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!!