Friday, October 10, 2014

Christmas 2006 - August 2008, in which I become hyperthyroid but Graves is never mentioned.

My parents are arriving in several weeks to spend Christmas with us.

Out of the blue I develop a severe nervous tic in my left eye and experience regular bouts of my heart racing (Doctor Google tells me this is "tachycardia" and this is later backed up by the new round of medical professionals in my life).

At this point "something's not right" becomes very pertinent.

I don't LOOK ill, I don't particularly feel ill.

I feel (from notes I made in the daily journaling I was doing) - nervous, anxious, worried, fuzzy, irritable, really nervous.

I am suddenly terribly worried about my parents' visit.

I am also piling on the weight like there's no tomorrow despite walking regularly, eating well and breastfeeding.

Back to my doctor I go.

She again orders blood tests, a thyroid panel.

And tells me I am "hyperthyroid". She is concerned but happy for me to visit a naturopath to see what can be done whilst also booking me in for a visit to the local hospital's endocrinology unit in four months' time.

My naturopath looks at the numbers on the print out and puts me on an incredibly vile concoction including a herb called coleus, which has me asymptomatic within a week and I go on to enjoy Christmas and the first part of 2007.

I trot along to have an ultrasound on my thyroid and then to have a biopsy of several of the nodules that were detected during the ultrasound.

I am conscious for the biopsy, my throat is numbed and I'm delighted to be able to watch the entire procedure on a screen just up and across from my face. The doctors are very kind, very thorough, explain that yes, they're looking for cancer but also reassuring. It's been, hands down, probably my most positive hospital and the medical end of endocrinology to date.

After my biopsy I walk across the road and climb into the car where my husband and three children are waiting and we take ourselves south to camp for a few nights in a beautiful coastal landscape.

At easter time I do something incredibly stupid. I fall off a trampoline, stone cold sober I might add, and snap three bones in my foot.

I am transported to hospital, put on a morphine drip and (it is acknowledged later) accidentally given far too high a dose.

Coincidentally my hospitalisation coincides with my endocrine unit appointment so whilst I am being absolutely violently ill and barely conscious, thanks to the morphine I find my bed surrounded by medical students on rotation and two endocrinologists who tell me I am severely thyrotoxic and that is why I am vomiting and whether or not I want to have a heart attack and die. Many people peer at me. Not a single person prods my thyroid. I am left some tablets and told to take them.

So I take them.

Propylthiouracil or PTU for short.

And feel absolutely and utterly vile. Now it's more than likely that a great part of the "feeling vile" is due to the painkillers I was on for my broken foot. But vile I felt and I called the endocrinology unit and told them that a) I was feeling vile and b) I thought my liver was out of whack with the medication they had put me on.

The head endocrinologist sputtered with amused disbelief. "How on earth would you know if your liver was out of whack?"

So I suggested he run some liver function tests to find out. Though I didn't know they were called Liver Function Tests or LFTs as I now know them, being sadder and wiser and better educated these days. I just said, well check my liver and see and lo and behold, despite the patronising scoffing, I was right.

My LFTs have been "in the red" ever since. That's seven years. There have been improvements at times. But I've not yet had an LFT that has come out "in the black" since Easter 2007.

I remained on the PTU, albeit in increasingly lower doses and had my thyroid panel checked regularly.

This continues until July 2008 when, though you'd think we knew how it worked, I discovered we were having a fourth child.

PTU was immediately discontinued and I had a plethora of testing to ensure the baby wasn't going to have issues due to my age, the PTU and the virus the entire family had been suffering from apart from me.

The child is fine and five years' old and part from being ridiculously adorable at times, just like every other five year old we've known.

I was given the all clear by the endocrine clinic in August 2009.

What I discovered much later was that there had been no monitoring of my thyroid antibodies just simply TSH and T4.




In which we start at my beginning.

Mid 1998, I discover that not only am I miscarrying again but that my thyroid levels are off.

This is astonishing in one respect, the news is delivered by several health care providers who must assume universally I have basic medical training.

I do not.

I have an Honours degree in Archaeology. Thyroids are not big in archaeology, though, like everything, I'm sure there are niche areas in every discipline.

So I absorb the information and go on to miscarry again.

Five days before Christmas. I have been married less than two years. Third miscarriage in the time it would have taken me to carry a single child to term.

Thyroid is mentioned again.

Many changes are wrought - my husband, to whom I am alternately clinging to like a limpet and raging furiously to leave me, and I move interstate and without my thyroid being commented upon are subjected to a bevy of interesting medical procedures.

March 2000 I am delivered of a daughter. This is is wonderful. We go on, without even using the word thyroid in a scrabble game to add a son to our family.

In 2004 we decide to try for another baby and somewhere at about six weeks pregnant I spend most afternoons hanging onto the toilet base for dear life while my small daughter makes her even smaller brother dinner by getting milk out of the refrigerator, weet-bix from the cupboard and mixing them together in bowls. After several weeks of coming home from work to find us thus arrayed across the house, my husband suggests I should visit our family doctor.

She orders blood tests and my thyroid is mentioned again. Apparently it is "low". She may have elaborated on this but I was too busy trying not to be ill in her pot plants. She suggests medication as a last resort and asks me to increase my iodine intake.

Luckily I had had the forethought despite being marooned on a raft of grief, of getting my medical records from my previous doctor, one of the many who mentioned my thyroid was "off" during my year of miscarriages and dimly I remember to tell my family doctor this.

The term "subclinical hypothyroidism" is bandied about - a subject I shall return to with reasonable ferocity in a later post.

I increase my iodine (by eating kelp and prawns) and I stop being dreadfully ill and enjoy the pregnancy. We move house. The birth goes very well.

I am a mother of three, life proceeds with its ups and its downs, there is great sadness (my mother in law dies) and great joys.

My thyroid is not mentioned again for a while.