• No one knows what causes the thyroid gland to become inflamed after pregnancy. It usually arrives without warning or reason, and often stays for life. (Getty Images)
Having a baby should be one of the most rewarding experiences in a woman's life. But for up to 10 per cent of women who develop an autoimmune thyroid dysfunction, post-pregnancy, giving birth signals the start of a serious chronic illness that could be temporary or last a lifetime. Jacqueline Malafiej tells of her experience living with postpartum thyroiditis.
By
As told to Yasmin Noone

10 May 2016 - 1:03 PM  UPDATED 10 May 2016 - 1:03 PM

In 2008, when I was 31, devastatingly, my newborn son died as a result of an undiagnosed complication, vasa previa, during labour.

Three months later, my hair started falling out and I was feeling really hot and humid all the time. I had sweats and heart palpitations. I was born with a slight tremor in my hand (so I’d never be a surgeon), but overnight it just seemed to magnify.

So I went to the doctors to investigate why I wasn’t feeling myself. They said 'at about three months post pregnancy, it’s typical for women to present with these symptoms, plus you've experienced a significant shock and loss - you’re going through the grieving process!'

Luckily, they did a blood test anyway and found that my thyroid antibodies were off the charts. I was hyperthyroid meaning I had an overactive thyroid and it was producing too much thyroid hormone for my body. It was thyroiditis postpartum – a condition that some women get after pregnancy.

"In the 11 months since I had been diagnosed, I’d lost like 14 or 15 kilograms."

They started me on Asprin to see if they could bring my thyroid antibody levels down but that didn’t help. So I was put on the medication Thyroxin and had to keep getting blood tests so they could work out what level I should be on and fine-tune the medication. But I still couldn’t sleep and my hair didn’t stop falling out. In the 11 months since I had been diagnosed, I’d lost like 14 or 15 kilograms.

I then swung from hyperthyroidism to hypothyroidism, an underactive thyroid where my body produced too little thyroid hormone, as I was later diagnosed with Hashimoto’s disease. That’s when I got all of the opposite symptoms like brain fog, exhaustion and feeling sluggish.

It’s thought that with postpartum thyroiditis your body’s hormones swing back and forth from one extreme to another after pregnancy. And when it came time for the swinging to stop, my body settled on Hashimoto’s.

It was all just awful and I couldn’t believe it was happening to me on top of everything else!

After I was diagnosed with it, the doctors asked ‘does your mother have Hashimoto’s as it is heredity? At that point, my mum pushed her GP for a test and they found out she had Hashimoto’s

I was later referred to an endocrinologist. She did a few blood tests and checked my glands and said I’d be in a state of flux for a while. ‘Just stay on the medication, we’ll fine tune it and it will work’.

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What is 'normal', anyway?

Eventually my thyroid levels started to stabilise. But I just got so frustrated because I wasn’t feeling normal even though my blood test came back indicating I was within the ‘normal’ range. I was putting weight back on very quickly. My GP started investigating if I was a pre-diabetic and in doing so, she found that I also had polycystic ovarian syndrome.

Before I was pregnant, I was regular and healthy and now here I was with a middle tyre around my waist and yet the blood test still showed I was ‘normal’.

And all of these terrible things were happening, all at the same time. The doctors thought my poor health was part of a psychological and emotional response to significant events in my life.

At same time I started to develop hives, which was also symptomatic of Hashimoto’s. I’d also swell up overnight: sometimes my body would just balloon and my fingers would look like a handful of sausages.

Not everyone will have such a bad experience of Hashimoto’s, as thyroid issues do vary person-to-person, but many people do. At certain times, for me, it’s been quite bad and I know that because of the dosage of the Thyroxin I was put on, along with the significant variances in my blood results. But people say to me: ‘you look fine. You say you’re tired but you don’t have dark circles under your eyes and you turn up to work and functions upright, so you must be okay’.

"At same time I started to develop hives, which was also symptomatic of Hashimoto’s. I’d also swell up overnight: sometimes my body would just balloon and my fingers would look like a handful of sausages."

I’m a type-A personality so I’m outgoing and try to push through whatever I’m feeling, and downplay it rather than go on about it: unless you have something visible; a sling, carry crutches or are in a wheelchair, people don’t take you seriously when you are really sick.

But what people don’t understand is the gravity of autoimmune disease and how it impacts your energy, your ability to focus and your desire to even socialise with people.

A holistic approach

About a year ago, I was at the point where I was getting increasingly frustrated I wasn’t getting any better even though the GP said my thyroid levels were normal and I didn’t feel I was getting the right treatment from the endocrinologist either.

So I started looking around for answers and found an integrative GP who I’ve been seeing since. I took five to six years of blood test results to her. It was from this GP that I learned that you may be within a range of lab results but there is an optimal range you need to be to be healthy. But your standard GP just looks at the blood test and says you are ‘within range’.

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She did an adrenal test, vitamin D and liver function test. I was dangerously low on vitamin D, tried a supplement for months without any change so I got an injection, which boosted my levels. lab tests also found I had a gene mutation; my body does not have the ability to process some B vitamins, important for maintaining energy and stress levels - the technical term is methylation. That meant if I was taking something like a vitamin B supplement, it was passing through me without being processed. I was literally peeing money down the drain. So I now get methylated B vitamins from overseas, online.

They say that if I fix my leaky gut – inflammation is 80 per cent in your gut – you might start to heal your body. Gluten is poison to my thyroid, as is sugar. I’m a foodie, so for me, the hardest thing to do is to cut back on those things. Making those changes will be a slower burn for me but I see the benefit in the long run.

Finding that 'magic' point

As far as getting pregnant goes, I’m looking forward to the day I can be a mother again. It will be a very anxious time for me, fearing what could go wrong because of pregnancy and outside of pregnancy, because I have a thyroid condition – Hashimoto’s alters your biochemistry and you have to alter your medication from the moment you fall pregnant to prevent a miscarriage and the baby having developmental complications. So I think I’ll be on tender hooks the whole nine months because I don’t want anything to go wrong and because I have already experienced the loss of a child.

"I’d like to come right off my medication even though they say it’s for life. I don’t know if it’s possible but I want to try."

"I am optimistic about how my health is improving but at the same time, I realise good health and wellbeing for me will be about finding that magic point where everything falls into place..."

But before I have another baby, I want to get my body as close to normal as it can be…Ideally, I’d like to come right off my medication even though they say it’s for life. I don’t know if it’s possible but I want to try.

These days, my fingernails still peel and my hair falls out from time-to-time. But my brain fog is lifting. I feel more grounded. And I feel like I’ve got the information I need to equip me to improve my health.

I am optimistic about how my health is improving but at the same time, I realise good health and wellbeing for me will be about finding that magic point where everything falls into place, where the brain fog will totally go, the swinging symptoms go, the sluggishness and weight gain goes, as does the swelling of my joints.

I’m waiting for that day…

For more information on thyroid disorders or for support, contact the Australian Thyroid Foundation.

 

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