Before I start I do wanna note that I am by far no professional but living nearly 10 years with an autoimmune disease that, even though it is quite common, most Doctors don’t know enough about, you start researching a lot. A lot of questions can not necessarily be answered and at some point, you might even stop trusting Docs in general. So, you start looking for answers yourself, connect with other people and keep learning. One thing I learned is, that there not that many personal blogs about Hashimoto’s, so hey! Here I am! That’s why I wanna take you on the journey with me. Not only do I wanna explain it to you the best I can but also hope we can learn about it together.
The Hashimoto’s disease is the most common cause of hypothyroidism and is an autoimmune disease that causes the body to develop antibodies against the thyroid gland due to chronic inflammation. It affects women ten times more than men and can have several causes of which not all are discovered yet. The most common Hashimoto cause and causes for inner inflammation are food allergies/insensitivity, that’s why some people can control their Hashimoto’s autoimmune disease with a diet that often contains gluten, lactose, and dairy free food. Other known Hashimoto root causes are chronic stress and genes.
Let’s talk about this small butterfly-shaped organ called thyroid gland. It is unbelievable how much power such a small organ has over the body. The thyroid produces two hormones which control the metabolism of our body cells, which means it influences how fast those cells work. So, your thyroid controls your breathing, your heart rate, your central and peripheral nervous systems, your blood flow, how much you grow, your brain development, your sexual function, your sleep, your thought pattern, your body weight, body temperature, cholesterol levels, and menstrual cycles. Do you know what this means? It means if the thyroid hormones get out of balance your fucked. Not sorry for being that blunt, because that’s the only way to put it.
So, let’s see what happens when your hormones get out of balance due to Hashimoto’s thyroiditis, I’ll give you some symptoms I partly had myself and some where you’ll see that sometimes those symptoms seem paradox. Most are so broad that it is not always easy to pinpoint Hashimoto’s. Keep in mind every body is different, so while some have a lot of symptoms or just some but those really strong, some don’t really feel any or don’t realize that they have symptoms for anything at all. Especially since Hashimoto’s doesn’t just appear overnight and be like – deal with that, bitch! – but it starts slowly and bit by bit shifts what you perceive as “normal”. It also has a short phase at the beginning where you have hyperthyroidism, which later develops to hypothyroidism in the long run.
Symptoms of hyperthyroidism include heart racing, high blood pressure, insomnia, weight loss and for the ladies of course menstruation problems like irregular or stronger bleeding.
Symptoms of hypothyroidism, on the other hand, include chronical fatigue, listlessness and dejection, insomnia, weight gain but also weight loss, anorexia or obesity, inability to sweat or extreme sweaty, low basal temperature (under 36,4°C ~ 184). Weak immune system, regular infections, colds and chronic diseases, which makes sense given your immune system is super busy rather destroying an organ than keeping you healthy and alive because that wouldn’t be fun. Recurring UTIs since you do have an inflammation in your body already, it’s easy to spread. One thing I sometimes still have today is joint and muscle pain due to the antibodies spreading and also attacking the nervous system. And because this is not already fun enough we need to add a whole layer of psychological problems to this cake: depression, panic attacks, anxiety, obsession, brain fog, bad concentration, and nightmare. Just to name a few.
Those are all just a small percentage of a long list of symptoms, if you are interested in a full list please let me know and I will publish one.
The problem a lot of us have is that it’s not only hard to find somebody who can diagnose Hashimoto’s autoimmunse disease but also treat it correctly. Most women don’t find out they have Hashimoto’s thyroiditis until they get checked for infertility and even then a lot of Doctors don’t check the thyroid or at least not for thyroid antibodies. For a full diagnosis, you need to check the TSH, FT3 and 4 and thyroid antibodies levels. And if there is a suspicion of Hashimoto’s they still need to do a thyroid ultrasound, where most likely you’ll see a pretty destroyed thyroid gland or no thyroid gland at all. Then we have the problem, that you don’t get it explained in the complex way it is, you barely here that you should get a vitamin deficiency test, not to take your medication 24h before the blood test, talk to a nutritionist to check for any intolerances and maybe change your diet and how much it affects your whole body.
Neither do they check often times for your free T3 and 4, which are the hormones produced by the thyroid but rather do they check solemnly your TSH (thyroid stimulating hormone), which is just the hormone that tells your thyroid to produce T3 and T4. So, basically, the TSH is Sharon from Human resources panicking and kicking your ass to file more papers, which in this case would be T3 and T4. Like shut up Sharon, you’re overrated!
And what happens when you find out about the importance of free T3 and T4 but your Doc still just checks the TSH? Well, you end up like most of us and start taking care of it yourself. You check your own levels, calculate the percentage of both thyroid hormones and then decide if your Hashimoto’s medication dosage is enough or needs to be higher or even lower because we also know better if we actually feel good currently or if we don’t and we wanna change something about that.
So, now that you got a general idea about the medical part, let’s talk about everyday life. Basically the moments somebody would hence you have an autoimmune disease is when they see you take your Hashimoto supplements like either synthetic or natural thyroxin, vitamins, if you do have any deficiencies, selenium to lower that TSH level, progesterone since that can also be low with Hashimoto -there are several ways to boost your progesterone level- and maybe even something that you hope will boost your hair and nails. This can end in quite a pill cocktail as you can see and all of those are having different requirements when they should be taken and if you should be sober or not. It’s not really fun but what don’t we do to feel at least somehow close to “normal” and still you can struggle with fatigue or joint/muscle pain no matter what you do, because hey! Wouldn’t be fun otherwise, am I right?
And as a woman, there might be the time you think about pregnancy and while other’s might just go and start trying, don’t go too crazy buddy, ’cause first get your levels checked again, especially if you took the pill before and stop now because that’s gonna fuck up everything. Oh! And check for iodine free prenatal vitamins and rather take natural iodine once pregnant. And don’t forget to get your levels checked as soon as you know your positive pregnancy test but until then it can take awhile because you know otherwise it wouldn’t be fun. And am I the only one who’s not euphoric anymore? Those are the moments you have to take a deep breath and just do everything as relaxed as possible but a slight frustration might stay with you the entire time, especially since there are also all those risks surrounding pregnancy with Hashimoto’s like you’re three times more likely for a miscarriage and if your levels are off during the time the fetus has it’s thyroid already you’ll risk that your child will get hypothyroidism at some point in life. It’s quite scary to every new pregnant momma and something they worry about anyways.
It somehow always affects us, because it’s always there, even if my husband always tells me in his eyes I’m healthy. I might be to others but I am not to myself, because I am the one who has to struggle with it in the end. I have to plan the next blood check, I have to swallow the pills, I have to deal with days when even walking to the bathroom completely exhausts me and I have to deal with problems falling asleep due to my muscles hurting. It’s okay because I know somebody else maybe wouldn’t have been strong enough and I know it could be worse. I also by no means are complaining, I am just stating the facts and wanna remind you that some autoimmune diseases and their struggles are invisible. Just because someone seems healthy to you doesn’t mean they are not allowed to struggle, so just try to understand and be supportive instead of maybe questioning how legit their complaints are. It helps me to know that if I struggle with fatigue my husband will take over dinner and help me as much as he can, or that when I have really bad pain going on I can squeeze his hand while trying to breath – can’t be the only one who stops breathing when tensing up due to pain- but the best way to help is understanding the self-irony and laugh about the jokes someone might make about their own body. I mean if I can’t change it, let me at least joke about and just so you know, some of those jokes are really funny!
If there are any questions or if any of you have Hashimoto’s themselves, please comment and ask away or tell your own story. You never know whom you’re helping with that.