#3 Hashi & Me: meet Lauren
Hashi & Me is a series of stories for people with Hashimoto’s told by people with Hashimoto’s and other thyroid problems. In each piece, one of us will share our experience with Hashimoto’s, our personal findings and tips. We believe one person’s experience can be useful for others, especially to newly diagnosed people.
This week meet Lauren, a freelance writer from Dubai.
How and when did you discover you had thyroid issues? Tell us your story.
It was kind of by chance, back in August 2015, when I was 24. I had spent the day at the beach and then suddenly fainted when walking back to the villa; at first I put it down to regular dehydration or heatstroke, but the next day a nagging feeling told me to go to the doctor just to get checked out. The doctor was very thorough with his check-up and he found a lump in my neck. He immediately sent me for an ultrasound, to determine the size and structure of the nodule, and from that I was referred to do an FNA (fine needle aspiration) biopsy. The results came back with strong signs of malignancy, so the next step was to undergo surgery to remove the nodule and my thyroid.
Luckily, it was caught early before the cancer had been able to spread to the lymph nodes
Luckily, it was caught early before the cancer had been able to spread to the lymph nodes, and my skilled surgeon was able to preserve a small portion (about 15%) of the right lobe of my thyroid, so I didn’t have a total thyroidectomy. The hope was that the small remaining part of my thyroid would be able to recover and give me at least some natural thyroid function, which thankfully it started to do about 3 months after the surgery.
Since getting pregnant in November 2016, my thyroid has struggled to cope with the extra demands on it.
But since getting pregnant in November 2016, that small portion of my thyroid has struggled to cope with the extra demands on it, and as a result my TSH started to rapidly rise again. I have twice doubled my dosage of Euthyrox medication during pregnancy, as it is crucial to keep TSH below 2.5 during the first trimester and then below 3 for the second and third trimesters to ensure the healthy development of the baby.
What did you learn since? Do you have some tips or findings to share with other people?
I learnt to always listen to my body; it has an incredible way of telling us what it needs, or when something is wrong. I had ignored my extreme fatigue symptoms, and an increasing intolerance to heat, for several months before I fainted and then had my thyroid nodule discovered by the doctor. I had put my constant exhaustion down to living a busy professional lifestyle, but my body forced me to take more notice of my symptoms when I collapsed. During my recovery from surgery, my body has once again been the greatest indicator of when something is not quite right. Even when my TSH levels were showing as within range, I was still struggling with crippling tiredness and a lack of motivation, so I kept pushing my doctors to pursue other tests and get to the bottom of what was causing my symptoms. It turned out I had developed severe Vitamin D and Ferritin deficiencies after my thyroidectomy — two conditions which are closely linked to hypothyroidism — and once those issues were addressed I started feeling much better.
My advice would be to always pay attention to your symptoms and don’t take ‘normal’ blood test/lab results as a final answer.
So my advice would be to always pay attention to your symptoms and don’t take ‘normal’ blood test/lab results as a final answer. If you feel something is wrong, and your body is telling you so, you have every right to demand more investigations from your healthcare providers.
How does your day with look like?
At the moment, I have the luxury of not having to wake up with an alarm in the morning and report to an office at any certain time. I wasn’t afforded this luxury in the weeks and months recovering from my thyroid surgery, but now, during pregnancy, I feel very fortunate that I can just take each day as it comes and not be under pressure.
I usually wake up around 10am, take my Euthyrox tablets with a bottle of water next to the bed, and then I relax in bed for another hour until I am able to eat. Usually I’ll have a bowl of cereal and a fresh banana and almond milk smoothie. My husband doesn’t go to work until afternoon/evening time, so we are able to have lunch together most days, and then we try to go swimming in the pool at our apartment building as often as possible, as it is a great, gentle way to exercise during pregnancy. I’m also taking Prenatal Pilates classes to try and stay as active as possible. By the early evening I tend to get an energy crash, but I haven’t been napping — although it is recommended during pregnancy. I curl up with my laptop and maybe write a new blog post about a thyroid- or pregnancy-related topic for Butterfly Free, and I research the various thyroid treatments and dietary recommendations.
Most nights I struggle to fall asleep and am awake tossing and turning until 3am; a common symptom of hypothyroidism.
Even if I feel physically drained, most nights I struggle to fall asleep and am awake tossing and turning until 3am; a common symptom of hypothyroidism. At the moment it’s also between midnight and 3am that the baby is most active, wiggling around in my belly!
What were the biggest struggle and the biggest victory your experienced?
Apart from the shock of being diagnosed with thyroid cancer — it all happened very fast — the biggest struggle for me was dealing with the after-effects of the surgery and resulting hypothyroidism whilst still trying to maintain my demanding career. I went back to work full-time just a week after my thyroidectomy, which, in hindsight, was way too early. I didn’t allow my body enough time to recover and I was too desperate to prove to everyone that I was fine. It was also a struggle trying to get certain people to understand what I was going through — I looked physically fine, so they assumed nothing was wrong with me. But on the inside I wasn’t feeling well at all.
Getting pregnant without any issues was a great blessing, because hypothyroidism can have a big impact on fertility.
Naturally the biggest victory was being declared all-clear after my surgery, and not needing to go through radioactive iodine therapy as a post-op treatment. I would also say getting pregnant without any issues was a great blessing, because hypothyroidism can have a big impact on fertility, and one of the endocrinologists I had seen after my thyroidectomy also told me I was suffering from PCOS (polycystic ovaries), so it was a small concern in the back of my mind that I may struggle to get pregnant. But thankfully that wasn’t the case at all.
What advice would you give to someone newly diagnosed to ease their first steps with thyroid issues?
Don’t be afraid to challenge your doctors
I would say try to take it easy as much as you can, although it’s often not viable if you still have work and/or family commitments to handle. But don’t be ashamed to say you need help, or you are not feeling well, or you need time to rest. Don’t try to pretend that you are fine just to please people around you. You are the one living in your body, you can feel what it needs, so don’t feel pressure to act ‘fine’ just because everyone says you look ‘fine’. Also, don’t be afraid to challenge your doctors, and don’t accept the ‘TSH is within range’ answer if you are still suffering with symptoms. I dealt with some doctors whom I instantly trusted and felt at ease with, and some others I just didn’t feel comfortable or confident with at all. Trust your instinct and always go for a second, and even third opinion, to ensure that you get the best care and treatment for yourself. It is possible to survive and thrive with a thyroid condition, with the right combination of medication (make sure your dosage is optimal for you, and weigh up the pros and cons of synthetic thyroid hormones vs natural desiccated thyroid — sometimes it will be a case of trial and error to discover the best solution for you), and with a supportive network of friends, family and colleagues around you. You can do it!