Liza’s story: my hypothyroid diary

2010:  Pre-hypothyroid my adult weight was on average around 150 pounds which at 5’10 suited me just fine and gave me a BMI of around 22 and a dress size of 14-16. I was teaching six days a week, 12 dance classes in the community, plus part-time school teaching. At weekends I often performed dance with my troupe or enjoyed doing all my own DIY and gardening… My attitude to life was ‘just do it’ and very little held me back for long. I knew a lot about activity, nutrition and exercise but I knew nothing about the thyroid. So much was about to change.

 Sunday 18th March, 2012 – Diagnosis 

It was late January 2012. I’d been feeling very tired, run down and to be frank, a bit old. I had never felt like this before. I put it down to getting older. When I went to visit my Godmother who is around thirty years older than me, my reaction to cold and my energy levels troubled her. In fact, I couldn’t keep up with her. She told me to go and have my thyroid tested. Within days I was called back to the surgery for the result. The doctor told me it was bad news and good news… I had hypothyroidism  but it was easily treated. I was relieved by the diagnosis. I felt it was good news and good news. There was a simple reason why I was feeling so rough and I believed it was simple to put right (the doctor said so). I was given some pills and I assumed that things would soon be back to normal…

When I got home, I weighed myself for the first time in two years. I knew I’d put on a bit of weight but didn’t realise how much. I was surprised to see I’d put on a third of my body weight and since my vegetarian diet hadn’t changed over that time, this was quite impressive – and not in a good way. I decided to look more closely at what had been going on. I thought about my lack of energy, the continual tiredness, the crashing lack of confidence when doing things which had been a part of my everyday life and which now seemed too difficult – teaching, dancing, driving… the strange muscular aches and cramps which came from nowhere and lingered for days, the changes in my classroom management – my inability to multi-task, inability to make clear decisions quickly, inability to ‘think on my feet’, forgetting names and words and the panic attacks and insomnia .

More recently I was struggling to walk at the end of the day… and when I got out of bed in the morning, my feet didn’t work and I couldn’t stand up without holding onto furniture and mobilising my feet for about five minutes. Yes, now I was taking stock it was clear things had not been right for a while but how had I not noticed? So much had changed in so many ways and so slowly I hadn’t noticed apart from a vague, ‘well I’m getting older, people often put on a bit of weight… its winter, of course I’m cold… ‘

By early 2012 I was doing nothing, apart from teaching in school two days a week and taking my one evening dance class – and I was struggling to cope with these. In my dance class I stood or sat at the front and directed. I was no longer taking part. When I finally took stock I realised that hypothyroidism had completely changed the way I live and my independence had been eroded so much that I was on the verge of becoming disabled.

 Sitting in the doctors’ surgery and being told I had hypothyroidism was actually a relief. It was a relief to put a name to how I felt and to be told that the changes were not permanent. I felt very positive about the diagnosis and I started my treatment – a low dose, 25mcg of levothyroxine . The doctor told me my body would need time to adjust back to having thyroid in my system.

 So, one month on… How have things changed?  I’m feeling positive about the future and decision making again with more confidence. I can manage physical activities around the house and garden and even if this is only in small bursts of activity, at least it’s something. My skin is less dry and when my muscles ache it’s from genuine activity and not just because my muscles always ache. I still get strange little cramps in my hands, legs and feet, but I’m hoping these will go with more time on the thyroid replacement. 

Last week, I had two brilliant days at school when, for the first time for a very long time, I didn’t have the energy crash at midday. For the past few days, I’ve been able to stand unaided when I get out of bed in the morning and my feet work within a couple of minutes! Things are not yet back as they were, however, everything is slowly going in the right direction.

Six weeks later I returned to the GP after my follow-up blood tests, which came back ‘normal’. I thought the cramps may be a sign that I needed more levothyroxine so I asked about this. According to the GP the muscle cramps have nothing to do with being hypothyroid. The GP told me hypothyroiders do a lot of imagining. I assumed this meant he couldn’t answer my questions. I also asked about my excess weight and was told that this has nothing to do with being hypothyroid. He gave me anti-depressants.

While I tried not to take on board his comments I was angry and confused. This was the first time I had come up against negativity from the healthcare professionals. My GP had no idea that I know a lot about nutrition and exercise. My GP saw an overweight woman and assumed this was a lifestyle choice – or he wanted it to be a lifestyle choice. I was very upset by the attitude of my GP and by a lack of support and realised that I needed to do as much research as possible and become as informed as I could.

Since being diagnosed I’ve been open about my thyroid condition. I’ve discovered several family members have thyroid problems. I’ve now contacted everyone in my family and told them to be more aware. There is no way of predicting who will develop the condition. Hypothyroidism is silent and insidious… I found lots of reasons to explain to myself why I wasn’t ‘right’ without it ever occurring to me that there could be a clinical reason. I’m sure I’ve had this for a long time and it’s disabling and destructive. My advice to others is; become aware of the symptoms, don’t make excuses and get tested!

 Wednesday 8th August, 2012 – my own Olympic challenge

I’ve already written about discovering I had hypothyroidism and the effect this had had on my life. I’m now going to write more about the muscle damage I experienced when undiagnosed and the path to recovery.

The good part; over the past six months I have become more able to cope with my ‘normal’ day. I rarely get muscular cramps now and I’m not on my knees by 3pm. I can take part in my dance classes – although still at a limited level. I’m no longer gaining weight. I feel reasonably well and happy… and I love my tiny, new garden which I created a little each day during part one of my recovery this spring. After diagnosis, I decided I needed a project to lift my mood so this is my hypothyroid garden. During these months I knew that my level of fitness was at its lowest, however, my priorities were to give my thyroid time to return to an acceptable level, to try to stay positive and to regain control of my teaching career which had suffered as a result of my condition. When I was first diagnosed I was warned that recovery can take months.

The not so good part – June 2012; despite feeling better in many ways, my stamina and endurance are shot. I can’t go to dance events and cope with more than a few minutes of dancing. After attempting any activity, I’m exhausted the following day. I can’t walk far or for long. I can’t do the exercise I used to do as my muscles are wasted and the extra weight I gained whilst undiagnosed puts stress on my joints. My leg muscles are so weak I can’t get up out of the bath without rolling over onto my greatly enlarged belly and pushing myself onto my knees.

My clothes don’t fit as I’m several dress sizes bigger. I’m more than three stone higher than my typical adult weight and my BMI is around 29. Whilst medication with thyroid replacement of T4 has stopped me gaining weight, it hasn’t enabled me to lose any of the excess weight I gained whilst undiagnosed. Everything I wear has elasticated waists and is baggy. My body doesn’t look or feel like me. I don’t recognise it and I don’t like this new body. I resent the changes forced on me – as superficial as they may seem to be. I’m shocked at how quickly this change came about. My body is cumbersome and prone to injuries which seem to appear out of thin air. My muscles are wasted and weak and in their place is soft, spongy flesh which does not effectively support or protect my skeletal-muscular system.

July; I had my first dance performance this year which was great fun but appeared to trigger an injury to my foot where the tendon meets the bone. This injury was probably caused by a combination of weight gain, weak muscles, low stamina and unusual exertion. Following this event, I couldn’t walk without a great deal of pain. I’m fearful that I’ll never be able to dance in the future. I put off a visit to the doctor but after three weeks I accepted defeat and went to the surgery expecting to be told again that I’m imagining things. The GP was much more positive. He identified the injury as plantar fasciitis – it was not in my imagination at all – and gave me several pages of information covering causes, treatment, exercises and prevention. He also gave me anti-inflammatories which have worked a treat.

August; I’m not going to settle for a weakened, overweight body, an inactive life and a body which is vulnerable to injury. I’m going to get strong and fit and I’m going to dance again. I’ve built a new toy – an elliptical X-trainer which is giving me exercise whilst not aggravating my foot injury or stressing my joints. I’m taking whey protein to supplement my vegetarian diet as I begin to regain fitness. The cramps re-appear after exercise, so I’m trying out another protein supplement – creatine monohydrate – to see if its recovery boosting qualities will help. It’s early days – a lot of trial and error – and I’m taking it slow with lowest resistance training, gentle, consistent speed and plenty of stretches.

Unfortunately, hot on the heels of the foot injury I got a back injury… while leaning to pull out a weed ‘something’ went in my back. I suspect it was triggered by the attempt at sit-ups so I won’t be doing those again! I took myself straight to bed and watched the Olympics. I have another two days of inactivity and anti-inflammatories, but I’m thankful that this time I took action to sort it in days instead of weeks. As impatient as I am to resume exercise at the level of two years ago, I’m resigned now to taking recovery slowly. Inspired by those amazing athletes and Team GB, I’m now up to a 16-minute session on the X-trainer and my muscles really are getting stronger. I know this because at last, and for the first time in almost a year, I can get up out of the bath without the roll-over onto my knees!

 Sunday 20th January, 2013 – one year on!      

How well I am now – almost one year on! I feel like my ‘old’ self again – I’m a bit chunkier, but feel well and am happy. My body may look different, but I feel like ‘me’ again!

So, what has happened since my August update? In the summer of 2012, while my foot injury was still healing I was asked to teach an introductory dance workshop for one hour a week at a local health farm to provide some fun for the residents during their week of ‘boot-camp’. This was too good an opportunity to miss and gave me a real boost. I still had something to offer! It lifted my spirits and my confidence began to grow.

On one visit to the health farm, I spoke about my condition to the owner and she advised me to look into the impact that nutrition has on hypothyroidism and to consider taking a vitamin supplement, so I began some research. As a result, there were some changes I made to my diet. I started to cook all cabbage, broccoli and cauliflower to beyond the crunch, I introduced celery and cut out all soya. As a vegetarian, I had been eating a lot of soya and soya-based products. I started to check ingredients lists and I found soya hidden in so many unexpected places. I hunted out and eradicated all soya from my diet and after about two weeks I had a surge of well-being and feeling ‘right’ again. Is this a coincidence? I can’t be sure but I won’t be eating soya again.

I decided to keep my lifestyle as consistent as possible. I take my meds first thing in the morning with a mug of warm water. I leave breakfast and my first cuppa for about an hour. I take care to eat well with foods which have high nutritional value. I read that fruit can help the liver  produce T3 and I regularly snack on fruit. If possible I walk away from stress and situations which may give me anxiety. I need about seven to eight hours sleep so I aim to be in bed by 11 pm each night. Insomnia has gone and I’ve been sleeping soundly through the night again. What bliss a good night’s sleep gives!

I take gentle exercise. It is surprising how quickly muscles begin to strengthen. I noticed in August that I always had a good night’s sleep after I used the cross-trainer – this was the start of sleeping through the night again. I don’t overdo the cross-trainer and in fact, I’m now so active again, I rarely use it. I walk several miles, take part in my dance classes and spend several hours cleaning or gardening without problems. The muscle cramps and nightly leg pains have completely gone. I recently treated my belly to an electronic exercise machine since I didn’t want to do sit-ups and risk injury again. Using the machine to stimulate  abdominal muscles has helped and an added bonus is that those intestines are really working again!

My confidence and positive outlook on life has returned. I have never been happier. The cherry on the cake is that I passed my latest teaching assessments with flying colours. I feel I have snatched back my teaching career from imminent disaster. I can multi-task again, think on my feet and organise better than ever! 

Sunday 19th May 2013 – Flu’ and my first flare-up

Almost immediately after writing my last update, in late January 2013, I had flu’. It left me very drained afterwards and on my return to work, I noticed I had a return of the heavy legs, fatigue and muscle aches. I was unable to continue with my fitness programme and my sleep patterns were disturbed again. The time was approaching for my yearly blood test, so I called the surgery and asked for this. I also asked for my actual TSH figures of 2012. The GP questioned why I needed these figures and told me they are for guidance only, and that GPs place much more importance on symptoms. I was amazed. I told him this made me very pleased to hear, however, this had not been my actual experience at times over the past year and I needed to monitor my results for myself.

This conversation ended with me writing in a letter of ‘concern’ to the surgery and I asked that attitudes to patients with hypothyroidism should change. I also got my previous blood test results plus a new blood test and a response from the centre manager promising to raise my concerns with all staff at their next meeting.

During this time I found the list of symptoms on ThyroidUK and decided that I needed to monitor my symptoms several times a year. I used a traffic light colour code system so I could see at a glance which symptoms were improving or getting worse.

The blood test came back with a TSH level of 18.63 (0.35-5.5). Thanks to the research I had done on ThyroidUK I now understood this and the implications. The results also came with an instruction from the GP to take a higher dose of levothyroxine – 50mcg.

This time I knew what to expect during recovery and felt more confident managing the symptoms. I had a return of the cramps and aches, particularly when I felt I needed a top-up of T4. So, this is what I did. After a top-up my cramps always eased off within an hour. If I felt overtired I’d go to bed and get a little sleep – even half an hour of rest made a big difference. This daytime napping also helped if I became very cold. On days when I was in school, I just struggled on. I informed my line managers about my flare-up and they were as supportive as was possible so that I could avoid taking time off.  

After four weeks my TSH level had dropped to 3.88 and I was no longer getting muscle cramps. A TSH of nearly 4 is still a little high although after another month it dropped further and I no longer needed the afternoon naps. I felt so well I started running again. I loved running outside – much less boring than the cross-trainer. I even came home from a teaching day and could go out for a run! Just a few weeks before, I was barely able to walk after a school day and within a short space of time on a T4 increase and I was running again! Then… the bad news; a head cold was followed by a knee which ‘clicked’ then became painful. I have never had a knee injury before, ever. Now anti-inflammatories a support bandage and no more running. I can hardly walk (again) never mind run. Last summer it was plantar fasciitis, I’d never had that before either.

OK, the thyroid didn’t cause these injuries, but the thyroid did cause the weight excess and the muscle weakness and the prolonged periods of extreme fatigue. I won’t run again. In future, I’ll stick to walking and my cross-trainer and count myself fortunate that I can do this.

It took four weeks for the knee injury to recover, and now I can look again at the weight/BMI issue. This is so frustrating. I’m still more than three stone overweight with a BMI of 29 and I have a thyroid-pot-belly. I cannot seem to lose weight. This still gets me down.

I avoid stress. I walk away from situations which only a short while ago were ‘battles’ I would have taken on board. Now I have my say and move on. I don’t allow others to draw me into discussions which I know will create stress.

Things aren’t always easy. I no longer take my health for granted and I work at making progress. I’m learning all the time. I feel I have some control over my health again so I’m less anxious about the future. I’m content and I’m enjoying life again. I’m trying to accept and work with the changes being hypothyroid has brought and I’m trying to be positive about the challenges.

Summing up my story so far: ‘Nothing is ever clear in thyroid world’. 

I am eternally thankful that my GP did eventually send me for testing, that there is treatment and that I have responded well to this. I’m grateful for all of the information I’ve found on the internet and for the help I’ve received from ThyroidUK. I’m pleased that I’ve learnt how to monitor my symptoms. I’m aware that at present I respond well to T4 monotherapy and seem to have no further medical complications, so I’m very, very lucky.

I never see my thyroid issues as a success story as there’s always some new challenge around the corner. I get very frustrated at times by the on-going struggles. Perhaps I need to change my interpretation of ‘success’ and I should measure this by my ability to understand, monitor and manage the condition. I’ve discovered that Hypothyroidism is complex and individual. A ‘one-size-fits-all’ approach doesn’t work and I’m aware that my treatment may need to change in future. I’m getting prepared!

I’ve responded well to medication but also feel that I have helped my healing by looking at areas which were neglected by my GP. I was given no advice about nutrition or exercise and I know that these areas have been important in my wellbeing. My hope for the future is that a more holistic and supportive approach is taken by the medical profession. I’d like to see more support given in managing the condition. Perhaps units, like diabetes centres, need to be established.

I’d like some GPs to improve their ‘bedside manners’. I didn’t need to be told ‘you’re imagining things because you’ve read it on the internet’. Or that you’re ‘too analytical’ or that my GP has ‘just seen someone whose levels are much worse than you – and he’s ok…’  I was given no help in managing my condition and was criticised for trying to find out more. The attitude was ‘take this tablet each day, go away and don’t come back’.

I’m still surprised that some professionals I saw assumed that I knew nothing about weight loss, nutrition or exercise. At times they were dismissive and disinterested in my symptoms and concerns. I’m saddened by the attitude I have encountered which doesn’t speak well for the medical profession and the attitude towards thyroid issues. My condition has not been a ‘lifestyle choice’. 

Last year I needed my GPs to acknowledge my very real aches and pains and re-assure me that this can be part of the path to recovery. This would have given me hope at a time when I needed support and compassion.

I’d like thyroid problems to become more well-known – I had no idea about hypothyroidism before I was diagnosed. It doesn’t seem to be discussed much, yet can affect anyone. When it does hit the news it often seems to be taken as a bit of a joke by some, or as a ‘fashionable’ excuse for weight gain. This trivialisation of thyroid issues is dangerous and undermines the struggles we face with this condition.

My diagnosis came when I was only just into the level where the medical experts in the UK have decided treatment should begin. At this level my underactive thyroid was already taking a heavy toll on my well-being and I was on the way to becoming disabled.

Recovery has not been easy and I wonder if things would have been better if I had been sent for testing when I first visited my GP with stress and panic attacks. It is my opinion that I needed levothyroxine to be given much earlier and when my TSH levels were much lower. So much of the muscle damage I suffered would have been avoided and my weight would have stabilised much sooner. I wonder what other hidden damage has been done as a result of delays in starting T4 medication.

The professionals need to take a closer look at thresholds and symptoms. Treatment and management of the condition should be approached in the way that diabetics manage their condition. Diabetics are encouraged to become knowledgeable, whereas I was discouraged. I suspect that in years to come the medical profession will look back at current treatment of thyroid issues and attitudes in the way we now look at Victorian ideas towards mental health.

My advice now is ‘get educated’. Thyroid conditions are for life. Aim for ‘optimal’ treatment and don’t accept less.