Living with Hypoparathyroidism

spinach

This month I learned a new word: hypoparathyroidism.

Not only is it quite a mouthful, but that one word has made me evaluate how every single piece of food I consume is linked directly to the health and wellbeing of the me today – and that of my future self.

I’ve had hypoparathyroidism for 18 months, however it wasn’t until I saw a new registrar at the hospital four weeks ago, that I even knew the condition existed. Before I start explaining this life-changing condition, let’s rewind back to September 2013.

I’d had a lump in my neck all summer, it had been a busy one; I’d been building a temporary forest in the middle of Manchester City Centre, trying to sell my house, arguing with my ex, travelling to Bristol every weekend and trying to juggle a busy job with an even busier blog. I’d had a virulent throat infection which had made my throat and lymph system swell up – so having a small swelling at the front of my neck was no issue, I was burning the candle at both ends, I was run down, it was an infection…

My GP sent me for an ultrasound to see which lymph nodes had an infection and 18 hours later the hospital rang asking me to go in for a biopsy. Long story short, I had well-defined papillary thyroid cancer with metastasises in the lymph nodes in the left side of my neck. It was a scary time and in the second week of November I had a seven hour op to take out my thyroid and all the lymph nodes from the left side of my neck.

At the same time, two of my parathyroids (these are important, they’ll appear again later) were salvaged from the back of my thyroid and inserted in the disease free side of my neck. I came round in hospital and didn’t even mind the microwave mush the MRI had the cheek to call food, because the morphine made everything ok.

Two days later (Sunday) I started to feel funny – I suppose I’d been feeling off since my op on Friday, but I’ll say one word: morphine. I got up, fell over and immediately went into convulsions, extreme pins and needles spreading over my entire body and my extremities cramping up as I started to have a seizure. I have to say it was the scariest moment of my life  – I couldn’t breathe, I thought I was going to die.

My parathyroids, four little glands find behind the thyroid (parathyroid means ‘behind thyroid’, there is no relation in function), had stopped working. This meant I couldn’t process calcium and I had very quickly slipped into tetany and had to be put onto a calcium infusion, which added a large amount of calcium directly into my bloodstream (why no one bothered to check my calcium levels after a thyroidectomy, I still don’t know). For more about hypoparathyroidism, read THIS.

After being discharged from hospital I’ve had a blood test every month (down from every week) and it’s apparent that my parathyroids no longer work, so I now have to take a lot of calcium in tablet form – 1,500mg everyday (equivalent to five pints of milk), plus Vitamin D (to process said calcium) and ensure I eat a calcium rich diet.

So what does hypoparathyroidism mean for me and the rest of my life? It’s time to eat more calcium containing foods – I thought I was doing quite well, but it seems I may have been a calcium dodger for most of my adult life; I’m not one for bread (flour is fortified), I hate cereal (also fortified), oranges (surprisingly good calcium stores) don’t feature regularly in my diet and I eat a fewer greens than I should do. I also need to eat more magnesiumpotassium and vitamin D.

Spinach, broccoli and kale are all
high in calcium, low in phosphorus

Does that mean that I’m allowed to mainline dairy now? Well… not exactly. Dairy, beans and nuts are a great source of calcium, but they’re also a source of phosphorus. Now my parathyroids aren’t there to get rid of extra phosphorus it sits in my kidneys, damaging them over time and pulling calcium out of my bones (bad) and dumping it in random places around my body (super bad). So some of the food you’d immediately think of eating to up your calcium need to be eaten in moderation.

A good start can be made by eating less protein (a high protein diet isn’t good for anyone, but that’s
an argument for another day), cutting down on chocolate, cutting down my rampant coffee intake, curbing how many tomatoes I eat (a lot) and cutting out things like charcuterie and bacon apart from on high days and holidays. And never drinking cola. Ever. Even non-hypopara females should cut out cola (ladies are at a much higher risk of osteoporosis, it’s all to do with our oestrogen).

Plus alcohol, fats, wheatgerm (as in brown bread), salt and sugars need to be curtailed too, as they all block the uptake of calcium, as does spinach and rhubarb (thanks to their high quantities of oxalic acid).

And what else can I do? Exercise is important, especially weight bearing. So I’ve started running and cycling. I’ve started a food diary (tracking some debilitating headaches I keep having) and I take far more notice of how I’m feeling on a day to day basis – tingling and cold? Get some calcium in my quick! Stress is also something I need to avoid, as cortisol pulls calcium out of your bones – so meditation and yoga are starting to feature in my life.

As you can see, hypoparathyroidism isn’t an easy condition to get on top of. We all process minerals differently, so what works for one person, won’t definitely work for me. And it’s quite rare, so there aren’t that many people to give you advice. After googling the condition last month, I went into a state of panic, would I get cataracts, Parkinson’s and osteoporosis? What about kidney disease? What can I eat? What can’t I? My diet became seriously restricted and I hid my large collection of cookery books, thinking I’d never be able to make recipes from them again.

I’m still learning, a lot. There’s a lot of information to absorb and every mouthful of food I take is a quandary, every time I have a headache, am cold or can’t think straight I have to think if it’s a symptom or is it just a cold day?

Luckily for me there’s a wonderful support group call HypoparaUK, who have explained which specialists I need to be put forward to see, have told me it’s ok to eat a little bit of chocolate (cocoa is packed with phosphorus, I feared for the world when I though chocolate was banned) and that most foods are ok in moderation. They’ve also helped me to understand my symptoms of low/high calcium (they manifest differently person to person) and helped me to understand why my moods have been so affected.

From now on I’ll have constant blood tests, I’ll be monitored by a specialist endocrinologist (when I manage to get off the waiting list) and I’ll always needs to be careful with what I eat. Have a seen a difference in changing my diet these last four weeks? Yes; I’m slimmer, happier, my skin is glowing, I’m less fatigued and the only problem at the moment is the headaches – so I must be doing something right.

But it’s got me thinking, shouldn’t we all be mindful of what we put in our bodies day after day (and not just after a particularly heavy weekend bacon and booze binge)? We’re a finally tuned mass of cells, organs and processes; we need a steady balance of the right vitamins, minerals, electrolytes, carbohydrates and proteins to keep us functioning efficiently and effectively, not to mention to ward off easily preventable, debilitating and life shortening diseases.

As I’ve alluded to before, I’m not a fan of the fad diet – everything we eat contains trace elements that we need, so cutting out a whole food group (unless you have an allergy or a medical reason) can do nothing but cut out a whole range of much needed nutrients. I’m as guilty as the next person for wondering whether I should follow some much hyped paleo, clean eating, protein heavy, celebrity endorsed money spinner – but the more I look into my own diet, the more I reject our current love of the faddy, trendy or down right ridiculous. A blow out is out, but cutting out or relying heavily on one food group – that’s never going to work.

There’s a lot to learn and a lot to consider, but let’s all raise a milky drink and some kale to being a little more mindful (and sneaking in some cake on our holidays).

4 Comments

  • Thanks for all this really interesting information. I wonder if all of us who have thyroid problems have some of this hypoparathyroidism as well? All things in moderation is a well tried maxim and one we should all adhere to I feel.
    Good luck with finding the balance, Sarah.

    • noshcreatives says:

      Hey Meryl, I’m not sure as I know they operate pretty much independently, the problem seems to be when you’ve had thyroid surgery as the paras get damaged. However I do think have thyroid problems will mean the condition manifests itself in you in a myriad of ways, as the thyroid does so many things in the body – I know that even having mine out nearly two years ago is still causing random symptoms! Thanks Meryl, hope you’re coping well?xx

  • Mandy Broadbent says:

    Sorry I havent seen you in quite a while now (I’m the woman with the big german shepherd cross pooch in the village. Ive just been reading your article on hypoparathyroidism very interesting, thank you for sharing this with us. Happy New Year Mandy & Elisha x 🙂

    • noshcreatives says:

      Hi Mandy, great to hear from you and glad you liked it. Marcel’s had a poorly leg so not been out much- hopefully bump into you again soon x

Leave a Reply

Your email address will not be published. Required fields are marked *