I thought I was going mad

By:  Jackie D  Monday, 26. May 2008

How a hyperthyroid condition complicates an eventual diagnosis of Addison's disease, teaching us we may not all be text book cases.

In August 1996 I gave birth to my beautiful daughter, Nicole. I remember being so happy; I had a loving husband, Chris, and a new baby. Life seemed wonderful.

The mood swings kick in

It didn’t last long: I started feeling run down and fed up, I got mood swings.  At first, I tried to cope on my own. But things got worse, so I went to the GP. He diagnosed post-natal depression and gave me antidepressants. The tablets didn’t do any good and I felt worse.  So I returned to the GP, who told me I needed to give it time. I lived like this for about two-and-a-half years, on and off antidepressants.  All the time my moods were getting worse and I gained about two stone in weight.  As Chris now puts it, I was a nightmare to live with: I would flip at the slightest thing and to my way of thinking, I was all ways in the right while other people had a problem - never me.

It came to a head not long after Nicole’s third birthday, when my Mum and Dad both told me that I was horrible to everyone around me and I should go back to the doctor.  My Mum insisted on making an appointment and coming with me. We saw a great doctor. He sat and listened, then said if I agreed to go back on antidepressants, he would run some blood tests. When the results came back, I was diagnosed with an over-active thyroid, sometimes known as Graves’ disease. I remember feeling relieved that I would soon be back to normal. 

My thyroid goes out of control

I was put on carbimazole, the standard treatment to control hyperthyroidism, but it didn’t work.  My thyroid function was swinging wildly, either under-active or over-active. It never stayed in one place. I gained more weight, my moods were worse, and I was either running round like a headless chicken or so tired I could hardly move. So my endocrinologist decided I would need surgery to stabilise my thyroid.  He reassured me that I would be like “a new woman”.

In December 2000 I had a sub-total thyroidectomy.  This involves removing most of the thyroid to leave just a small part of the gland. It seemed to take ages for me to recover from the operation. My Mum and  Dad had to move in with us to help; Chris had to work and I was too weak to walk Nicole to school.  Instead of feeling like a new woman, I had six months on sick leave from my job as a carer in a geriatric home.  Finally I had to quit, because I found the night shifts impossible to cope with.

One morning when I got out of bed, my face in the bathroom mirror was completely swollen.  The GP thought it was an allergy, but by the following day my whole body was swollen up like “Michelin man”.  When the GP ran some blood tests, he called me back in the same day, because my thyroid levels were now so low I was apparently near death from hypothyroidism.

I remember thinking that, now I was on replacement thyroxin medication, my life would get better.  With thyroxin, you have to start on a low dose and build up slowly to a full adult dose, because otherwise the heart could be over-strained.  But again, it seemed impossible to stabilise my thyroid or find the right dose.  Up and down, over or under, so I was referred back to the hospital for specialist endocrine attention.

The hospital discharges me from care

On one visit, the endocrinologist’s associate told me it was not an endocrinologist I needed but a psychiatrist.  He wrote a letter referring me to the psychiatrist but I never went, because deep down I knew I wasn’t mad, just very ill.  My husband, Chris, had come with me to that appointment and he was dissatisfied with the way I had been treated.  Thank goodness, at least I knew it wasn’t just me!

Then the endocrinologist discharged me from his care. I remember coming back and crying my eyes out. It felt as if no one believed my symptoms were real.

I got to the stage where I doubted myself. My moods were truly awful.  In the supermarket, I rammed a lady with my shopping trolley because she was in my way, and didn’t feel guilty about doing it. The school playground was awful - I felt like my head would explode because there was so much noise.

In 2006 I went back to the GP, who said he had done all he could for me and he thought I should go private. He then said he would refer me to the same endocrinology consultant who had seen me on the NHS!  Even though we were on one income and didn’t have a lot of money, I was willing to pay to get my life back. But I said no way to paying for the same consultant who had discharged me.  Instead, I asked to see a professor in Hull who had been recommended by a friend. 

My adrenal failure is identified

This professor listened to everything I had to say, including that I thought I was going mad.  He said he could do a particular specialist blood test while I was there, or he would see me at his NHS hospital, if I didn’t mind waiting.  This was a Monday evening.  At the time I had no understanding of what this test meant: it was the 30 minute short Synacthen test which is used to assess adrenal function. 

Three days later he called me back in.  He told me the Synacthen test showed that my adrenal glands were not producing enough cortisol so that I have adrenal failure - Addison’s disease. Just like hypothyroidism, it can be fatal if left untreated.  Also like hypothyroidism, it can be easily treated with daily medication.  I was so relieved, I could have kissed him.

My diagnosis was not easy, because my thyroid instability masked many of the classic symptoms of Addison’s.  Apparently I have a rare variant of a rare condition: there are probably less than 400 other people in the whole of Britain with the same combination of hyperthyroidism and Addison’s as me.

That is, perhaps, why my symptoms made no sense to the first endocrinologist I saw.  Instead of weight loss with the thyroid problems, I had gained weight. This gradually slipped off again, so that by the time my Addison’s was diagnosed I was simply at my normal 10 stone (64 kilos).  Instead of tearful weakness, I had irritability and anger.  My skin never went dark.  I looked pale with just a sallow, yellowish hint when I was at my worst.

The professor started me on hydrocortisone, a steroid that replaces the cortisol my body can no longer produce, and my thyroid has been stable ever since.  But replacement steroids are not as simple as the replacement thyroxine dose I also take every day, because I have to take extra steroid medication every time I get sick.

Learning to live with steroid-dependency

I won’t say life was instantly better. The first year was frightening, because I had little understanding of how to adjust my steroids for illness.  A simple cold sore had me feeling at death’s door.  I was so poorly with it, I genuinely thought I was dying.   The GP, again, didn’t know what wrong.  On my third visit in as many days, he rang the professor.  Who said, she has an infection so she needs to double her dose.  Within two days I felt back to normal!   

I feel very lucky to have such a good endocrinologist and I have now also found a good GP, who admits he does not know a lot about Addison’s but is happy to go back to his text books to find the answers for me. He also says that I never cease to amaze him. After two years on replacement steroid medication, I feel that I am finally back to normal.  No mood swings.  I have gone back to work as a kitchen assistant at my daughter’s school.  The work is hot and noisy but I am part of a great team and I love it.

It’s been a long eleven years. I appreciate that adrenal failure is a condition that will keep throwing a lot of ups and downs at me, because of the need to adjust the medication for every illness.  But I am learning to live with it. I carry my emergency hydrocortisone injection with me in case I am ever injured.  And I pop my steroid pills three times a day, at the right time of day, without fail. 

I am lucky to have such a great family, who stuck by me when I was at my worst.  And my life is worth living again. It does makes me sad when I think about how long it took to get diagnosed, because I feel I missed out on a lot of Nicole’s early years. But I can also see why my case was so complex and why it took a real expert in adrenal disorders to pinpoint the cause of my problems.

To anyone else who is struggling with their symptoms, I would say: don’t give up fighting, you can get there in the end.  Not everyone is a textbook case.

Jackie D

To read Jackie's experience with Woman’s own magazine and how an incorrect version of her life story came to be published click here...