Thursday, March 29, 2012


It’s been quite a while since I posted and that’s because I have been holidaying down a big dark hole. Actually I have been in hospital. Since the beginning of this year I have just been going downhill in all sorts of ways with no idea why. I was experiencing a new kind of abdominal pain which to me resembled gall or pancreas problems and I was also having weird fevers, chills, weight loss, extra low body temperature and some other stuff which looked like thyroid issues. My GP ran some blood tests which showed some liver inflammation and high T4 and reverse T3 (thyroid levels). I felt so ill that I asked him if he could try to find a way to get me admitted to hospital for some proper tests. He contacted my old gastroenterologist who agreed to admit me to a private hospital. I was so relieved that I was getting access to proper investigation, but once the holiday began my enthusiasm quickly evaporated.

I had more tests and scans than I had hoped for and for that I am very grateful, however it was all conducted in what seemed like a whirlwind which left me feeling increasingly ill. Hospital is NOT a place to get rest. Your supposed rest is constantly interrupted by a steady stream of nurses checking obs, Dr’s consulting, cleaners cleaning and caterers bringing meals. By the end of my stay I was under the care of 6 different Dr’s who each would visit me daily for a chat … that is a LOT of conversation for someone who is so ill. At home I would usually only speak for a couple of minutes each day but in hospital it would have been a couple of hours each day. Exhausting … and of course all the tests and various sedations required etc were a massive assault on their own.

The outcome was no clue for the abdominal pain which sucks because now I am home it’s even worse and I still don’t know what it is, but, on a positive note they discovered a pre-cancerous nodule on my thyroid. This never would have been picked up if I hadn’t been in hospital and you can only imagine what would have happened if it had been left unchecked. The treatment was simply to remove half of my thyroid which was a quick and easy minimally invasive operation, however the general aesthetic totally knocked me for a six. I didn’t get the usual kind of crash I that I had expected but instead felt extremely weak and tired, not ‘fatigued’ in the usual way but tired. It’s been a few weeks since surgery and I am still really struggling … recovery is going to take some time. The downside to the thyroid nodule is that the Dr’s were adamant that it would have been causing NO symptoms at all and so what ever had been making me feel so rotten had nothing to do with my thyroid. I am not convinced that they were right because although I am still really ill the symptoms which I thought were thyroid have largely disappeared since surgery. Coincidence? I don’t know. Time will tell I guess.

It’s so nice to be home and be able to just lay in bed all day if I need to without being forced to engage with others … holidays are often over rated !


  1. Did you rack up any frequent flyer miles?

    I'm glad you're home too honey, to rest and recover. Fingers crossed that happens sooner rather than later.

    Big love
    Marzi xoxox

  2. Lee, do you have your hospital video blogs somewhere on this page. I want to send link to interested person who shares your symptoms. Thanks

  3. I had a bunch of surgeries before I came down with ME. They each left me wiped out for weeks and that was before the ME. Your body needs the sleep to heal up so this is normal.

    The gastro pain stinks. I just went through this with my doc. Did all the tests etc with nothing showing up. Eventually it just kind of cleared up on its own. Of course there was lots of pain in the intervening months. Boo!

    You system might be having trouble detoxing the anesthesia. Talk to the doc and see if you can take activated charcoal to help you detox. It does interfere with meds so you may not be able to take any.

    Good luck and rest up. Must be nice to be back home and be able to lie quietly again.

  4. I hope you are right about your thyroid symptoms too. I am glad you went but feel sorry that it took so much out of you.

  5. It's so good to hear from you. I'm glad you're home and hope you can look at it as an at-home vacation. What a tough start to the year!

  6. Wow, what a sounds so frustrating....I agree that hospitals are not a good place for a sick person, ironically.

    One thing I hate with this illness is the seemingly continual "no clue" from tests and medical professionals...and yet we still have to deal with all the disabling symptoms. While I'm not as sick as you (just moderate - bad enough) I've also had a really bad year and just ended up in hospital with - you guessed it - abdominal issues. I haven't heard back on all the tests but they did find some small ulcers and gastritis which doesn't explain all the issues. I also have some cysts on my thyroid which are getting assessed in June by a specialist...weird, I wonder if for us it's all M.E. related.

  7. Wow, wow, wow! What an ordeal! So sorry to hear you went through so much and didn't get any answers...but it is really lucky that they caught that thyroid tumor. Like you said, who knows what additional trouble it could have caused if it kept growing and stayed undetected. So, it was worthit, then.

    So sorry you are having such a long, slow recovery, but that is pretty typical for any of us with ME/CFS. My son just had his wisdom teeth out last fall (in the hospital, under anesthesia because of his OI) and it took him 2 weeks to recover just from that.

    I agree - hospitals are the WORST places for rest!! Hope your abdominal pain clears up soon. I have also had mysterious ab pain - went to the ER and spent 12 hours there and they couldn't find a cause. It cleared up in a few days but sometimes recurs for a day or so - still no idea why!

    Glad you are home again. Thinking of you...


  8. Hi,

    Just know that there are lots of us out in the world wide web who 'get it'.

    hang in there.

    Try not to lose hope.

    I hope things are improving since you last posted.

    Liz in Australia