The hypothyroidism and me

about the book

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New: The English translation of the book can now be ordered here.

"Hypothyroidism is a chronic illness caused by underproduction of the body's thyroid hormones. This book gives a rare insight into the many facets of hypothyroidism."

"Løhre, teacher and school psychologist, has written a personal and vivid story which describes the course, symptoms and treatment of her illness. Some of the symptoms call to mind dysfunction due to head injury or ADD (attention deficit disorder). This applies especially to difficulties with concentration and memory, but also to rigidity and susceptibility. Sensitivity to sound and light has similarities to autistic patterns of behavior."

"The book also takes up conditions which are central in all chronic illnesses: anger over being ill; hopelessness; grief and - finally - reorientation and adjustment to a new mode of life. In addition, questions concerning period of restitution, degree of recovery and complications are discussed."

"The book is useful reading both for professionals and those who are affected by hypothyroidism, whether it be the patient or persons close. Professionals and students will find this book to be an enriching supplement to existing literature. The author's close-up of experiences with hypothyroidism should inspire to research in this field."

Harald Martinsen
Psychologist, Professor at the Departement of special needs education, University of Oslo, Norway

To all of you

So very tired

I was only
so very tired
I wanted to
break
huge store windows

I begged for help
without saying it
in words

I was diagnosed with hypothyroidism ten years ago. This illness has changed my life. Academically, I am a teacher and psychologist. Professionally, I am a school psychologist. I have three sons who have grown up with a hypothyroid mother and a husband who has learned to know the illness on the inside. They are all a part of this story.

The condition has forced me to set other goals and give my daily life a somewhat different content. I lost much, but through later years I have gradually gained back parts of myself. I accomplish more and more of things that I mastered before. The progress is slow, so slow, but it hasn't stopped yet - so there is still hope. It seems as if time is the most important factor to regaining my health, after having been as mentally reduced as I was.

There are several reasons why I have chosen to write down the experiences and thoughts I have had in my "co-existence" with hypothyroidism. One important reason is that I want to contribute to a better understanding of the illness. I hope that what I can tell will give both increased knowledge and increased insight. Perhaps it will lead to someone wanting to learn more about hypothyroidism through further reading. Perhaps individuals or professional circles will start research that can enlighten and give growth to this field of study.

But first and foremost this is a story intended as a special letter

To all of you who have similar experiences,
both to you who have been given the diagnosis and to you who feel that something is amiss, but don´t yet know what it is. To this last group, I want to say: seek help in time. The longer you torture body and soul, the longer the road to recovery will be. Be concrete with what information you give about yourself. If you barely are able to fix dinner for your family, well- say so. Tell about how you used to do it and tell about what it is like now. Maybe you have stopped grating the carrots. Maybe you have cut out making gravy. Maybe you are so tired after the duties of the day, that you put the casserole on the table without heating it up? Most doctors will be observant of behavoir that clearly deviates from the normal and of changes in the patient over a time.

Personally, I feel that it is difficult to talk about my experiences. It is only my husband and my doctor who have heard the worst of it all. To everybody else, I have only told fragments of the story, as for example the more comical messes I've got myself into. Parents and parents in law have understood whatever they have perceived, by seeing me. The same is true with others who have been close to me.

If my experiences can be useful to those of you with hypothyroidism, that would in itself be good enough reason to have written this book. Maybe it can act as a transformer between you and your surroundings? Perhaps it will be easier to inform others of your symptoms and problems when you can refer to the written word? And it would give me great pleasure if there is someone who can identify with my experiences, or someone who can find comfort and hope by reading this.

To all of you who are partners or someone close to people with hypothyroidism.
I would recommend getting as much information about the illness as possible. Knowledge is the key to understanding. The hypothyroid person isn't necessarily being unreasonable when she falls asleep on the couch during the evening, or when she wants to go to bed at eight or nine o'clock. It's possible that she needs extra rest in order to face a new day. If she's resting and feeling chilled, give her a blanket. If she's struggling to fix breakfast, ask her to make the juice while you fix the rest. When a hypothyroid is functioning poorly, it can be a problem to set the table. It is too much at one time. Ask her if she wants the radio turned off, and if it would be better to stop talking while you are working in the kitchen. When I was at my worst, it was an annoyance to have a conversation while I was trying to do something. First I had to put the plates on, then the cups, and when I was finished- then I could talk. The radio was terrible. The sounds forced themselves on me, and confused me.

If it is possible, go with her once or twice when she has a doctor's appointment. It can be beneficial for you to discuss the problems together, and it can be useful for both of you to listen to advice. I think it is also useful for you to talk to others who are in the same situation. Sharing experiences can be good for your health and can make daily life easier, as well.

To all of you who professionally encounter symptoms of hypothyroidism. I should be even more outright and say: to all of you who are primary-care doctors. Use your intellect to gather information from your patient. Analyze changes in bodily functions and behavior as well as evaluating the total picture. Use your heart and show compassion. It hurts to be turned away when one is in a helpless state. I was lucky and found a doctor who understood far more than I did. I was put on medication two days later. Unfortunately, many have been ignored or mistakenly diagnosed. Many women have suffered for years- or decades- without having been correctly diagnosed and given the necessary medication. The consequence is often lifelong disability.

To gynecologists and others who work with women during pregnancy or with those who wish to become pregnant. I would like to ask one question: "How often do you think of hypothyroidism when a woman has difficulty becoming pregnant, or when the fertile egg doesn't attach itself properly to the uterus?"

I met a wise, older endocrinologist a few months after I was given the diagnosis. He was long on experience and gave me a new understanding of the illness. At first, we had contact over the phone; later, I met him. He asked me to compare recent photos with those taken of me earlier. It was strange to realize that my appearance had changed so much. My face had become expressionless and flaccid. My cheeks and eyelids were actually droopy and my smile tight. It was strange because I knew I had been in good spirits when one picture was taken, and had been happy to be giving my little boy a bath in the tub out on the lawn. This older doctor taught me to listen to my body. He also made me understand that I had to be patient on the road to recovery.

Many specialists certainly have experience, and I wonder how this information can best be circulated. Nevertheless, it is the general practitioner who encounters most of the patients with early symptoms of hypothyroidism. Medical students must be given basic training about the illness, its symptoms and consequences. The same should apply to others in training- such as students of public health and social welfare. And, I must not forget my own profession: psychologists, and their education.

In addition, it occurs to me that here in Norway community health care providers are in a position where they come into contact with many women who are in the early stages of hypothyroidism. As far as I know, there are a number of women who fall ill with hypothyroidism during pregnancy or shortly after giving birth. A community nurse or midwife has a unique position because she can keep track of a woman and her family over a period of time.

In rural areas of Norway, there is still enough demographic stability that the same community nurse or midwife has the possibility of following up a woman through several pregnancies. Just exactly how these health care providers will be able to register women with sinking energy, I don't know. Maybe they can discuss this matter with competent doctors and our organization?

To all of you who meant well by asking
me how I was doing while I was on sick leave and while I was undergoing rehabilitation. I hope you will understand more as you read this. It hurt to be asked questions. It hurt because I wasn’t up to giving an honest answer. On the one hand I was low; I felt stupid, I was outside of the thinking world filled with words. On the other hand I was fine; I ate, I slept, I took walks and had lots of time.

Besides
it has been good for me to write down my experiences. Hypothyroidism is a wicked illness. It broke me down mentally and cognitively to the unrecognizable. When I was at my worst, I could hardly read the largest headlines in the newspaper. I wasn't capable of remembering a five-figure telephone number and I had trouble finding the right words in a conversation. My weight remained the same, but my facial expression was without mimic and my eyes vacant.

I have worked on this manuscript for seven years. I have paid a price to be able to put my experiences down on paper. I wrote, shed a tear and went on writing. I fled with my PC to secret places. It was necessary for me to be anonymous and have no obligations. At home and with the children around me, I didn't have the surplus of energy to be able to produce a thing. I feel that it is important to sum up my experiences and make them available for people in general. In spite of distressing and difficult years, I want to make use of my experiences to create something positive. I also hope that others can make use of what I write. Many people have given me support, encouragement and the necessary push along the way. Thank you one and all!

The authors preface

Overstimulation

Don't shoot
don't bombard me
with sounds and impressions

Don't ask
don't beg me to organize
here and there
and everywhere

The radio reeks of news
the words tell me
nothing
the words are sparks
boring their way
into my skull
and tormenting me

Thank you for the times
you understood
and gave me
silence

Support during the period of rehabilitation

The transition from a long period of sick leave and back to work can be difficult. At the same time as I want to emphasize the importance of a slow recovery period for those who have severe cases of hypothyroidism, I also want to stress the significance of staying in contact with ones place of work and colleagues during this time. This requires reciprocity. You must dare expose your symptoms, as wretched as they are, and those at work must be accepting. Those in charge at the work place may find this demanding, as there are of course enormous differences in how well people can tackle situations of this nature. Knowledge can be acquired. Both the management and fellow workers should have a basic understanding of the illness when an employee is seriously ill. It is possible that various health services or clinics could be a good source for this information.

Speed and degree of rehabilitation will vary depending on how incapacitated the individual is and of course, individual needs. Nevertheless, I see the importance of the work place keeping in touch throughout the period of sick leave. The person in charge of my office left my desk untouched, and to me that was a good sign that I was welcome back.

Quote from page 85

"More and more often we see people who have been struck by illness, tell their story. When this is done with as much clarity and reflection as Audhild Løhre has exhibited, it should make everyone take notice and listen. Seldom have I read such a straight forward, yet lively, intimate statement by someone with a chronic illness... It is this personal and detailed account which makes this an intense and valuable contribution to understanding the many faces of hypothyroidism."

Steinar Westin
Specialist of General Practice, Professor at the Dept. of Community Medicine and General Practice, Norwegian University of Science and Technology, Trondheim, Norway

"Hypothyroidism can be compared to a troll with many heads. A few of the common, basic symptoms form the body of the troll. The heads are the many symptoms which may vary and have different effects on each individual. This book gives an excellent insight into what it is like having hypothyroidism and also raises important questions. It has personally given me answers about reactions and behavior experienced through many years: "So that was because of hypothyroidism!" I recommend the book to everyone with interest in the illness- both for those with hypothyroidism, persons close and professionals."

Turid Haave Bentsen
Member of the Norwegian Thyroid Association

You are welcome to write in my guestbook.

Surnadal 02.08.2001
Audhild Løhre

Translated by Jean Gaffney Kvendset