Reality Check

One month on and my platelets have been up and down, and my emotional and physical health with them. I had a high – a record 101 three weeks ago, with ensuing confidence, happiness and denial of how serious the condition is. Thank goodness I have my psych to bring me back to some sort of reality once a fortnight!

Because of, course, as soon as we reduced the prednisone by the tiny 0.5mg, the platelets took a dive, and kept on diving for 3 weeks in a row. Down went my strength and resilience, up went the incidence of headaches and shakiness

The platelets have stopped diving, and crept up a whole two points, but at least my doctor and I are starting to recognise my immune system’s pattern. It takes three weeks or so for my cortisol levels to get up to the artificial level of the steroids, so there’s a gap when it’s below what it should be. So the platelets start dropping and keep dropping. Then, it catches up, & they turn around, & rise for 3 weeks until we do the next reduction.

H Pylori and Gut Parasites

During this month I’ve had a series of extra tests, as we cover all the angles. Following last month’s research findings on H pylori, we checked my blood for antibodies. Thankfully we found none, as I really didn’t want to add antibiotics to my pharmaceutical diet. Next, we’ve tested my faeces for signs of gut parasites that might be causing the regular bouts of diarrhoea that afflict me, and reduce my absorption of nutrients from my food. The results aren’t all back, but it seems probable that I’m clear. Which points the finger at food intolerances.

Testing for Food Intolerances

I’m already aware that I’m gluten intolerant, thanks to the presence of one gene for coeliac disease. So, I’ve - reluctantly - adopted a strict gluten-free diet, and started making my own bread – so much better flavoured (and cheaper) than the commercial stuff. Even more reluctantly, I gave up my morning serve of porridge, as even I had to admit that I could no longer digest oats. The 1/8th Scottish blood in me was sorely tried by giving up porridge, and replacing it with the less tasty and certainly less filling millet ‘porridge’.

Now, it seems my Scottish and Welsh heritage (also only 1/8th) might be to blame for some other form of food intolerance. It turns out that people of Celtic background are more prone to food problems than non-Celts. The poor Irish have the highest incidence of food intolerances in the world. So now we’re checking to see if I have the somewhat rude-sounding MTHRFR gene, and if I do, it will be off to see the food intolerance expert at Sydney Uni.

More Depressing Results Of Long-Term Steroid Use

Also during this month of tests, I had a bone mineral density check up, and yes, my bones are thinner by 5%, pushing me ever closer to osteoporosis. It seems the prednisone is drawing calcium from my bones into my blood stream, and, according to my doctor, taking a calcium supplement would simply put more calcium in blood, not back into my bones, until we can majorly reduce, or even stop, the steroids for a while.

Equally bad is the news that I now have metabolic syndrome(‘pre-diabetes’). While I knew the steroids had raised my triglycerides and total cholesterol to quite high levels, my blood pressure is well controlled, and remains perfectly normal, so I’d hoped I would escape the treat of diabetes. Well, no, I’ve developed insulin resistance. So, another change of diet, to minimise it. Now I must drop my carbohydrate load and eat even more protein – ie– at all three meals a day, and up my fat consumption to replace the energy I won't be getting from carbs. Eight months ago I was on a low fat, low protein (100 grams a meal), high carbohydrate diet that suited my lifestyle and kept me around my normal weight of 65 kilograms. Now it’s completely reversed! Thanks, steroids – thanks a bunch!!

Also this month I had a date with my optometrist, who confirmed my eyesight was worse than this time last year – by a large amount, but reassured me that it might not be permanent.

On the Bright Side

It’s winter in Sydney, which means it’s not cold by most people’s definition, the sun shines most days, and I’m enjoying rediscovering meat dishes and relearning how to cook tasty warming meals the slow cook way. And my doctor says I should eat more bacon – in moderation, of course!