My Thyroid Story

Me when I was ill during first months after diagnosis

Here I will tell my Thyroid Story. I hope that it will support others in some way. My battle continues, for myself and for all those who are suffering with b>Thyroid and Autoimmune Disease of any kind.

At the age of 12, in 1974, not long after starting senior school, I was diagnosed with Scoliosis and I must admit that this was a very traumatic time with endless x-rays, hospital appointments, discussions about major spinal surgery and of course wearing a Milwaukee brace for three years. Not great when you are a teenager, as most sufferers will agree. Please see my Scoliosis Story I discuss here my story which has continued to this day. I still await spinal surgery this year and my diary will be documented on this site including before and after photos.

I have included this in my thyroid story as I feel the constant x-rays could have been relevant in the onset.

My story starts in 1981 when I was 19. Although I had not actually been diagnosed with a thyroid disorder at this point, I could not understand why, when I looked in the mirror, that my neck always looked so swollen (and still mis, although they say that my Thyroid gland has almost disappeared).

I worked for a bank in London’s West End and was always very busy, both socially and with my work. People were always telling me how “hyper” I was and I agree now that I displayed some unusual traits!! I knew my mother had had an overactive thyroid but never gave it any thought.

I could never walk anywhere. I always had to run. Run around the office, shopping centres tear around my house. I just could not stay still when sitting and was always leaping up to do something. Relaxation was near impossible and I often felt high one minute and very low and tearful the next. I suffered with irritable bowel syndrome, constant sore throats and was always getting the flu. Still no thoughts of Thyroid conditions. I would never have associated my symptoms with the Thyroid Gland or indeed any disease.

I seemed to get a “crash” in my system and develop flu like symptoms every so often. I always felt hot and even in the winter, could go outside in a t shirt. I had constant thrush (yeast infections) and recurring mouth ulcers and every so often would get covered in a mysterious rash and develop a fever. My periods were very painful with severe uterine cramping. However, sometimes I would just feel the need to sleep and was often nodding off on the train, whether sitting or standing. I actually felt quite burnt out.

At this point, I was also taking an oral contraceptive. My weight was only 7 stone.

Doctors could not put their finger on any specific problem;They certainly did not discuss my thyroid, however the problems settled down and flared up again, then settled. It was not until after the birth of my first child, Sean in 1990, that things started getting out of hand again.

One day in 1992, I suddenly felt really unwell. My heart started racing and I had a feeling of a lump in my throat which felt like it was swelling up when I swallowed. I kept swallowing to try to clear it. I could actually feel it swell. I still did not associate it with the Thyroid. My thoughts were more on throat cancer, especially as I smoked 20 a day.

I collapsed and felt very weak and scared with rapid heartbeat. I was taken to my GP who mentioned panic attacks but on hearing about my swallowing difficulty, arranged for me to go to St Thomas’s hospital in London where I had blood tests and a scan on my Thyroid.

I was told I had a slightly overactive Thyroid……and that was that. No treatment, no follow up.

I carried on with my life, often feeling very odd and weak and not being able to explain why. I did not give any more thought to the Thyroid as I had been dismissed by the hospital. I gave birth to my daughter, Clare in 1993. After her birth I began to feel ill again. Very panicky, weak and tired. I once again went to my doctor who told me it was just tiredness from looking after two small children….yeah right!! He did not mention my thyroid either.

I had regular panic attacks, almost two to three times a day, and could not understand what was wrong with me. Sometimes I felt aggressive and sometimes I felt weak, tired and very tearful. Anti depressants were suggested. Doctors seem to think they are the answer to everything. You would think that a Thyroid problem would have occured to them. Fed with anti depressants when all they needed to do was check my Thyroid!!!

I had a miscarriage in 1997 and I think that’s the point when I became the most ill. I just never seemed to be able to stay awake or complete normal day to day tasks without feeling totally exhausted. I had constant sore throats, fevers and unexplained skin rashes. I could barely stand in my kitchen to do the evening meal so my husband at that time had to cook after a day's work. At one point, my throat was so sore, I could not swallow my own saliva.

My third child, my daughter Niamh was born in 1998 after a pregnancy full of complications. High blood pressure, gestational diabetes to name just the serious ones. The symptoms re started not long after her birth, only this time I knew something was very wrong.

I was constantly exhausted to the point where I could not get through the day without sleeping, weak, tearful, falling asleep, confused. I was so brain dead I was sure I had Alzheimer’s.

So weak, especially my arms and legs, that I was scared I had a degenerative muscle disease. I was always freezing cold, even in the summer and my hair was falling out in handfuls. I felt breathless all the time, so breathless that I wondered whether my lungs were packing up and thoughts of multiple sclerosis and cystic fibrosis and even cancer were always in my mind.

I still felt feverish and the skin rashes cropped up unexpectedly. I started getting severe migraines with flashing visual disturbances that blotted out my vision for up to 30 minutes with each occurrence. I just carried on.

I was referred to the Chest Clinic at my local hospital where I had the relevant breathing tests and one of the doctors listened carefully to my symptoms and ordered blood tests. The results were very interesting. She told me I had an overactive Thyroid and that my blood was full of thyroid antibodies. This meant nothing to me and was not explained in a language I could understand. I was brought into hospital for the day to have various tests on TSH T4 T3. Nothing was being explained and I did not know what these strange letters and numbers meant. Nor did I care. I felt too ill to care. I was referred to the endocrine unit where I was told I had Hashimoto’s Disease, an autoimmune disease of the thyroid. And then I was discharged. No treatment, nothing. I was told I would need regular blood tests and they would write to my GP. That was that.

Life carried on untreated, unexplained. I was not sent any reminders for blood tests to monitor my thyroid.. I returned to my doctor in 1999 with depression and was given the anti depressant Venlafaxine, 75mg twice a day. I had had enough. I had to give up work…after 20 years!!

One day in August 2000, I felt better. Just suddenly felt better. Then my husband and I separated. I had to move house for financial reasons but loved my new Victorian cottage. I admit I had sunk low, but then bounced back. I took up weight training at my local Gym and felt better than I had for a long time. I still felt odd now and again, but put it to the back of my mind. I stopped taking the Venlafaxine and all seemed well. I socialised and enjoyed my children, home, the gym and my friends. I had the odd date but nothing serious.

Then I met my wonderful husband Mike in April 2002. I was very well at the time continuing my exercise regime. He proposed and we decided to get married in March 2003. I decided to start taking the pill again (Big mistake) as I had no desire to go through another pregnancy at the age of 40!! The migraines and weakness and excessive tiredness started again they came on unexpectedly and so gradually I didn’t associate them with the previous illness.I started to feel ill again. I kept quiet.

In the meantime, my much loved father had become very ill and we had a lot of stress and worry. Also the stress of wedding plans….I started to feel ill again, very ill, but said nothing. The familiar weariness….again. My weight dropped to seven and a half stone and kept dropping and I was desperate to put it back on before the wedding but no matter how much I ate I could not put it on. We were married and on the day I felt very rough. I awoke on the morning of the wedding to swollen face and huge eye bags. My skin looked almost jaundiced and was blotchy and itchy.

What’s going on? I had severe palpitations and felt almost near to hysteria. I hoped that I would not get a severe migraine, just what I needed on my big day….not!!

The day itself exhausted me and as the celebrations drew to a close I was so near to collapse I felt desperately worried. We were due to stay in a hotel that night before flying to Guernsey for our honeymoon. We arrived at the hotel and I lay down on the bed and slept through to the morning. Every day I slept for at least 3 hours in the afternoon and on days out I just felt totally exhausted all the time. I put it down to all the excitement. I was stressed to the point where I ached with tension and my heart was beating so fast, I thought I would have a seizure.

Life carried on with me going downhill. Constant tiredness, tearfulness, foul moods, heavy monthly periods which were painful and debilitating, weakness exhaustion, constipation migraine headaches almost daily. I felt like I was going mad. The need for daytime naps increased and I could hardly make it through to evening without total exhaustion. I was constantly freezing cold and had to wrap up or stand up against the central heating radiator.

In 2005 my father was admitted to hospital for what turned out to be the last time. We had spent months of anguish over his failing health, so my own problems seemed irrelevent although it was hard to carry on feeling so weak and tired. I suddenly had a two week bout of the most severe diahorrea I had ever known. I did not think it would ever stop. I was very worried as I knew I had to keep visiting dad in hospital. I went to the doctors and he sent a specimen away. It returned with no results. Hashitoxicosis?

My Dad then developed severe infection of which he subsequently died.

I was devastated and in the year that followed, I gradually became more and more ill myself. Gradually weakening, more and more tired, crying and so unhappy with a weird feeling of complete unreality that unnerved me. I felt suicidal but did not know why.

I went to the GP who put me on Fluoxetine (Prozac) I felt even worse. He put it down to grieving for my father. In Jan 2006 I was at an all time low and spent 6 weeks lying on the settee unable to walk with weakness. I though "I am going to die myself" and felt strangely relieved. Mike was very worried. I felt as though I had cancer in that I was now too weak to walk across a room.I thought "maybe I have multiple Sclerosis?"

I went back to see a different GP in Feb 2006. She then ran some blood tests and told me I had an underactive thyroid and that I had a huge amount of thyroid antibodies. She referred me to the endocrine unit at St Helier Hospital and put me on 25mg of Levothyroxine. The hospital raised the dose to 50mg……and discharged me!!!!!!!!

They told me that I was now back to the care of my GP. I was now taking Levothyroxine, Femodette contraceptive pill, and Prozac.not a good combination as I now know

The Prozac and Levothyroxine did not work together and consequently I became worse. I stopped the femodette after reading myself on a website that they should not be taken together. I had more blood tests and was put on Simvastatin to lower my elevated cholesterol.

I started having regular night sweats and generally felt appalling. I looked like death. I had gained nearly 2 stone in weight and, whilst I needed to gain weight, 2 stone so rapidly made me feel even more sluggish. My memory was poor and my hands shook. My sleep patterns at night were very strange and I spent most of the night getting up to use the toilet. (4 maybe 5 times) I had chest pains and a constant feeling of having a fever.

In the year following I was very ill. I just could not move with tiredness even though I was on the Thyroid medication. I started to do research on my illness. I did not want to live the rest of my life like this. In the summer the GP raised the dose to 75mg then after a few months to 100mg.

After about 3 months I noticed a difference. However, we could not go anywhere without me having to sleep. I could not walk around supermarkets or shops for long and spent a lot of time asleep. I kept researching and in September 2006 discovered Serenity cream which is a natural progesterone cream. I admit to be sceptical, after all I had probably been gradually becoming more and more ill from the age of 27 after the birth of my first child and nothing had been done about it until recently even though the doctors knew I had Hashimoto’s disease.

I decided to take all the advice I had learned from various sources and apply it to myself. Today I am very much improved with many of my horrific symptoms either totally gone or much reduced. Through this research I have also regained self esteem and corrected many of the symptoms which were prematurely aging me.

Please take time to investigate this website thoroughly in order to benefit from what I have learned and see if you too can improve your quality of life.

I will provide reviews of these products along the way, and please remember that they take time to work and by giving up, you may well never find out whether they could have done you as better as me.

One word on Levothyroxine. It takes some time tweaking the dose to reach the optimum level for you. It has taken me a year to notice a real change. In that year, I almost gave up altogether.

Don’t be the same. You WILL get there.

Marianne xxx

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