. What do they know that I don’t? Does anyone know?

As I understand it, there is no ‘cure’ for Graves, only treatment and hopefully, remission. I know I can help myself by being careful about things like diet (limit iodine and stimulants) and stress. But I also know that if I’d waited for those things to work, and eschewed medication I’d be in a bad bad way by now. If I was still here at all!

By the time my Graves was diagnosed I’d obviously had it for some time and was ‘highly symptomatic’, even more than my blood work would suggest. My anxiety levels were ruining my life – relationships were difficult, work was a horror. The pain in my muscles (especially my arms and my hands) was indescribable. And of course the heart palpitations were really scary. And I almost never slept. I just can’t imagine wanting to self-treat under those circumstances. Of course when I was diagnosed I read everything I could find on the implications of treatment and not being treated. My conclusion? Bring on the meds for me!

I think the greatest challenge for me in the next couple of months is going to be maintaining a healthier, less stressful lifestyle. It’d be easy to fall back into the trap of being Superwoman again, while I’m feeling so much better.

My new mantra (repeat after me)…”Good enough is ok most of the time.”

“Go home on time” is my other new philosophy.

And so to bed.

Back in the land of the living

Have just finished a week at my new job. And who would have thought it? Everyone has been really nice, really welcoming. No ‘issues’ or ‘attitude’ like the people at my last job. I’m ‘in training’ so haven’t yet been placed under pressure but so far, so good. In fact, in some respects, it feels like they are trying to impress me. Nothing seems too much trouble for them, they’re keen to be social, people laugh in the office etc. My boss is very ‘naughty’ and un-PC (which I appreciate) and his team all seem to have genuine affection for each other. I’m really pleased I accepted the role and looking forward to getting into some ‘real’ work and becoming part of the fabric of the workplace. It feels good.

I’ve not had too many Graves symptoms either this week. A few heart flips perhaps. I was remembering how my left hand used to be in an arthritic type pain almost constantly… that seems to have diminished to almost nothing. I’m sleeping pretty well…even my kitteh was up before me this morning (she’s an odd’un in that she doesn’t wake me and likes to sleep in until 11ish most days). I feel like my mind is more clear and I’m able to just…get stuff done. But…I’ve been really bad at managing my eating and haven’t done any significant exercise at all. Ah well…I’ve made an appointment with a trainer for Monday and told her I need help ‘getting strong’. I wore a mid sized heel this week…first time in ages…and I spent most of the day being completely paranoid because I don’t feel like my knees are being supported by my muscles and I’m terrified of injury. Once I start with weights I should regain some confidence I hope! She’s going to monitor my diet as well. I definitely need someone to help me find motivation as I don’t think I can use Graves much longer as the excuse (feeling too ‘normal’ for that to be true!). A male friend has challenged me to get healthy and lose weight before Christmas (and of course, for men, everything has to be competitive). As I remember it, there’s nothing in the rules that says I can’t hire help! And there’s a $150 voucher at the end of this that I want to win (even though I realise I’m going to spend a LOT more than that on the process but thats not the point…).

This week I learned I’ve been nominated for some industry awards based on some past projects…very cool! I’m not taking it too seriously but it will be fun to dress up for the dinner when they announce the winners later this year. It’s interesting…I did the work in the period when I was suffering the worst symptoms of Graves, although at the time I didn’t know that was what I was experiencing. Here’s hoping that now things are under control, I still have those little flashes of creative genius!

New day, new job

I start my new job in the morning. Perversely, I’m kind of looking forward to it. I’ve enjoyed having two weeks off but I’m not really the type to sit around at home. As I understand things, Graves disease sufferers tend to be a ‘type’. You know…too much to do, too little time. Super women (and men sometimes).

Ah well, must get to bed so I can be fresh as a daisy! Wish me luck!

Ow!

Yesterday I got this sudden burst of energy. I don’t know where it came from. I hadn’t had a day as active as that in…months! So many things I was procrastinating about got done. I finished all my unpacking (having moved 2 months ago). I folded and put away baskets of clothes (although when I employ logic..i.e. if I wear the clothes they’ll end up in the basket eventually anyway so I wonder why we do this chore). I even got out my lawn trimmer and trimmed (you guessed it!) my new lawn. When I first picked up that piece of equipment I thought “Oh thats lighter than I thought”. About 6 minutes of grass slashing and industrial levels of vibration later, I was finding it really hard to keep ahold of the trimmmer. It was all I could do to finish the job. It was hard! My arms felt like lead. When I was done they had no flexibility and took some time before I could really feel anything else. Today…it feels like I’ve been lifting weights in my sleep. I used to be really fit…now I struggle to trim the lawn for 15 minutes without feeling like a cripple the next day. It really highlights how sedentary my life has become since Graves came into my life.

Have just emailed a personal trainer explaining my condition and what I need…strength! I’d also like to get rid of the extra 30lbs I’ve managed to stack on over the past year. I wonder if my metabolism will allow me to do that?

And in the meantime, sitting here, writing this…I can feel my heart doing little flips. I really hope the endo is right when she says I’ll lose that soon! She offered a mild dose of beta blockers but that feels like an extreme measure to me. My blood pressure is on the low side, so I know my heart is ok, even if it rudely intrudes on my thoughts. Feeling that does make me wonder how much I can actually do, exercise wise. I guess I’ll have to start slow, track everything, see how it goes! I don’t expect to ever run marathons, but maybe next time I can trim the lawn without wanting to cut both my arms off the next day!

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!

Another day, another blood test

So home from a long, long day. A day that’s stretched over about 36 hours in fact and involved an overnight stay to see family. Boy is my ‘kitteh’ annoyed! Still, I had left her with about 9 days worth of food, cat milk, water, clean litter…but she did give me a fairly raucous homecoming (she doesn’t meow so much as screech at me) and lots of head butts. I often take her with me but this time my sister had brought along her little yappypants dog (he’s quite sweet but misunderstood) so she had to stay home. They don’t get along.

My next blood test is taken tomorrow. I think this is maybe the 7th (?) since this all began so I’m getting pretty good at it. Then I see the endo early next week. I’d love to see some improvement but in my heart (and in my heart) I suspect that won’t be the case. I’m still experiencing palpitations and shortness of breath on occasion. After many hours on the road today my sister commented that I all of a sudden seemed to deflate and my breathing was almost asthmatic…very wheezy. I think it’s just being over tired, not able to shake this head cold, same old same old….will make sure I get a full look over at the docs.

In the middle of two weeks off (yay!) so keeping my stress levels low and my sanity on track…or as much as possible anyway!