No guilt - we'll advocate (edited)

As I type this, it's nearly one o'clock in the morning.  My guess is that by the time I press publish it will be a little closer to dawn.  I've been missing from my blog for a few days due to severe chronic fatigue punctuated by some really good moments.

Under the guidance and prescription of my doctor, after asking politely, we are trialing yet another hormone protocol (slow release thyroxine -T4- and fast release incremental doses of tertoxin which is active thyroid hormone also known as T3).  I think it may work overall.  So far, the benefits outweigh the side effects which seem to include upping the chronic fatigue pain and fatigue in intensity but not duration.  When I am up and about again, after crashing and struggling with sleep, I can feel some of my old self.  I can only hope this works, but it's early days and chronic fatigue is still very much with me.

The benefits include feeling like exercising and finding exercise and activity significantly easier.  I am not sleeping well though but that inevitably gets mucked around with hormone rejigs.  I am quite used to some of the side effects of playing with things.

I will let you know more in the coming days/ weeks.  Let's hope this works.  I am staying away from dairy, peanuts and staying low FODMAP. oat free, and that helps too.

After trying the "natural" thyroid hormones/drugs, I am onto completely synthetic, lab made thyroid hormones. and so far, so good.  I am losing some of the water weight (slowly).  I acknowledge that I still need to eat well (and in my case that means excluding some food) and exercise.  This way, I actually feel like exercising, I am breathing better and my fluid balance is returning to what used to be normal for me before thyroid disease really made it's mark.  One of these days, I want to go for a run for the sheer enjoyment of it.  A fun run is something that has not been a regular feature in my life for years, if it happens on this protocol, I will consider that a significant marker of success.

I've been thinking that there is a bit of guilt in the thyroid patient community online that we rely on thyroid hormones.  I do not generally see that in literature on diabetes type 1 which is a similar condition.  If I get better, much better, I want to be part of changing that culture.  Thyroid patients should be allowed to use thyroid hormones/ drugs that optimize their treatment and have it subsidized.  At present, the criteria in Australia for T3 script subsidization is too narrow in my opinion.  I have thyroid disease and do not qualify for PBS subsidization even though it may be a life saver for me.  It's a ludicrous situation and I look forward to campaigning soon to change it.  I would also like to see these hormones available to thyroid patients who are deemed competent without a script renewal being necessary.

If you have the energy, I would encourage other thyroid patients. and doctors, to write to their Health Minister, Opposition Health Minister and help to create some momentum.  It's something I plan to do in the next week.  I have already written a letter to a local paper this week and two emails to two Federal politicians, so I am definitely becoming a woman of action and advocating change.

Edit: this inability to claim PBS benefits may have more to do with medical interpretation of the PBS schedule which can be found here:

http://www.pbs.gov.au/medicine/item/2318B

I do however, think that patients that rely on hormones for their thyroid should be able to access them readily.  Some will have issues with my opinion, and it is just my opinion. but when you look at some pain killers on the shelf at supermakets they also have massive, if not more, potential for harm if not used responsibly.  This debate on pain killers is one that is ongoing between pharmacists, medical practitioners and the government and will be up for review in the next few months.



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