Misdiagnosis - why it's ok to google your symptoms

Ever had a Doctor speak to you a bit rudely? Ever had a Doctor roll their eyes when you've said ‘I googled my symptoms and I'm worried it could be this?’ Ever felt like your concerns weren't taken seriously and you were fobbed off with a vague diagnosis? Well, I certainly have, for years in fact and it ended up causing me quite a bit of heartache, and led to one very scary and dangerous pregnancy. 

Back in my early 20's I always seemed to get sick. If anyone had a cold, I would get it. I would get headaches daily, migraines regularly and I was always tired. I found a bulk billing GP in my neighbourhood that was nice enough, but he was big on discouraging ‘Dr Google’ and lectured me so severely once when I said I had googled my symptoms, that I simply stopped googling medical stuff, believing him that it was a bad thing to do. 

I would see him fairly regularly whenever I had a cold or needed a script, and I would always mention that I suffered regular headaches and was constantly tired, as well as always getting sick. He never seemed concerned and always fobbed me off with some vague reason of why I constantly felt crap.  

In 2005, when I was getting the results of a blood test he commented that my calcium levels were unusually high. When I asked what high calcium levels could mean he said ‘not much.’ And that was it, never mentioned again, no follow up blood test or anything. I moved house after that and floated around between a couple of different GP's over the years but I was starting to get tired of doctors treating me like I was an idiot for questioning why I was always getting headaches and tired constantly. 

Finally in 2012 I was diagnosed with an under active thyroid and put on thyroxine hormone pills. Even after getting this diagnosis I was never given a lot of information about what hypothyroidism was, what was the underlying condition or what this meant for my future. Worst of all I was discouraged from asking questions or researching the condition myself. I later found out from a specialist the cause of my under active thyroid was an autoimmune disease called Hashimoto’s disease, where your immune system attacks and damages your thyroid gland. Now I understand why I was always getting sick, and why my eyebrows are patchy and my hair is thinner than ever and hardly grows! 

Fast forward to 2013, when I was pregnant with Charlotte, and one of the endocrine specialists at the hospital asked me if I had ever been told that I had high calcium levels? I said ‘oh yeah, a GP told me that years ago’ and she looked very concerned. She told me high calcium levels are definitely not ‘not much’, and it was indeed something serious. They told me that there was only 3 things that would cause high calcium levels; cancer, a genetic disorder, or primary hyperparathyroidism. The signs pointed to primary hyperparathyroidism. I had to go through a whole raft of tests to confirm this, including a nuclear sestamibi scan. 

So, what the hell is primary hyperparathyroidism? That was my first question. I didn't even know what a parathyroid was, let alone what could go wrong with them. Well the simplest explanation is that it is a benign tumour on one of your parathyroid glands, or an adenoid. A parathyroid gland is a tiny gland the size of a piece of rice, that sits parallel to your thyroid gland, and generally you have 4 of them. They control the amount of calcium in your blood, and when they go haywire they start stripping calcium out of your bones and depositing it into your blood stream. It's a rare but serious disease that will slowly cause your kidneys to fail, give you osteoporosis, cause high blood pressure and heart palpitations; so the longer it is undiagnosed, the more damage that it does to your body, and if left untreated it will eventually kill you by kidney failure. It's a relatively easy fix though with surgery, thankfully. 

Hyperparathyroidism is rare in young people, and very rare in pregnancy - but very risky for both mother and baby. The mother has an increased risk of severe morning sickness (hyperemisis gravidarum), as well as an increased risk of pre eclampsia. The risk of miscarriage can be very high, up to 80% well into the second trimester, as well as serious problems in the development of the baby's own endocrine system. The baby is also at risk of premature delivery and small birth weight.

Because my body was producing so much calcium there was a risk that my baby's own endocrine system may not develop properly, and after birth she had a high risk that her own calcium levels would drop dangerously low. We were told that she may suffer seizures, or tetany (severe cramps) as a result. I met with several endocrine specialists and surgeons who all debated whether to perform surgery to remove the parathyroid gland during the pregnancy, or to wait until after delivery. There were two reasons why they decided to wait until after surgery in the end. The first was that I couldn't have the nuclear sestamibi scan to show exactly which parathyroid gland had the tumour while I was pregnant, which would lead to a longer and riskier surgery, and by the time the diagnosis was made and confirmed I was into my third trimester and the risk of general anesthetic causing early labour was too high.  

This was one of the most stressful periods of my life. I had suffered my back injury while all this was going on, and was in such severe pain I could hardly move. I was sick with worry that my baby was going to be unwell when she was born, or have permanent damage to her own endocrine system. I was so angry at that stupid Doctor telling me that high calcium was nothing to worry about, and I was angry at myself for believing his rubbish speech that googling medical symptoms was a bad thing to do. If I had of googled what high calcium meant for myself I would have seen that it was indeed something serious, and then I could have sought help from a specialist and had the appropriate surgery before I got pregnant, and not had to put my daughter in danger before she was even born. I was angry that all the doctors I had seen over the years just ignored me when I said I always had headaches or that I was constantly tired (two big symptoms of hyperparathyroidism) and not one took me seriously or looked at my calcium levels - which were right there in my blood test results - to see that something wasn't right.  

So, what happened? At 35 weeks the obstetric team gave me two shots of steroids to help the baby's lungs, because it was likely she would come early and be a low birth weight. At 37 weeks I found out I had developed pre eclampsia, and the obstetrician said the baby's growth had also slowed, so we really needed to get her out. I was induced that night and delivered a beautiful healthy baby girl the next morning. Charlotte was 3.7kgs (8 pound 2 ounces) despite being 3 weeks early, so I would hate to have seen how big she would have been at 40 weeks!! Despite all the risks, our little miracle baby had perfect results for her calcium levels 24 hours after birth, and her only complication was that she had jaundice and needed to spend 24 hours in the ‘billi blanket’. There is no word to describe the relief I felt that she was perfectly healthy, and to this day I still consider her an amazing little miracle.  

As for me, a few weeks after giving birth I had the nuclear sestamibi scan which showed I only had one bad parathyroid gland, and when Charlotte was 5 months old I had the surgery to remove that parathyroid gland. Bone density scans reveal that I have been left with osteopenia (half way to osteoporosis) because the condition was undiagnosed for 8 years. I don't get daily headaches anymore, and in the weeks after I had the surgery I actually could feel a difference in my energy levels. Sadly, my hypothyroidism, chronic pain, hyperactive toddler and ninja napping baby regularly rob me of energy so I still feel tired all the time! Still, no daily headaches and my kidneys not slowly failing is a win in my books! 

So the lesson I have learnt from all this is that it is ok to Google your symptoms, test results, or diagnosis, and then ask more questions. It's ok to look for a Doctor that treats you respectfully rather than like just another billable patient, and it's definitely ok to say that you don't agree with their diagnosis and seek a second opinion. If you feel like you're not being taken seriously then it's time to change doctors. Trust your instincts - you know best when something is wrong. Don't be scared to speak up! Maybe if you follow your instincts you can avoid a serious misdiagnosis like mine!   

Happy Googling!