Helle Sydendal, Thyroid Thrivers
50 years young
Diagnosed in 2008
How my life changed when I got sick from hypothyroidism – and how I got my life back
My name is Helle Sydendal. I am a Danish journalist and editor. I’m also a wife and mother of two amazing boys. I have always loved my work and spending time with my family. I’ve been so lucky to be able to manage both, even with having hypothyroidism, with the help and understanding from my wonderful husband.
Slowly something was changing inside of me. I didn’t feel like myself anymore. I started to feel insecure and my memory was going, which was definitely not “me”.
Adding insult to injury, I also put on weight – a lot of weight. No matter how much I dieted and exercised. I became fatigued and unfocused. I was freezing all the time, even in summertime – I slept in a ski suit!
I lived several years with symptoms of hypothyroidism and all my doctor said was to “pull myself together and eat less”. Finally in 2008, I was diagnosed with hypothyroidism and as the doctor said, “You only have to take a small pill every day then you will feel fine”.
I’m sure that that may be true for some people – but it was certainly not true for me.
My husband and my secretary were covering for me
I was given Synthroid and even though doctors tried to optimize my dose I did not experience any difference at all. I was still feeling sick – and in fact, feeling worse and worse. My weight was only going one way – up. But even worse, I was so tired – or let me say: exhausted. I would sleep all day if I had the opportunity. I forgot everything. My purse, my credit card, my keys, where I had parked my car – everything. I was confused and unfocused. I would forget if I was going to or from work. Don’t ask me how I was able to keep my job as a journalist and editor – because I don’t know. Of course, my indispensable secretary, Henriette, saved me more than once.
At home, my husband was covering for me. He was doing all the housework and meals while I was sleeping. It clearly could not go on. But when I was complaining to my doctors they would tell me, smiling, “Your blood tests are fine – they are in the normal range. You are well”.
But I was not fine! When I told them, the smile disappeared like dew before the sun and they would look at the watch and ask me to come back again in six months. When I asked for another kind of treatment, I was told that Synthroid was the only treatment available.
A couple of years went by and nothing happened. I was desperate. My normal instinct would be to fight the doctors to my last drop of blood, to defend my right to an efficient treatment. But hypothyroidism also killed my spirit and my mental capacities.
I simply could not argue anymore – instead, I would start crying, trying to discuss my ever-increasing symptoms with the doctor. (and I never cry!)
I started doing research on the internet and found out that there, in fact, was other kinds of treatments like Cytomel (T3) and Natural Desiccated Thyroid (NDT). I told my doctors this, but they refused to use them.
The turning point
One day, I was recommended to an endocrinologist at a public hospital, not far from where I live. I would do anything to get better, so I got a referral and went to see this doctor.
I will never forget that day. It changed my life. He was using a completely different approach – he actually listened to me!
Usually doctors didn’t look at me – instead, they’d always look into the paper, with my lab test results. But, not this doctor. He leaned back in the chair – put his hands behind his head – and he listened to me! Sometimes he asked questions. I couldn’t believe he took the time to hear me talk about my symptoms. Eventually, I asked him to be treated with NDT.
When I was through, he leaned forward and said, “I don’t mind giving you NDT but I would like to add Cytomel (T3) to your Synthroid (T4) first”.
With this, he said, he would be able to adjust the individual dose of T4 and T3 and if it didn’t make me feel good, I could always start on NDT.
I was thrilled. I couldn’t believe it, something was finally happening.
The first pill had an effect
At home, I took the first T3-pill and fell asleep on the heated kitchen floor, as I used to do. When I woke up, something had changed. It is difficult to explain but, I could see further than I used to. I could see the end of our living room – I could see the flowers my husband had put in the windows – Orchids. For years, I had only been able to see and focus on the things very close to me – the rest was in a fog.
Since then, thankfully, nothing has been the same.
Two years of adjusting the dose of T3 and constant improvements, have brought me back to life and back to my normal self. Back to the woman who is able to work day and night, if necessary. The woman that fights for her opinions and will engage anybody, in any discussion, on a subject that matters to her.
Back to work with hypothyroidism
So back to work again? Yes and no. As a journalist, I simply had to write a book on my experiences with the healthcare system and the doctors. It was a long process…..
Of course, writing the book was a way for me to process all of the traumas I had, after a long term of illness. But at the same time, it was so important for me also to put together all the research on hypothyroidism, which I had read through and learned about, in my effort to become healthy again.
I actually wrote the book several times. When I read through the first edition – I was almost scared, realizing how angry and bitter I sounded. But, I was angry and bitter. I felt I had lost a big chunk of my life by not getting help from the many doctors I had consulted with.
However, I decided to take a look at the manuscript as a professional editor – and I changed it. Well, when you read the book, you will see, there is still no doubt that I was angry and bitter. But I also had to be constructive. I succeeded in feeling completely healthy again – and I wanted to help others find their path, back to good health. That is why the book is much more than my story.
Through my meeting with doctors and the healthcare system, I knew that doctors often do not listen to patients. That is why it was so important for me to have the book approved by a doctor. I asked my doctor, professor Dr. Jan Kvetny, if he would read through my book as a medical consultant and he agreed. I am both honored and grateful for that.
Then my life changed again
Hypothyroidism had filled my life for so many years and it still occupies a lot of my time. I had never written a book before and I had no idea about how it would be received. It came as a huge surprise that the interest was overwhelmingly high. Now, I was on national television – several times. I was in all the ladies’ magazines, and several times my story was on the cover of national newspapers. My book was sold out in no time. So we printed more – and they were sold out – fantastic!
People started calling me. Night and day. Literately thousands of people. Even my kids received calls all the time from people suffering from hypothyroidism. They had read my book and wanted the same treatment as me. Today my kids have unlisted phone numbers – they didn’t like to receive telephone calls from crying women. 😉
And I got emails, I got handwritten letters, too. Everybody told similar stories: the received treatment with Synthroid or another T4-only medication for their hypothyroidism. Their blood tests were in the normal range and they were still feeling sick. And, their doctors wouldn’t give them any other treatment.
It was staggering. I had no idea that so many people had the same symptoms as I had had. And I had no idea that so many people in Denmark experienced the same thing with their many doctor’s visits. Their doctors weren’t helping them, either. Or, even listen to them much less their symptoms.
Even though I myself, had no symptoms anymore – hypothyroidism still filled my day – and it still does. But, now, I’m merely trying to help others. To help change the conditions for thyroid patients everywhere.
Should I forget all about hypothyroidism?
Of course, now that I was feeling healthy again, I have had the thought of putting the disease behind me and move on with my “normal” life. But my life will never be the same again. Before I got sick, I would look at overweight and tired people, with no understanding or patience, at all. I would think, like so many others do now: Pull yourself together. Or: You are what you eat – meaning, eat less! Or: Do some exercise and you will get more energy.
But now, I know that things are not always that simple. After being sick myself, I knew that it is simply not true- “everyone is the architect of their own fortune”.
If doctors are not treating your thyroid conditions properly, you can exercise and diet all you want – it will not make you feel healthy or better. Additionally, if the doctor is not treating the thyroid condition adequately. it is not your fault that you cannot cope at work. But never the less, this is what a lot of people are told and how they feel. It’s completely devastating hearing all these stories from people suffering from hypothyroidism – so similar to mine.
I can’t put this disease behind me. Something in the approach to treatment of hypothyroidism is wrong – and this has to change. I decided to do my best to try to help other patients with hypothyroidism, to work for more awareness and to work for doctors improving their knowledge. Getting a more open approach to treatment with various types of medications, is the ultimate goal.
Change is happening – slowly
Together with a crowd of other Danish patient advocates, I have founded a new nonprofit organization dedicated to patients with hypothyroidism, DDHL. And change is actually happening in Denmark where I live. Even some of the most stubborn doctors and endocrinologists are experimenting with combination treatment T4/T3 now. And last year Denmark even got official (experimental) guidelines for treatment with T3. And the Danish Health and Medicine Authority have send out a recommendation to doctors that they should treat symptoms rather than looking at blood tests.
So far so good. Another question is if all Danish doctors actually read these guidelines and recommendations. I don’t think so, because I still every day meet new Danish people – mostly women – with hypothyroidism who are not allowed to try out other kinds of medicine than T4-only.
One thing that is still really lagging behind in Denmark is the use of NDT, Natural Desiccated Thyroid. To get this kind of treatment the doctor needs to get a certain license and not many doctors are willing to do this.
So things are improving in Denmark – but we are far from there yet.
My aim is to take this struggle into an international level as I realized that patients all around the world are facing the same problems when dealing with hypothyroidism.
That is why I am thrilled that my book From Hypothyroid To Healthy, is now published in the US and I am honored to be working with ThyroidChange and all the passionate volunteers. For every book sold, a portion of the proceeds will be donated to ThyroidChange.
And thanks so much to Danna for submitting my story on Thyroid Nation and for interviewing me on Thyroid Nation Radio, May 31, 2015.
Together, we will make change. United We Heal, Thyroid Thrivers!
Helle Sydendal is a journalist and until she got sick from hypothyroidism she worked as editor of several Danish magazines and newspapers. Today she is self-employed and when not writing books and doing lectures about hypothyroidism, she is a communication consultant. Follow her personal blog Lavtstofskifte.dk and please check out her website From Hypothyroid to Healthy.
Helle’s book is a bestseller in Scandinavia – first published in Denmark, then in Sweden and now in the US. In fall 2015 the book will come out in Norway.
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