The Thyroid and The Entirety

Introduction

My interest in thyroid diseases and other endocrine organs began early as several of my patients and close relatives were not feeling well despite the recommended standard treatment. It wasn't long before I became very ill with Hashimoto's thyroiditis, an inflammatory thyroid disease, with an impact on multiple organs. I believe that my path to healing, as well as both being a doctor and a patient in our healthcare system, has given me a great understanding and experience which has enabled me to help others in a similar situation.

This book was mainly written in 2015 but has been updated with new texts and information during 2019-2020. Published in Swedish 2021, translated and updated in English 2022.

This book is the result of years of experience and hard work. It is written for both patients and treating physicians. It's a book I wished I had in my hand when I was sick myself.

The book is not only about the thyroid gland and how our trillions of cells depend on thyroid hormones, instead it takes us on a journey through the body and explains how the thyroid interacts with different organs.

The Purpose of the Book

Raise the issue and spread knowledge about the thyroid problem and its root causes.

Thyroid dysfunction is not a single disease, and monotherapy rarely provides sufficient effects.

Increase knowledge about nutrition, minerals, vitamins, and their connection with the thyroid gland.

Information about new methods of treatment when the standard treatment does not work.

Preface

My purpose of this book is to raise the issue of the thyroid problem and to suggest alternative treatments as I have come across many who are suffering in vain. This is a result of insufficient knowledge about the connection between thyroid and many inflammatory diseases.

A large number of patients have symptoms and disease profiles which may have a similar root cause. Many of these patients haven’t received the proper treatment which is why this problem must be raised.

Almost half a million people are living with a thyroid diagnosis in Sweden today. The unrecorded numbers are most likely much larger, as many suffer from these diseases without having a correct diagnosis. According to the Swedish Thyroid Association "Sköldkörtelförbundet", 475 000 people were medicated for thyroid diseases during 2018.

I would like to contribute with the knowledge and experience that I have acquired as both patient and doctor to further enhance the understanding of the thyroid problems.

I wonder if the healthcare system and the healthcare professionals have made it too easy on themselves. Doctors mostly rely on the test results and don’t always act according to the given symptoms. The healthcare system interprets it as if the patient doesn’t have any thyroid problems if the blood results are within the normal reference range, even though the patient suffers from related symptoms. In other words, if the blood work looks fine then the patient should be feeling fine as well.

Sadly, there isn’t enough research on thyroid diseases. Neither is there sufficient research on complementary or alternative treatments for patients who do not respond to standard treatments such as Levothyroxine*. Instead, diabetes has been in focus when it comes to diseases of the endocrine system.

I’m writing this in the hope of raising the issue of incognizance concerning thyroid diseases and the multimorbid patient. These patients are often bandied between different healthcare units. I’m asking all my colleagues, in particular our dear general practitioners and family physicians and also endocrinologists to have a broader perspective and to be more percipient when it comes to matters concerning the thyroid.

It’s important for me to write this book as I meet patients with thyroid problems almost daily, especially patients with Hashimoto’s disease. Patients who are desperate and confused. They feel bad when they can’t motivate how their underlying problem is the thyroid problem and that depression or other derived diagnoses are not the cause of their problems.

A patient who only has a high value of TPO antibodies, thyroid peroxidase antibodies, but normal values for other thyroid variables will have a hard time receiving a treatment, even though they have several related symptoms.

What’s interesting to me is that almost all patients that have been seeing another doctor before me, had undergone blood tests for the thyroid. When I ask them why their doctor had chosen to do these tests, they answer when I told my doctor about my symptoms, the doctor said that we needed to do tests for my thyroid and then schedule a revisit.

At the revisit with the doctor, if the tests results had been within the normal range, the patients will have almost no chance to explain that it is their hormonal system or their thyroid system that isn’t working as it should. The patients are told you don’t have a thyroid problem but rather a psychological one, anxiety, depression or that you’re stressed out, that you have stress induced myalgia, gastritis and so on.

The patient will then get the suggestion and recommendations to try antidepressants, pain relief with Paracetamol, morphine or morphine derivatives such as Citodon, Tramadole, tranquillisers against neuropathic pain such as Gabapentin and Pregabalin (Lyrica), anti-inflammatory substances such as Diclofenac (Voltaren), Ibuprofen, sedatives such as Atarax, Beta blocker (Inderal) or soporifics such as Zopiclone, Propiomazin (Propavan), Zolpidem and more.

If the patient isn’t satisfied with the symptom suppressing treatments above, they will be remitted to counselling with either a counsellor or a psychologist, a referral to a psychiatrist for possible prescription of other sedatives or alternatively SSRIs antidepressants (Selective Serotonin Reuptake Inhibitors) or remitted to pain, rehab, and fibromyalgia clinics. Sometimes they will also receive information about physiotherapy, aqua aerobics, and massage or possibly a referral to migraine and headache managements.

As time passes the patient who has not received a correct diagnosis or an effective treatment is instead being medicated to supress their symptoms. Often with difficult side effects as a result which according to my experience is because patients with thyroid problems are often very sensitive to several drugs. There is a major risk that this individual will feel worse both physically and mentally than she/he did before treatment began. During this phase, The patient may receive a new diagnosis, burnout syndrome and will require sick leave.

Syndrome means a combination of several symptoms and diseases which are not precisely related to a specific underlying reason. The patient will get desperate and start to seek help from other doctors and other clinics. The frustration of not being believed and the fight to prove your point and disprove your health care provider about how there is something else that’s wrong within body. That the cause of your symptoms is not in your mind or caused by stress which drains you of energy. The patient starts to collect information online and contacts others who have similar experiences. They often start to treat themselves with alternative drugs and supplements without having any prior knowledge about these products. They do desperate things in order to feel better.

It really hurts me as I’m writing this. A great many patients have told me that they have not been able to be honest with their doctors, but have had to lie about their prescribed medicine, such as Levothyroxine. All the while they are treating themselves. When I ask them as to why they’ve chosen to lie, the answer is that they don’t want to end up in a conflict with their doctor, that they don’t have the power to do so, and that the doctor doesn’t have an understanding for this or that they are dependent on the system and the doctor to be able to perform blood tests. Another important thing that I’d like to bring up is that most patients with thyroid problems are women. They’re often active and ambitious women who have been very successful in society; teachers, principals, journalists, entrepreneurs, politicians. Their condition has brought them to their knees. They have lost their jobs, lost benefits and have been denied insurance because of their disease. Some have had to separate from their partners and thus many have become single mothers, mothers without insurance and with limited financial resources. This makes everything even harder for them when they want to get help and the treatment from a private clinic. The disease doesn’t only affect one person, but rather it affects the entire family and the community. In this way society as a whole is affected by the major psychological and economic consequences.

If we really want to save money, and if we really care about the economy of the counties, I propose that the experts will raise this issue. I propose that they would include the cost of all the doctor’s visits that thyroid patients have around different clinics. That they include the cost of prescribed drugs, sick leave, mental illness, and the unemployment which goes together with this disease. The cost of legal matters and family disputes together with mental illness in children with a parent or parents with thyroid problems. It must be unremunerative to continue like this without treating the cause of this illness!

It would be desirable to conduct a study to research the correlation between the diagnoses burnout and hypothyroidism. This can be done by using the diagnosis code for burnout from the system with the help of a search engine, and then see if the patient is at the same time being treated with Levothyroxine.

I have no data other than my 23 years of experience as a medical practitioner and my own disease progression to support this statement, but I believe that a big number of the individuals who are on sick leave due to burnout today, have a hormonal problem as the real cause of their disease profile. To think of the number of individuals that we would have saved from suffering and how much our society would gain by treating these patients for the root causes of these problems and to not only alleviate their symptoms.

A Sifo survey conducted on behalf of Sköldkörtelförbundet in 2018 shows however that every fourth patient (25 percent) receives no or very little symptom relief despite treatment. 60 percent, corresponding to more than a quarter of a million people, have remaining symptoms despite treatment. Only every third patient, 33 percent, gets rid of their symptoms either partly or completely. At the same time, statistics from the National Board of Health and Welfare show that only two percent of patients were allowed to try other alternatives when the standard treatment did not help.

I understand that the medical community believes that more research needs to be done on the diagnostics and treatments before one dares to change the current standard treatment. But to be able to conduct evidence-based studies, an enormous number of resources are needed as everything involving diets and lifestyles requires long research periods and large test groups. There is a lack of companies that are willing to invest in in these studies, and as our public institutions have a hard time investing in big studies, I call for our doctors to be a braver and percipient. They need the opportunity to undergo continuous training and to be able to update their knowledge, especially within biochemistry and nutrition. Doctor’s also need the approval of their employers to be able to see the patient holistically instead of strictly following the guidelines. How dangerous can it really be, for example, to exclude certain foods from a patient’s diet?

One of my previous supervisors regarded the exclusion of foods containing gluten and dairy from the diet of a patient, with the intention of reducing inflammation, on par with quackery. I don’t agree…

That it so far has taken all this time to find the perfect cure or to find a treatment for hypothyroidism might partly be due to the lack of knowledge with practitioners and the public. Furthermore, it’s not possible to patent things related to diets and lifestyles which is why it’s not profitable to finance research within this field. Another reason that many of us have probably heard about is that hypothyroidism has been a female-dominated disease and the saying the society invests less in women. The first part however might not be 100% true as the case might be that symptoms men get have yet to be connected to this widespread disease. But it would be prudent to consider the possibility that type II diabetes can be the other side of the hypothyroidism, or that these two go hand in hand.

Type II diabetes is more common in men. This subject has been very interesting for the research and Big pharma during the last years.

If we have alternative medication for other diseases such as diabetes and hypertension, it should go without saying that other functioning drugs and treatments should be available for patients with thyroid diseases and hypothyroidism. The patient should have the right to choose their medical treatment other than being treated with Levothyroxine.

All the best,

Azin

* Some of the common brand names of Levothyroxine are Levaxin, Eltroxin, Euthyrox, Letrox, L-thyroxine, Thyrox and Synthroid.

Chapter

1

My Story

Chapter 1

My Journey to Become a Better Treating

Physician

This is a part of my own story, and I’ve written this book based on my role both as a doctor and a patient.

A Beach in a Warm Country

It was a warm and sunny day in Spring. I was standing in the shade, deep in my own thoughts, watching my husband play Boules. I was also playing earlier in the afternoon, but the pain in my arm and shoulder meant that I could no longer play.

I was hiding in the shades because I couldn't stand being in the sun. Don’t get me wrong, in previous years I used to love being in the sunshine but now I was warm, boiling inside, and had a lot of pain in my entire body.

Yes, I was boiling like a volcano. I had gained about 8 kg in weight in the recent months. It was mostly water; I was sure of that, and none of the tests that I had taken was showing any kind of anomaly.

My health had deteriorated after the latest miscarriage a few months earlier. The symptoms had gradually been creeping in and became more and more intense.

After the first miscarriage a year ago, I had asked my gynecologist to take thyroid samples including TPO antibodies, as a few years earlier I had slightly elevated TPO antibodies.

It turned out that my antibody level had risen significantly, but according to the gynecologist, this was not a problem as I had very good results on the other thyroid samples. The miscarriage was blamed on the quality of the egg and chromosome failure during the first trimester. Okay, sure!

You can try to get pregnant right after your first period, was the message from both my regular gynecologist as well as the other gynecologist we’d contacted to get a second opinion from. This surprised me, and my gut feeling told me to wait a couple of months before trying again. Another attempt was made that also ended up in a miscarriage.

What was the problem that caused these miscarriages? It was easy for me to get pregnant, but obviously something happened around week 7-8 during the development of the fetus. To blame it on the quality of the egg and our age which we were told time and time again was not enough for me.

By this time, I had started to feel very tired and had difficulties getting up in the morning. I became easily stressed and had anxiety attacks, off and on, that could get quite intense.

My work as a district family physician was stressful, especially working in a place with unreasonable expectations placed on me when I simply wanted to benefit my patients.

Several of my colleagues were feeling unwell. We probably switched workplace for a long-term functioning one had it not been for our good team cohesion. We were completely worn down by the workload, the errors in the system and the unreasonable expectations for ambulatory care.

When the second miscarriage happened, it was blamed on me being stressed and exhausted. I sought help from a colleague to be referred to a pain clinic. Pain all over my body and extreme fatigue in the mornings was something that I’d had for a few years, but it had never been as intense as now. My deep sleep often came early in the morning, and it was crucial for my energy later in the day. I had trouble sleeping at night and slept superficially if I even managed to fall asleep at all.

Previously I did not believe that seeking help from a pain clinic would be of much use to me, as I had followed my patients with chronic and generalized pain for several years. But now, I wanted to give it a try in hopes that new knowledge and strategies had been implemented into the system.

I was now referred to the pain clinic and was waiting for a call from the hospital. This itself took a couple of months because the referral was sent late from my colleague's clinic. Later, the hospital's pain clinic responded that since the pain medicine specialist also has a small clinic in Stockholm, the hospital wanted the referral to be rewritten and sent to this private clinic instead. Here I must ask, why couldn’t the hospital itself pass the referral on to the pain medicine specialist’s own clinic when the doctor in question was also employed at the hospital? This bureaucracy means that the patient must completely unnecessarily wait for weeks and months. I believe that this is where many patients and colleagues recognize themselves and understand what I mean.

It took a few more weeks for the new referral to reach the right recipient. In the meantime, the colleague I had sought help from suggested that I take part in a Mindfulness course and be part of a study for healthcare professionals. I accepted this with pleasure and great anticipation. The first time, we sat and listened to instructions and received information, following this, it was time for exercises. I sat with difficulty on the floor, had a mattress and a pillow under me but still, I couldn't sit still. My body went numb, and it hurt. I couldn't sit in the same position for more than a few minutes. The second time, we started with the exercises and, if I remember correctly, we began by focusing and concentrating on our big toes. That's when I started reacting. My body was pounding and pulsing, I had a fever. All the body parts that were in contact with the blanket or the floor went numb. The entire thing turned into pure torture. After an hour and a half, the exercise was finally over. I don't remember what the course leader said. What I remember is that I went to him after the exercises were over and said: This course and study may be very good but it's not for me, at least not now. I think I have a serious illness that I have to deal with.

To be able to find the cause of my illness, I asked my doctor to do some tests that also included inflammatory markers. The values were all normal. I also took allergy tests for foods including samples for gluten and milk protein. Everything showed a negative result, no allergy.

But my TPO antibodies turned out to have risen even more since the gynecologist's last tests. Now they were above 900 (REF range < 35 IU/mL) with perfectly normal values for the other thyroid hormones. My doctor was perplexed and