A Freedom Pass … With Restrictions

jailAlemtuzumab treatment gave me my life back – three times over – but also left me with Grave’s Disease.

It was a one in three chance, and you guessed it, I got it. Natch.

So for the last eighteen months, I’ve been oscillating wildly between an over- and under-active thyroid. Mostly under-active.

I’ve been on tablets and off tablets, ended up in A&E for beta-blockers, had blood tests every month, lost weight, gained weight, gained some more weight, and then some more.

In short, it’s been a gruelling time. It’s not much fun being a blob with an ever-expanding waistline, despite eating well and having a fairly active lifestyle when MS allows me to; I gained weight so rapidly I hardly recognised myself in the mirror, when I could bear to even look in one. My wardrobe shrank as my waistline expanded, leaving me skulking around in baggy t-shirts and slumped shoulders.

So it was with trepidation and anticipation that I saw the endocrinologist a week ago. Every time I go, they weigh me first. And every time I beg the nurse not to tell me my weight, preferring to look up at the ceiling and try not to cry. She normally consoles me with, ‘well, I’d never have thought you were that heavy, bless you’.

I met the doctor and ran through the usual questions. Yup, I’m a blob. Nope, I don’t have as much energy as before. Yup, I’m hungry all the time. She sighed, shuffled through my notes for quite a while then said, ‘It seems it has to come out.’

At last, a solution. It won’t get better, it won’t change and there may be more Alemtuzumab treatments in the future. I leaned forward in my plastic chair, eager to hear more.

‘So you have two options. Radiation or operation.’

‘Ok. I can deal with that (inwardly panicking). What happens next?’

‘You come off the tablets. You probably go into a thyroid relapse.’

‘Er …’


‘Er …’

I cast my mind back to the last time I was taken off the tablets – wondrous, fantasmical times of boundless energy and infinite well-being, the weight literally sloughing off me. Until I crashed.

There’s no other way. The tablets aren’t working. So, I’m four days into not taking them, and so far, so excellent. My joint pain has disappeared completely, I feel more alive and present than I have in a long time and I no longer resemble a sloth. I’m racing towards something and I know it won’t last forever, but for now, I’ll be making the most of it.

Tagged , , , ,

10 thoughts on “A Freedom Pass … With Restrictions

  1. Judy says:

    Hi Stumbling! Check out http://healinghashimotossummit.com/jolene-brighten/ It’s the Healing Hashimoto’s Summit. Contact the doctors speaking on the Summit to help you with Graves. Good luck!! If one can’t help you, go on to the next!

    • stumbling in flats says:

      Thank you for that. I tried to have a look around but couldn’t navigate all the log-ins?

  2. Archie says:

    Still logging on and popping in to read your posts. thoroughly useful and scary. thinking of you. x

  3. Teresa McTernan says:

    I so admire you for at least trying to live in the present moment. It must be so hard when you know what’s possibly ahead…or maybe not. I am thinking of you x

    • stumbling in flats says:

      Thank you!
      Yup, it is a little bit. I keep thinking my heart’s racing, but it’s me making it race by worrying about it racing, gah!

  4. David says:

    I hope this leads to an improvement for you! When medication works, it works well! When it doesn’t? you get a whole host of problems thanks to it. Wishing you the best!

  5. Patrick says:

    Hope it all works out well. Fingers crossed for you. Remember the toast can land sticky side up

Leave a Reply

Your email address will not be published. Required fields are marked *