Too Much Milk?

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That’s what you’d think, isn’t it, if someone told you that there was too much calcium in your blood!

Well, that’s what I thought when, two months ago, I was told by my obstetric medicine consultant that my blood calcium was too high, during a routine check up at the antenatal clinic.

But before I go in to what’s happened in the last month, let me go back to the beginning of this story.

A (not so) Brief Medical History

My medical journey began back in my my teens. Like many youngsters I had both my tonsils and my appendix removed before the age of twenty. I also had a cyst drained from my synus on a couple of occasions, by the same ENT surgeon who removed my tonsils. I went on to be diagnosed with endometriosis (an autoimmune disease) and polycystic ovaries and remained under the care of a gynaecologist for many years, having two operations to help reduce the pain caused by the endometriosis.

Late 2011, I returned to my gynaecologist complaining of fatigue, lethargy, aches and pains. I thought perhaps this was down to the pill I was taking and asked if we could look into it. Following some blood tests, I was re-reffered to the ENT specialist, as my thyroid hormones were not at the normal level.

My thryoid was examined with an ultrasound and biopsies were taken. I was told I had that the thyroid had an ‘unusual architecture’ and that I would need to start taking Levothyroxin (a hormone replacement) due to the fact that my thryoid did not produce enough on it’s own (underactive thyroid). I was also diagnosed with a second autoimmune disease called Hashimoto’s Thyroiditis.

I was hopeful that this new development would mean that the tiredness and lethargy would stop and I would go back to feeling like me again.

A few months later, this wasn’t the case, and I went to the GP a number of times over the course of the next two and a half years compaining of tiredness, lethargy, aches, pains, thirst, anxiety, stomach cramps, sore throats, difficulty overcoming normal coughs and colds and a general feeling of being permanently run down and unable to get over it. I was often told that it was normal for a young girl running her own business/studying a degree to be stressed and tired. I was told again and again that I looked well. Now that I have a full copy of my medical notes I can see that this was a common theme; I looked well, so I couldn’t be as run down and poorly as I was reporting to feel. Occasionally my Levothyroxin dose would be upped and I was sent on my way. I have popped a few pictures into this of me over the years – just to show that looks can be deceiving! All of the pictures were taken during the period of time when I was going to and from the doctors and the hospital.

Prior to feeling this way I was a bubbly, full of energy girl in my early twenties with a huge zest for life. I had recently finished school, moved out of home, set up my own company (a dance and performing arts school), embarked on a Business and Management degree and was working a part time job as a teaching assistant to ensure I could pay the bills. I was always busy, always alert and aside from the odd cough, cold and sneeze (and several bouts of tonsillitis!) I really couldn’t complain.

In early 2014 I was beginning to find it hard to get out of bed in the mornings and could easily sleep until past 11am. I would go to work in the afternoons and come home to sleep again before preparing dinner and then heading back to bed. I was very run down, felt permanently sad and anxious and no matter how positive and upbeat I tried to be, I felt very unwell. I headed back to the GP and requested some sort of further bloods tests. I knew it wasn’t right to feel this way and it was time to get some answers, no matter how ‘fit and well’ I looked/appeared. Sometimes, just because someone is succeeding on the outside, smiling and pushing forward with life, it doesn’t mean that there isn’t a bigger problem under the surface.

To cut the next bit of the story short, blood tests were sent off and I was shortly thereafter diagnosed with Coeliac Disease (another autoimmune disease). I went on a strict gluten free diet, and a number of the symptoms eased, but not the tiredness, lethargy and general aches and pains.

Last year (2015), as I was preparing for my wedding, I started feeling worse than I have ever felt before. I went back to the GP and begged for more tests to be done. I have a very good friend who is a pathologist and she had suggested I ask for an autoimmune profile to be taken. Given that I had now been diagnosed with three autoimmune diseases (Endometriosis, Hashimoto’s Thyroiditis and Coeliac Disease) she felt it was worth ruling out any others.

My doctor at the time took the most comprehensive set of blood tests I have ever given, and to cut this part of the story short too, I was tenuously diagnosed with mild Systemic Lupus Erythematosus. I say tenuously, as the markers that were present in my blood were only slightly positive and the rheumatologist did not want to formally diagnose something so serious without first monitoring me for a number of months. It was also not deemed necessary to put me on any medication at this stage, as my husband and I were trying for a baby and the treatment for the symptoms I was experiencing would be steroids.

Pregnancy

In May this year (2016), I was delighted to discover that I had fallen pregnant. Due to my pre-existing medical conditions it was recommended that I registered to have the baby at St Thomas’ Hospital in London, under the care of a consultant obstetrician and her team.

This has turned out to be one of the best things to ever happen to me.

The start of my pregnancy was fairly standard – morning sickness, tiredness, absolute euphoria! The twelve week scan was the highlight of our year and knowing that I was growing a very special little bean made me the happiest I have ever felt!

After twelve weeks, I started to feel poorly. I was suffering from very bad fatigue, intense headaches, a serious thirst, incredibly painful muscles and joints, all-encompassing brain fog and I felt anxious and sad a lot of the time. Not how you want to feel when the most exciting thing that’s ever happened to you is busy growing inside.

As you can see above – none of this was new to me, but it had seriousy intensified and was affecting my ability to do my job. It also made being pregnant quite scary – I was constantly wondering whether my body was up to carrying the baby and giving it everything it needed to thrive and grow.

I went to see my consultant and explained the changes I was experiencing. After consulting with a colleague, the consensus was that I was having a flare up of Lupus and I was quickly put on a medicine called Hydroxychloroquin (completely safe in pregnancy) to supress what was assumed to be the autoimmune reaction, as well as a daily dose of aspirin to hopefully pre-empt and deter pre-eclampsia.

Off I went and started on the medication. It definitely helped with some of the symptoms, particularly the painful joints, but overall I wasn’t feeling all that different. I carried on attending regular consultations and having regular blood tests.

Three weeks after one of these appointments, with a different member of the consulting team, I was sitting with the lead Professor of Obstetric Medicine, when an unexpected blood test result was picked up. My Calcium was reportedly high, at 3.02mmol/L.

I was immediately sent off for further testing and the high calcium result was confirmed.

Then followed the scariest, most overwhelming and daunting few weeks of my life.

I have condensed this part of the story and taken out a lot of the little waffly details that made it all the more scary and overwhelming. But you will get the gist.

Hypercalcaemia in Pregnancy

This is a rare condition. So rare in fact, that it came as quite a surprise to the team that I had it. There are a number of reasons for hypercalcaemia. I’m not medically trained so I’m not going to go into all the different options I was given, but the main one that was being investigated was a condition called Hyperparathyroidism.

The parathyroid glands are located around the thyroid, and it is their job to control the amount of calcium in the blood (click on the links for more complex info, I decided not to paraphrase it all here).

About a week after receiving this news, I became very unwell, very fast and was admitted to hospital for IV fluids and round the clock observations. I won’t go into all the details, but over the course of the next four weeks I had daily bloods tests, spent 24 hours a day on a drip, had to monitor every bit of fluid intake and output, had daily injections, daily consultations with obstetric medicine and endocrinology. I had two ultrasound scans of my throat, the second of which identified an adenoma (small tumour) on one of the parathryoid glands. This was almost certainly what was causing the hypercalcaemia.

The real problem in all of this was that the only choice I had in order to get better, was to have surgery to remove the affected gland. The surgeon who would be able to carry out this operation had just left the country and wouldn’t be back for over two weeks.

During my time in hospital I was put on a low calcium diet, went through a couple of days of thinking I had gestational diabetes (brought on by the fact that my diet largely consisted of fruit) and was diagnosed as anaemic and consequently put on iron tablets.

Skipping forward now: after a couple of weeks in hospital and finding that it simply wasn’t proving possible to keep my calcium down no matter how much I drank (6 litres a day for a whole week) or how long I was on the drip for and given that no medication was an option during the second trimester, plus trying to send me off to another hospital to be squeezed in to another surgeon’s timetable (unsuccessfully – but that’s a story for another day!), the surgeon finally returned from his holiday.

These few weeks were a huge drain on my husband and our families. I steadfastly refused to Google the conditions I was being diagnosed with, instead focusing on remaining positive and strong-willed throughout. This wasn’t easy, and of course there were a couple of times when I cried and felt for myself for what I was going through, but mostly I had one end goal in mind – to come out the other side fighting – and I fixated on making sure that could happen.

The day of my operation was the scariest day of my life. If you’re reading this and you’re pregnant and facing an operation, have courage; you can do it. So much will go through your head, and the consent forms and essential information that the doctors and aneasthetists have to give you is daunting, to say the least. But I am proof that it can all be ok.

When I woke up to find out that both myself and my baby were ok, it was the hugest relief. I still had a little way to go with the recovery (low blood pressure and a healing neck scar for starters), but the problem had been removed and I was awake and ready to move on.

The weeks I spent in hospital, before and after the op, weren’t without challenges, not least my crippling fear of cannulas and drips, something which every nurse, midwife, doctor and anaesthetist was soon aware of! Some of these challenges/obstacles have only really dawned on me since being home, and I just have to remind myself that I got through it at the time and it didn’t defeat me then, so it can’t defeat me now.

I’m now two weeks post op, back at work (well a little bit – I’m not teaching just yet!) and settling into real life. I’m feeling leagues better – my headache, muscle and joint pains, intense fatigue and anxiety have all but disappeared. My husband keeps running through the list to see how I’m feeling, and it constantly surprises us when I continue to answer in a positive way!

These photo show my neck the morning after, two weeks after and three weeks after the op:

So why am I writing this down?

Well, if you’ve stumbled across this because you  (or your wife, daughter or friend) finds herself in the same place I was in two months ago, I hope I can reassure you. It is scary, it is overwhelming, there is so much medical information to take in, so many tests and variables and limited literature to educate yourself with. But, you will come out the other side stronger, more complete and feeling immeasurably better than you were before. You will have a small scar on your neck (see above, it’s already barely visible and I haven’t started on the Bio-Oil yet!) and you will have memories that last forever (and not necessarily the treasured kind), but you will have survived, you will have beaten your body’s imbalance and you will be ready to face the rest of your life.

I’m only three weeks in. I’m tired and hungry, but I’m six months pregnant and judging from my friends with kids, this is how it’s supposed to be. Problems and ailments that have troubled me for years without answers appear to have cleared up and disappeared. I will post again in the future to update on how I’m doing – but put it this way: in the last week I have cleaned my whole house, I have cooked home-made meals, looked after my husband, been there for my friends and caught up with my business. I am planning our baby’s nursery and getting excited about it’s arrival (it’s the first time I’ve let myself properly plan and dream!).

I guess the title of my blog couldn’t be more appropriate. This has certainly been the cloudiest period of my life. But the sparkly lining? I am feeling better. I am stronger (both mentally and physically) than I was before. And the ultimate? My husband and I have endured the most challenging period I can imagine, and it has brought us closer, made us stronger and made us more excited than we ever imagined possible about our future as a family of three.

It’s time to get me back to being me again – but this time without anything lurking under the surface – this operation should have cured the problem, now I can live my life!

Want to know how I feel one month post op? Just click here.

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