I was going to call this post “A diagnosis from Hell” because on the 23 December at 11:25 I finally realized how serious my diagnosis really is, and that of maybe half of Sweden’s population! Or should I say that I haven’t got a clue how many walk around with this diagnosis, but there are LOTS of us, and is it not a disgrace then, that doctors in Sweden are entirely clueless as to what they are dealing with?
But I am going to back up somewhat, and give you a little resumé, in case this is your first time on my blog. As long as I can remember, I have been terribly tired. When I brought it to a doctor’s attention in 1999, the doctor snidely told me: “Well, what do you expect when you put three children to this Earth? You’ve dug your own grave!”. In other words, shut up, this is your own fault and don’t bother me with it. So I never ever mentioned it again. Not until in 2012, 25 July, when I had had a gallstone attack during an entire night, and worried walked in to our local clinic and asked if I should be concerned, since I do not have a gallbladder anymore. For some reason, I brought up the fact that I am always exhausted and when the doctor ordered a blood test to see if I had a stone stuck somewhere, she also had a thyroid test done, unbeknownst to me.
I had a phone call later on that week where she told me that yes, I had had a gallstone attack even without a gallbladder and I also have something wrong with my metabolism. “But that can be fixed!”. Which is the stupid attitude of all GPs in this country! It can easily be fixed! So why is it not fixed then? I have had the diagnosis for two and a half years now, and I am not getting better but worse!
In my case, it all started out with bureaucracy. Many years ago, Sweden had this idea that we all should register at the local clinics and sign ourselves up with a “house doctor”. The idea was that you would have your “own” doctor who would know YOUR medical history and there would be more continuity, safety, security, you name it. Only some doctors were in high demand, while some were not as popular. That was one problem with this idea. The second problem was doctors coming and going, trying to get better jobs and better pay. But the third problem, has always been the major problem in this country. You have more sick people than doctors at hand. So, when you call the clinic and say you are ill, the first thing they tell you is: “Take a paracetamol and wait it out!”. If you then call back and tell them that you are at death’s door and that paracetamol is not doing anything for you, then you will be offered one of three options. 1. You can get a telephone appointment. The doctor will phone you, ask what is wrong with you and tell you what to do. Yes, you might as well have been content with paracetamol. 2. They tell you to wait till 17:00 and phone the after hours clinic instead, in town, and see if they can see you in the evening some time. Imagine all ill people starting to dial that place at 17:00 and you figure out what your chances are to an appointment at that place in town. 3. You get an appointment in a couple of days time, or if you are very, very lucky, you receive one the same day but of course with the first doctor at hand. I never, ever got to go to my chosen “house doctor”!
But I was written up as HER patient, so when I got my diagnosis, she was the one who should handle my case and the doctor who diagnosed me could not touch me! So, I knew there was something wrong with my thyroid for two months, before I could get in with MY doctor. She had no knowledge of hypothyroidism and was scared to prescribe the medicine for it, Levaxin. She put me on 50 micrograms Levaxin, 1 pill a week. She thought I would have a heart attack if she had me take one pill a day, from the start. 6 weeks passed and then she upped it to 2 pills a week. 6 weeks went by and then 3 pills. You get the picture. The goal was one pill per day of course. Meanwhile, I continued having all the symptoms of course. My first appointment with her was in September 2012. After that I never saw her. Everything was conducted over the phone. Then in February, she had retired and noone knew who I had been passed on to. Here’s a clue: I was passed on to the doctor who diagnosed me. And she decided that the other doctor had been too cautious and put me on full dose 50 micrograms all week.
Last Christmas I noticed that I was extremely cold, I had no memory, loosing words, but worse of all, I was fat. No, noone else agreed on this view, but I had not been able to wear my engagement nor my wedding ring, since the summer. And when I tried to pull up the zipper on my winter boots, to keep my poor cold feet warm, it was horribly tight. I had also had to go up one trouser size. In January 2014, it was time for my blood tests and the “new” doctor, who only communicate via letter, phoned me and asked me if I was not taking my medication. I told her that of course I take it! She asked me how I was feeling, and I told her that I felt pits. Brain fog, incredible fatigue, weight gain, and she told me that no wonder, my readings were very bad again. So the dosage went up to 75 micrograms/day. “Just be patient, you will loose the weight as soon as you are on the right dosage again”.
Well, that has not happened! And it will never happen if I don’t get the right treatment. And I doubt I will find a single doctor in this region, who know enough to give me that. I feel resentful and angry. Life should not have to be like this! First of all, during this year, I have been listening and reading a lot from the underground wellness site, which has had a lot of experts on Hashimoto’s and Hypothyroidism as guests. They all blame gluten for the problems that so many of us are having. But I don’t know? If one should stay away from everything they say, one only gets to live half a life. And for me, well I might as well go to Switzerland and swallow a mug of poison, because without my gallbladder, I can not eat the things they tell me to eat. Nor are all the supplements and medicines available on this side of the Atlantic! Our lifestyle and food culture is also very different from what the American audience stuff in to their mouths, so to blame our problems on foods and ingredients which we never even consummate here, is totally off the wall.
Something has gone wrong in the computer system at the local clinic. In September I was sent a paper saying that I had a doctor’s appointment on the 23rd November. I had to phone them and ask them who I was seeing and for what disease. They told me that I had been queueing for a long time to see a doctor and now it was my turn. They had hired in extra doctors to deal with the queue. I said, great, I would love to see a doctor face to face. So I did not inform them that I had never been put in a queue as far as I know! Unfortunately, the doctor got sick on the day so my appointment was moved to the 23rd December. Day before Christmas. In one way, I wish I had not gone, since I have been crying since. At the same time, I guess it is better to know the truth than not. But the hopelessness of it all feels too overwhelming. It does not feel right, that only a few people in this world are lucky enough to stumble on to doctors, who actually know what they are doing. The rest of us have to be content with nincompoops, who will not do anything for our wellbeing and then I am not talking about physical wellbeing but also our mental state.
When I finally got in to the doctor, Tuesday, it was 25 minutes late. And the doctor did not really improve in my estimation. T. who had run an errand, thinking that I was done by then, walked in with me, so he knows exactly how little helpful this woman was. Oh this was a smart one alright, and she knew it. She informed me that the clinic was paying her mega bucks to get rid of the long queue they had let amount over the years. She informed us that she is a top-notch doctor, who teaches the medical students in Lund, our University town nearby. Pity she knows so little about how to treat Hypothyroidism/Hashimoto’s. When I came out, I realized that I had spent 40 minutes with her and most of the conversation had circled around her! She told me about my future. I will get a neck like a bull, because my thyroid will struggle so hard to cope. She pointed at herself and let’s say it was not uplifting one bit. She looked like half man, half woman and acted more male than female. What would classify as a Tomboy. T. thinks that she might only have been in her 40s but she looked, according to him, 15 years older than me.
She would not listen to my long list of complaints that I had composed beforehand. I had written up that I am horribly tired, I am disgusted by my weight problems, … I’ll return to the list later on I think. Because as soon as I got in to her it felt like she wanted me out of there. T. asked if he could come in and she said, yes by all means. “I have worked in Afghanistan and there 20 people come in with the woman and I always had to ask who was the patient”. When I sat down she said that my blood work looked fine and I demanded to find out exactly what she meant with fine. I told her how the figures she quoted are not fine according to American experts on the subject and she admitted that not all feel fine, at my levels, which are at the bottom range. So perhaps she would up my dosage after all, so I will get a chance at feeling better. She started throwing out medical terms and I just made myself looking like a question mark, so she drew a picture she draws for her students. Then she wrote down a man’s name who I am supposed to check out on the internet, because I need to get 7 hours of sleep each night and he is an expert on sleep.
I told her that I sleep 7 hours alright but as soon as I have dropped off “Gubby” at pre-school, I have to go home and sleep some more. She started to say that we all think that tigers and lions are going to attack us, that it is the primeval part of us, and that T. has to sit at the door guarding so I know that I can sleep safely. Hm! Does her new boyfriend sit by her door? Because my husband can’t even sit in church and stay awake. He goes to bed around 20:00 to be able to get up at 05:30 and he is part of the reason why I might not get the 4 hours of deep sleep she told me that I must get. He snores half the night and I can’t sleep when someone is snoring! Let alone when “Gubby” puts his legs over my body and his arms in my face or on my body as well. No, I doubt very much that I get 4 hours of deep sleep ever. Beside I worry myself sick over my three boys, my mean teenage daughter, my weight, my ugliness, my son being unemployed…
The next thing she said was that I must cut out all stress and upsets out of my life. And she started a long tirade over how angry we all get over the Roma all over. The pile of lard sitting outside our supermarket rattling her coffee mug. I can’t stand them no. I get as angry as she does, yes. She told me that she wants to kick them all now when she walks by them and I can admit that I have got to that point as well. I guess she has been fighting with them because that is the sort of woman that she is. She had finally got sick and tired of seeing the person and had gone in to the supermarket and bought a whole bag of groceries and then handed it to the person sitting there that day. The Roma threw the bag straight in her face and a fight ensued. So the Roma group changed person sitting there for a couple of days. A man had taken the woman’s place, sitting there on his mobile phone smoking and when people gave him coins, he became abusive and demanded bills instead. I get so disgusted when I hear it, but was this what my appointment was about? She told me that she now walks with her back against them and I should do the same. Excuse me but I never look at them anyway because I find what they are doing, disgusting. I want them out of Sweden and find it a disgrace that the police do not enforce the law! But I doubt very much that they are the cause of all my thyroid related problems!
I told her that there is no way for me to get a stress free existence because I have an 11-year-old with ADHD, an 8-year-old with Autism and a 6-year-old with the same diagnosis. If I expected sympathy from this woman, I was wrong. Instead she ordered me to contact the council and get them to take the boys off my hands because I need to look after myself and not them. That is when I started crying. And she tells me that life is not fair. That her new boyfriend’s son has ADHD and Autism and that she has demanded that the council takes the boy for 14 days a month. She is only willing to have him home for 14 days. She threw out the computer and TV so he could not sit on that, whereupon the boy and she got in to a physical fight. Now he gets to help her dig and do farm chores because she has just bought a new tractor and digging machine. She told me that she probably has ADHD herself and has trained as a carpenter, mason… I lost track of everything she is capable of doing. Good for her. But it does not help me.
I tried to tell her, how I need help with my weight gain. That I was supposed to have been sent to a dietician two and a half years ago. She could find no sign of a referral. She looked at me when I said that I can’t stand to be this fat and looked like a question mark. No, perhaps compared to her, I am not looking fat but I did not get to explain myself. She had no time for me only for herself and her thoughts. In her mind, one can not get a gallstone attack without a gallbladder but I tell you, YOU CAN! I have had it, the doctor I went to in July 2012 could see it on the tests she ran! It is not imagination. So an argument ensued. She told me, alright I can get gravel and it can plug up entrances to things, but it is only to go in and remove it. Right! Only go in and remove it!!!! She thought I should experiment with food and I said that I do not dare to since the pain is so excruciating when you get the cramps in the gall canals. The morphine that the first doctor prescribed, in case I would get an attack again as bad as the one on the 25 July 2012, is probably expired. It’s been sitting in the fridge since July 2012 and I have never touched it. Me and morphine doesn’t go together. And I have tried to stay away from everything that might cause another attack. It is not a pain you want to put yourself through, nor cause on your own. SO forget trying to eat an egg yolk or some egg white. I will not! No matter what this doctor said.
I will be sent to a dietician though. Because I need to be able to eat something, anything. The experts on Hypothyroid in the US said that I must eat onions, egg and red meat. Those three things are out of the question when you have no gallbladder. I am forced to stay away from most food thanks to the gallbladder issue. Life without a gallbladder has for me meant: No meat or hours of indigestion after eating a little bit of it, no fried food or indigestion all night, no grease or fat, no eggs, no onions, no garlic, no sugar, no apples, no pears. I can’t eat bread, because it makes me bloated. All the foods above give me cramps, indigestion, flatulence and finally diarrhoea. At worse an attack of either stones, gravel or cramps in the gall canals. You tell me what I should eat!? Then I have not mentioned how I get indigestion from salmon as well since it has high fat content, how I get flatulence from things like cauliflower and such vegetables, how I am oversensitive to all acid foods and drinks, like tomatoes etc. Nuts give me diarrhoea, oranges and citrus fruits give me migraine… Is it strange that I want to meet a dietician? I eat nothing and still get overweight. Because the doctor sent me to the lab for all the tests that the first doctor has neglected to do for years, like tests for diabetes and all sorts of other problems that give the same symptoms as hypothyroidism, and also to be weighed and measured. Now she can see on the charts that I weigh too much for my height.
I wanted to cry, because I have not stood on a scale for years. But I weigh more than I have ever done before. Not even when I was pregnant have I ever weighed this much! No wonder my face looks like a ball, with double chins. No wonder I have had to buy new bras and have had to go up yet another size in trousers. And a so-called friend told me “but it suits you, you were far too skinny in your face before!”. Her latest comment on my depression was that she thought I should go on antidepressants “so you can be who you are supposed to be”. I will never forget those words, nor will my family because they are outright rude. So, I should walk around with a dumb happy smile on my face all day, because I am high on happy pills? That is the solution to problems, is it? So speaks only a person who has gone through nothing themselves and have no compassion or empathy for others and what they go through. Like a pill can solve a problem? First of all, those pills would make me more fat and then I would really find life pointless to live. Our culture tells us that we must be skinny or we are gross. Clothes are made for skinny people, not obese ones. And I am not happy about my size the way it is now nor are any other people with hypothyroidism.
When I went home, with a prescription for 100 micrograms of Levaxin, I went on the internet to see if there is any hope at all out there. And there is not. Thousands of Swedes out there sit and ask the same question and the sum is, that Levaxin can fix the problems for a few people but for most people the blood work will look fine, but all the symptoms remain. And the only way to get rid of them, are by a combination of drugs which Swedish doctors know nothing about! And what are these, excuse me, but bloody symptoms that I don’t want to live with?
1) A weight gain that is not connected to what I eat, since I have not changed my diet in any way. And when I diet, which I in other words do all the time, since my gallbladder prevents me from eating what a normal human being eats, it does not affect the weight what so ever! In a year and a half, my legs have become full of cellulite from foot to bottom. I can’t show myself in a bathing suit since I feel too ashamed and know that people just blame me, not a disease or lack of hormone.
2) Brain fog which makes me drop and loose words I know by heart. It makes me sound uneducated and like I am on something, since my speech get choppy trying to remember the words. I mean, what is the point of living if you can’t remember the things you have learned in this life? And from all your extensive reading. For heaven’s sake, I am an intellectual. Without my words, I am nothing!
3) I am so tired that I want to spend all my time in bed sleeping. To get out of bed is a nightmare and I long to get back in to bed and close my eyes. I can’t exercise because I am too tired and need more sleep. Before Christmas I had to deliver “Kitty’s” star boy outfit to his classroom which meant a lot of stairs. When I got up, I was panting like a dog in summer and the special ed teacher blamed me for not being fit like her and that I need to come there and run up and down the stairs. This site on the internet says it would be pointless, because this is a hypothyroid symptom.
4) I am constantly cold. I have spent a fortune this autumn on cardigans etc. since my old clothes do not fit and nothing seems to keep me warm. My finger tips are so cold that my iPhone doesn’t react! To never feel warm enough is horrible and means that I do not want to go outside at all.
5) Edema. I can’t call it anything else when everything feels swollen. My legs, so I can’t get boots on, my fingers, so I can’t get rings on, a double chin, a hanging bag of a stomach over the C-section scar, bags under my eyes. My skin looks like my mother’s, who is in her 70s. People in make up shops want to sell me skin creams for old geezers and I just want to scream at these little tarts that I am not even 50 yet, thank you. I can’t help that I look the way I do. That I have aged 15 years in just one year, thanks to that stupid little thing called my thyroid, which is no longer working. I do not want to shop in the fat department nor do I want to go to an old lady’s shop to buy old women’s clothing. I do not care what I look like because I am the age I feel inside, and noone has the right to tell me that I am too old to wear this or that make up or clothing. I should not have to wear an id-card around my neck to prove my age!
6) Depression. I just want to be happy and I am not happy when I hate myself. And I hate myself since I no longer have any control at all over my body. It doesn’t matter how much I cut down on food, I can’t loose weight. I doesn’t matter what skin cream I get, because I can’t make my skin alive. It doesn’t matter if I walk to Copenhagen from here, because I can’t get rid of my cellulite legs. Everything on my body looks disgusting and I cry daily about it. And no happy pill is going to cure my looks and make me the happy mother I need to be for my children.
Unless I, like Danish Helle Sydendal, can find a doctor who knows what she or he is doing and can give me Liathyronin with my Levaxin. THEN perhaps I can get a second chance at life? This is what the medicine did for Helle:
Why should not all of us be entitled to this? With Levaxin, your blood tests will look great but the Levaxin does not fix the symptoms or the fact that with Hypothyroidism, nothing in your body works the way it should. That is how important that little thyroid is to the entire system. Everything is dependent on it, everything. I am ordering Helle’s book “Getting your life back” as soon as I can! Even if it will only tell me that no Swedish doctor can help me or only the doctors working in Stockholm.
UPDATE: The smart doctor I went to in December, has gone back to her regular job and has passed the bucket to a foreigner who can hardly speak Swedish. On the 23rd December, I had lots of tests done and on the 30th I went in fasting, to have the diabetes test done. Yesterday, the male doctor, who sounds like he comes from Sri Lanka (sounding just like the Sri Lankan administrator at my children’s school who doesn’t understand a word I say and I don’t understand him) phoned me and told me that the tests are fine except I am anemic. He wants me to have another test to see if the iron level has gone up and if not, he wants me to go on iron pills. I told him I can’t since the hypothyroid makes me constipated as it is. HE DID NOT LISTEN! I read off my list and demanded to get combined treatment of Levaxin and Liathyronin and he REFUSED. He says he knows nothing about it and that only doctors in Stockholm will try that. And he was very adamant that not a single doctor in our province will prescribe Liathyronin. I can’t travel up to Stockholm to see a doctor. Sweden is full of quacks, there is nothing else to say about it. When I get to read the book mentioned above, I hope it gives ideas of Danish doctors who can help and I pray that there will be one in Copenhagen or Helsingör. Yes, it seems like I will have to go abroad to get help! The doctor I talked to yesterday was a COMPLETE UTTER IDIOT and he did not listen to a word I said!!! To him I want to say the following: Welcome to today’s world where doctors no longer are gods and the patients know more than them, thanks to the internet!