Frustrated Hypothyroid sufferer

Even though I was on Levaxin (Swedish Hypothyroid medication), I started to get back all my Hypothyroidism symptoms, last December. I never reflected over it much, since after all, I was medicated. But when I went in for my scheduled blood test, the doctor thought I wasn’t taking my hormones. And I was scolded for not having come in sooner, that every time you have the symptoms, you have to go in for a blood test, even if you are on Levaxin. How was I supposed to know? I am back on the circus of trying to find the proper dosage again. BUT meanwhile, I have been spending hours and hours, watching these interviews with experts on Hypothyroidism and Hashimoto’s, via the Underground Wellness. All in all, I think I have watched six interviews.

I can not accuse them of helping me one bit. They have scared me. They have had me in tears, since it all feels so hopeless. And they have made me feel that there is nothing I can do, because I live in Sweden and not in the US. They have not come with anything truly helpful and have recommended things that you can not get hold of here in Sweden. It seems like even though this is a more common problem than you would ever imagine, doctors don’t know a thing about it. Most of us are forced to go to GPs and they have absolutely no knowledge at all, nor do they follow the research and they will just put you on hormones and hope for the best. This is very scary when you hear these interviews and they tell you that Hypothyroidism is the third biggest killer, there is.

The first interview that I sat down to look at, was with a woman who is a pharmacist and who has cured herself, or treats herself I should say. She talked about how sufferers usually are low on iodine, selenium, vitamins D and B12. To be low on vitamin D, means your immune system isn’t fit for fight. And to be low on B12 means that you are tired and you can not digest your food properly, so you get problems with your digestive system. This dietician who was interviewed a couple of days later, said that it was selenium, zink and magnesium, which were the most needed things to take, since they fix things, so that the T4 becomes T3 in the liver.

When you listen to these interviews, they assume that you know all sorts of things about your disease, which for me was very upsetting, because half of the information was just not comprehensible to me. But one thing she spent a lot of time on, was how stress contributes to the onset of hypothyroidism and Hashimoto’s. And how it continues to damage. I think we all know how stress is damaging, but for the most part, I think we connect it with head aches and stomach problems. And it is the one thing which is the most difficult to eliminate from our lives, because sometimes it is others who put the stress on us. What she brought up were the adrenals, located above the kidneys. They are supposed to push the gas pedal in the body but when fatigued or stressed out, they put the breaks on instead. One sign of fatigued, stressed out adrenals is that you get the symptoms back, after feeling great for a while, on medication. And what more than ordinary stress can lead to this condition? Emotional stress, fatigue, gut infection and inflammation.

The scary thing she said about taking hormones, is that the doctors never look at the causes for our hypothyroidism. They sort of see a leak in the system and decide to just keep filling the bucket, instead of looking for the hole. The causes can be genes (pre-disposition), triggers (nutrient deficiency, virus, bacteria) and gluten sensitivity. But it can also be what they called leaky guts or intestinal permeability. Meaning that one has small holes in the intestines and when food leaks out through these, it gets where it is not supposed to be and the immune system starts to attack.

At this point I started getting upset, which I always become when people start saying that one should stop eating this and that. She suggested that one goes in to one’s doctor and demand a saliva test to show if the immune system is attacking one-self and a blood test for food sensitivities, not allergies, but sensitivities. This might work well in the US. You can’t go in to a health clinic here in Sweden and demand anything! You are not allowed to self-diagnose yourself. They are the Gods and you better accept it. So you are stuck with your GP and what she or he decides to do with you, is her/his business.

She also sat there telling you about seven supplements you should be taking along with your hormones. Only problem was that a lot of the supplements were indeed pre-scribed medicines and since she is a pharmacist, she can sit and experiment on her own body, but it is hardly advisable to do so when you are an ordinary person without medical knowledge. You could do more harm than good. As an example, she had been taking some pill, and had started with one, felt nothing, took two, took three, took four. Then she got a burning feeling in her stomach so she knew she must back down to three. Do I want to experiment? No! I read somewhere that magnesium was good for head aches, that they meant you were low on the mineral. So I started to take magnesium and my body’s reaction was full-blown diarrhoea. It was just water, and I could not leave the loo. So, you can’t even experiment with vitamins and minerals! This woman said take Vitamin D, another woman, interviewed on another day, said that too much Vitamin D will lead to calcification of the bones. Who wants that to happen? Not me! And a third expert said that if you take Vitamin D, you also have to take Vitamin A, to help the body absorb the D. The Vitamin A you need for this process to take place, can ONLY be found in animals and cod liver oil. So vegans and vegetarians are really slowly killing themselves, she said, by destroying their liver.  She also brought up K2 for the absorption. So, it is an entire science, just like the body is!

The next woman interviewed was also a sufferer, who was trying to lose weight. What are the symptoms of Hypothyroid you might ask? Well, she went through the most common:

– Hair loss ( I went to a shoe shop Saturday and came to talk about Hypothyroid because my feet felt swollen, with the owner, and she said “I have it too! I ran to a dermatologist because I was loosing all my hair!”) The woman said that some doctors can see you have Hypothyroidism just by looking at your eye brows. If they do not reach all the way out (?), then you have it. They shall reach all the way out and be equally thick all the way from nose and out.

– Dry hair. It tangles. This is what I have lived with for years on end and has always baffled my hair dressers. Now I can tell them.

– Thin brittle fingernails.

– Additional pounds. It is part of your “Thyropause” which means weight gain, fatigue (beyond belief), mood issues, constipation and always being cold.

– Head aches (there is not a single morning when I don’t wake up with a splitting head ache!)

– Cold feet and cold hands, and we are talking ice cubes here. Reynaud’s syndrome!

– Low sex drive. Or how about none at all?

– Slow speech. This is an embarrassing one.

– Brain fog. You just lose things, words and things are slow…

– Hyperlaxity (I have probably spelled this wrong, but what it means is that I and others, can bend their fingers backwards, VERY far!)

– Depression or like what one doctor said: No spark of life

– You are short as a child! I was always the shortest in my class and so is, “Cookie”, who they always suspect is just 8-9 years old, and never 13!

She did say, that one trigger can be when one has been on Paleo or Atkins diet and have become low on some nutrients. At the same time, she talked about reducing the inflammation one is obviously having in one’s body. Her suggestion of food to eat was a paleo-like diet with lots of vegetables, sweet potatoes in particular, and wild game. That the first thing to do with Hypothyroidism is to take care of your gut and to do this, you have to eat clean protein and slow carbohydrates. But one must be aware of that too little carbohydrates, messes up your thyroid. It did not sound like she had all answers though. She said that paleo is a great diet for men, but women’s bodies are too complicated for it to work. We need some things the diet cuts out. One thing women really need and people with thyroid problems need, is fiber, since with hypothyroidism, you get constipated.

Three things, which she insisted on that one should keep out of one’s diet, were

1) Goitrogenics. A word I have never heard before, but she and others gave as examples, broccoli, cauliflower, brussel sprouts, kale, spinach, cabbage and ochra. In other words, all the things I have heard from childhood, are good for you. I have always detested brussel sprouts, BUT spinach can actually taste good in pie and on pizza. And I love cauliflower stew and eating raw cauliflower with dip. And now I was told that they are extremely harmful!

2) Gluten

3) Soy. One little thing containing this, slows you metabolism down 7% and boys and men, get “manboobs” according to a dietician, later interviewed. I was amazed how they went on and on about soy. In Sweden, you might have soy sauce to make a sauce brown and I use it in our spaghetti sauce recipe, but we have a bottle of it for years. T. said that the problem is an US problem, that all food and food given to animals, are gene manipulated. They are fed soy and there is soy in everything American, but Sweden does not allow any of it, so soy is definitely not the reason why my thyroid stopped doing what it was supposed to do.

To be honest, she did not really say anything that could help me lose weight. She said that one should keep one’s stress down, with an inner balance app for one’s phone and do burst training. If one goes on a thread mill for an hour, one raises the cortisol or stress hormone, instead of hitting the pause button. She suggested one take MCT oil, because it helps the absorbtion of the thyroid hormones the doctor gives you. Her suggestion was 3-4 tablespoons. T. says that one can not find MCT oil in Sweden, but I am not sure if he is correct. Wouldn’t surprise me if it costs an arm and a leg though. Most things they recommended in these interviews, are very expensive when I check Amazon. Only the rich can really afford to get well, and if that is not depressing, what is?

The one very important thing that came out of this interview, was that while doctors say that a level between 0.5 – 4.5 is normal range, it is a blatant lie and a dangerous one. The levels should be 0.3-1.5. So when my levels last summer were down to 3.2, they were not good at all! Better than 13, in July 2012 and 11, in January of this year, but still nowhere good! Should I bring this up with my doctor next time I talk to her? I feel I must but she will get angry with me, no doubt about it.

The next interview, I watched was one which focused a lot on gluten and other harmful substances. It was a male doctor being interviewed this time and he added to dangerous things, by saying that one should avoid all chlorine. So forget using a swimming pool or even walking by one, because then you breathe in the chlorine and via the lungs, it will hurt your thyroid. With the gluten, he said that the immune system react to it as an invader that should not be there. And then the immune system can go bonkers and attack all sorts of other foods as well, because it mistakes them for gluten. To be honest, I did not understand it all. Very technical and I could not take notes that made any sense. But according to him gluten is the culprit to all damage in the body. And you will find it everywhere. Even in schampoo! When you put it in your hair, you will breathe it in, and the damage is done! He really wanted to see people cutting out all gluten, dairy, soy and sugar from their diets, to get well and stay healthy. That the most important thing is healing one’s gut since it’s the root of most problems.

If I was to cut out all the things these people brought up, I will have to live off air. Some things, I can not afford cutting out of my diet. I am not a bread eater. I only eat it, on rare occasions. But since gluten is present in basically everything, it means getting speciality foods when it comes to absolutely everything and we do not have the funds for that. Gluten free products cost an arm and a leg. Saturday, I just stood and looked at a box of pasta costing 7:- ($1.07/ 0.64 Pounds, € 0.78) and a bag of quinoa costing 50:-($7.62/4.54 Pounds/€5.57). With one income and six children to feed plus two adults, it is easy to see what I can afford to buy! And one child, I might add, being a teenage boy with a belly like a bucket with a hole in it. I love dairy products. That is one source of protein for me as well as calcium. When one does not have a gallbladder anymore, one is already on a very, very restricted diet. Fatty things don’t work. Eggs definitely doesn’t work, nor apples. Fried things mean hours of indigestion and diarrhoea the next day. So what exactly am I supposed to eat?

In a fourth interview, I found out that if the symptoms do not get better, one might have moved on to Hashimoto’s which is an auto-immune disease which the doctors can’t do anything about. One can get it to go in to remission, but that is it. And one of the things making it worse, is: GLUTEN! She said that it doesn’t matter what grain you eat, it is all bad, because the body can not tell them apart. Their structure is too much alike, so it doesn’t matter if the grain doesn’t contain gluten. You will still react the same. And if you eat gluten, then the body will start to react against other foods as well, that you ordinarily would not be sensitive to. As if she had not got me depressed before, she also added that it is impossible to stay healthy today. Our parents and grandparents could stay healthy by eating healthy things, but we can’t do that anymore because there are no healthy things anymore. Everything is dangerous, everything contains toxins, pollution, you name it.

When asked what we are supposed to eat, she said eggs, red meat, garlic, onions, all the things that I can not eat without a gallbladder! What we absolutely should stay away from according to her, apart from everything gluten, was sugar and starch, not eating too much protein and only as much fat as we need. This fat should come from naturally occurring oils like olive oil and avocados.

The final two interviews which I have watched so far, talked a lot about becoming pregnant and staying pregnant. Let’s say, you miscarry because your T4 doesn’t become T3 in the liver. To fix things, you really need to be in the care of an expert. She told Sean Croxton from Underground Wellness that it takes two years to prepare your body for pregnancy. In other words, no wonder I lost Serena Rose. No wonder I had a miscarriage in week ten, in January last year. I suspect that my thyroid has been in trouble for ages and it finally gave up. It finally could not sustain a pregnancy with Serena Rose, and the ones it has sustained, have ended up with disabled children. Women with thyroid problems run a big risk of having children with low IQ, ADHD and all the other neurological disabilities! One of the symptoms that something is wrong, is according to her, morning sickness. It is caused by T4 not becoming T3 in your liver. I am probably not the only woman who has been sicker than a dog with all my ten pregnancies (three ended without a baby).

Another symptom of the liver not making T3 out of the T4 is low blood pressure and becoming dizzy when standing up. She said that it means that your adrenals are shot, they are in an advanced stage of exhaustion. I have had low pressure my entire life, I have always got dizzy when standing up. So I am not entirely sure how to interpret what she said. But she said that stressed adrenals damage the thyroid!

She did kill som myths, that cholesterol is bad for you, for example. She said that all  hormones are dependent on it. Another thing was something that we probably all have understood by now, that eating real fat, is better than vegetable oils. And that plant oils are very sensitive to heat and light, so they should not really be used for frying and be stored in the dark.

The most important thing that she said in my opinion was that she explained that the liver produces bile, which will break down fatty foods. It stores the bile in the gallbladder. I do not have a gallbladder anymore so I do not have a storage unit for bile and she said that the liver then just squirt out bile, whenever. This means, that any time you eat anything with fat in it, you need to take bile salt afterwards, in order to be able to digest what you have just eaten. Why did not the doctors tell me this five years ago? Here I sit with a terrible stomach ache after every time I have eaten pancakes, spaghetti sauce, Birthday cake, salmon etc. Salmon is terrible! The pain after that meal, means at least two-three doses of indigestion medicine. Bile salt is something I will look in to, for sure. If I can start eating without accompanying pain, well it would change my life!

When she was done, a psychologist came on for just about ten minutes and explained what emotional stress is. Not quite the everyday stress but it’s trapped emotions, stemming from what we perceive as traumas. Emotions that have not been processed. And what can this lead to? Stage fright, ADD, cancer, anger, impatience, irritation. Especially resentment leads to Hypothyroid. When hearing this, I started to think about it deeply.

In this world there are some people who are highly sensitive persons, HSP. I am one of them. One of the “symptoms” is, that we get caught in an emotion. We can’t move on when something has upset us. We can’t just shake it off. We take things harder and deeper than others. Now, after this psychologist said, what harm it causes, I started to think about how one can move on. When deeply hurt, it is no longer a matter of forgiving. It will not heal the wound. It’s the pain, which has to be worked through. And how can one do this? Certain pain I don’t think one can get through without a lot of help. But I think that certain levels of “trauma” can be dealt with by oneself. She suggested one rate ones traumas and the ones that are smaller ones, slights, provocations, things that touches one in a way that one can’t explain really, should be easy to get over, if one deals with them. That is why I just published a post on my children’s school and about my feelings Saturday, about the Eurovision Song Contest. I was so upset after the latter, that I was making myself ill. Because that is what it is like to be HSP. It wasn’t the fact that a homosexual man won the song contest and that he wore a dress and beard. No, it was the deeper things behind it all. That noone believes in the plan of God anymore, the fact that innocent children have to grow up in a warped society and the fact, that if one believes in what God teaches, then one is considered the abnormal one in today’s society. There is no room for me because I have no right to feel and believe in what God teaches us. That is what made me upset and to not destroy my thyroid, I vented in a post. To process the trauma, to process the emotions.

Perhaps all these thyroid discussions have helped someone out there, but they did not really help me. There was no way of taking notes, as quick as they were talking and moving from topic to topic. And as I said above, to overcome most problems you need professional help and the amount that it will cost you to change your entire life style, demand that you have a very high income. I have not watched the last interviews posted yesterday, all about food, but if I should say one thing about these interviews it is this: They were all set up to promote the interviewed persons’ books. In a way, you can not safely start doing anything, until you have purchased a bunch of books and have plowed through them all. Just for the fun of it, I went in on Amazon, to look for the books mentioned and also which rate the highest. It’s a complete nightmare! An entire jungle of books and if one looks at the reviews, not a single one really helps or lives up to its title. So, basically, I am back to square one.

Added later on: The two health food stores in town have never ever heard of MCT oil nor Bile Salt, so I really wasted my time watching all those interviews! You can’t get anything to help you in Sweden. The market is too small, even if perhaps half  the female population suffers from Hypothyroid.

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4 Comments

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4 responses to “Frustrated Hypothyroid sufferer

  1. Sorry but I only put in pictures if I feel there is a need for them. Hypothyroid discussions do not need any pictures. What is it you want to see? A tired and depressed woman? Don’t think so! Or my doctor’s letter to me, which states my levels?
    I’m glad you enjoyed the writing though.

  2. I could not refrain from commenting. Exceptionally well written!

  3. Its like you read my mind! You appear to know so much about this, like you wrote the book in it or something.
    I think that you can do with a few pics to drive
    the message home a bit, but other than that, this is great blog.
    A great read. I’ll certainly be back.