Tuesday, June 5, 2012


Its been quite a while since I posted. I have been taking stock and deciding where to go from here … again! After returning home from hospital in March my health improved quite significantly. I am still housebound but am now making many of my own meals, showering every two days, spending time on my laptop and just feeling more comfortable. Having said that, I have reached a plateau at this point. Why did I improve? I wont know for sure but what I can tell you is that while in hospital it was discovered that I had a pre-cancerous nodule on my thyroid. Despite my being adamant that I was suffering thyroid type symptoms the Endocrinologist said that all my thyroid test results were normal and the nodule would NOT have been causing any symptoms at all. Even though he said my test results were normal they weren’t really, my T3 was at the very top of the normal range and my Reverse T3 was sky high. He told me that Reverese T3 is meaningless and in 30 years of practice he has never once ordered that test for a patient. (I had ordered it prior to going in to hospital via my regular GP). Anyway, so half my thyroid was removed and that is the only real reason I can come up with for my improvement.

 So, now …. I am still consulting with my regular GP but have decided to get another perspective and so have begun consulting via skype with Dr Jamie in Hawaii. She has a fresh set of ideas and has already put me on a trial of Oxygen therapy. I should clarify that, Jamie is not in a position to prescribe anything unless you are in the state and country where she is licensed to practice. Jamie is giving her suggestions to my GP here in Australia and if he has no objection then he will write me the prescription. I have been on oxygen for 2 weeks, with mixed results. Jamie has recommended half hour at a flow rate of 10 litres per min with a non rebreather mask. This type of mask has a bag attached and a one way valve so it prevents you breathing anything other than oxygen. This in theory is the closest thing you can get to using hyperbaric at home. I have so far not been able to tolerate oxygen at such a high flow rate and will be talking to Dr Jamie in a couple of days more about this. I find that it makes me very very spacey and I have difficulty breathing afterwards, even if I only use the oxygen for 5 minutes rather than half an hour.

 What has been successful for me is using it for 20 minutes at only 2 litres per minutes flow rate and with a nasal cannula. I find if I use it this way straight after an activity (such as a shower), then the Post Exertional Malaise I would normally get is lessened quite noticeably. Also if I use it before bed I sleep better and am generally a little brighter in the morning. But .. if I use it this way 2 days in a row then I tend to crash. Perhaps it’s a reaction to the plastic mask/cannula or something in the oxygen itself? I do hope I can work this out because the oxygen is the first thing I have tried in a long time that I can see gives me instant results. I know Dr Jamie has a few other tricks in her bag so I am hoping that this year will be a better one for me.

 I’d be keen to hear from anyone else about their experiences with oxygen.


  1. Wow - interesting stuff. So glad you are finding something that is helping (anything that reduces PENE has to be very very welcome). Must do a bit of reading on how the oxygen works.

    Hope Jamie comes up with some new breakthroughs that you can try here. XXOO

  2. Hiya, I'm glad you bet me to it with the oxygen blog, its on the 'to do' list and I'm getting the guilts for not sharing.

    Great. I'm finding it helps but...my theory for today is that the need varies. For example, today the nurses visited me to change my port a cath and I was absolutely shot, exhausted when they left, a little (10 mins @ 5L's) O2 later and I was no longer nose diving energy wise. If they hadn't of visited, I wouldn't have needed it. Post day-op it was a godsend.

    But too much makes symptoms worse.

    I think getting the balance right is really important. I've been able to sit up for 30 mins a day (in bed) which is huge, but I'm a long way from symptom free even when just resting.

    :) Great to hear someone else trying the same things .


  3. Look up the symptoms of hyperventilation to see if that is what might be happening to you with the oxygen. I often hyperventilate in my sleep and wake up feeling dreadful - super light headed, tingling extremities, night sweats, and other symptoms.

  4. Keep us posted, I'd love to know whether it helps over the long term....I'd never heard of this treatment before. I am seeing an endocrinologist this month re: cysts on my thyroid. My levels are normal, but maybe I'll be lucky like you and having them dealt with will help?

  5. Wow, supercool that you are consulting with Jamie. Will be curious to hear how this progresses.

  6. I'm considering using oxygen also so am looking forward to updates. I've also chosen you to receive the Liebster Award. I find your blog to be an inspiration and wanted you to know...