MY STORY

I want to share my disease story with you. It’s quite long. It’s a good read if you have just come from another humiliating and fruitless visit to a doctor who neither listened to you, or cared about you. The reason I am sharing it, is that I know people with thyroid disease have the same experiences all over the world. We become very sick from the maltreatment we receive in terms of no medicine, too little medicine and the wrong medicine. But we also become very sick from the cold, unfeeling, arrogant treatment doctors give us. We are often kicked when we are lying down. By the very people who were supposed to pick us up. I hope reading this will help you understand, that there is nothing wrong with you. There is something wrong with these doctors.

The last couple of years of my studies, I was starting to feel worse. I had an inkling, there was something with my thyroid. I asked to have it tested. It was all normal. Have you heard that before? He was one of those doctors who know nothing about thyroid disease. But he knew a lot about how to ridicule and humiliate his patients though. I felt worse and worse, so asked for another test. He reluctantly agreed, even though he knew there was nothing wrong with me. I had what is called slightly elevated TSH, a TSH over 2,5. But he was too incompetent to understand anything about that, he didn’t know that someone with Hashimotos can very well have a TSH within range. But that one , together with anti bodies and low free hormones. already is sick. There are incredibly many doctors who don’t know that. Even today, 20 years later.

 

 

He was getting impatient with me. I had pains in my stomach, was totally constipated. I wanted my digestion to be examined. He reluctantly sent me for an ultrasound of my gallbladder. Nothing wrong. I asked for a feces exam. Enough was enough. He couldn’t keep sending me to expensive examinations. What was I thinking? I was hysterical, that was my problem.

I gave up. I was so tired. He got me with his “hysterical”. I felt so humiliated, so small. He was a mean guy, I can still remember how it felt, sitting in his office, being sick and being told I was hysterical. I wish I was the only one having experiences like that. But we are hundreds of thousands.

It took me many years to muster up the strength to ask for a copy of my journal. I saw that only TSH had ever been taken. not even Anti-tpo. Those many years later I wrote him a letter, telling him what I thought of him and his maltreatment. Maybe you have experienced something similar. A doctor where you have not been able to hold your ground, and where the mere thought of the doctor has made you feel bad. It’s just bizarre, what is going on. I hope that you too will be able to take back your power. Tell the person what you think. It’s just another human being, albeit an incompetent one.

The Easter before I was diagnosed in May/June, I had terrible fever cramps, so bad my boyfriend at the time got scared and took me to the doctor. They could not understand, as my body temperature was so low. They didn’t realize, the low temperature was the reason.

I had by now moved from Oslo to Røyken, a small town outside Oslo. I was supposed to start working as a psychologist. But I could hardly get out of bed. I woke in the early hours, but was unable to stir until hours later. The move was what saved me. I got a new doctor, Rolf Johansen på Spikkestad. I didn’t mention hypo to him, I had given up on that. But he spotted it, and took TSH, FT4 and Anti-tpo. Thank you, Rolf.

I got Levaxin, same as Levo. Rolf followed up with frequent labs. It was difficult to find a dose, my levels fluctuated a lot. Like they often do in the beginning of a Hashimotos. I didn’t know that at the time, that the thyroid is being attacked and that can lead to fluctuating levels as hormones are being released. One also still has a lot of thyroid left, which produces a little. I was better, but I wasn’t my old self, I wasn’t symptom free. I was much more tired than I used to be. I did work, but not full time. I had my own psychologist practice, so I could run things myself. I didn’t know much about the disease. I was a member of  a patient organization. I read what they sent out, and went to some talks. That was it. There were no Facebook groups.

I have always been very grateful to Dr. Johansen for spotting my Hashimotos. Put him on a pedestal, I suppose. But I just reread my medical journals from back then. And saw, he had written after one consultation, “she was whiny today”. How can they write something like that about a patient, knowing the patient can request a copy of their journals? It’s beyond me, the arrogance of it. I would never dream of describing a patient of mine like that. It’s not decent. Shame on you doctors. Shame on you!

 

After 6 years on Levaxin, I got another myksedema. I became so sick again, I could not remember friends names! It was embarrassing and painful. I was uber tired. I haven’t worked since this time. These periods of myxedema hurt us, we are not the same when we come out on the other side. Rolf was far ahead of his time. He gave me Liohtyronin. This was in 2006 or 7. I didn’t feel so good on it. I had a lot of heart palpitations, and felt nervous. Today I know more, it could have been low iron or cortisol which caused these issues. Rolf felt a little at a loss, so he referred me to an endo clinik, the National Center . I got Ingrid Norheim, a nice, competent endo. She has been a friend to us thyroid patients in Norway for many years. She tried to optimize my levels, but I don’t think it worked so well. It was from her I heard for the first time about the importance of Anti-tpo. I had quite high levels, around 2000, don’t remember the range. She said, you also become tired from the high antibodies. 

 

ANTI-TPO

Here in Denmark, I see people with Anti-tpo of 20 000, even 30 000. They are being told by the doctors, it doesn’t matter, there is nothing one can do about that. Anti-tpo is only measured in order to diagnose. In Norway, Anti-tpo is followed throughout. There was little focus on antibodies at that time, I at least didn’t know much about it. Norheim gave me one bad advice though, one that many doctors give their Hashimotos patients. Avoid Iodine. Don’t take multivitamins with iodine. This is a misconception doctors have had ever since the Wolff and Chaikoff study of 1948. This study has a lot to answer for, as it has led to iodine fobia. It was poorly conducted, and iodine was given to mice in large doses without at the same time monitoring their selenium levels. This iodine fobia has had large consequences for our health, and even more so for us with thyroid issues. You can read more about Iodine here, link to the Iodine Protocol. I listened to her unfortunately, and kept away from iodine for years.

Then I read about something called Armour. Organic thyroid meds. I had read about it on my psychology studies, that that was what they used before synthetic T4 meds came along. The fantastic T4 medicine, ha ha. I wanted to try that. This was in 2007. And the Divine was with me, as always. The next time I had an appointment on the endo clinic, I didn’t get Norheim. I don’t think I would have gotten it from her. I got a young doctor, I think it must have been Sara Hammerstad. A young woman who since has gone on to become one of the progressive endos in Norway, as well as researcher. Anyway, I said I would like to try that Armour, as I was lactose intolerant, haha. There was a new lactose free Levaxin now, wouldn’t I rather try that? No, I wanted the Armour. All right, we can try that. Hurrah! Tralalalala! Once in a while, one is allowed to be a little lucky. I have been on NDT since then.

SIDE EFFECTS ON LEVO

Unfortunately, I made an appointment with a private, functional doctors clinic called Balder. They told me, it was much better to mix some synthetic T4 with the NDT. To keep TSH up. That gave me several more years with a lower FT3 than I should have had. And I have later realized, I cannot tolerate Levaxin. I get a reumathoid aching in my upper back and shoulders and neck. Plus tired. If you ache and feel tired, make sure it isn’t from the synthetic T4 meds. So many people don’t do well on them. I really wish someone would study that, side effects. And please report side effects if you have them. they are so under reported. I took all those food intolerance tests. I reacted to everything gluten. But spelt wasn’t tested. The doctor said, you could try and see if you tolerate that. I grabbed onto that. So ate spelt for years. I shouldn’t have. I later realized, many of my symptoms stemmed from gluten. When I read, pain between the shoulder blades could stem from gluten. I had that, always. Plus a kind of toxic tiredness that I realized was caused by gluten, once I quit eating it. No one with autoimmune thyreoditis should eat gluten. I am sure they don’t tell people with Hashimotos to eat spelt any longer, this was in 2007. Gluten is poison for us. 

 

 

I cannot say I was in good shape at this time. Not at all. I changed my diet, had no wheat, barley, rye, and no eggs or dairy. My test had shown, that I could not eat casein, and in particular, not eggs. the doctor thought, eggs were probably my primary food intolerance. And that my milk intolerance was behind all the earache I had had in childhood. He said, I had a leaky gut. So I took all the remedies one takes for that. Maybe I would have become better, had I stayed in Norway. But in 2008 I moved to Denmark. That was not a smart move for my health, at least. Norwegians complain about the treatment of thyroid disease in Norway. OMG, they should move down here. I would say, Norway is one of the better countries for us with thyroid issues. Denmark is one of the really bad.

 

 

I love Denmark, it’s a great country in so many ways. I don’ regret moving here, even though it would have been better for my health to have stayed in Norway.  There are a lot of good things with the health care system here. For one thing, one gets treated very fast. Much faster than in Norway. Except with life threatening conditions, they get treated fast in Norway as well.  But the doctors here are very incompetent and very arrogant. Not a good combination. Actually, a dangerous one. 

My first meeting with one was a shock, and set the tone for the years to come. I told my new doctor, I have quite unstable levels, so I need my labs taken every 3 months. I said, I am always low on zink, and can’t seem to increase it. So I needed that taken as well from time to time. No, they didn’t test zink. Danish health services didn’t waste money on such things. And they only measured the TSH. That was all that was needed. I was dumbfounded. I came from a doctor who insisted, I had labs every 3 months. Who always took TSH, Ft4,  and often Anti-Tpo. There was no chance of being prescribed NDT in Denmark. There was only Eltroxin, same as Levo. The Danish doctors hadn’t even heard of it. Thank God, Rolf, my Norwegian doctor continued prescribing NDT for me. I was first on Armour, later Erfa. In combination with Eltroxin, I am sorry to say. I didn’t get my labs taken, so I became too low. I got what I call, my half myxedema.

MYXEDEMA

I believe I have had 2 1/2 myxedemas. The first one, those 2 years before I was diagnosed, the second where I no longer converted Ft4 to Ft3, and this latest, when I moved to Denmark . I felt really, really bad. And there was so much trouble with my teeth, 10 monhts of undescribable pain. Here too, I was mistreated . I got 2 root canals I shouldn’t have had. I said, the whole time, it’s this tooth. It needs to come out. No, it couldn’t be that one. They did a root canal first one the tooth to one side of it, then on the one on the other side. It didn’t do any good. Finally they extracted the one I knew was the culprit, and the nightmare was finally over. It is unbelievable, how one isn’t heard when it is one’s own body. We are treated as idiots, like we are unable to read signals from our own bodies. Why is it, these doctors and dentists believe they are so much wiser than anybody else? I have 6 years of university studies myself. Should that make me better than others? It must be that they have long educations that gives them this idea of superiority. Or? It is a mystery to me. And when it comes to the Danish physicians, I don’t understand what they learn. As they know nothing. They don’t treat at all, just referring to specialists for the smallest ailment.

And neither the GP’s nor the endocrinologists know anything about thyroid disease here in Denmark. It’s bizarre. They don’t read the studies done internationally, don’t listen to the patients who do, actually, they seem to hate patients who has knowledge of their disease. I don’t know, maybe deep down they know they are inadequate. But being too scared to stand on their own, they just submit to the current Danish paradigm. They even have a Facebook group, where they make fun of their patients. 11 000 doctors are in it. A little has leaked out. One story is, a doctor describing an overweight woman sitting in his office, saying, “I hardly eat anything”. They apparently had a good laugh about that. I bet you, that woman had a thyroid issue that the doctor was too incompetent to diagnose. Yes, I despise these doctors. I really do.

I complained to my lovely Norwegian dentist. He knew a doctor, 30 min from where I live. I started up there, at Laegerne på Langesvej, hos Ben Geissler. He was like the rest of them, unfortunately. At first, I got my labs taken every 3 months. Then the senior physician said, you cannot take all those tests. Because the level of thyroid hormones in our blood is of no importance. That must be the rationale with these doctors. They don’t even understand, that many, many with Hashimotoes have very fluctuating levels. The thyroid can function a little and produce to varying extent. The thyroid is being attacked, and release hormones as it is being destroyed. So frequent testing is necessary and important. I was going to be allowed labs every 6 months. This was a big service he was doing me. As it wasn’t really necessary to test more than once a year. He expected gratitude. I asked for the Anti-Tpo test. He called the endo department at Hilleroed hospital. The endo there informed him, Anti-Tpo had no significance other as a diagnostic tool.

 

DANISH ENDOES THINK, ANTI-TPO DOES NOT MATTER!

The Danish endoes have this attitude even today, in 2020. People here have sky high Anti-Tpo, Shocking numbers. And the patients don’t know how detrimental this is  . They eat gluten and tell each other, one cannot do anything about Anti-Tpo. Their thyroids must be eaten up in no time, not to mention how tired one becomes from such high inflammation. There is little knowledge both between doctors and patients here in Denmark.

I stayed with that doctor for years. I reckoned, I won’t find anyone better. And I haven’t either, after changing twice since.

 

DANISH DOCTORS REFUSE TO TEST PEOPLE ON NDT!

I had to change. They stopped doing my labs. They didn’t want to test a person who was on NDT! I feel sick writing this. Someone who has had Hashimotos for years, someone who does not do well on synthetic meds. This is a common situation in Denmark. People on NDT can’t get labs taken. We are also denied appointments on the Endocrinologists departments. I was denied on this Hilleroed Hospital. These doctors do not take their Hippocratisk pledge seriously. Their motivation is not helping. They are caught in their egoes. This doctor didn’t even know, NDT was the treatment for thyroiddisease before the 1970 ies. We pchycologists are thaught this in Norway. I find it bizar, that a medical doctor doesn’t know this. They can’t have medical history on their curriculum here in Denmark, or he was truant. He didn’t know there was something called Liothyronin either, that one could treat with T3. This was less than 10 years ago. He probably didn’t know there IS a hormone called T3. OMG!

I saw a Danish endo privately as well during those years. Once. Jens Faber in Frederiksberg.  He has a private clinic together with another doctor, Dr. Kølendorf. There are many horror stories about those two among us patients. I didn’t know that at the time. Jens Faber was awful. He got so mad when I mentioned NDT, he hated that stuff. He has got big anger issues. And he hasn’t got the self control or professionalism to hide it from his patients. Imagne, he didn’t even know they make a compounded NDT at Glostup here in Denmark! It’s unbelievable. I had to sit in the car and rest for one hour before driving home after the appointment, I was that exhausted.   

 

SCARED OF DOCTORS

One is apprehensive when seeing a new doctor in Denmark, that is a GP or endo. The others are ok. But seeing a GP or endo, one expects to be rejected. This is not only me, I hear this from so many. One expects to not have the necessary blood work taken, to not get the thyroid hormones on needs, not to be allowed to take the dose one needs. Shoulders are high as one enters the room. I don’t think there are many other patient groups that are as grateful for a decent physician than us thyroid patients. When someone in our Fb groups mentions a doc like that, people want the name in pm. One becomes envious. It is quite bizzare.

So I started with Eske Poulsen with the Strandvejslægerne in Frederiksværk. It started out ok.He understood that I needed bloodwork every 3 to 4 months, he knew about the importance of Ft3 and he was not negative to NDT. I thought I had finally found a doctor I could talk.. It soon changed, unfortunately. There came a directive from the endos, that now Ft3 should no longer be taken. There were ways for a GP to circumvent that, and some did. But he wasn’t having it. He had to lean on the endos. What about being a doctor, knowing something about this very pervasive disease yourself? What about caring the most about how your patients are doing? Let that be the main focus? Read up a little oneself maybe? The Danish GPs don’t do that. I don’t think they read anything but what their union or the health authorities send out. I am sure they are busy. But one just have to keep up in the medical field. Eske told me, he had no need of keeping up. But WE need you to keep up, Eske! He said, I was welcome to go privately. I did. Then he told me, as you have gone private, I won’t take any labs on you. Not even iron labs. He also informed me, there is no need for supplements if one eats a normal, Danish diet. OMG, what an idiot. One cannot get labs for mineral and vitamins here, they believe it is of no importance. In Norway, everyone over 40 are encouraged to have a full check up once a year, including vitamins and minerals. Maybe one of the reasons Norwegians live much longer than the Danes. My private doc was in Norway, but that wasn’t his problem. It is hard sitting across from a doctor who is indifferent to you. It does something to us. Though I have gotten much tougher. He was manipulative. He had written in my journal, I refused their treatment. I had not been offered any treatment. On the contrary, when I asked for some T4 med to add to my NDT, as I was a bit low on my FT4, I was refused.

He would not prescribe LDN either. Even when I told him, I had used it for 5 years already, and that it practically had saved my life. In Norway now, LDN has become pretty mainstream. Not so in Denmark. I think he was the worst of all the doctors I have met, at least top two. There was a sour, negative energy around him.

Thankfully, by now I had the strength to tell him what I thought of his doctoring. Strandvejslægerne have almost only negative reviews on Google.  Why do these bad doctors become physcians? They have no real interest in medicine, no wish to learn. They haven’t any interest in people either, no wish to heal, to help. What drives them? I have come to the conclusion, it must be only the money and the status.

I had no idea there were so many bad doctors until I got Hashimotos. I am saying this based on hundreds of stories i have heard and read from other thyroid patients. The doctors say the most incredible things to their patients, there is such a lack of respect, not to mention empathy.

Here in Denmark they have even made up their very own diagnoses, functional disease. It’s not in any diagnostic manual, WHO won’t recognize it. The Danish politicians have demanded, this fictional diagnosis be abandoned.The doctors rebel against this, they will not take directions from any politicians or the minister of health. This diagnosis is the ultimate cop out. Everything they don’t understand or know how to treat, goes into this non-diagnoses. And funnily enough, it’s mostly conditions women suffer from that end up here. Surprise! They talk about “life aches”. I believe they mean being depressed, tired, overweight, in or past menopause. It has nothing to do with FT3 being just within or even under, reference. Couldn’t be that, as FT3 is of no importance. OMG! TSH is within range. Is it 2, 3 or even 4? That is ok, no problem. As long as it is within range, everything is fine. Are you ice cold, exhausted, constipated? That must be a functional disease. You have to learn to live with that, that’s life.

No, life is not like that. YOUR life is not like that. And if it was, you would move heaven and earth to change it!

There ARE doctors who are both humane and competent. I have found a doctor like that in Aisha Aibo in Oslo. It’s strange to meet a doctor like that. One talks like two grown ups, she listens, takes everything one says seriously. Knows things, understand thyroid issues. Doesn’t think she has all the answers. If I still lived in Norway, I would use her as my GP. Even if it costs. It would be worth it. I am starting with a new doctor here in Denmark.

 

I pay for everything here. I get no treatment for my two chronic diseases in Denmark. Even thyroid labs I have to have taken privately. Like so many here. Denmark claim, health services are free. NO, they are not.

I think many can relate to this. Thyroid patients all over the world have similar experiences. Though there are big differences between countries. It’s not us. All we want, is the energy our cells need to live. That’s all. And it can be done. We have the meds. they are not even very expencive. These doctors don’t think we should have energy. I don’t know why, it’s impossible for a normally intelligent person to grasp.