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Case Studies - Mis-diagnosis

We 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

Moira's Story

Mis-diagnosis of Sight loss

My story is one of a misdiagnosis of my sight loss due to infection, which has lead to a cover up as clinicians close ranks.

However, in 2010 I felt so ill I honestly did not believe I would live much longer.

Thankfully, a friend informed me of a doctor who was helping her friend, that didn’t work in the NHS.  It was Dr Peatfield, who I was told dealt with thyroid problems, which I didn’t think I had but as I felt so ill I would try anything.

Dr Peatfield, I believe, saved my life at that time. I was found to have candida antibodies 5 times the normal range and an adrenal dysfunction and low T3.

I could not believe how much the treatment helped me to feel better and lose the weight I had piled on. The trouble was, I could not afford to carry on with the treatment and slowly everything symptom-wise is happening again and I am now bigger than ever.

I have now been told I have underactive thyroid. Levothyroxine was started at 75 mcg, increased to 100 mcg and now 125 mcg. I was asked if I was taking the tablets as the last results had not changed and still I am piling on weight.

Recently I was sent for a scan of my thyroid. I was told “we look for goitre” which I did not have.  There were some nodules there, which they would expect to see in someone with a thyroid problem but I was told they were nothing to worry about.

I then received a phone call from my GP – the scan report indicates early signs of a goiter.  He doesn’t think it’s anything to worry about but may need some follow up.

A referral was made to an endocrinologist. Then an appointment was made to see a consultant surgeon.  When I questioned this I was informed by the hospital he is a breast surgeon, but does other things as well.  

I wanted to see an endocrinologist and booked a private appointment.  Part of the referral letter reads, “This lady was recently diagnosed with hypothyroidism [actually last September but not treated until January]. She was noted to have a possible goitre [there was no lump] and an ultrasound was arranged (copy attached) [no copy attached]. She is well [joke] with no symptoms of hypothyroidism.  Needless to say I have cancelled this private appointment as this referral letter is a joke.”

5/05/2012

Robert's Story

Mis-diagnosed with Alzheimer’s

I had a partial thyroidectomy in 1995 for a benign thyroid nodule.  I was not put on thyroid replacement following this.  At the same time I was diagnosed with IgA nephropathy (kidney disorder in which antibodies called IgA build up in kidney tissue).

About 5 years following this I began to feel unwell with various symptoms, including feeling consistently cold, memory impairment, co-ordination problems, visual disturbances, brittle nails and hair. 

On a visit to my GP I had bloods taken for thyroid disease; they came back normal.  I was referred for an MRI brain scan and was diagnosed with Alzheimer’s at 44 years of age.  Basically I was told there was no more that could be done for me and referred to a psychiatrist and, following that, a psychologist for cognitive behavioural therapy.

My wife, who is a nurse, was never convinced of this diagnosis and insisted that my thyroid was investigated again.  The results were still normal, with a TSH of about 4.5 and normal T4 and T3 levels. 

By this time my clinical signs were becoming more noticeable and I was no longer able to work, living as a vegetable (I remember none of this). 

Convinced that I had hypothyroidism, my wife trawled the internet and found articles written by Dr Skinner that backed up her thoughts.  She went back to the GP and asked for a referral to Dr Skinner.  The GP refused but very reluctantly, with a lot of cynicism, made a private referral to a local endocrinologist.

At that point the endocrinologist also said that the bloods were within normal limits.  My wife demanded a trial of thyroxine and the consultant very reluctantly agreed on a 14 day trial of it. 

Within 2 days I felt markedly better and totally back to normal within the 14 day trial period.  This transformation took my wife about 5 years of battling the system.  I was in no fit state to fight my own battle.  Without my wife’s efforts I would still have a diagnosis of Alzheimer’s disease.  No one listened to the clinical picture.  As a result of my illness I was invalided out from HM Services, during this time losing out on a very promising service career.  I am currently on 150 mcg thyroxine and stable.

17/08/2011

Judy's Story

My experience of being mis-diagnosed with CFS/ME

Although I have a good knowledge of Biochemistry and Human Biology I experienced 5 years of "living death" before finding out I had been mis-diagnosed with CFS/ME and Dr Skinner confirmed that I was actually Hypothyroid.

When I became ill in August 2006, I was on the verge of bedridden and virtually housebound for months at a time. On my first visit, I asked my GP to test me for a thyroid problem as a friend of mine, who had been diagnosed with a thyroid problem, had very similar symptoms. As I had more than 50 physical symptoms it made sense to me that my metabolism was severely challenged. Therefore, it seemed sensible to check that the biochemical governor of the metabolism (i.e. the thyroid gland) was functioning correctly. My GP did not take kindly to a patient thinking they knew something about their own body, but consented to do a "full panel" of blood tests and his receptionist declared me" within normal limits...no action required". Of course, as many people do, I deferentially accepted that "doctor knows best" and dismissed thyroid problems from my mind.

He referred me to a Consultant General Physician, who said that I had Chronic Fatigue Syndrome and told me "You will get better but I can't say when...come back and see me in 3 months if you don't". After 3 months he prescribed, according to NICE guidelines, CBT (Cognitive Behavioural Therapy) with a clinical Psychologist and GET (Graded Exercise Therapy) with a Physiotherapist who said she had experience of working with CFS. Unfortunately, it became apparent that was not the case, and she clearly did not understand the concept of "graded", as she put me in the gym for 15 mins on an exercise bike and rowing machine. Apart from exhausting me and causing me to nearly pass out, this "test of physical fitness" caused me to relapse for 3 months. Later on, I discovered through research, that any form of exercise for someone with severe ME is ill-advised and could put a strain on the heart. (Of course, as I was secretly a hypothyroid patient, who had a slow metabolism/heartbeat anyway and could not convert food into energy properly, I was exercising anaerobically, it was extremely dangerous and it's lucky I'm still here to tell the tale).

After receiving this private treatment, and despite their prior approval of each appointment, my private health insurer refused to pay out saying that I was not covered for a "chronic" illness. The small print in my policy said I was only covered for acute illnesses. (More than a little unfair, I thought, as I had paid them £45 a month for more than 25 years). Following several complaints and a battle, I got my money back, minus the excess, and promptly cancelled my policy.

Of course, I was unable to work and, after exceeding my contractual entitlement to 6 months sickness pay, had to fight against being given an Incapacity to Work Dismissal after 35 years of service with the same company, as a Senior Manager. Eventually, after a heartbreaking 2 year battle lodging a grievance and appeal, I left my beloved career with (by lucky chance) a redundancy payment and took an early pension. Fortunately, I had the foresight to pay 15% of my salary in AVC's for a number of years, with the intention of taking early retirement, so had paid a great deal of my own money into the pension scheme.

It was my ME Specialist's opinion that my condition was so serious that I could only hope for a partial recovery and would not be able to undertake any form of work again. However, my GP and a Consultant Occupational Health Physician refused to support her opinion and undermined her because she was not qualified as an MD On the back of this, I was refused an enhanced Ill Health Pension because I could not prove that my illness would last until 65. An HR Manager told me "It would be easier if you were a terminally ill person, then we would be certain that you would not recover before normal retirement age". She could not understand why I found this statement offensive!

At every stage I had to fight a battle for my illness to be recognised and taken seriously. I had great difficulty getting Incapacity Benefit and a disabled "Blue Badge". There are countless tales of distressing experiences with Doctors, Occupational Health Specialists, Psychologists, Physiotherapists, Human Resources and the prejudice I've experienced (even from my best friends) because  "You don't look ill" and "You've been ill long enough...it's time you started to get better"... as if I could somehow think my way out of a chronic, physically debilitating illness!! My intelligence has been insulted on countless occasions and I was told by the Consultant Occupational Health Physician that my "erroneous beliefs" about the illness being incurable were preventing me getting better. Qualified professionals still believing that ME is a psychological illness...I ask you?!!

On top of this I've had to cope with the stress of litigation, the unprofessional conduct of a Solicitor and bereavements. My personal relationship suffered and as a result I was left to fight my battle alone without the support of a partner or carer.

On the positive side, my Permanent Health Insurer, Friends Provident, were brilliant and supported me in lots of other ways as well as financially. I researched the illness extensively with the use of information from AFME, the internet and accredited medical publications. I tried changing my GP and had very good help on the NHS from the "Outreach" CFS/ME clinic of Frenchay Hospital under the leadership of Dr. Hazel O'Dowd.

From my knowledge and research, I was convinced that my illness was biochemical and recognised many of my symptoms were similar to those encountered with Adrenal Fatigue. With this in mind, being unable to find an expert in the UK, I found a leading Endocrinologist specialising in Adrenal Fatigue and CFIDS (Chronic Fatigue and Immuno-Deficiency Syndrome) and went out to a government-run University hospital in Kayseri, central Turkey, to consult with him. There I saw 5 professors and 10 doctors in different disciplines with expertise in all aspects of the illness, all under one roof!! The visit was fabulous and boosted me so much psychologically because I was treated with real care for the individual and as an intelligent and knowledgeable woman. (Sadly, this had not been my experience in the UK). Professor Kalestimur, (the Rector of the University and, formerly of St. Bart's hospital, London) very generously said that I knew more about the illness than his own doctors, that they had been privileged to learn from me and that I should consider myself as my "own best doctor." They did many blood-tests, including TSH, but as they worked within the same parameters for "normal" as the UK they failed to find my Hypothyroidism and concluded that my diagnosis of CFS/ME was correct.

However, they confirmed that my new lifestyle, with healthy diet, pacing and avoiding stress had been key to making some improvement. My optimism increased because I could see how far I'd come by accepting and learning to manage the illness. I returned home determined to take up the challenge afresh and not to accept that I had an incurable illness.

However, when I got back to the UK my health started to decline again, I was in a lot of pain and I was seriously depressed, having suicidal thoughts on three occasions.

Then...a miracle! I heard Dr Chris Steele on ITV's "This Morning" talking about the causes of chronic fatigue. In short he advised anyone with this diagnosis to be properly checked for a thyroid problem, ask their GP to consider a 3 month trial of thyroxine and if they were unwilling to prescribe, to ask for a referral to an Endocrinologist to carry out further tests.

This suggested course of action met with huge disapproval from my GP who tried to frighten me with dire warnings of the dangerous side-effects that I would experience from taking thyroxine which would speed up my metabolism and heart e.g. cardiac malfunction and failure or stroke. She neglected to mention that as an undiagnosed and untreated hypothyroid (underactive thyroid) the risks were far greater and consequences including atherosclerosis (furring of the arteries), angina, cardiac arrest, osteoporosis and premature death. While she dismissed the idea of prescribing thyroxine as "outside the conventional parameters of medicine" she did, however, grudgingly say that she would try to find me an endocrinologist who worked in alternative medicine, closer to home than Turkey!"

Frustrated and mistrustful of the GPs’ unhelpful, condescending attitude I decided to find an expert of my own. Through research on the internet I found the answer to my prayers: Dr Gordon Skinner of Birmingham. There was a lot of open, honest information including his CV, medical experience and extracts from his book on the management and treatment of Hypothyroidism, which quickly convinced me that he was exactly the expert I needed to see. I was obliged to visit him privately but found in him my ideal of a caring, old-fashioned MD who does a proper physical exam and diagnoses on history, signs and symptoms as well as blood results. By correcting my diagnosis to  hypothyroidism (aka Myxoedema) and starting me on a course of treatment, this man has literally given me my life back.

Ten years beforehand I had had a bout of Shingles (VZ virus). This virus lies dormant in the body after having had Chicken Pox as a child and often resurfaces as Shingles later in life. It seems that once re-activated this virus continued to devour the cells of my thyroid gland until it was unable to produce thyroxine in sufficient quantity to keep my metabolism functioning correctly and at this point I suffered a complete physical collapse. My blood was tested on 6 occasions during my illness but because my TSH results never rose above 4.2mol/ltr (the upper limit of "normal" at my lab was 5.5mol/ltr) the results were considered "normal" and I was subsequently mis-diagnosed as having ME. My weight increased rapidly from 8 stone to 14.5 stone and I was unable to exercise and nothing I did in restricting portion sizes and sticking to a healthy diet, would shift it.

Over the 14 years since I contracted the Shingles/VZ infection, my experience of NHS treatment was mixed. At best (CFS/ME clinic) it was helpful and supportive. At worst (GPs/Private Consultant GP/Psychologist/Physiotherapist/Occupational Health Physician) it has been condescending, impatient, disbelieving, patronising, dismissive, insulting to my intelligence, inappropriate and incorrect.

On every visit to my GP and Consultants I tried to be respectful, diplomatic and trusting of their wisdom. However, it seems that GPs soon tire of patients with chronic illnesses for which they can find no explanation or remedy. It started off well enough when I presented with the few most distressing symptoms looking for some help in keeping these at a manageable level, but it was obvious that I quickly became a "heartsink" case in their eyes.

With more than 50 physical symptoms, it was impossible to explain in a 10 or 20 min. appointment and it was obviously not possible to write a prescription to sort all that out! So I came away exhausted, frustrated, angry and depressed having been treated like a child and made to feel that I was a hypochondriac. Not surprising that I only visited my G.P. when each particular symptom became unbearable. Also, I felt that one visit per 4 months was not unreasonable for someone who was in constant pain and at several points suicidally depressed about the deterioration in my quality of life. It felt as if, once diagnosed with CFS/ME, I was no more than an irritation to be fobbed off with symptomatic treatment.

Having been mis-diagnosed with ME, I suffered 4 and a half years of utter misery and severely debilitated life.     

Despite the dramatic improvement in my health after a short period of taking Thyroxine, my GP practice refused to accept Dr Skinner's diagnosis and, therefore, I had to continue seeing him privately  and paying for his prescriptions. My GP refused to prescribe Thyroxine for me, as a free prescription on the NHS, saying "It is not in your best interest" and "Thyroxine can have potentially dangerous side-effects". I asked them to explain to me how it could be in my "best interest" to remain hypothyroid, appallingly debilitated and with all the associated risks of atherosclerosis, cardiac failure and premature death? This was very disappointing. It seemed to me that the Practice was more interested in "toeing the line", exonerating themselves of any blame for misdiagnosis, than they were about my "best interest" which must surely be to keep me in optimal health.

Under the careful supervision of my excellent private doctor, Dr Skinner, I gradually increased my dosage of synthetic thyroxine. After 12 months of taking the medication, I have recently reached my optimum dosage of 125mcgs T4 and 40mcgs T3 (combined equivalent to 285mcg total daily dose). My life is now pain-free, all of my more than 50 previous physical symptoms have now disappeared and I am able to exercise and have started to lose weight. It is difficult to express the joy of being "normal" again...my former passion for opera is restored (any noise was agony to me before), just going to the shops for my food, being able to drive more than 10 miles without getting exhausted. My house and body are no longer my prison. I can spend time with my dearest friends, travel, take up my former hobbies and have a social life again. 

It seems like a miracle that I have been diagnosed with hypothyroidism and am receiving treatment with thyroxine replacement. Dr Skinner had given me a name for my illness and knowing it could be cured was like manna from heaven and lifted my spirits more than I can say!  After just 8 weeks of gradually increased medication I found a level of stability and well-being that I thought would never be experienced again. Where my health was less than 20%, after 2 months it improved to about 75%, my metabolism was working properly again, pain had decreased and muscle tone was recovering. Having taken daily medication for eighteen months my health is still improving and is about 90%. With further weight loss, healthy diet and exercise I expect to return to optimal health for my age group.

All of this I have researched, initiated and done for myself. Fortunately, I have always been a very determined, resourceful, independent and resilient woman. In my early life, I faced and overcame many practical and emotional problems. This has armed me for the battle I faced with sudden loss of health, career, raison d'etre, social life, the terminal illness and loss of my mother (who was my only family) and the "attitude" of the medical profession. I have also changed my diet, exercise regime, lifestyle and attitude to illness. Now, I am much more content mentally and have had time to enhance the spiritual and healing gifts that I have had since a child.

Recently, at my request, my GP referred me to an NHS Endocrinologist for a second opinion. She has confirmed, with comprehensive blood tests, that my body needs, in her words, a "hefty" dose of replacement thyroxine (T4) and triiodothyronine (T3) on a daily basis to function normally and that I shall need to take this medication for life. On the back of this, at last, my GP Practice has agreed to prescribe for me, I have been given an exemption to all prescription charges and my blood is being regularly monitored by my consultant NHS Endocrinologist.

Dr Skinner continues to care for me and monitors my progress. He has provided the support and advice which has enabled me to fight for my illness to, at last, be recognised and treated by the NHS.

Added to website on 06/1/2012