Diagnosed At Last

I was diagnosed with Graves’ Disease on 12th September 2019, and with hyperthyroidism on 3rd June 2019. But I’ve been ill for a lot longer than that.

About four years ago I was hit with some really stressful and difficult to manage news and I believe that was the trigger for my Graves’ disease.

Since I’ve been diagnosed I’ve done a lot of research and one of the things I’ve looked at is why people get Graves’.

Graves’ disease is an autoimmune disease, it’s incurable and has some really shitty symptoms. From what I gather for some unknown reason your immune system builds up a major dislike for your thyroid and tries to destroy it and as a response the thyroid fights back by over producing thyroid hormones and attempting to destroy pretty much everything! And emotional trauma seems to be a fairly common catalyst to kick start it all, along with illness or pregnancy. It’s more common in women than men and rarely starts after the age of 40. People with a family history of autoimmune diseases and those who smoke are at the highest risk of developing Graves’.

Training in 2012 with some form of heart rate monitor on, I’ve always been a bit obsessed with tracking it.

For me one of the first symptoms I suffered was an increased heart rate. I’d always trained wearing a heart rate monitor so I’d become pretty good at knowing my heart rate ranges and all of a sudden it was so much faster all the time. Along with that I was getting a lot of chest pains and my blood pressure dropped so I was also getting very dizzy and passing out.

I went to the doctors was told to stop all exercise. I had about a million tests on my heart and lungs over the space of about 18months.  Doctors then seemed to conclude that there wasn’t anything wrong with me and that the symptoms were probably anxiety related. In 2016 my thyroid was checked but by that point my heart rate wasn’t as crazy and I’d stopped passing out as much. I’ve looked back at my thyroid results from then and the results were borderline and should have been repeated but never was.

I was referred to a mental health team to deal with my depression and anxiety. I didn’t argue with the diagnosis as the emotional trauma I’d mentioned earlier was highly likely to be causing both.

And my anxiety had become pretty bad!! Initially I couldn’t bring myself to start training again because I was scared of finding out what I couldn’t do. I didn’t want to know how much strength I had lost so I put off finding out. I still taught beginner bits and pieces and got advanced students to demo everything else. But on top of not training I ached from head to toe. My joints and muscles hurt and I didn’t understand how or why and because drs couldn’t find anything wrong I assumed it was in my head and kept quiet.

My weight went up and down, but over the course of a few years I put on around 15kgs. And I hated it. I began living in my dressing gown, using the excuse that I was cold because I didn’t want people to see how squishy I had got and start judging me. I didn’t want to go out anywhere that involved me getting dressed up nice because I felt stupid. In my head I looked rediculous trying to wear anything nice so I stopped trying. Events I had to attend were hard. I spent weeks crying and getting worked up about going. I knew I should go and part of me really wanted to but it felt like torture. And then half the time I let people down last minute. I made excuses and I know people were angry with me. A lot of my friends gave up even inviting me places. Part of me was pleased about that because it meant I didn’t have to find excuses but another part of me was really hurt. Graves’ disease really does show you who your friends are.

Almost all of us! My middle daughter Lorna always seems to be missing from family photos.

My beautiful grandbabies were born late 2016, Isobella and Oliver were perfect. They kept me going. I loved my partner Sean and my three daughter’s Kaiya, Lorna and Grace but I didn’t believe they needed me anymore and I was useless at work as I couldn’t do anymore than the basics. But around the babies I still felt like I had a purpose. So they became my excuse to not do anything else. It caused problems with me and Sean at times because on a Saturday evening when we were both free and could go out for a meal or to the cinema I would quite often offer to have one of the babies so going out wasn’t an option and I think he got the impression that I didn’t want him around anymore. One positive that has come from my Graves’ disease is I have an amazing relationship with both my grandchildren.

Oliver and Isabella, my beautiful grandchildren! Photos by Kaiya Plant Photography.

As well as the depression and anxiety and the aching and pains. The biggest thing that got to me was that in a few years I had become a totally different person. I used to be confident and happy. I had beautiful daughters, a supportive partner, two adorable grandchildren and a job I loved and I couldn’t enjoy any of it. I knew I should be happy. I loved my family. But I couldn’t show them that, except the babies, everyone thought they were all I cared about. they really wasn’t but I didn’t want to answer questions or talk about things that mattered so I did distance myself from everyone else.

I didn’t want to talk about my emotions and feelings or anything serious because I didn’t understand how I was feeling. I didn’t know what was wrong. And all I wanted to do was shut off. And I could feel myself closing off to everyone except the babies and I didn’t mean to but I also couldn’t stop doing it. And I still kinda do it.

In October 2018 I decided to stop feeling sorry for myself. I decided to start training again. To start with it really lifted my moods. I could still do much more than I thought I would be able to.  My flexibility was shocking and nothing was as easy but I could still do some advanced moves.

But after the first couple of months it all went a bit wonkey. I noticed my heart rate was up again. And every time I went to train I felt like I could do less and less. Initially I thought it was a mental block and in my head but after a couple of months I realised I was getting weaker. I didn’t want to go back to the doctor’s as I still felt stupid from all the tests they did only to find nothing wrong with me. So in February 2019 I just stopped training again.  And that failure reinforced my belief that I was useless at work.

In April my mum planned a surprise birthday party for me. And Sean was so stressed out about how he could get me there he had to tell me about it. He knew I wouldn’t go if he told me he was taking me out for a meal or for a drink. When he told me, I had a full blown tantrum. And I blamed him for not being forceful enough with my mum and telling her no, but I was scared of upsetting my mum by telling her how much I didn’t want it. I didn’t want people to see me. I wasn’t the same person people knew. I was embarrassed and I was scared about going. Sean managed to get me to compromise and I agreed to go if my mum promised not to do happy birthday. And I loved the party. I had a drink and after about half hour I felt a bit like the old me again. But the next day I felt even worse. I felt stupid and embarrassed that I’d let myself be me. And I still don’t understand it now.

For my birthday Sean bought me an apparatus I’d asked for years before. A lollipop Lyra. And because I didn’t want him to be disappointed with his gift, I went in to our studio one day on my own to try it. I couldn’t do anything, not even go upside down. But for some reason I weighed myself while I was there. I wish I hadn’t as I was the heaviest I’d been ever. It sent me even further into a state of depression. There were days I didn’t want to go to work. The weather was getting warmer but I’d rather sweat it out in my dressing gown than let people see me.

But then for some reason the weight started dropping off. My appetite disappeared and the only reason I remembered to eat was because I felt sick from hunger. But then when I got food I could only eat small amounts before I felt full and uncomfortable. Then an hour later the sickness came back.

For about 18 months I was incapable of taking a photo on any device. And I had no idea why but it became a running joke at the studio and at home. Turns out I had the shakes. A very fine tremor that initially wasn’t noticeable to others. But by May it was pretty bad.

I did speak to a doctor who again thought it was the stress and anxiety but booked me another appointment as I was getting lots of liver spots around my upper body and he wanted to investigate that. But the appointment was in three weeks time.

I babysit Oliver when Lorna works Saturday mornings. I love my time with him and Grace. And its only ever us three in the house. On Saturday 1st June I woke up feeling odd. My eyes had been progressively getting blurrier and painful. And I was getting Oliver some breakfast when I started feeling dizzy. I passed out on our stone tile kitchen floor knocked my head a bit. Oliver thought I was playing a game and come and laid next to me. I was worried about getting up and falling on to him so I shouted Grace. In true teen style it took her ten to fifteen minutes to make it downstairs, she was great once she realised I wasn’t good. I also weighed myself that afternoon and since my birthday 5 weeks before I had lost over 10kg. And the situation was enough to scare me into going back to the doctor’s, I went to see the out of hours GP who gave me a blood form to test everything. The following Monday I went first thing to have the blood tests. By 1pm I’d been called by my GP to go straight to A and E. Turns out my thyroid function wasn’t just a little out of whack, it was dangerously high.

A and E was great but despite saying they should admit me to a ward due to my resting heart rate being around 140bpm, my vision being shocking and me potentially being in the middle of a thyroid storm, they did let me home with a prescription for carbizamole, to surpress my thyroid, and propranolol, which is a beta blocker, as I was talking ok and I promised I wouldn’t drive or be on my own. My GP wasn’t actually happy about that but it seemed to be ok in the end. I did as I was told and I didn’t die so yey. A and E told me to make an appointment with my GP the next day and for him to make an emergency referral to an endocrinologist.

Once I was diagnosed with a hyperactive thyroid my GP was fantastic. They sent the referral instantly and monitored my heart rate, blood pressure and eyes almost daily until it was back under 100bpm.

However the endocrinology appointment that was supposed to come through for less that two weeks time took over 4. And the anxiety of the wait was again torture. I was reading up on things and guessing why my thyroid was over active. I was getting chest pains that panicked me and I still couldn’t eat much. But I did start to feel better after a couple of weeks.

On the 4th July I got my appointment with endocrinology,  He upped my dosage of carbizamole despite the fact that I told him I was already seeing improvements. I asked if they should retest my thyroid levels but he told me they didn’t need to as carbizamole doesn’t work that fast and that he would see me again in 6-8weeks and to have blood tests again the week before my next appointment.

Four weeks on I had gone through a period of feeling almost normal and had even started training. but then I started feeling tired and irritable again, my skin was dry and my heart rate was slow. I was exercising daily and eating next to nothing and still putting on weight. Apparently I was showing all the signs of hypothyroidism, an under active thyroid. I have no idea how Sean stuck around through that period of time. I was awful. And I scared myself. There were some really dark days that I will explain another time.

I called the endocrinology department but my endocrinologist was on holiday til the end of August and my next appointment wasn’t until September. So I called my GP, who was quite honest and explained he didn’t really know what to suggest but my endocrinology team should have someone to cover while my endocrinologist was away. So for three days I called the endocrinology secretary. I feel really bad for the woman because I was a nightmare. But it worked and eventually they told me to go have some blood tests. And it was lucky I did because my thyroid function had dropped to dangerously low levels. I’d been over medicated serverly and was hypothyroid.

Between then and my next appointment with endocrinology I had another 3 blood tests organised by my gp and had to stop all medication and then go back on to varying doses  a few times.

At my appointment in September with the endocrinologist, he told me my antibody blood test confirmed I had Graves’ Disease. He also mentioned that my liver was failing and not to consume any alcohol and I was deficient in lots of things. He believed they were all because of my thyroid so didn’t need to be addressed or treated individually. He also said that I won’t need another blood test for at least 6 to 8 weeks as the carbizamole effects don’t work any faster than that. I explained what had happened while he was on holiday, which he looked up on my notes and agreed I must be very sensitive to the medication. But also explained that he doesn’t have time to see people any more regularly and if I am worried about my dosage before my next appointment to call and talk to his secretary, I called last week and couldn’t get through so I’m in limbo again.

So just getting diagnosed has been a bit of a roller coaster for me. And for everyone around me. But at least I now know it’s not all in my head, I have actually had a lot more symptoms than the ones I’ve described in this post but I’ll get to those another time. I have a feeling getting the dosage of medication right will be a complete ballache but fingers crossed I get there eventually. I have applied to take part in some medical trials of a new Graves’ Disease drug and fingers hopefully I’ll be suitable for that.

I’ve started working at trying to change my diet and lifestyle and assist my thyroid naturally and hopefully go into remission. It’s early days yet and I’ve got a lot of research to still do. As none of the medical profession seem to be very open with what I should be expecting!!

Published by aerialemma

I'm a 40 year old aerial arts and pole dance instructor who has recently been diagnosed with Graves' Disease

5 thoughts on “Diagnosed At Last

  1. What a fuc==ng nightmare . You will get it sorted but need to take very good care of yourself Emma .whatever you have suffered ,with letting others know or not , you have managed = not always great but shows how strong and determined you can be Many people would have struggled with the stuff you have had to deal with over the past few years without medical issues so be proud of who you are and what you do. And the babies are fantastic life lines for us all in troubled/difficult times.And well done SEan !!! things can only get better so glad you love my daughter and all her kids (big and little ones ) you are a star !! xx

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  2. I’m sure they will get you sorted out in the end em it just might be a rather long road to get there.my graves disease was active for about 16 years before I had my thyroid out in 2008 ish I think it was and I haven’t had a single problem since.Hope you can see a light at the end of the tunnel soon and you can always ask me anything about it and I’ll try and help the best I can much love to you em

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  3. read every word. the story is wrote so well ,I really hope it does goes in remission ,I’m actually impressed with how u teach all are children and being poorly , I just think it’s inspirational for others who are also poorly , and honistly u are amazing at teaching ,my daughter has learnt so much in almost a year being with u .thanku for being u xxxx

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  4. I had know idea what you were going through when I first met you. You are so strong for sharing your thoughts on this blog and I really believe it will help your friends and family understand what is happening more, but it will also help you in a cathartic way.
    I wish I had written stuff down. I often struggle to explain what happened to me and my route to diagnosis (which took nearly 20 years!) so I really do think it’s great that you are doing this.
    xxx

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