Thyrotoxicosis: Personal experiences of living with Thyroid problems
My Thyroid Gland and I
The title of this section almost sounds like Me, Myself and I which in some ways is how undiagnosed thyroid disorders can make you feel. Personally I had a long road to travel before I had my first accurate diagnosis. As my condition raised its ugly head a few times more my life was sent into a spin, in so many ways.
So for any readers who may have a thyroid disorder, or perhaps think that they might, here are some of my personal experiences from over the years.
I hope that this helps and informs, although you must remember it is written from a patient's perspective. I have learned a lot about my condition over the years but I am not a medical professional. Please bear this in mind and make sure that you contact an appropriate health professional with any personal concerns.
When I was a child my mum had a severe weight problem. Probably it was because of this that, as a tubby child, I felt sure that I would simply grow and grow until I was huge. My Mum would always be on a diet but never seem to lose any weight. In fact at one point in her life she was dieting and putting on weight.
Our Doctor would always tell her that she was obviously eating more than she claimed. Eventually, with extremely high blood pressure, she was hospitalised. With a strict regulated 800 calorie diet she still gained weight.
Eventually she was diagnosed with an under-active thyroid gland and started on appropriate medication. Within 3 months she had halved her weight. Unfortunately a few weeks later she suffered a massive brain hemorrhage. She was 55 years old and was left semi-paralysed and unable to speak or function properly. She died 3 years later.
I was 23 years old when she died and had not really read or heard anything much about Thyroid disorders.
A couple of years later I was taken very ill myself. I lost a massive amount of weight very quickly and could hardly eat a thing. My doctor considered anorexia and stress. I left my job at the time and slowly recovered at home. I began to feel well again and resumed my working life.
About ten years later I started to feel ill again. This time I thought I had cancer, like my father. I was thin, had a poor colour and was generally unwell. I felt nervous and twitchy all the time.
My Doctor sent me for various tests and each one came back negative. My health deteriorated and I felt as if I was going mad. I started to suffer from panic attacks and was almost housebound at one point. Each test that came back negative left me more worried. My poor husband was distraught.
The tests I underwent were for cancers and the like. At one point I was hospitalised for ten days with no definite results on any health problems.
Then, on a visit to my Doctors surgery he mentioned my Thyroid gland. He said
"I suppose I should have checked your Thyroid Gland. That was a bit remiss of me"
Those were his exact words.
So a blood test was carried out. Simple, easy and much cheaper than all of the other investigations.
Back then you had to wait ten days for your blood test results. So ten days later I finally had a diagnosis THYROTOXICOSIS, HYPERTHYROIDISM or an OVERACTIVE THYROID GLAND.
I was referred to an endocrinologist. My doctor had by this time started me on a Beta Blocker, in order to ease the strain on my heart. This left me feeling calmer although not 100% better. I took this medication for a couple of months.
The endocrinologist said
"I bet you thought you were going mad, didn't you?"
Well, yes, I had to agree with that.
He also told me that thyroid disorders are often passed along the female line of a family, from Mums to daughters, for example. He thought that in the past my thyroid and swayed between over and under active which explained many of my weight problems.
I was offered Surgery or medication and asked to choose. I was told that treatment with radio active iodine was not usually given if a woman's family was not complete, due to possible ensuing infertility problems. In the full daze of my ill health I had no idea what to say. I just wanted to burst into to tears. It had taken a monumental effort to actually get out of my home and get to the hospital, even though Hubby was beside me.
In the end the consultant took the decision out of my hands and I was started on treatment with a pill called Carbimazole.
These tablets were very tiny and initially I took something like 20 of them a day. With regular blood tests the amount of pills was jiggled until a happy balance was achieved. I took these pills for two years and in that time my health improved and my weight rose. Unfortunately the tiny size I had become whilst I was ill was not to stay. It was so nice though to feel alive again. I was in my mid thirties now.
Unfortunately I had two more episodes of an overactive thyroid gland before being persuaded by the endocrinologist to undergo radio-active iodine treatment. It seemed that every so many years this condition would resurface, especially if I was under stress. My endocrinologist could not understand my reluctance to have the treatment. He said that if my thyroid became under active it would be less damaging to me and easier for my physician to control.I could not explain what I was thinking as I felt foolish.
It was being told that my thyroid gland would inevitably become under active. Visions of my poor Mum filled my head. Added to that I had the strange thought that, if what was expected happened, namely that my thyroid became under-active, and I had to take thyroxine forever, what would happen if there was something such as a war and I could not get my medication.
It all sounds silly now but then it was scary.
I underwent radio-active treatment just over ten years ago. Within three months I became very ill. My face swelled, my eyelids puffed over my eyes, I had lumps under my armpits and I was freezing cold although it was high summer.
My thyroid had become under active but unfortunately dramatically so. I never do things by half.
I was put on Thyroxine which I still take to this day. I shall have to take this medication for the rest of my life. These days I only have a thyroid blood test once a year, unless I start to feel any symptoms. Occasionally the amount of medication I take needs adjusting but not very often.
What finally persuaded me to have this treatment was the endocrinologist telling me that if my disorder kept recurring I would end up having to take Warfarin for the rest of my life. Heart problems sounded inevitable and so I bit the bullet.
My experiences have taught me a couple of things.
Symptoms of overactive thyroid gland or thyrotoxicosis
- Weight Loss
- Itchy skin
- Inability to sit still
- Sweaty palms of the hands
- Rapid pulse
- Panic attacks
- Low level of blood loss during menstruation
- Lack of menstrual cycle
- Bulging eyes
- Heat intolerance
Symptoms of under active thyroid gland or hypothyroidism
- Weight gain
- Dry hair
- Thinning eyebrows
- Always feeling cold
- Skin and nails in poor condition
- Heavy blood loss during menstruation
- Slow pulse
Obviously symptoms may vary. It will sometimes depend on how soon your condition is diagnosed.
Diagnosis is by a simple blood test.
My local health authority treat over active thyroid disorders with Carbimazole alone. However some physicians give thyroxine as well as this medication.
Surgery to remove all or some of the thyroid gland is a more radical treatment. It may only be offered in extreme cases.
Radio-active iodine is usually felt to be a permanent but less intrusive treatment for an over active thyroid disorder. I have been told by some that my condition could return but my doctor tells me that, no, this treatment is a final solution for Thyrotoxicosis.
I attended my hospital's nuclear medicine centre. A liquid is injected into your arm and after a short time you undergo an Ultra Sound Scan. Laying flat the USS takes images of your thyroid gland. This is to check that your thyroid gland has taken in the substance and so is capable of taking in the radioactive iodine. This Iodine is in tablet form. It was held in a test tube and dropped straight into my mouth, without being handled. I was given an instruction leaflet in order to protect myself and my family. For a while, afterwards, you are radioactive. You must not share towels and you need to avoid contact with children if possible.
Having said all of that the treatment does not taste of anything or make you feel unwell. Many patients find that their thyroid may go under active within a few months and so look out for any signs and, or, symptoms.
If you have an under active thyroid gland you willneed to take a thyroxine supplement daily. The correct amount is decided upon by the results of blood tests.
In the UK if you have a permanent under active Thyroid disorder you will be able to receive free prescriptions for all of your medication. This is not automatic though. You will need to get a claim form and have your doctor sign it. This exemption is renewed every 5 years by yourself.
Sorry this has dragged on a little but I wanted to get a couple of points across.
I did learn that the symptoms can vary even for yourself. My final episode of hyperthyroidism had totally different symptoms to those in the past. As I was older I put all of the changes down to the menopause. By the time I consulted a doctor my thyroid was well and truly out of control. The doctor told me that in effect this excess of thyroxine was poisoning me. No wonder I was so ill.
Some foods are thought to aggravate Thyroid problems and smoking will definitely makes matters worse. This is why I quit.
Donkey's years ago the thyroid gland and its disorders were not as understood as these days. This meant that people were often thought to be crazy. I can believe that.
As all that is needed, to check that your thyroid gland is functioning correctly, is a simple blood test, ask for one if you have any of the typical symptoms. It probably will be nothing but it is far better to catch such a condition sooner rather than later, trust me.
Such a condition left misdiagnosed or undiagnosed can wreak havoc on your whole life, and yet can be easily treat.