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.