Welcome to our website. It's always a work in progress and your feedback is welcome
     

 

 

Case Studies - Hypothyroidism

sharing storyWe are collecting case studies from people who have become well through taking thyroid medication, and from people who are still suffering symptoms of thyroid disease despite taking thyroid medication.

If you would like us to use your story as a case study, you can submit it to us online here

I have been suffering for years with loads of symptoms including weight gain, hair loss, breathlessness, constipation, dizziness, intolerance to cold, palpitations, tinnitus, acid reflux, high blood pressure, heavy periods (then they stopped for no reason for 38 days), phobias, sinusitis, lack of confidence, oversensitive hearing and hoarse voice. Just lately things have become even worse having red and burning palms, coarse hair, numbness and tingling in my arms and blurred vision. I also get really bad migraines. I am starting to feel like a hypochondriac. It just seems to be one thing after another. I feel like I'm going mad as no one can give me any answers at all. My blood test came back in the normal range and I'm left feeling bewildered. How can so many things be going on with no answers? I honestly feel like I will die before someone pinpoints what the problem is. I really need some help PLEASE. I have seen some TV programmes where doctors have said others should treat the symptoms rather than taking too much notice of blood test results but when I went to see my own GP he said that this was wrong and he couldn't give me any medication. I asked to be referred to an endocrinologist who laughed straight in my face and said if your blood tests say you don't have it then you don't have it! He said there were no explanations at all for all my symptoms and that was the end of that and here I am, with still no answers and no medication for my symptoms. I have also undergone two spine operations that give me enough to cope with in life without all the extra conditions going on. Can any one HELP???? 24/11/2008

In 1999 I was diagnosed with an under-active thyroid. I was very relieved to find out what the trouble was as I had not been feeling very well for number of years. I was assured that when I was on the correct dose of thyroxine and was balanced, I would be feeling more like my old self.

Within a couple of days of taking my prescription of thyroxine tablets I had very bad side effects. These included a strange un-relaxed, tiring energy, a rash around my neck, an inability to sleep at night due to tossing, turning and restless legs, eyes that watered constantly and a dry mouth and inflamed itchy lips to name but a few - my whole body seemed to be out of sync!

I initially thought these effects would gradually wear off but the longer I was on the thyroxine, the worse I felt. I was told, in no uncertain terms, that it was definitely not the thyroxine causing the side effects.

I decided to do my homework about thyroxine and get "my little grey cells" working, which was not easy. I discovered that, yes, it was unlikely I was allergic to the thyroxine itself but what could be causing the reaction was the fillers used to pad out the tablets.

I noticed that each time I was given a new prescription, the chemist usually dispensed a different brand of tablet. Due to trial and error I managed to find a brand that my body seemed to tolerate far better than the other ones. This brand was manufactured in Wrexham by CP Pharmaceuticals. To cut a long story short, armed with this knowledge and the support of an excellent endocrinologist, I gradually began to feel better.

For several years I only used this brand. When I subsequently moved house and changed doctors, I asked to be prescribed this brand only.

A few months ago, I started taking my new prescription of CP tablets and within a few days, to my horror, the allergic reaction returned.

I did my homework again and learnt that CP Pharmaceuticals had been bought by a company called Wockhardt - an India based company that had recently closed down the manufacturing plant in Wrexham and moved it to India. I am absolutely certain that although they may not have changed the formulation of their tablets, the fillers used may be from a different source.

I discussed the situation with my doctor and mentioned Evotrox, a liquid thyroxine that did not contain so many fillers. She prescribed it for me and I cannot believe how well I feel on it. My head is clear, the energy I have is relaxed and I do not feel worn out and over-tired.

I hope other people who have experienced side effects similar to mine with thyroxine tablets and who have been told that all brands are the same, will have some food for thought!

14/11/2008

Where to begin...I had my son in 1992 at the age of 29 - no problems - some gestational diabetes but otherwise all fine.

About 4/5 months after the birth, my mum noticed my neck looked 'thick' as she called it (I thought it was a bit personal myself!)

As I was staying with her, I went to see my old family doctor. He did a blood test and told me to see my own GP when I returned home, which I did. Same blood test and referred to an endocrinologist, who decided to do a hemi-thyroidectomy.

So, baby was sent to mum and I went into hospital. The operation was no problem and a biopsy of the remaining tissue was taken.

I received a phone call 5 days after the op asking me to come back to the hospital as the endocrinologist needed to speak to me - I was slightly worried.

I arrived to find out that the part they had removed was fine but the half they left was malignant and I would need to have the whole op again. This was done a few weeks later. Whilst I was at home waiting for the op I was trying not to think I was walking round with cancer - stressful beyond belief with a baby to look after!!!

I had the op and was then referred to the Nuclear Medicine Dept at Guys Hospital to have radioactive iodine. The hardest part was not being able to hold my son for fear of me radiating him – I felt like something out of the Fantastic Four!!

All this happened in 1992/93. Since then I've been on 200mcg of thyroxine with yearly blood tests. I have been great and nothing else untoward happened in the 'thyroid area'.

Now aged 45, I take life by the horns – I went back to University and trained as a nurse. I do get tired and lethargic and my weight gain has increased but that's probably my age - hormones affect us at any age!

I can honestly say that the only real problem I sometimes have is convincing my GP that the levels of thyroxine need to be kept as high as they are to make sure the pesky cancer cells don't raise their ugly heads! I have a brilliant endocrinologist though, who I always refer to.

All in all....I'm good!

12/11/2008

I had suffered for many years with the most debilitating carpel tunnel syndrome.
I have taken prescriptive medicines, creams, you name it. My doctor said the only other thing to try would be an operation.

I visited the doctor soon after with a dreadful thirst, which had continued for over a week. I thought I must be diabetic. After they ran several blood tests, they discovered that I was not diabetic, but that my thyroid was a bit on the low side.

Since I have now taken 50mcg levothyroxine for well over six months, my carpel tunnel syndrome has completely cleared up - like magic.

What a relief and thank goodness I didn't elect for the operation!

18/10/2008

Mum, Me, Our Thyroid and
That Little White Tablet – and Now my Daughter

By Gina Spence

Gina 1999Returning from high school a neighbour ran out of her house warning me that my mum had fallen that afternoon and was in a "bit of a mess". Her face was swollen and grazed and her hand cut. An old man had brought her home in his car when he saw her fall – she was 34 and this was one of many falls she had suffered over the past 4-5 years, one involving a broken ankle and mostly in an afternoon.

One of the worst symptoms mum suffered and which she used to cry over was an itch – the word Betnovate is instilled in my memory as something Mum always had to have in the house. The itch used to drive her crazy and started when she was a young woman and was a mystery to her doctor who could not find a reason for it.

My beautiful mum was a worry to me as a child - because there was no doubt about the fact that Mum was an exceptionally good looking woman, I only wish I had inherited those picture-book looks! As an adult at a school reunion some 20 years after this event, I said to an old pal "Oh, my mum does worry me". She commented that I was always saying that when I was at school.

Mum was always flying off the handle being very emotional, suffering from depression and anxiety and her thoughts were muddled, I often wondered if there was something mentally wrong with her. She had been unable to work since I started junior school. She could no longer crochet or make dresses - something she used to love to do.

Most of my childhood had been spent as an only child as Mum had been unable to conceive again. When I was fourteen my parents announced that at last I was to have that much wished for brother or sister, she was then 38 years of age.

When Mum was about 55 years of age I was so worried about her I wrote a lengthy letter to her GP because I really was at my wits end with her confusion, depression, tiredness, feeling cold, constantly constipated and now the complication of the change of life was added to it (she seemed to have got gradually worse over the years). She was also unsteady on her feet and the falling had escalated. Also her walking had become odd. The letter to the doctor had to be a secret as Dad was so old fashioned he did not like interference such as this. However, Dad could not cope anymore with her moods although he didn't seem to want to do anything about it. I think he thought she had mental problems and wanted to push it under the carpet as he had been doing for many years.

My letter must have prompted tests because the next thing I knew Mum was on thyroxine and had a 'thyroid problem'. This is the first time I had come into contact with thyroid problems and wish at that time I had taken more interest and tried to help more. My poor mum was still ill after that - whether the damage caused by what I now know to be an untreated underactive thyroid, was now permanent after having the problem for so many years, I am still not sure. Mum was never 100%, even after her 100 mcg of thyroxine a day. Maybe the dose was not correct and, who knows, perhaps she also had B12 deficiency.

In later years, when Mum was eventually taken into a residential home and after having numerous strokes, some doctors did mention that they thought she had a type of Alzheimer's but admitted that it was a strange kind and I thought, "Well, if they are right, it is strange indeed as it must have started when she was about 28!"

Mum is now in a nursing home because of the repeated strokes and is totally bed ridden and cannot talk but makes lots of noises that she thinks are words, I am sure of that. She is doubly incontinent, cannot walk and can only eat liquidised foods. However, she is always smiling and laughing and recognises me and her grandchildren as soon as we walk in her room – so Alzheimer's – I don't think so!

I often wonder whether, if I knew what I know now, I could have helped Mum and perhaps she would not have been where she is now. I am a lot wiser and know so much more about the subject because…………, well, I now have an underactive thyroid too. I would like to tell my story, which has a much happier ending, thankfully, but just as lengthy a beginning!

 

GinaWhen I was 28 years of age, I woke up one morning and looked in the mirror as usual whilst brushing my teeth and almost dropped the toothbrush when I saw the swelling in my eyes and face. I could not believe it - this was completely new to me. "Was this old age coming on," I thought? I immediately weighed myself, as I was very weight conscious, and noticed that I had put on half a stone.

Over the next few months the swelling did not stop and I started to feel unwell. My weight rose further, even though I was eating like a mouse, and my periods became more frequent. Also my breasts started lactating. It was 8 years since I had had a child so I thought that this was not right.

I made various appointments at my doctor's over the next few months complaining of tiredness and very worried about lactating and the obvious fluid retention that I was suffering. My PMT was also much worse.

My doctor referred me to a gynaecologist - I think to get rid of me as I was a 'heart sink' type of patient. I saw various specialists, which was very embarrassing when they wanted to see my breasts lactate!

I had an x-ray of my head and then I had to go to the hospital in York to have a CT scan of my pituitary gland as they thought they had seen something on the x-ray. Eventually, I was told that everything was fine and told to, 'sit back and look forward to the change of life' and was sent out of the office clutching a prescription for water tablets and antidepressants.

They did send me for an exploratory examination, which involved a night in hospital. The next day the doctor said - and these were his exact words, I will never forget them – "There is nothing wrong with you. Go home, lose weight and start looking your age again!" This was not very helpful when I could not lose weight anyway!

So, between looking forward to the change of life, losing weight, looking my age, taking fluid tablets and antidepressants, that was the only advice or treatment I was given. I was very upset and frustrated but so sick with it all that I decided to live with my new shape and fluid tablets (which I always took on a night even though it disturbed my sleep because it stopped the morning face swelling). My husband was sick to the teeth of hearing about it too and was very unhelpful. We tried for another child and surprisingly I could not conceive which was very unusual for me! After two years of trying, I finally became pregnant with my daughter and seemed a lot better after that, I quickly became pregnant with my son which was normal for me. I now had four children and decided that was enough. I was 33 years of age by then. My new weight had settled at eleven and a half stone and I was content with that. I was sick of starving myself to try and gain my old figure and not getting anywhere. I seemed to be going through some kind of stabilisation.

Things ticked on very well over the next few years except I developed asthma and allergies. I also had postnatal depression after my son was born and continued on Prozac and fluid tablets for years. The Prozac helped with my PMT - I found I could just not manage without them and my doctors just kept giving them to me as my son had ADHD, making my life very stressful.

By the age of 45 I was still on this regime and had gone through a very traumatic time - a divorce, a stay in hospital with pneumonia, worsening asthma and I had lost my home. I moved town and my son had a near fatal accident (he fell off a roof 20-30 feet and had multiple skull fractures which left him with 10% brain damage to his frontal lobe.) It was a terrible time and I really thought I would crack some days. Looking back, I don't know how we all got through it especially his time in intensive care.

On the bright side, over the past 5 years I had also gained a degree - a 2:1 in business, a Postgraduate Certificate in Education and Training and had secured a job at a local college. So, it had been a very busy time for us - my daughter, son and I. I have learnt since that stress can have an adverse effect on the thyroid so it is no surprise that I started to have symptoms again.

My health at the age of 45 onwards started to take a drastic turn for the worse. I developed breathing problems - my asthma was terrible - I was getting infection after infection and was hospitalised because of it 3 times. My periods stopped, I gained loads of weight, and I was so tired that all I did was sleep and work. I was confused, sometimes, and my memory was poor and getting worse! I used to get very dizzy in the afternoons and felt the need to eat loads of sugary things. I would, after the episode had passed, make my way to the canteen and buy a bottle of Lucozade.

I stopped smoking because I thought my breathing problems would improve and when they didn't I visited my doctor over and over. Eventually, after 18 months of abstinence and no improvement I was getting quite frustrated.

I cannot remember how many times during this the worst period of my deficiency, which was probably the last 3 years before I received any treatment, that I had been in a doctor's surgery crying, saying I am so tired, I am so depressed, I cannot work, I have had to drop my hours! They said it was the change of life! One doctor asked me if I got hot flushes. I said, "No, not really, I get cold ones at night and terrible cramps in my legs." He looked at me as if I was mad!

They would do blood test after blood test, often mentioning my thyroid and I would sort of think about it but my head was in such a fuddle I never persisted with it. They always said, "Oh, it's ok, it's in RANGE! This saying has now become an anathema to me "It's in the RANGE".

I could not concentrate and thought I was going mad. I have never, ever felt so desperate in my whole life. The tests would come back – "It's normal - you are in the range" and then they would send me out with fluid tablets and antidepressants again.

Finally they booked me an appointment to see a chest specialist. I told them that I could not understand how my breathing was worse because my peak flow was no different from before – I have never been good at blowing in one of those things so it was poor but no different than before but I could barely walk. It still gets me so very annoyed when I think of how ill I was then and they did absolutely nothing.

By July 2007, I was on the verge of losing my job. I had my annual review and it had been terrible. My boss accused me of being almost incompetent. I walked out of my review in tears, which was a common thing for me now and uncontrollable. Once I started I would cry all day! I could just not cope any longer and walked to the nearest shop and bought a packet of cigarettes. I thought. "Well, if I have to live like this, I would rather not live any longer than necessary" and I started to smoke again. Funnily enough, within a week or so I started to feel a little better but not enough to make my life change - it was just a bit more bearable. When I mentioned this to a thyroid specialist later he said, "That is because cigarettes temporarily raise your metabolism so you were experiencing a little relief".

I was 51 when one wonderful October morning, I went to the doctor's and saw a lady doctor that I had never seen before. I sat and cried and told her I was eighteen and a half stone and hardly ate anything and that my daughter told me she wanted another mother. I was a pathetic wreck and was just getting over a bout of shingles. At that time I was catching every bug that was around and obviously some that were already in my system were coming alive. Also my urine stank which had been a continual problem for me for a long time.

She looked at my medical records on the computer and told me that I had had a lot of infections in the past year. Then she looked at me and stared at me for ages. She asked me again about my symptoms. I told her I was losing all my body hair and that my head showed patches that were bald and cried again - it makes me cry now when I think how terrible I felt. This seemed to catch her interest and I told her how tired I was. I told her that my daughter says all I do is sleep, I had no social life and had not had one for a number of years. I told her that my periods were totally gone now and that I expected that by 51 but to lose a lot of my body hair and all of the hair under my arms - I just did not feel like a woman anymore. She said, "That's your thyroid!" and immediately started looking up my old blood tests. She turned the screen so I could see and showed me how my tests (TSH) had been going up each time. She told me I was border-line. I am so glad she did not do as the other doctors had done for years and told me that I was within the reference range!!!

I went home after this visit with a new purpose and searched the internet for information. I found a thyroid support group and researched the subject. When I did, I found out that I had been suffering from the symptoms of an underactive thyroid for years and was fuming. What have these doctors being doing to me? Why have they not realised what was wrong with me? Why did they not look beyond the blood tests? What about my adrenals too? I was armed with loads of information for my next visit to my doctor's and I kept my lady doctor as she seemed as if she was the only one out of the panel who knew what she was doing.

My lady doctor did not give me the thyroxine immediately but did a barrage of blood tests. I went back and found that I was anaemic, my blood cells were abnormally large and my B12 reading was about 100 so she gave me a B12 injection. My iron level was low too and she gave me folic acid. Also the tests showed that I had an infection. She started me on 25 mcg of thyroxin! She told me she would try this and see what happened. That was the start of my improvement.

By February I was on 100 mcg and starting to feel like a new woman. My doctor told me to stand on the scales during my February visit and I found that I had lost a stone! She said, "Look - you have lost weight without even trying. Now you can go on a diet".

So, encouraged, I started eating healthily and have now lost over 4 stone. I had a brilliant review at work - my boss told me I am like a new woman! I am now on 150 mcg of thyroxine. My breathing has improved no end and I have not had a chest infection, touch wood, since October last year. I have not had to take any steroids either. This is the first time for about 7 years that I have not been on steroids at least 4 times a year. I am also cutting back on my inhalers and am planning to stop smoking again. I have also started at the gym as now I can breathe, my doctor has given me a prescription for exercise and after the sedentary life I was forced to live for the past few years, the exercise is doing me the world of good. I could not have even contemplated going to the gym this time last year - all I was contemplating then was how soon I would be in a wheel chair!

If someone had told me this time last year that I would feel so well and weigh over 4 stone less now, I would never have believed them. Isn't it marvellous, what a little white tablet can do?

The thing I worry about is how many other people are suffering because of these stupid blood tests. They do not always give us the full picture. My TSH has never been out of range but as you will have read, I have had some very bad symptoms - more so than a friend of mine who had a TSH of 100 when she went to the doctor's. She said she was only feeling tired and her periods had stopped. I really think that more research needs to go into these tests - matching symptoms with blood test results or these tests will carry on ruining lots of people's lives.

I feel as if I have had years of my life wasted - the last seven were the worst years - the years that had a real impact on my quality of life. I am now picking up the pieces but I am not that unrealistic to think that I am going to feel 100% in a few months. It took years for me to get as low as I was and it will take time before I am functioning normally - I have a lot of ground to catch up on.

GinaMy daughter now has B12 deficiency but this would not have been found out if I had not pressed them to do tests. She is now receiving B12 injections - thank God they have not made her wait until she was anaemic before they did anything, as they did me. They have also said they will keep an eye on her thyroid levels too - her TSH is normal but her T4 is low/normal. They did some hormone tests and they were abnormal so she is having them done again.

So, thanks to the knowledge I have now, my daughter will NEVER suffer as my mother and I have done!!!!

P.S. I have lost another 71b and my doctor is thrilled! I have been on Adrenal Extra for only a month and this has already made a big improvement, which I hope will continue.

15/09/2008