Reaching four years

Reaching four years

In a couple of weeks I'll reach the fourth anniversary of being diagnosed with ITP.  I am almost adjusted to living with a chronic autoimmune disease.  I say almost, because last week I had to see the haematology professor for the first time in three and a half years, since my GP took over managing my condition.  Most of those four years have been documented in this blog.

But as it was coming up to that anniversary, and my platelets had dropped quite low after my wonderful holiday in the US, my doctor and I  agreed it was time to get some advice from the haematologist.  Having worked out that I'm not a bleeder and that I'd like to risk life on no steroids at all, eventually, I was nervous about this visit, convinced I'd be forcefully advised to stay on the prednisone, or if not, some other unpleasant, and to my mind unnecessary, treatment.  (The professor and I had not really hit it off during the time I'd had to see him for weekly visits!)  I took my latest blood test results as requested (platelets 29, everything else good, apart from the kidneys, from not drinking sufficient water in our very hot spring weather).

To my relief I was not seen by the professor but by his registrar, a younger woman doctor who listened to me and my arguments for not having treatment after the prednisone weaning. She agreed that four years on steroids is too long, given the bad effects on my bones and skin and adrenals.  Then she quietly and patiently explained what treatments I would need, in hospital, if my platelets dropped below 10.

10 is my new danger line

My doctor and I had had agreed on 20 as the number at which she would advise me to go to the hospital ER. But when I came back from Boston and we discovered I had dropped to 18, I was clearly so healthy - none of the nasty flu, stomach bug or other winter ills going around - that she just advised taking extra care to avoid accidents and we boosted the steroid dose again.

The haematology registrar explained that below 10 was dangerous because, as well as the risk of internal bleeding from a fall or a blow to the head or abdomen, there was the scarier risk of spontaneous internal bleeding - blood leaking into the brain or internal organs.  Now that IS scary!  I was quite happy to agree with her that if I did drop below 10 during or after the weaning, I would go immediately to the ER, and receive intravenous immunoglobulin, and then go on weekly infusions of rituximab for a month.

50 is my new target

It's unlikely I will ever get back to normal platelet numbers, short of spontaneous remission, so although it would be wonderful to have platelets in the 150+ range, that's not a realistic goal.  "It would be lovely if we could get you sitting around the 50 mark," the registrar said. I have been over 50, but I was on a relatively high steroid dose. "39 or even 29 are quite good figures for you."  So 50 is a goal to aim for, but not to be too distressed if I don't make it.

I see the professor in a month, by which time I'll be down to 4mg of pred a day. A milligram a month means it will take three  months to get down to 1mg, and then we'll be reducing carefully by halves and quarters, as that last milligram is the hardest. Three years ago I reduced too fast, my adrenals could not cope with the steroid withdrawal and produce enough cortisol to compensate, and I ended up with adrenal exhaustion.  I'm determined not to let that happen again.

On the bright side

I'm disgustingly well.  I still haven't caught any of the nasty viruses going around, despite people coughing and sneezing on buses and in doctors' waiting rooms. My spring vegetables are growing really well on my balcony, so I'm eating fresh lettuce and rocket and spinach every day.

And there's soccer on the free-to-air tv channel!

Time for a re-evaluation

Over the past two weeks my platelets have risen quite nicely, and so far have stayed up.  My doctor and I have continued reducing the steroid dose, and this week agreed to stretching the weekly blood tests to fortnightly.  It's official - my condition has "turned around, stabilised" - at least for now.

On Wednesday she and I had a serious discussion about what we've learnt over the past three months, and what direction we - or more importantly, I - want to take on this journey with my auto-immune disease.

After I'd done all the research I cited in my last post, I sent her the link to Crystal's story, requesting her views on the haematologist's comments, which I'll quote here: "The goal for treatment of ITP is only to treat or prevent bleeding.  There is no other goal.  The platelet count tells us something about the risk for bleeding, but even patients with very low platelet counts for a very long time may have minimal bleeding symptoms, or none at all. "

He went on to say "patients with ITP who have very low platelet counts are often treated with many different medicines even though they have never had any significant bleeding. And the outcome is often that the treatment of ITP is much worse than the disease."

I'm a little bleeder

Readers of British background and those of us who watch British tv shows will get my pun. It seems I'm actually a low bleeder. Even when I was down to 12 recently, I had very little spontaneous bruising, just a couple of smallish marks on the backs of my thighs. When my gums bleed while I'm cleaning my teeth - maybe once a month - the bleeding stops as soon as I swirl my mouth with icy water. If I cut myself, it stops after a couple of minutes pressure or a tight bandaid. Even when the regular pathology nurse is away, and the replacement nurse is a little clumsy, I only lose a few drops of blood, although the blood flows fast enough into the vials while it's being taken.  So even with low platelet numbers, my blood does apparently clot fairly rapidly.

Doing the numbers

My doctor cautioned me to remember that platelet numbers quoted in the US studies such as Crystal's Story, are not directly comparable with Australian or UK numbers, because the measurement systems are different. Australian and I believe European systems (which would include UK), measure platelet numbers at10 to the power of 9 per litre of blood. So even when I was down to that scary 12, I actually had around 12.000,000,000 platelets in each of my approximately five litres of blood. And they seem to be doing their job, even though the average count should be 150-450 (times 10 to the 9th).

What we learned

Living with an auto-immune disease is a daily experiment, with an experimental sample of one, since no two people have exactly the same physical, emotional, psychological or spiritual experiences, even if they share the same disease. And like the good haematologist, Dr James N. George, who is Professor of Medicine, Hematology-Oncology Section, Department of Medicine, Department of Biostatistics & Epidemiology, College of Public Health at the University of Oklahoma Health Sciences Center, my doctor believes in listening to the patient and learning from their experience. This is what we've learned from the past three months:
1/ I can crash while feeling really well, without any warning signs and no clear reason why;
2/ During a crash, applying high doses of steroids doesn't have much effect, but when it turns around, small doses are quite effective;
3/Just when you think you know what to expect from the illness, something changes. "Welcome to the wonderful world of auto-immune disease."

Where to from here?

Over the next few months we will continue to reduce the steroid dose, with aim of weaning me off steroids altogether. Maybe not by Christmas - a goal we've aimed for each year for the past three years - but some time in the next six months. Then the next phase of the experiment will begin. Living on the edge - life with ITP without corticosteroids.  The safety net will be IV immunoglobulin and/or platelet transfusion if I get dangerously low. 

But that's a while down the track.  Right now, it's enough to know I've stabilised again, and we can get back to weaning my body off those horrible steroids.

Reasons to be cheerful

All of the above, my lovely family, good friends, and a new writing course I'll be starting next month.

Another roller-coaster ride, so it's back to the research

This week's number was not a beautiful one like last week's. From 96, I dropped in seven days down to 41, a loss of over 50%.  Meanwhile my face is still swollen and uncomfortable, and my energy is unreliable, trickling away quite fast on some days, taking a while to get started on others. No wonder I've been a bit down this week,  a little weepy, or at least quite grumpy! 

On Monday I tried to get back to the gym, reasoning that structured  exercise would be good for my mood, but a combination of my bus being late, leaving me to stand around in the cold wind for 20 minutes and my energy running out before I got to the gym, meant the best I could manage was a gentle 15 minutes on the exercise bike and five minutes doing bicep curls and rotator cuff exercises for my damaged shoulder. The gym staff were, as ever, friendly and helpful,  and my membership fee suspension has been extended for another fortnight, bless them, but it was disappointing.

However, I can still work, thank goodness, if a little more slowly and my brain is still able to make sense of scientific and medical research information. So today I went searching again online for any news or recent clinical studies on ways to treat ITP.  In doing this research I've been reminded of a fact I keep losing sight of.  Unpleasant as my experience of ITP is, I am way better off than a lot of people! I do not have  refractory ITP, as I was beginning to imagine. Refractory ITP occurs when even surgery - splenectomy (removal of the spleen)  - does not produce a lasting increase in platelet numbers. I just have simple ITP.  My platelets respond OK to largeish doses of  the cortocosteroid prednisone (known in the medical world as Pred), and until recently they behaved reasonably well as we weaned me off the horrible things. I was down to 0.5mg a day for three months before my count got so low as to scare both my doctor and myself.

Options for ITP treatment

So here's what I've been reading.  First up, a straightforward account of the protocols of treating ITP: Immune Thrombocytopenic Purpura Treatment & Management. This is where I learnt that my ITP is not refactory.

Next I looked up Rituxan, as it had been suggested to me by two or three commentators on this blog as an alternative to the Pred, as a way of avoiding the horrible side-effects.  But, as the above article points out, Rituxan (also known as Rituximab and Mabthera) is a third level treatment - ie - after Pred and intravenous immunoglobulin or Rho(D) Immune Globulin haven't worked. But I read about a Danish multi-centre study into the use of Rituximab specifically in ITP patients, as the drug was actually developed for use in non-Hodgkin's lymphomas and other haematological cancers.  It's also used 'off-label'  in difficult cases of multiple sclerosis and lupus, and is a possible therapy for ITP.

However, it turns out that Rituxan by any name is not a replacement for Pred, but an adjunct, as the Danish study shows.  Nearly all the patients in the study were given Pred prior to their weekly  infusion of Rituximab.  Some received as much 100 mg each time. To be fair, that was only once a week, but that's a heck of big dose! And the results, from an overall count of  35 patients, less than half got a response of 50-100 more than their previous platelet score. So, while I'll discuss Rituxan with my doctor, and the haematologist when I eventually get to see him - my appointment is two month's away, I'm not pinning a lot of hope on it.

A cause for optimism

Lastly I found a site for patients called Platelets on the Web, which among other useful information, gives four patient stories of their experiences with ITP.  The one that gave me cause for optimism was that of a 75-year old woman who had incredibly low platelet numbers - down to 3 at one point - who was eventually able to go off medication after even a splenectomy did little to improve her count, and then a year or so after her initial diagnosis, had a complete spontaneous remission, and remained healthy for many more years. It's called Crystal's Story.  The take-home message I got from reading that - apart from the hope for spontaneous remission -  was her doctor's comments about "the value of cautious, conservative treatment for patients with ITP. The goal for treatment of ITP is only to treat or prevent bleeding.  There is no other goal.  The platelet count tells us something about the risk for bleeding, but even patients with very low platelet counts for a very long time may have minimal bleeding symptoms, or none at all. "

He goes on to say "patients with ITP who have very low platelet counts are often treated with many different medicines even though they have never had any significant bleeding. And the outcome is often that the treatment of ITP is much worse than the disease."

Woo hoo - a doctor who understand his patients!

 It's good news week

 Well, this week is good news week, and the lucky number is 96!  That's a long way up from last week's dismal and scary 20, or the 36 the week before, and eight times better than that terrifying 12 I had a month ago!  So last week's steroid pulse worked.

Never mind that the right side of my face is tight and shiny, puffed up into the beginnings of the dreaded 'pumpkin face' I had for several months back in 2010. Or that my sleep  at night has been badly disrupted, waking to pee, and not getting back to  sleep for an hour or two, or on one really bad night for two and half hours. Plus all the other high steroid side-effects I've already described.  No wonder I've been grumpy lately!

Finding some good in necessity

There has been one unexpected benefit from the pulse and that's been the steroid 'hyper'. While it's a pain at night to have your brain going so fast you think it will take the top off your skull, in the daytime that much energy and ability to think fast is exhilarating. I've completed a huge lot of work over the past two weeks thanks to this amazing source of energy and surprisingly clear thinking. Not creative work, but nit-picking proofreading for commercial clients, which helps to pay for all my expensive supplements and high quality meat and fish protein. That's very satisfying, since I've been stuck at home for so much of the past few weeks and the hyper mood does not allow for quiet reading and listening to music! 

Sudden energy slumps

The downside is the  way that energy suddenly drops, like it fell out of your body down a chasm.  Whump! It's gone, and I'm left drained and brain dead for several hours.  Until the brain starts up again about 10 pm...

A holiday from the pulse

Since my number was so unexpectedly beautiful, my doctor and I agreed on a week's holiday from the pulse.  We'll see if my face goes down, the other side-effects subside to bearable, and more importantly we'll see if next week's blood test shows the platelets up, at the same level, or down.  My doctor thinks we've turned this low patch around.  I'll believe that when we get a run of good results.

On the bright side

 It's so good to be able to sleep again at night!  To wake and go for a pee, come back to bed and zonk straight into dreamland is wonderful!

Walking through the university early in the morning for my weekly bloodtest is always a pleasure, no matter how shaky I feel when I start out. Here's a secluded corner of the uni grounds:

Feedback from fellow ITP sufferers

Last week I had an email from John, who was diagnosed a year ago. It was lovely to have an email conversation with him, especially as he told me he found this blog helpful.  He described the major changes to his life in the 12 months since his diagnosis - " new routines, new worries, learning to adapt to changes in my life" and the fluctuating low platelet numbers. I'm sure I'm not the only person with ITP who can relate to John's experiences! I would love to hear from others about their experience with ITP.  You can email me or simply comment on this blog.

John was hoping that having a weeekly injection of a medicine called N-Plate would bump up his platelet production. He and his doctors are hoping he can get to 75. 

Romiplostim

N-Plate's pharmaceutical name is Romiplostim. It stimulates the bone marrow to create large numbers of platelets at a time to overcome the immune system's ability to destroy them.  It is not intended to create a full platelet count but to get the platelets over 50.

In the US, the FDA approved Romplostim as a long-term treatment for adults with ITP  who have not responded to other treatments such as steroids,  intravenous immunoglobulin, Rho(D) immune globulin or a splenectomy. In Australia, it is considered very much a last resort treatment, after everything else has failed.

Good luck with your N-Plate, John. Do let us know if you get to 75 and stay there.

Another setback

Last week's blood test result - 46. This week's blood test result,
which I got yesterday was - not 60 or even 50, as I'd modestly
hoped, but - 12. 46 was certainly not as great as I'd hoped, but it
was pretty OK, and definitely out of the danger zone. 12 is back in
scary territory!

In other words, although the steroid pulse my doctor and I did 10
days ago had definitely worked - a jump of 34 - it hadn't held once
I was on 5mg for a week. I'd lost everything I'd gained, while
putting up with all the usual unpleasant side-effects of a relatively
high steroid dose. 

So we're trying the pulse again - this time over  a longer period.  I started on 25mg last night and will take that for three nights, then on to 15 mg until I see my doctor again after next week's blood test. If the results are encouraging, we'll drop down to 10 mg for some days. It will beabout three weeks before we get back to 5mg, and  only if my platelets are much higher than 46.

As well as being under 'house arrest' again for at least until next
week's blood test, I can look forward to three weeks of increasing
discomfort from the horrible steroid side-effects.

Steroid side-effects

If you've never been on high steroid doses this is what I and many
others experience: sudden drops in energy, shakiness, palpitations,
indigestion and belching, pain in the oesophagus that feels like a
knife stuck through me, disrupted sleep - waking up and being
unable to get back to sleep because your mind is spinning with
thoughts. Not exactly fun!

Brain fog

Both my doctor and I hope I won't be on the higher doses for so
long that they affect my adrenals and produce the dreaded brain
fog.

Brain fog is similar to what many people receiving chemo for cancer develop.  Your brain feels full of cottonwool or thick fog; your neural synapses seem sluggish or unwilling to fire. It is debilitating and depressing to be unable to think clearly; often it affects your ability to make sense of what you're reading.

Damage to the adrenals also leads to fatigue. So it's no wonder I'm
feeling a wee bit down this week!

At the moment, my adrenals are coping and thank goodness my
brain is only a tiny bit slower, so I can still work effectively.

Always look on the bright side of life

I've been through all this before, but thankfully not for quite a
while. And each time, I've bounced back and my brain has returned
to action. So far this year I've been remarkably well, and for much
of last year, apart from debilitating migraines in summer. In fact,
the problem seems to be that I'm just too healthy! Even spending
three weeks in Boston in the spring sunshine and coming back to
winter in May didn't cause any health problems, if I ignore my
immune system munching up my platelets faster than my bone
marrow can make them.

And although my doctor telling me the bad news threw me a few
minutes of teary anger, I walked out of her surgery laughing. I said
I was heading to the nearest café for a restorative coffee and how
glad I was that coffee protects the liver against  steroid by-products. Shetold me about a patient going for a coffee enema to  detox,
who was surprised she was buzzing for 48 hours after. Yikes!! I'll
take my coffee orally, thanks!

Wake up call - part 2

Well, the cold was a fizzer - it wasn't a cold but a seasonal allergy,
as I suspected when despite frequent explosive sneezes, my 'cold'
didn't get any worse.  So, the next blood test showed a truly horrific
12.   Luckily for me, despite horribly wet and at times windy
weather, I hadn't fallen over or been knocked down, although I had
a couple of small bruises which I couldn't remember getting, and
my gums weren't bleeding. Time for the big guns, to arrest the slide
before I did get into danger.

We decided on a steroid pulse, a quick in and out to hit the immune
system without upsetting my adrenals. First night it was 50mg -
100 times the dose I'd been on for the past four months. The
second night it was 25 mg. By then I was starting to feel side-
effects: palpitations, indigestion, discomfort in the hiatus hernia in
my oesophagus, inability to get back to sleep after going to the
toilet.  In the morning, before my next blood test, I felt some
shakiness and was a little slower than usual.

That blood test was encouraging. My platelets went up two and a
half times to 30. I saw my doctor the next morning - a day of
flooding rain and very slow traffic - and we dropped the steroids to
15mg, with a maintenance of 10 mg/night until my blood test next
week. By then there's a good chance the platelets will be up north
of 50, and we can breathe easy again.

Back on the Chinese herbs

Although the platelet number was encouraging, my haemoglobin
levels are still low, and so are my sodium levels. I had low sodium
back in January 2010, & I was encouraged to put salt on my food.  I
invested in a salt grinder and some lovely sea salt crystals, while
keeping the iodised powdered salt for cooking, as I need to
maintain good iodine levels. This time, we noticed my sodium levels were down at the same time as the haemoglobin. There might not be a connection, but it's worth looking up. Back then, my
antihypertensive medication was implicated, and since then I've
been put on a daily paracetamol dose to relieve arthritis pain. I
thought that might have contributed to the sodium loss, but the
reverse is the case. There are warnings against too much sodium in paracetamol preparations

To boost the haemoglobin, protect me from the worst of the higher
steroid doses and generally assist my nutritional profile, I'm back
on the Chinese herbs, twice a day for two weeks. I have no idea
what they are - a list of 10 Chinese herb names that meant nothing
to me, as I only know European and Australian herbs.  But they
taste like the ones I had back in March 2010  and are actually quite drinkable, so I think they're the same mix.

On the bright side

The drenching rains of the past two weeks have stopped, and we
have sunshine,blue skies and mild temperatures (18C in the middle
of winter). The snow peas and rocket I sowed a month ago are well
advanced, the everlasting spinach is still going and my geraniums
are still flowering. Being mostly housebound means I have been
reading more and I've finished knitting the cardigan I started three
months ago.  In spite of the ups and downs, life is good!

Wake up call 

Every once in a while I need a reminder that my ITP is a chronic auto-immune disease, and that just because I feel well and full of energy and a functioning brain, I am not over it. I am not cured, because it’s an auto-immune problem for which no-one knows the cause. Since we don’t know the cause, we can’t eliminate it, and it’s probably exacerbated or mediated by various genetic and nutritional deficiencies I’ve had since birth. And so the problem of low platelet numbers will recur time and time again. I received a wake up call last week when my latest blood test showed an alarming figure of 17, three below the safety level my doctor and I had set for going to hospital. To be honest, the levels had been dropping over the previous three months, by about 50 percent each six week test, but we’d quietly ignored the decrease as my numbers were still high, and I was doing well on all the other counts – haemoglobin, cortisol, adrenals, liver function, kidneys, everything except my IGGs, which were still a bit behind.

At the end of April I had a flu shot, as winter was approaching with the flu season. Two weeks later I flew to the US (21+ hour flights each way) and had three wonderful weeks with my daughter and her husband in Boston, and three and a half fabulous days in New York. I paced myself, resting on every second or third day, and every day for a couple of hours in NYC, but other than that had a fantastic time, travelling, eating well, drinking cocktails, meeting new people, visiting museums, theatres and art galleries, and exercising once a week in their home gym.

When I came home to Sydney, I was tired but still high on pleasure, and apart from normal tiredness – no jetlag – felt fine. In fact I felt better than fine. I felt fabulous! A week later I had my blood test, and a phone call the next day from my doctor, concerned about the dreadful figure for my platelets. When I saw her, I assured I was feeling fine, that I had no spontaneous bruising (plenty of bruises from travelling, but I knew the origin of each bump and knock), and that my gums were only bleeding a little when I cleaned my teeth. We had a serious discussion about risk management, and agreed that I would go straight to A&E if I had any fall, trauma or was knocked down in the street. As before, the risk is invisible but serious – internal bleeding, especially into the brain if I had a head injury.

Since winter had already started, and although we were enjoying milder temperatures than usual, early mornings were foggy and rainy, so I agreed to stop going to the gym for the next few weeks. Early morning is the best time of day for me to go to the gym, so I’ll just have to exercise at home for a while. No sense risking getting knocked down getting on or off a bus!

A week later and I’m rejoicing that I have a head cold. Violent, explosive sneezing, runny nose, slight temperature, mild sore throat. Nothing major, just a common or garden cold, an URTI, but it’s something to keep my immune system busy, so it leaves my platelets alone. No-one enjoys a cold, but I’m actually delighted this one has started. Next week’s blood test could show a nice increase in my platelets What the statistics from my three and half years of blood-tests show is that I need at least two episodes of illness – flu, stomach bug, heavy cold, migraines that leave me dehydrated from nausea – to give my platelets a chance to recover and bounce back to normal.

So here’s hoping that this week’s cold will do the trick. I don’t want anything worse. I had a bad stomach bug in late November that was absolutely horrible – vomiting, diarrhoea, shakiness for days – that messed up my plans for Christmas. But did bounce my platelets up to 146. If this cold works, I should have three to five months of good numbers before I need another infection. Bring it on! Meanwhile, pass me the tissues, I feel a sneeze coming…

Reasons to be cheerful

Apart from the happy memories, photos and new clothes from my holiday, the fact that I mostly feel well and have patchy but fairly regular freelance work I can do at home are very good reasons to be cheerful.  Living in a beautiful city with lots of cultural activities I enjoy with friends is a bonus!

I'm Still Here!

Earlier this week I received an email from John in Los Angeles. He had been recently diagnosed with ITP, and searching the web for information on his condition, found this blog. He told me he was grateful to have a patient’s view of the illness and how it has affected me. John, if you’re reading this, thank you for spurring me to write another update. Just remember, though, we are all individuals, metabolically as well in our personalities, so what works or doesn’t work for me, may or may not affect you the same way. But at least you’ll get some idea of the dimensions of this ‘orphan condition’ that so few people know about.

Quick Look Back

Four months ago when I last posted in, I was feeling a little sorry for myself thanks to a slight recurrence of adrenal fatigue, and the diagnosis of mild hypothyroidism. As if I didn’t have enough, what with arthritis, osteopenia (thanks to small bones and the weakening effect of prednisone on them), and eczema, aggravated by, but not merely caused by gluten-containing foods. So, I was having to remember to be strict about what I eat and drink, remember to take my iodine, Vitamin B12, folinic acid cordyceps, slow release Vitamin C, magnesium (to counter muscle cramps), plus my normal ‘seniors’ medication to manage my high blood pressure and cholesterol levels and strengthen my bones No wonder I was feeling a bit sorry for myself!

Since then, I’ve had an operation on one eye to remove a growth on the back of the retina, and tomorrow I see the optometrist to see how much my vision has improved, and hopefully, to choose new glasses. I thought the eye op, which involved a stay in hospital overnight, would bump up my platelet count. Anything that occupies my immune system usually gives my platelets a rest from being munched, but no! For three months I cruised between 60 and 50, as we cautiously dropped the steroid dose by 0.25mg. Then last month – bump – down to 44. Not really alarm bells (my ‘rush to hospital’ figure is 20), but enough to scare me.

Thankfully, I caught one of the nasty winter colds going round (even more thankfully, it wasn’t the flu), so last week my platelets were a magnificent 92, my PB for this year! How long they’ll stay up there is anybody’s guess, but it felt like I won gold!

Thin bones getting thinner

Dem bones, dem bones, dem thin bones: I had a two year bone density last week, and only today did I have the courage to read the report before I take it to my doctor. As I feared, two years on from my last test, and two and a half years of taking steroids, my bones are getting more fragile. I have a marked risk of spinal fracture and a moderate risk of fracturing the left femur. Not fun!

On the other hand, I’ve only been taking the Fosamax (alendronate sodium monohydrate) for six months, and I understand it takes a few months before there’s enough in my system to have an effect. And, on the plus side, I’m still going to the gym regularly doing resistance training, which builds up bone strength as well as muscles, and last week my trainer graduated me from the small gentle hydraulic leg press to the big one with real weights.

Feeling pretty good

Despite all this and the messy cold, I’ve been feeling pretty good for the past month or so. I have enough energy, most days anyhow. I walk, I spend time with friends, go to art galleries, concerts with them. I joined a creative writing class which has been real stimulus for my brain, socialising with other writers and learning from a great poet. Some of my writing has been recognised, with a short story being published in an anthology, Between the Sheets and a poem accepted for a university literary magazine, to be launched at a writer’s festival next month.

I think too, that I’m finally learning something about acceptance and gratitude. Certainly gratitude. I’m far more conscious of feeling that for simple things, even for having a good day, in a way that I didn’t before this illness struck. And most days I accept that on a good day I’m 80/80 (80 percent well, 80 percent of the time), but that I will have days when I’m only 50/50.

Reasons to be grateful

All of the above, plus

· glorious sunny winter days in beautiful Sydney (top pic)

· the port wine magnolia flowering outside my balcony (left)

Let's hear your story!

I’d really like it if other people reading this blog would comment on how ITP has affected them, what works, what doesn’t work, how they manage, and above all, how they keep cheerful. Let’s hear from others in our special little group!

Life is a Chronic Illness

A friend was recently diagnosed with breast cancer for the second time. Although her lump, which was pre-cancerous, was successfully removed, she has to have radiation therapy as a precaution, to reduce the likelihood of the cancer returning in a more aggressive form. Her oncologist told her “Breast cancer is no longer a death sentence. Breast cancer is a chronic illness.” I was there to support my friend, and it occurred to me that life is a chronic illness. While not immediately life-threatening (if that's not n oxymoron), it does kill us in the end. The trick is learning to live with this chronic condition, to take each day as it comes and make the most of it, not knowing when the end will come.

Now, I know this thought isn’t original. I’m not sure which philosopher put it into words first – probably not Marcus Aurelius, who I'm currently re-reading, although he had some helpful things to say. Do not act as if thou wert going to live ten thousand years. Death hangs over thee. While thou livest, while it is in thy power, be good. (From Meditations.) So why am I meditating on life and death? Because I’ve hit another little bad patch in my journey, and I need to remind myself that being ill is not the be-all and end-all of my life.

Low energy, shakiness, weepiness – so what’s new?

The most annoying thing about this chronic condition is the way a relapse takes me unawares. It’s a pain! I can go along feeling fine, full of energy, brain working almost as well as it always has (maybe a little slower, if I’m honest), and wham, suddenly I have a day when I’m feeling shaky, weepy, and an intense desire to lie on couch and feel sorry for myself.

The reason is I have been ignoring the little warning signs that this is creeping up on me. At some level, I have been believing that I well. Fixed. Cured. 100 per cent better. And behaving like I’m as fit or fitter than I was at 25. Exercising at the gym 3 or 4 times a week. Working hard editing, writing. Going out with friends. Filling every day with activity. When, to be honest again, I should know – and accept ­– that at best I’m only ever going to be 90 per cent or 80 per cent, and I can’t behave like I have the drive and energy of my younger and healthier self.

Low iodine and slow adrenals

In my last post, I mentioned the possibility of mild hypothyroidism. My most recent blood test reinforced that possibility. My blood iodine levels were mid-range at 48 – moderate iodine deficiency, so now I’m taking one drop of iodine tincture in a glass of water once a day.

Iodine is one of the micronutrients the body requires to produce the thyroid hormones. Although it is found in fish and seafood, the best natural sources of iodine are seaweed and kelp, which not many people eat, except as wrappers for sushi rolls. Japanese people, whose diet is high in seafoods and seaweeds, seldom suffer from iodine deficiencies, but many Australians unknowingly have a mild lack, and this is a concern with maternal and infant health. Other sources are eggs, yoghurt, milk, strawberries and some cheeses, but their iodine is dependent on the soil in which the grass or the crops was grown.

Worldwide, 139 countries have soil deficient in or entirely lacking iodine. Australia is one of them – particularly Tasmania, where I spent my childhood. Severe iodine deficiency, especially in pregnant and lactating women, causes horrific brain development problems in the foetus and young babies. Growing up in the 1950s, I saw many cases of cretinism and goitre, terrifying to a small child. By 1960, the cause had been discovered and we were given iodine supplements. The best sources of iodine in Australia are actually bread and salt, which have iodine added. (Milk used to be a good source, when iodates were used as part of the sterilising process in dairies, but this no longer happens.)

Adrenal exhaustion – not again!

Eighteen months ago, I was totally weak, limp and useless, as I was suffering from adrenal exhaustion. I was afraid this latest set-back would be the same, but I was over-reacting. Sure, I have a bit of adrenal fatigue, thanks to the low iodine, slight anaemia, having migraines on hot and humid days, and just doing too much, but I am 75/75 – ie – 75 percent well, 75 percent of the time. I just have to get it through my stubborn mind that I MUST rest more and do less, and keep taking my daily supplements of B12, folinic acid, vitamin C, iodine, and the Chinese herb, cordyceps. Find a balance between action and repose, to make the most of my chronic life.

Reasons to be cheerful

• Music on my laptop, for when I have to lie on my couch.
• Poetry cds, poems read by their British or American authors for couch time
• Good books and a local library that gets all the latest ones
• Walking through the Botanic Gardens or my favourite parks when I have the energy
• Work that uses my brain and provides disposable income to buy concert tickets, books, cds, occasional new clothes,
• Time with friends and family – either in the flesh or on Skype

Poor genes, poor health – but not poor me!

I’m approaching the 2nd anniversary of my diagnosis with ITP. I feel stronger and happier than I did this time last year, but it’s been a strange journey, and along the way there have been far more questions than answers!

Every three weeks I have a blood test, and my GP and I analyse the data and come up with a new or extended hypothesis of the underlying causes of my low platelet count and my prognosis over the next few weeks. As well as the all-important platelet count, we have a cycle of other markers we monitor – cortisol, haemoglobin, red cells, white cells, lymphocytes, monocytes, basophils, eosinophils, calcium, vitamin D and vitamin B12, plus a string of blood chemicals and hormones identified only by initials – most of which I only have the very vaguest understanding of what they do.

No simple answer for thrombocytopenia

Two years on and the one thing that is clear is that there is no simple, straightforward answer as to why I have thrombocytopenia. Why my platelets bounce up and down, and struggle to reach 100. Why 50 or 60 is an OK level for me, though it would be a tremendous psychological boost if they would sit on 100 for while.

On 50, or better still, 60, I function pretty well most days, with maybe one dodgy day a week or 10 days. By ‘dodgy’ I mean slow moving in the morning, or shaky for the first couple of hours, so my bad days are nowhere near as horrible and debilitating as they have been, and are, currently, less frequent.

Over the months, we’ve looked at various possible causes or contributing factors, such as H pylori ,gut parasites, and low-grade Lyme disease. Plus we have identified some of my genetic deficiencies – being gluten-intolerant and also unable to metabolise folate from food. Now we have another one – low level hypothyroidism.

Hypothyroidism a possible villain?

In the latest blood test, we checked my Vitamin B12 level, something we do every three months, together with homocysteine. As usual, the B12 was lowish – still within the very broad range of 145-637, but this time right at the bottom. And the homocysteine was way up, almost double what it should be. Both the high homocysteine levels and the inability to metabolise folate are linked to the MFTHR gene and can occur together with low levels of thyroid hormones, and could indicate very borderline hypothyroidism.

That my presumed hypothyroidism is very marginal is shown by the fact that I exhibit none of its most noticeable symptoms: tendency to gain weight and inability to lose it; slow thinking; thin hair and hair loss; puffy eyes; oily skin; and other more delicate comparisons – such as constipation vs irritable bowel.

What it appears I have is ‘secondary hypothyroidism’, thanks to the last year’s adrenal fatigue and my ongoing adrenal insufficiency. So possibly the borderline hypothyroidism is not so much a cause as what the medicos call a co-morbidity – connected, but not necessarily cause and effect.

Chronic condition from long-term problems

To sum it up, here’s my equation:
a lifetime of less than optimal health (as a result of choosing my parents badly), compounded by environmental factors* + an unknown viral or environmental stress in 2009 = ITP.

Not a clear cause and effect, or diagnosis and cure, but good enough to be going on with, now that what was life-threatening two years ago is pretty much under control.

Reasons to be cheerful

• My weight is pretty steady at an appropriate weight for height and build: 60kg to my 160cms and thin bones;
• I have good energy (most days)
• I enjoy going to the gym 2 or 3 times a week
• I have enough freelance work that I can manage
• I love doing coffee or going to a play, concert, discussion group or art gallery with family and friends
• I have time to write my short stories
• The jacarandas are flowering
• I feel good!

* Tasmania, my home state, has very low iodine levels in the soil, causing many people to develop gross hypothyroidism and goitres. This connection was not recognised until I was about 10, so I would not have had an optimal iodine intake during my early growing years.

Ups and Downs but Not a Rollercoaster

The infrequency of posts to this blog reflects the fact that, by and large, I have been reasonably well over the past couple of months. It’s true I find the winter cold weather much harder to tolerate than before I developed ITP, but friends and family know I have always been a bit of a wimp about cold weather, being temperamentally a lizard (or a cat).

Despite my doctor’s gloomy prediction a couple of months ago that I would be “a magnet for colds”, I have not actually come down with one, even though I travel regularly on public transport and have exercise sessions at a hospital gym with a group of COPD (chronic obstructive pulmonary disease) sufferers who frequently cough. It’s true, I’ve had days when I’ve felt distinctly unwell, and likely to develop a cold or even flu, but the slow release Vitamin C and the daily doses of cordyceps seem to kick in and protect me from the bacteria to which my low Ig2 levels make me susceptible.

Weaning Prednisone woes

But it’s not been all plain sailing. I have still lost far too many days, especially through the end of June and up to mid-July, from an unexpected reaction to weaning off the steroids. Back in May, I was comfortably on 3.5mg, having dropped 0.5mg a month without any obvious difficulties. My platelets rose steadily, the cortisol levels a little more slowly, but all was going swimmingly.

Then bang! Two and a half weeks after dropping to 3mg, I had the sort of reaction I used to get in the mornings after taking a high dose of around 20 mg – no energy, feeling absolutely chilled, no brain, shakiness, palpitations. Some days this lasted from 8.30 am to around noon. On really bad days it hung on until 2pm, and all I could do was lie on the sofa, wrapped in a blanket, hugging a hot water bottle, until I felt my energy rise and knew it had passed for the day.

Weaning Prednisone – low doses are hardest to get off

When I saw my doctor three weeks ago and complained of this horrible reaction, she checked my pulse, my heart rate and my blood pressure. All normal, even though I could still feel the shakiness. My platelets were beautifully high at 118, my cortisol levels were up to almost 50 per cent of normal, all my other blood indicators were good.

So why the lack of energy, the hammering heart, the shakes, the fuzzy brain? It’s partly due to adrenal fatigue though thankfully, I’m not completely exhausted as I was 12 months ago. The adrenals are just finding it harder to take up the slack when the steroid dose is reduced. As with adrenal exhaustion, once my energy came back in the afternoon, I was awake and raring to go in the evenings.

The lower the dose of steroids, the more likely there are to be adverse reactions, particularly if you’ve been on steroids for longer than a few weeks or months. I’ve been taking prednisone for 19 months. My body has, in a sense, become addicted to it, and my adrenals can’t always make up the shortfall when I cut the dose back. So, after my check-up yesterday, when the platelets have dropped back to 90, and the cortisol has slipped a little, we’re doubling the dose of cordyceps to give my energy levels and adrenals an extra boost.

On the bright side

Although my platelet count has slipped a bit, it’s still on 90. Twelve months ago it was around 40. As recently as May, it was yo-yoing around 45-50, and it seemed I would never get above 50. Ditto with my cortisol levels. Twelve months ago I was like the walking dead. Friends had to do most of the packing cleaning and unpacking when I moved house, while I lay on the couch “supervising”.

So, OK, I’ve had a few weeks of shakiness, palpitations, shivering etc, but they’ve gradually improved, and I‘ve had many days when I’ve felt and sounded almost normal. I’ve been able to work on my short stories and send them to competitions, I’ve written blogs, I’ve commented in online discussion groups. I’ve even joined a couple of actual social groups that meet in coffee shops, as opposed to online.

The magpies are warbling, the sun is shining and the magnolia tree outside my window has started flowering.

A Respite Phase?

For the past 6 weeks or so I have been feeling pretty good, despite being “a magnet for colds and flu”, according to my GP, because some of my immune system markers, the immunoglobulin subclasses Ig1 and Ig2 are still very low. Ig3 and Ig4 are somewhat low, but within the range, so they’re not a worry.

My cortisol levels are still alarmingly low at almost a quarter of the expected baseline level. The adrenal glands and pituitary gland are still not functioning properly. So you would expect me to be feeling slow in the mornings, and with the low immune system, liable to catch whatever is going around in the way of germs.

Not so! I’ve been remarkably well. So well that when I visited friends and family in Melbourne and Tasmania, I sensed a little disappointment that I didn’t look like I was at death’s door, as some had expected. I assured them that I HAD been at death’s door, especially when I’d had to rush to the emergency room during February’s heatwave, when a combination of heat exhaustion and crashing nausea from migraines made me very sick indeed.

But I’ve been delighted to be feeling so bright and energetic, as it meant I could finally take my brief interstate holiday, and enjoy catching up with my son and daughter-outlaw and my three gorgeous grand-daughters, other relatives and many friends, as well as the perfect autumn weather. I always feel much better when the sun is shining! I came back exhausted from so much pleasurable activity, and was surprised to find my platelets had doubled from 45 to 93, quite high for me. On the strength of that bounce, and my continuing good health, we reduced my steroids by .5mg to 3.5mg daily.

Cordyceps works – at least for me

I’ve been taking the Chinese fungal preparation, cordyceps sinensis at the rate of two 500mg tablets each morning, for the past four months. It’s been clear for at least two months that this is assisting me to maintain good energy levels despite my poorly functioning adrenals and pituitary gland, and it may also be improving my immune function.

Whether I will need to continue taking cordyceps after I’m finally weaned off the prednisone is not yet clear, but I’m happy to keep taking it, as I’ve had no adverse reactions to it, and some definitely positive effects. Without it, I think I would be far less chirpy than I am!

Weaning the prednisone – what’s ahead?

Not surprisingly, I’ve been really enjoying this sense of well-being, and of feeling that I’m almost ‘back to normal’. But what is ‘normal’ for me in this new situation of learning to live with chronic illness? Both my GP and my psychologist have warned me I will likely have setbacks – that I won’t always feel as good as I do now.

The psych gave me some very good advice, which I’m applying by writing this blog. He suggested I write a note to myself – from my well self to my unwell self. It’s to be read when I hit a setback, reminding myself that I’ve been ill before – several times during this past 18 months – and that I’ve got better, and even bounced back. That no phase is permanent – nothing in life is permanent, but just as there will be bad times with my health, so there will be good times again. The whole series of posts in this irregular blog will show me that!

Even now, in dropping the pred down to 3.5mg, I’ve had a little bit of an adverse reaction. Not immediately, but after a couple of days. I started to feel a touch shaky in the mornings, slower to get started, and at night, brief palpitations on going to bed. For two days in a row I had very little energy, and spent the afternoon of one day, and the whole of the next reading and knitting. Thank goodness for beautiful autumn sunshine – I was able to ‘convalesce’ in a comfy chair on my balcony soaking up the rays, surrounded by my plants.

On the bright side

The autumn sunshine finally induced my nasturtiums to bloom, so there were bright yellow and orange flowers to greet me when I came back from my holiday. All the herbs on my balcony are doing well – I can pick rocket, chives and parsley every day for a bit of fresh green life, the oregano and everlasting basil ares still going strong and the rosemary bush has started to show tiny mauve flowers. What a joy even a tiny garden can be!

Up and down – life on a see-saw

Well, it’s been 2 months since I last reported in this blog, and I have to say it’s been a very confusing (and somewhat depressing) period.

My last post was full of energy and optimism, even though I admitted I knew I wasn’t cured. Since then I’ve been on a see-saw, with my platelets up one week and down the next. After the magnificent 233 I had following the horrendous gastric flu back in October, they settled back down to a normal (for me) 50-60 range for a few weeks.

But once we dropped the steroids down to the borderline 5mg/day, early in December, the platelets grew skittish. Down to 25 just before Christmas, so that was Christmas and New Year wiped out, back up to 46, and then just as I was about to go interstate for a week to see my son and family in Melbourne, and my sister and friends in Tasmania, they plunged to 31. So that was the end of that little holiday!

Because of course, it isn’t just that my platelets are low. Because my pituitary is still not working properly, my cortisol readings are also way down at 50 (when they should be at 150+). Low cortisol means low energy (some days none at all), and little or no brain power. It’s back to the couch, and there isn’t even any Test cricket to watch!

As well as the platelets and the cortisol deficits, all the B cells and T cells and other components of my immune system are way out of whack too, so I have little resistance to any nasty viruses or bacteria floating around. Both Sydney and Melbourne are suffering from epidemics of whooping cough, and having had it as a child many years ago doesn’t confer the immunity I thought it would. Whooping cough immunity only lasts about 10 years, and teenagers are now given booster shots, and adults when they start families. Some medical practitioners, including my doctor, also re-immunise grandparents. Of course, I’m not well enough to risk having a ‘grandma booster shot’, so I just have to be careful – especially in doctors’ waiting rooms where there are small children!

Cordyceps – will it make a difference?

I’m very fortunate that my doctor is both a western medicine-trained GP and a fully trained Traditional Chinese Medicine (TCM) practitioner. In the past, she has prescribed mixtures of Chinese herbs to help my body cope with the effects on various organs and systems of high levels of prednisolone. Once we got down to 6mg/day, we were able to discontinue these herbs, and just supplement with daily folinic acid and vitamin B12.

However, since my adrenal glands are not recovering as fast as they should to the lower steroid dose, as shown by my poor cortisol levels, we are trying the Chinese fungal treatment cordyceps along side my other supplements. Although there are no large scale, double blind studies to show whether cordyceps works to assist the adrenals, there have been small scale trials that showed good results, and the fungus has a long association in TCM with improved chi (energy). Like all herbal treatments, it will take some time to show any results, but we should have some idea after I complete a month on it.

On the bright side

On the days when I have energy and brain power, I have the urge to write. I’ve started working on a couple of new short stories, as well as researching and writing little bits of my next novel/short story collection. My doctor is encouraging me in this effort, as opposed to looking for more income-earning writing which I might not be able to complete, as my energy drops off. When I’m working creatively, the emotional energy I get feeds back into my body, with physiological and psychological benefits, where chasing income opportunities depresses me.

The other good thing about this whole period of readjustment is trying out new recipes for my very low carb diet. On the days that I have any mental and physical energy, it’s fun looking up new ways to cook otherwise bland and boring tofu, or ways to create low-carb AND gluten-free desserts and cookies.

It’s good news week!

This month saw me reach my anniversary – 12 months since that strange and frightening day when I was diagnosed with ITP and bundled off to the emergency department of Sydney’s wonderful Royal Prince Alfred Hospital. By coincidence, I had my regular fortnightly check-up booked for the very day. And I was NOT looking forward to my anniversary!

Turns out this was good news day, not the doomsday I’d been dreading.

No, I haven’t suddenly been cured. No, neither my doctor nor the researchers studying ITP are any closer to discovering what causes it. And yes, my pituitary gland is still “screwed up” (to quote my doctor), and likely to stay that way, to a lessening degree, for the foreseeable future. Yes, the steroids are still threatening to tip me over into Type 2 diabetes if I don’t watch my diet very carefully, and they’re thinning my bones and my skin.

BUT, the good things definitely outweigh the bad.

On the bright side

I'm feeling remarkably well and most days have reasonable levels of energy. My platelets are sitting in their usual position around 50, but they're not causing any obvious problems. My blood pressure and haemoglobin level are fine, and the horrible gluggy cholestyramine is doing an excellent job of keeping my cholesterol down and fixing my kidney function, so my kidneys are no longer struggling.

Best of all, because I have been sticking to the no carbs diet, I am no longer insulin resistant. So, as long as I keep on keeping off carbohydrates and sugar, and get enough regular exercise, I should be able to keep the dreaded T2 diabetes at bay.

Regular exercise important for people with chronic illness.

I know regular exercise is important for good health, but the problem for people with chronic illnesses is if you have a bad spell (like my recent gastric flu episode), you very quickly lose condition. It becomes hard to do the things you could do when you were healthy, like walk up hills, climb stairs, carry grocery bags, or wash the floors.

Once again I have my local health service to thank for the opportunities to build up my fitness during this period of comparatively good health. I’ve been accepted into the RPA’s rehab gym, which is mainly for patients with lung and cardiac conditions. I started there this week, doing a little bit of gentle cardio on the treadmill and exercise bike, and some even gentler resistance training for my arms and upper body.

When, in a few months’ time, I get too fit to qualify for this gym, there is another section of the health service that offers continuing gym membership, supervised by physiotherapists, for people with chronic conditions. This service is not free, but is well worth the small monthly fee to continue to maintain and improve physical fitness in managing chronic illnesses.

Reasons to be cheerful

Apart from all the good news from my doctor and the pleasure of doing a little targeted exercise, I have learned to love my diet. Why? Because, not only am I losing lots of weight, but I now have to eat foods that will maintain my weight, and prevent me getting too thin.

Because I must avoid carbohydrates as much as possible, within reason, to defeat the steroid tendency towards insulin resistance, I need to replace the energy I would have got from eating bread, rice, pasta, porridge, cake, etc. And that means eating more fat.

My doctor has virtually ordered me to eat more cream, cheese, butter, bacon, even chocolate, alongside the serves of protein, vegetables and fruit. As she said: “You can have a lot of fun on a no-carb diet!”


It won’t be forever. When I finally get off the steroids, I will be allowed a more ‘normal’ level of carbs in my diet, and once more I’ll have to think very carefully about eating cream, butter, bacon or chocolate. But until then, boy, am I gonna enjoy my no carb regime!

ITP: a work in progress

It’s over a month since I last updated this blog, and that’s because I’ve had a shocker of a time. Half the month was taken up by being laid low with a nasty gastric virus. Something that would normally take someone four or five days to recover from took me a fortnight. Diarrhoea, vomiting, shivers, and a lot of sleeping. I was not ill enough to go to hospital, but not far off, and certainly ill enough to frighten my friends and family.

An interesting result from the viral infection was the way my platelets responded. I had assumed they would drop even lower than their current level of around 45, and just prayed they wouldn’t drop below 20 – the level at which my doctor and I have agreed I’ll go back to hospital. Instead, they received a huge bounce – to 233, the highest they’ve been in the 11 months since I was diagnosed with ITP.

This anomaly is explained as my immune system being so busy fighting the virus that it left my platelets alone. This shows my spleen is producing thrombocytes in the right numbers, something we hadn’t been sure about before. Now we just have to find a way to stop the immune system munching them all up when it doesn’t have something more threatening to deal with.

Because the platelets are so high, I have been able to drop the steroid dose by 0.5mg and will take off another 0.5mg again next week. Down to 5.5mg prednisone – a little closer to getting off it altogether!

Possible link with Lyme disease

Each time I have a blood test, as well as the usual full blood count, my doctor looks for clues as to what might be causing the ITP. We’ve eliminated H.pylori and gut parasites, and we’re still treating the toxic overload. Now we’re following up on a possibility of an underlying infection of Lyme disease.

For years, medical authorities in Australia have insisted that Lyme disease doesn’t exist here, because none of the 68 species of ticks have been found to carry any of the three species of Borrelia bacteria responsible for Lyme disease. However, my doctor, among a handful of others across the country, claims that patients do have Lyme, and perhaps the spirochaete bacteria is carried by other insects, particularly spiders, mites, and perhaps also leeches.

In common with some of her other suspected Lyme sufferers, I have low levels of a marker called CD57, which the very latest research says is a definite marker for Lyme disease. Because the spirochaete can drill its way into any of the organs of the body, Lyme presents with any of a combination of at least 200 different symptoms, so people with the infection can appear to have different diseases.

At this stage, we're not going to do anything about it, as it's not definite I have the disease, and the specific test is very expensive and not always accurate, but my CD57 count and low folate and Vitamin B12 levels suggest I may have contracted Lyme some time in the past, perhaps when bushwalking in Tasmania over several years, and could still have a low-grade infection of it.

Exploring the complexity of ITP

Each fortnight, when I visit my doctor and study my blood test results with her, I learn something new. This time it was the CD57 count and what that could mean. Other times, we have had genetic test results and I’ve learned a little more about my genetic makeup and how the gene expression – for instance the MTHFR gene preventing me from metabolising folate – can create conditions which cause my immune system to struggle.

I’m fortunate that, as a medical and science journalist, I can not only understand this technical information, but that I also find it intellectually stimulating to learn new facts or theories. I imagine for some ITP sufferers, or sufferers of any serious or chronic illness, this information load could be rather daunting and maybe, depressing.

On the bright side

The cholestyramine ‘glug’ that I’ve been drinking for three weeks (with a break during the gastric episode) is having the desired effect. As well as lowering my cholesterol very satisfyingly, it is pulling out the toxins from the Staph aureus. At last my daily – and often day-long – headaches have stopped! Not only do I feel brighter, but I’m actually itching to get back to writing my short stories.

And another reason to be cheerful: I no longer have the steroid pumpkin face and look almost normal again!

Unravelling a possible cause of my ITP

It seems likely that my fluctuating thrombocyte numbers are an indication of an underlying susceptibility to biotoxins (toxins produced by animals, plants or microorganisms). In my case, blood tests and nasal swabs have shown I’m quite heavily infected with two, possibly three strains of Staphylococcus – S. aureus and S. epidermidis, collectively known by the cheerful acronym MARCoNS (Multiply Antibiotic Resistant Coagulase Negative Staph).

Immune evasion proteins (biotoxins) from Staphylococcus have been implicated in chronic illnesses such as Lyme disease and fibromyalgia, by biotoxin researcher Dr Ritchie Shoemaker and could be responsible for ITP in people with genetic susceptibility to them. S. aureus, in particular, is structured to produce toxins that are directed at the two key elements of host immunity: complement and neutrophils, helping it to survive the body’s immune response mechanisms.

Toxic overload!

The latest hypothesis of why I developed adrenal fatigue, and why my platelets keep bouncing up and down, (but never as high as my doctor and I would like), is that I’m suffering from a toxic overload from these Staph infections. As they are known neurotoxins, these toxins directly affect my pituitary gland, leading to the lack of a hormone cascade that results in the adrenal insufficiency or even exhaustion. Add to this my genetic inabilities to metabolise folate and digest gluten-containing foods, and possible susceptibility to the heavy metal, mercury, contained in my old amalgam fillings and you have a recipe for chronic illness that has been gently cooking for most of my life.

Treating toxin overload

Assuming this hypothesis is correct, can we eliminate the toxin overload? My doctor and I have hopes we can, based on Dr Shoemaker’s research. First step is to attempt to eliminate the toxins from my body. This is apparently why I have such terrible bouts of diarrhoea every few weeks!

My fluctuating thrombocyte counts – up to 50, down to 42, down again to 34, and hopefully back up to 50 soon – are like the canary in the coalmine. When my platelet numbers are down, it’s usually the week that I’m having diarrhoea, the huge headaches, and generally feel like s—t, while they bounce up again the following week when I’ve eliminated some toxins, my headache is bearable or hardly there, and I’m feeling pretty good.

We’re going to try to control the diarrhoea and still aim to eliminate the toxins by using anhydrous cholestyramine, commonly prescribed for lowering blood cholesterol levels. The powder is mixed with a glass of water or juice to make a gluggy gelatinous liquid, taken two or three times a day. The cholesterol-lowering effect will certainly be handy, as the prednisone and a high meat, egg and cheese diet have certainly pushed my total cholesterol levels to dangerously high! But the main aim is to bind the Staph toxins with the cholestyramine, which is not absorbed by the digestive system, but passes out in the faeces, together with whatever it has bound.

I shall be on a regime of 8-12 grams a day of this “glug” for two weeks, then more blood tests to see what’s happening. We may well alternate the cholestyramine with doses of high strength antibiotics to attempt to wipe out the Staph infections, and these alternate fortnights of antibiotics and “glug” could last for the next two months.

Diet plays a part, too

My diet has been modified yet again, to maximise the benefits from the new regime. As there’s a possibility that some grains provide a cosy environment in the gut for Staph organisms, I am now having to avoid all grains, even rice, whenever possible. I have been allowed one or two slices of gluten-free bread a week, just to give a base for toasted cheese! I’ve packed away my bread maker for the interim, as there’s no sense it taking up bench space, and no point making a loaf of home-made bread, when a store-bought packet will keep in the freezer for a fortnight.

I’m getting used to eating what I consider a version of the Paleolithic diet, although I’m sure my hunter-gatherer ancestors never enjoyed Greek yoghurt, fresh Parmesan cheese, or olive oil! The only major problem is what to eat for breakfast? Since every meal at present must contain some protein, and there is some doubt whether I should eat legumes, it’s animal protein, and that means cooking! Breakfast is the most important meal of the day, but it also the time of the day when I’m least coordinated and functioning. Cooking porridge was something I could do pretty much in my sleep. Now I have to decide WHAT to cook – eggs, bacon, cheese, fish, left-overs - and HOW to cook it without setting the kitchen or myself on fire!

Always look on the bright side of life…

The best thing I’ve discovered about this high meat diet – apart from the pleasure of rediscovering my British cooking roots with stews and casseroles like Lancashire hotpot – is that I can indulge my love of roast lamb with rosemary and garlic. Mmmm!!

No wonder I’m exhausted!

It’s been over 6 weeks since I last documented my struggle with ITP, or, more optimistically, my experience of life with this autoimmune condition. A lot has been going on over this time, most of it seemingly in slow motion, despite its obvious urgency, because of my lethargy and general sense of exhaustion.

The major event that I’ve struggled through – with the physical support of a few good friends, and the moral and financial support of my family – has been the move from my two bedroom inner-city apartment to a much smaller one-bedroom place in a nearby residential suburb. I’ve exchanged the constant roar of traffic, beeping car alarms and sirens with the sounds of lawn mowers, leaf blowers and planes taking off and landing (under the flightpath of Australia’s busiest airport), as well as raucous calls from wattle birds in the street’s flowering bottlebrush trees.

Thank goodness for all the help from my friends with this move, as I was almost incapable of any action, thanks to the constant, daylong headaches, shakiness, palpitations and just sheer exhaustion. I’m very grateful to them all!

At my last doctor’s appointment before my move, she referred me for a CT scan to check for any physical damage to my pituitary gland. We already knew from blood tests that it wasn’t producing enough of the hormones ADH (which controls kidney function), ACTH (makes the adrenal glands release cortisol) and TSH (thyroid stimulating hormone). So the adrenal and thyroid glands weren’t getting the message to produce their own hormones, and I was getting no energy.

Early this week I had the CT scan, and to everyone’s relief, my pituitary gland, and all the rest of my brain, is physically fine. No visible damage anywhere – no tumours or lesions, nothing. Phew! So, all the lethargy, etc, etc, are yet another score against the prednisone. To be fair, that medication has kept my platelets at 50 for the past three weeks, despite all the stress.

Adrenal Exhaustion

What I do have are the classic symptoms of adrenal exhaustion or adrenal fatigue. (Other names include non-Addison's hypoadrenia, sub-clinical hypoadrenia and hypoadrenalism).

Symptoms of adrenal exhaustion include:
• excessive fatigue and exhaustion
• non-refreshing sleep
• sleep disturbances
• frequent urination, especially at night
• overwhelmed by or unable to cope with stressors
• craving salty and sweet foods
• feeling most energetic in the evening
• low stamina, slow to recover from exercise
• slow to recover from injury, illness or stress
• difficulty concentrating, brain fog
• poor digestion
• low immune function
• excessive sensitivity to cold
• food or environmental allergies

We already knew I had food allergies, thanks to the single gene for coeliac disease I possess. Low immune function is not surprising, since the prednisone is deliberately damping my immune system to prevent it destroying the platelets. However, it’s not much fun that it’s apparently suppressing the pituitary and/or the adrenals and thyroid.

Treating Adrenal Fatigue

Since the adrenal fatigue is complicating matters, slowing down the gradual reduction of the steroid dose my doctor and I have been aiming for, as well as generally making life pretty miserable, we are working to reverse it. First up, my Chinese herb formula has been reworked to include larger doses of adrenal stimulating herbs.

Meanwhile, as we wait for the herbs to kick things along, my doctor is continuing her research into hydrocortisone as a replacement for prednisone. Basically a natural steroid, hydrocortisone has a slightly different action from the corticosteroids, but it can also cause some problems in the changeover period, so we are proceeding cautiously.

Heavy Metals, Pesticides, Plastics Residues, Mould?

Other possible causes or contributing factors for my general lack of oomph could be heavy metal contamination - such as mercury from amalgam fillings in teeth, or eating too much fish and seafood; pesticides; plastics residues (from plastic water bottles, takeaway food containers) or mould toxins.

There is a method of ‘detoxing’ the body to remove these contaminants that is widely used in the veterinary and agriculture industries, and has long been recognised by Traditional Chinese Medicine. It’s a series of naturally-occurring minerals, zeolites, colourfully described as “nature’s sieves”.

The honeycomb-like structure of negatively-charged zeolite particles enables them to attract and electro-chemically bond with toxic minerals and metals such as lead, copper, aluminium, cadmium, nickel and arsenic, which can then be excreted safely from the body. However, like all detox treatments, taking zeolite drops can be a strong therapy that an already exhausted system might find overwhelming, so that’s another path we’ll be treading cautiously.

Other medical applications of zeolites include stimulating the immune system, treating osteoporosis, and the healing of wounds and surgical incisions.

On the Bright Side

The best thing about the past few weeks (apart from all the support I’ve received), is that my new balcony faces north. All-day sun in the middle of winter! (On the sunny days, of which we’ve had several). I can sit out with a drink and a book, watch the birds in the trees or just lie back in my canvas chair and soak up the rays! Nothing like sunshine for lifting the mood!