This website is dedicated to the millions of thyroid patients who are being ignored and left to suffer unnecessarily, and to healthcare practitioners, who want to better serve those patients.

Patients Stories – Mum & Me And That Little White Tablet

My beautiful Mum was a worry to me as a child because there was no doubt about the fact that my 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.
Most of my childhood had been spent as an only child as my 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 my Mum was about 55 years of age I was so worried about her I wrote a lengthily letter to her GP because I really was at my wits end with her confusion, depression, tiredness, she was always cold and was constantly constipated and now the complication of the change of life was added to it. She also was unsteady on her feet and the falling had escalated, her walking had become odd too. The letter had to be a secret as my Dad was so old fashioned he did not like interference such as this. However, my Dad could not cope anymore with her moods but did not seem to want to do anything about it, I think he thought she had mental problems and wanted to push it under the carpet so to speak and he had been doing so for years. My letter must have prompted tests because the next thing I knew Mum was on thyroxin and had a thyroid problem so Dad said. 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 still am not sure. But she was never 100% even after her 100 mcg of thyroxin a day. Maybe the dose was not correct and who knows perhaps she had B12 deficiency also.

In later years when my 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 Alzheimers 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! My Mum now is in a nursing home because of the repeated strokes and is totally bed ridden, cannot talk, but makes lots of noises that she thinks is words, I am sure of that, 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 Alzheimers I dont think so!

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

When 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 age coming on I thought?

I immediately got weighed 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 scant and more frequent. Also my breasts started lactating. It was 8 years since I had had a child so I thought this was not right. I made various appointments at my doctors over the next few months complaining of the tiredness and very worried about the 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 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. As a check they sent 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 very helpful when I could not lose weight anyway!

So between looking forward to the change of life and losing weight and 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. 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 11 and 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.

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, I had been in hospital with pneumonia, my asthma continued worsening, 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 dont 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 -the three of us now my daughter, son and myself.

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, I was so tired all I did was sleep and work, I was confused sometimes and my memory was poor and getting worse! I stopped smoking because I thought my breathing problems would improve and when they didnt 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 the worst period of my deficiency, which was probably the last 3 years before I received any treatment, when I had been in a doctors 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 said do you get hot flushes? I said no not really, I get cold ones on a night and terrible cramps, 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. 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 its normal you are in the range and then they would send me out with fluid tablets and antidepressants again, finally booking me an appointment to see a chest specialist. I said 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 was accusing me of being almost incompetent. I walked out of my review in tears which were 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 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 doctors and saw a lady doctor I had never seen her before. I sat and cried and told her I was 18 and half stone and hardly ate anything and my daughter said she wanted another mother. I was a pathetic wreck and was just getting over a bought 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.

She looked at my medical records on the computer and said you have 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 cried again, it makes me cry now when I think how terrible I felt. I told her how tired I was, I said my daughter says all I do is sleep and my hair on my head is falling out I cried. My periods were totally gone now but I expected that by 51 but to lose all my hair in my private places and under my arms, I just did not feel like a woman anymore. She said thats 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 had been going up each time. I was on the border line she said.

I went home after this visit with a new purpose and searched the internet for information. I found a site called Thyroid Patient Advocacy 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 doctors 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 thyroxin immediately but did a barrage of blood tests. I went back and found that I was anaemic, my blood cells were abnormally large also my B12 reading was about 100 so she gave me a B12 injection and also my iron was low too she gave me folic acid and foliate. Also other things were wrong on the tests which showed infection or something. She also started me on 25 mcg of thyroxin! She said we will try this and see what happens. That was the start of my improving, by February I was on 100 mcg and starting to feel like a new woman. She told me to stand on the scales during my February visit but I was afraid to, anyway after a bit of wrangling I did and 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 now I have lost 4 stone, had a brilliant review at work, my boss said I am like a new woman and am on 150 mcg of thyroxin. 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 which is the first time in about 7 years that I have not been on steroids. I am also cutting back on my inhalers and am planning to stop smoking again. I am also contemplating, well planning really, starting the gym. When I mentioned adrenals my doctor was not so responsive and instead she gave me a prescription for exercise and after the sedentary life I was forced to live I am sure the exercise will do me the world of good. She said that exercise releases certain hormones and chemicals into the blood stream that would improve my overall wellbeing including my adrenals. So I can only go by this until I research things further and also see the results.

The only problem I have now is arguing with my doctor that I want to stay on 150 micrograms of thyroxin as she wants to put it down now that my bmi has dropped so drastically. But with the help of the TPA site with which I have had wonderful support from I am planning my arguments against this. If someone had told me this time last year that I would feel so well and weigh 4 stone less now, I would never have believed them, isnt 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 doctors. 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 results or these tests will carry on ruining lots of peoples lives.

I feel as if I have had seven years of my life wasted, those 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. It also impacts on your finances, I had to cut my hours in order to survive at work and now I am also picking up the financial ruins that caused and trying to put that right. So all in all misdiagnosis can have a massive effect not just on your health and wellbeing but on the life of your whole family, it has far reaching effects.


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