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.

INITIAL TREATMENT

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
  • Depression
  • Itchy skin
  • Inability to sit still
  • Sweaty palms of the hands
  • Rapid pulse
  • Anxiety
  • Panic attacks
  • Low level of blood loss during menstruation
  • Lack of menstrual cycle
  • Bulging eyes
  • Irritability
  • Palpitations
  • Fainting
  • Heat intolerance

Symptoms of under active thyroid gland or hypothyroidism

  • Weight gain
  • Dry hair
  • Thinning eyebrows
  • Depression
  • Always feeling cold
  • Skin and nails in poor condition
  • Heavy blood loss during menstruation
  • Lethargy
  • Fatigue
  • Slow pulse

Obviously symptoms may vary. It will sometimes depend on how soon your condition is diagnosed.

Diagnosis

Diagnosis is by a simple blood test.

Treatments

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.

Finally

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.

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Comments 14 comments

ethel smith profile image

ethel smith 5 years ago from Kingston-Upon-Hull Author

Sorry for the late reply. I wanted to read your comment properly when I had time. I am glad you mentioned the not taking your meds too close to food. I always take mine just before breakfast. I will try to leave a little time thanks


Nell Rose profile image

Nell Rose 5 years ago from England

Hi, ethel, I could have written this! I found this as I was looking to see if anybody else had written about it. In 2003, like you, I lost so much weight and I was constantly shaking. panic attacks, crying etc made it worse, until one day, walking down the town I nearly fell into the road. up until that point I had been working, so it was a routine, and as the day went on it calmed down. Then I got made redundant, and thank goodness for that! because I was doing more physical things it showed up more. my doctor phoned me after the blood test and said, ' go home now, if you have an accident and end up in hospital you can't have any treatment because it could be fatal!' talk about panic! on the number scale, i.e. blood test, normal people are the number 6-8. I was 18! my body was eating itself, as they called it. I was given Carbimazole, and after a weeks treatment, I went into spasms and ended up in bed, in absolute agony. after 6, yes 6 hospitals visits, where they said they thought I had arthritis!, not one doctor realised that I was having a reaction to the Carbimazole! I felt like I had been run over, my whole body was in agony! in a nutshell, I had the radioactive tablet, no side effects, and I read a book, good doctors!!, not one told me to change my tablets!, and changed them to propolthourasil. this was fine. then, just like you, it went high to low! my whole body and face swelled up! bags of water were under my skin on my face! now I am on levothyroxine. the trouble with the whole thyroid thing is that even though we now know what it is, it is so subtle it can creep back up or down without you realising it. at the moment, I have put on a stone in weight. surprise, my thyroid is very low again. evidently I was taking the tablet to close to food and drink and it wasn't working. try again! any other illness, you tend to hear about it more, so can keep an eye on it, with thyroid trouble it is never mentioned, so it is trial and error, sorry for going on! thanks nell


Suki C profile image

Suki C 7 years ago from Andalucia, Spain

Thanks - I'll give that a try :)


ethel smith profile image

ethel smith 7 years ago from Kingston-Upon-Hull Author

As it is on loan Suki I will have to ask the current person. I think though it was something like understanding your thyroid.What I liked was a) it was cheap and b) it was in plain English.

There were different scenarios showing types of cases. I read Ann's story and thought blimey that's me. This was when my symptoms were different to before.

If you ask your chemist he may be able to get you it.


Suki C profile image

Suki C 7 years ago from Andalucia, Spain

Thanks for your reply Ethel - do you remember the title of the book by any chance? I find it's sometimes easier to access info on the printed page where I can mark notes on it for reference.


Larry Ivey profile image

Larry Ivey 7 years ago from South Florida

It is good that you have written and posted this hub. Very informative. I appreciate your efforts. And, I wish you quality health.


ethel smith profile image

ethel smith 7 years ago from Kingston-Upon-Hull Author

Suki good luck. When I was really confused I bought a basic book from my local chemist. At around £2.50 it became priceless. So many people I know have, in recent years, developed thyroid probs and this book seems to be permanently on loan to someone or other. The main advice though is if people do still not feel well, to return to the doctor for investigations. I told a work colleague this sometime ago and she pressed her doctor. It turned out she had thyroid cancer and needed urgent treatment. To this day she says that I saved her life, which of course I didn't.

Once your condition is under the appropriate treatment you should be fine Suki so try not to woryy.


Suki C profile image

Suki C 7 years ago from Andalucia, Spain

I have recently been diagnosed with both under-active thyroid AND possible thyroid eye disease, confused? -well I am.

This was in the UK and now I'm moving permanently to Spain so I'm dreading having to try to get the balance of meds right when I don't speak the language fluently.

I shall investigate some of your links above to arm myself with as much info as possible.


ethel smith profile image

ethel smith 7 years ago from Kingston-Upon-Hull Author

Thanks for stopping by rmcrayne. It is amazing just how many people have these problems. Not just the disorder but the poor diagnosis and treatment. Let me know when your hubs are all completed and I will add links to this one thanks.


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas

Ethel, thanks for bringing attention to the frustrations of thyroid disease. I was undiagnosed for years of course, before being diagnosed, but undertreated in 2003. My story later to come. That will be my part 3 of How Western Medicine Failed Me, and I am now working on part 2! In my experience, most doctors are still pretty uneducated in thyroid disease. I got the "crazy treatment", and I'm a (non-physician) medical provider myself. I was shocked to be treated so dismissively. I was certain that I was under-treated for thyroid, and was right of course. After several years with no satisfaction from physicians, I turned to Alternative Medicine providers. My favorite resources are Mary Shoman and drrind.com.


ethel smith profile image

ethel smith 7 years ago from Kingston-Upon-Hull Author

Thanks guys. Hello-if you still feel unwell ask to have your bloods checked again. Some people's, like mine, swing about a bit before settling over or under.

Yes Ioua. I hope other people are diagnosed more quickly than I was.

I guess the rule of thimb should be if you still do not feel well go back to the doctor, and insist on further tests etc.


loua profile image

loua 7 years ago from Elsewhere, visiting Earth ~ the segregated community planet

Very informative article, thanks for the details... Now only if doctors would read this so they might diagnosis it problem more efficiently...


Hello, hello, profile image

Hello, hello, 7 years ago from London, UK

I was diagnosed with under active thyroids and they kept sending me to scans and blood tests. Then all over sudden they said I haven't got it but I think I still got it. My mother also had problems with thyroids and I don't know which one.

Anyway, that is enough of me. Thank you for writing such a detailed article.


H P Roychoudhury profile image

H P Roychoudhury 7 years ago from Guwahati, India

good information.

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