(Disclaimer: In this post I talk about medical issues and medications, but I am not a doctor of any kind and this is really just my story and should not be taken as medical advice of any kind.)
Hi everyone!
This post is going to be recounting how I got diagnosed with hypothyroidism.
When I think back on it, I probably felt the earliest symptoms of my illness back in 2014/2015. I had a falling out with a friend while we were traveling in Australia and I had a panic attack on the flight to New Zealand and decided to cut my trip short because I felt so drained and not like myself.
However, when I got back home to Sweden I immediately applied to college in Santa Barbara because I was so focused on going after my dream and following the plan that I had created for myself that I didn’t listen to my body.
I would say when I really started noticing that something was off was probably in late 2016, but again, I was so intent on not giving up on my plan (which at this point had already changed since I didn’t stay in SB as long as I had thought I would so I didn’t want the plan to shift even more than it already had) that I didn’t pay any attention to how I was feeling.
In the fall of 2016 I went with my family on vacation to Gran Canaria and my mom took this photo of me. Looking back on it I don’t think I was feeling 100% here but this is probably the last photo where I look like myself, before it all went downhill.
My mom came with me when I traveled to New York in December 2016 (we flew literally on New Year’s Eve as I had to be in the country on January 1st 2017) in order to move there. And I think that I had wanted to live in NYC for so long that I got wrapped up in the idea of living my dream.
But soon I was feeling so bad that the only thing I had the energy to do was to go to school and then come straight home where I did my homework in bed and then spent the rest of my time either watching Netflix or sleeping.
The symptoms I had at this time were:
- Rapid weight gain
- Massive hair loss – I was losing chunks every time I took a shower or ran a brush through my hair
- Brain fog
- Very hard to concentrate or focus on anything for too long
- Absolutely no energy, very tired all the time
- Pain in my joints and muscles
- Hard time sleeping
- Dark spots under my arms
- Massive sweating (and it smelled foul too)
- Itching and red patches all over my skin (this also kept me from sleeping) – I think this was mostly due to stress, but I can’t be too sure
What was weird was that I never really put all my symptoms together, I never thought that they could all be because of one disease. This was probably because I was in denial, I really didn’t want something to be wrong, I just wanted to be happy and live my life in New York, like I had planned.
When I went home to Sweden over the summer I had lined up a summer job as living in New York is not cheap and my student loans did not cover my living expenses. It was only a part time job in an interior decorating store, so not very demanding, but I could barely keep it together. In the beginning of summer I saw some friends that I had missed while I was away and I tried to put on a smile, like everything was okay, while on the inside all I felt was drained. After only a lunch out with a friend I had to go back home and rest.
Finally, my mom said enough and told me to go see a doctor. I went to my local health clinic in July 2017 and meet with a doctor that asked me repeatedly if I could be pregnant and wanted to do a pregnancy test even though I told him there was no chance as I had not been sexually active in months (I was feeling like a walking zombie and barely made it out of my dorm room, so hooking up was not high on my priority list). When I finally convinced him that I was not pregnant he took some blood and ran a myriad of tests. What came back was extremely high levels of cortisol. I was asked to come back the next day to redo the test but to fast beforehand, as that is how you get the most accurate reading for this type of test. When I came back the next day my cortisol levels were even higher than the day before. I immediately got a referral to an endocrinologist (basically a hormone specialist) at the local hospital.
I met with the endocrinologist for the first time in September 2017. The first things he asked me had nothing to do with my cortisol at all, but rather if I was maybe feeling a little depressed or just down, as these things, especially in a young woman, can lead to physical symptoms such as weight gain and stress. After I repeatedly told him I was not depressed he ordered a bunch of blood work where he tested for numerous different things. This kept happening, to the point that I was at the hospital drawing blood so frequently that the nurses knew my name and we had ongoing conversations that we just picked up the next time I came by.
The endocrinologist was so focused on my high cortisol and he was convinced that I had Cushing syndrome/disease. I kept having blood drawn and also collected urine in big plastic jugs that I had to bring in to be tested, and it all showed that I still had high cortisol.
In October I was admitted to the hospital so that they could take my blood and test my cortisol every 4 hours over 24 hours. At first I had to share a room with an old woman who, frankly was as near dead as you can be. The nurses had to keep coming in and doing things to help her and eventually they found me a private room so I could at least try to relax, watch some Netflix and read my book, since I was really just waiting for the next time they came and took my blood. Unfortunately, this test was inconclusive, which seemed to be a running theme with my doctor. He kept telling me that my cortisol was higher than it should be but not high enough that it could tell him anything conclusive, he kept calling it a grey area.
After the 24-hour monitoring of my cortisol didn’t show anything conclusive I was referred for an MRI. If you have Cushing disease you will have a tumor on the pituitary gland that makes it produce too much of the hormone ACTH, which can in turn make you produce too much cortisol. A few weeks after I had done the MRI I went on vacation with my family to celebrate my mom turning 55 and I still had not heard from my doctor about my results. I remember being so anxious on that trip, checking to see if I had gotten any results and being so disappointed every time there weren’t any. I had told my doctor I would be traveling and which dates I would be gone so I had hoped for a call before I left, but when I got back and I still did not hear from him I decided to reach out. And since I did not have his number I had to call the hospital and leave a message asking the doctor to call me as soon as possible with the results that would tell me if I had a brain tumor or not.
Fortunately, the MRI did not show a tumor, but what’s really crazy is I was actually kind of disappointed. I was feeling so shitty and had done so many blood tests and was getting no answers, at least if I’d had a tumor it would explain what was wrong with me and there would have been a way to fix it, even if that meant brain surgery.
My doctor started looking at what else could be the issue and suggested I might have PCOS. The only thing that really made him think this, at least as far as he told me, was the weight gain I’d had. I was not sure I had PCOS as none of the other symptoms really fit, I had a very regular period and even got my period back right away after I stopped taking my birth control pills, which I did in September as I was having my hormones tested so both me and the doctor figured not adding any more hormones would probably be best. Nonetheless, I went to see the gynecologist in January 2018 and she confirmed what I thought, I did not have PCOS.
Also in early 2018, I went to the hairdresser and when asked if I wanted to do the usual blond (yes I know, shocker, I’m not a natural blond) I instead told her I wanted pink. I think on some unconscious level I just wanted something to change, something I could feel like I had control over. I felt so trapped in my life where I felt so badly all the time and I had a doctor that seemed to lose interest in my case the longer time went on. I felt like I was probably gonna be stuck in this life of living at my mom’s and not having the energy or feeling well enough to really do much of anything for the rest of my life.
By the spring of 2018 I was having to chase my doctor in order to move my case forward. He did not contact me and when I was finally able to reach him, he just kept ordering the same blood tests over and over again. I was fed up and so frustrated that I sought help elsewhere.
My mom was diagnosed with hypothyroidism in 2013 and is involved in a lot of groups regarding this illness. This was how she found Mia Lundin, a nurse practitioner who is specialized in the fields of gynecology and obstetrics and has worked with women and women’s health for over 29 years in the USA. She was finally opening her first practice in Sweden in the spring of 2018 and we were able to get appointments in May.
Mia Lundin’s practice is called HerCare and there I was able to meet with Mia Lundin herself and after telling her how I was feeling and what I had been going through she ordered some tests, but not the same ones that my doctor back home kept ordering. These tests showed that I had low serotonin, low GABA, low dopamine, low nor-epinephrine, low epinephrine, low glutamate, and still high cortisol. These tests had never been done on me by my endocrinologist and if I had not sought help on my own I never would have found these things out.
I was put in contact with a nutritionist that suggested I avoid sugar, gluten and dairy for 2 months, and also gave me some supplements, such as GABA (which the body produces naturally, it is an amino acid that essentially produces a calming effect), 5HTP (which boosts serotonin levels) and L-Tyrosine (which improves alertness, attention and focus). So, in essence they actually listened to the symptoms I was having and how I was feeling and gave me supplements that could help directly with those issues.
In June 2018 I was probably the heaviest I’ve ever been, weighing over 80 kg (over 176 lbs.), and I started out at probably around 63 kg (138.8 lbs.) so that was an increase of around 20 kg (44 lbs.), and I’m only 165 cm (5’5). I was feeling so discouraged and every time I looked in the mirror I was saddened by the fact that I did not recognize myself anymore.
At this point I really was just feeling so frustrated, sad and angry about the fact that no one had yet to figure out what was wrong with my health and my doctor seemed to care less and less. I was starting to think that I was going to have to live at 30% capacity for the rest of my life. But then I went and saw Demi Lovato in concert (remember when those were a thing?) with a friend and when Demi talked about how you need to keep fighting through the darkness and that there is light at the end of the tunnel, I literally started crying. She said, “This one goes out to all my Warriors” and then started singing her song Warrior, and I felt like she was speaking directly to me. This was an important moment as I decided to not stop fighting for myself and my health, and I held on to those words, because there is always a light at the end of the tunnel, sometimes you just have to fight to see it. As soon as I got home I booked an appointment and in August I got my Warrior tattoo to always remind me of just that.
I think it’s important to note here that in September 2017, at the same time as I started seeing my endocrinologist, I also went to a therapist that I saw every few weeks. I felt like this issue with my health was, if not brought on by stress, then at least amplified by stress, and I wanted to do all I could on my part to get better. So while I handed off the investigation into the physical side of my well being to the doctors I wanted to take control of the mental side. And I have to say I am very fortunate that I found an amazing therapist who helped me so much, especially during the harder part of this period of my life. I also developed social anxiety during this time in my life as I was so isolated and hardly saw anyone, but I will do a whole separate post on that.
So, I kept hounding my doctor to keep helping me and finally he gave me a referral to Sahlgrenska, a hospital in Gothenburg where they have doctors that are more specialized in hormonal issues. I was so excited as I figured these doctors were experts and I was finally going to get the help I needed. This however did not happen and I was treated so poorly at my appointment. After I told them the whole story of my health issues I was asked what I thought could be wrong, like I was meant to do their job for them, and they did not take me seriously and acted like I was making things up or exaggerating or just there to waste their time. They did some blood work but when I left there I left in tears, so incredibly angry and frustrated. I had my appointment in December 2018, and I did not hear from them at all until I got a letter in the mail in the summer of 2019 with my test results and the question of whether I wanted to schedule a new appointment. As if!
So, after that disappointing appointment at Sahlgrenska I decided it was time to take this into my own hands, and fortunately my mom was able to help me financially to get in contact with a private doctor. This doctor works mainly in Norway, but he is Swedish and he helped my mom a bunch when she felt like the Swedish health care system let her down. So I contacted him in January 2019 and told him my whole story and sent him all my test results from the endless blood work I’d had done.
I also told him, as I had repeatedly told my endocrinologist and any other doctor that would listen, that since my mom has hypothyroidism and it can be genetic, and my symptoms fell in line with those of hypothyroidism, I thought I could have this as well. My doctors at the local hospital just kept telling me that my levels of TSH, T3 and T4 (the thyroid hormones) were all within the normal values so they did not even look into it at all. However, this doctor works in a more holistic way and actually listened to my symptoms and how I was feeling and did not just look at the test results. And so, since my mom was already taking Erfa, a thyroid medication that is bioidentical, I was told I could try out her medication for a few weeks and see if I got better and kept feeling better. Which is exactly what happened.
I was put on 15 mg of Erfa 2 times a day (which is what I still take) and I could feel almost immediately how my brain fog cleared up, I got my energy back, and I felt almost like myself again. I cannot tell you what a relief it was, after almost 2 years of frustration and not knowing if I was ever gonna get back to myself, to feel like I had reached it, the light at the end of the tunnel.
In the spring of 2019 I applied to Bunker Hill Community College as I felt like it was finally time for me to get back to living my life. In the summer my mom and I were able to start running since I had my energy back and felt like I actually could.
I did also take a test to see if I had any TPO-antibodies which I did not, meaning I do not have an autoimmune disease. Most likely my hypothyroidism was brought on by years and years of stress so I might be able to stop taking the medication sometime in the future if my body has enough time to heal itself, but we’ll just have to wait and see.
I would say that 2020 was the year I fully started feeling like myself again, which made the pandemic even more of a bummer since I wanted to start living life, and instead I was stuck at home. But even through lockdowns and everything horrible that happened last year I had personally never felt better.
I am still struggling with my weight, and that’s not to say that you can’t be beautiful no matter your weight, but for me I still don’t fully feel like I’m seeing me when I look in the mirror. And my hair is not back to the thickness it was before, but I am not losing nearly as much hair as I was before, so I am really just waiting for it all to grow back now. These are things that take time and I just have to be patient (something that is not really my strong suit, haha).
It was a long journey, and there were times when I did not think things were going to get better. But now that I’m on the other side I can see how much I grew as a person and how much I learned about myself through it all. I don’t think my confidence has ever been so low, but that forced me to work on my self-image and self-esteem and now, even though it’s not where I want it to be just yet, I’m on my way to becoming more confident than ever. And I appreciate my health so much more now than I ever have, because honestly, I took my health for granted before and did not appreciate how good I had it until it all fell apart. And I hated my body so much, for betraying me and for not working like it was supposed to, but now I have done so much work to realize how amazing my body is, this vessel that carries me around and is the host to my essence/soul/being, whatever you call it, each and every day.
If you have made it this far, thank you for sticking around and reading about my whole health and wellness journey!
If you want to read more about hypothyroidism, these are a few links to some well accredited sites:
For my Swedish readers: Sköldkörtelförbundet – Hypotyreos
In English: Mayo Clinic – Hypothyroidism // American Thyroid Association
If you have any questions or want to share your own story, please leave a comment, I would really appreciate it!
Until next time!
2 Responses
I just cannot get over how strong you are. The journey you went through (and still going) seems frustrating and overwhelming, but you did it, you did not give up, even if it felt like it, YOU DID NOT GIVE UP. I just want to say that you are an inspiration as a woman, friend and a human being. I am proud of you, and I am so happy you made it otherwise I would not ever have a friend like you in my life, and I cannot imagine it without you.
This is one awesome blog article.Really looking forward to read more. Much obliged.