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!

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.

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!