top of page
  • Writer's pictureHayley

My Graves' Disease is back

It was actually 3.30 am one morning when I started writing this. I have trouble sleeping most nights, some I just can't sleep at all. Now is as good a time as any for an update on what is going on in my life.

I haven't written about my graves disease journey for a good few years. Generally, there has been nothing to say, I managed to get my body into remission in 2019 after two years of drug therapy, and in the past few years, I managed to keep my thyroid levels stable.

But back in the summer of 2021, I was starting to feel a little under the weather that something wasn't right, but I couldn't tell you what, I just felt not 100%.

I did ask the doctors to do my blood count and check my thyroid levels as I could start to feel the stress levels rising. I felt hot-headed like I had high blood pressure, I felt snappy, irritable and extremely exhausted. The tiredness could have been down to the fact that I could not work for the best part of 2020 and the beginning of 2021 so I was doing overtime to catch up on all those weddings, correcting all of those box dye jobs and having admin overload. I did struggle through "covid isolation" and was starting to nap most days this is how I know I'm having a fair up with my graves disease, the fatigue is immense.

All my blood tests kept returning negative for an overactive thyroid, even though I was highly symptomatic. My resting heart rate was reaching over 125 bpm, and I had a tremor, but according to my blood results, my thyroid was fine. If it wasn't that, what was it? I felt like I was going mad and the doctors didn't believe me. It was only when the night sweats got so bad that my partner woke me up to check that I was ok because he literally rolled over and his arm slipped off me. I felt like I was burning up and my insides were on fire I literally was sleeping with nothing on, no PJs, and no covers during the middle of winter. I started to wonder if I was possibly perimenopausal. It does happen to women of my age it would be rare, but who's to say that it cannot happen to me? Again I rang the doctors I think they are well and truly fed up with me by now, but I spoke to the doctor about my "perimenopause theory" and she finally agreed to recheck the thyroid. My blood test was booked a few weeks later ( nothing happens quickly post Covid). The week before my appointment I had almost every symptom you could get. Insomnia kicked in I barely slept 8 hours over a weekly period. My periods had nearly stopped. I was on fire, my temperature gauge was way off, and the sweats were, well, sweaty! My skin broke out in boils ( my Zinc levels were too low) the skin on my face was dry and peeling off. I had extreme fatigue, but no matter how tired I felt, I couldn't sleep. The heart was going far too fast, it was constantly pumping adrenaline around my body. I couldn't concentrate on paperwork, my head was so fuzzy I couldn't see straight, and I was breathless just doing easy tasks like putting my shoes on or just Doing someone's hair. I knew the Graves Disease and overactive thyroid was back and my levels were just as high as before.

On the day of my blood test, at the beginning of February22, by 6.30 pm that evening I had started my medication. I was put on 40 mg of Carbimazole and 2.5mg of Bisoprolol to reduce the heart rate.

It took 9 months from first asking for a thyroid check in June for it to show up for those blood tests to reveal. I Must have been lurking under the cutoff point, so in theory, I was fine. Personally, I think if someone is highly symptomatic they should be checked and monitored more regularly so that there is no time for their blood levels to go through the roof. we should all be a little in tune with our bodies and know when it's changing. I am hypersensitive so I am lucky my body will tell me when something isn't right.

My graves had spiked and arrived with a vengeance.

I am 8 months in on my Drug therapy I have only had one appointment with my endocrinologist this year and I had to push for an earlier appointment, (May) instead of the August appointment that was originally issued.

By the time my first appointment came around, I had gained 11 lbs in the two months prior, I was even more exhausted than before. I had to sit in the shower, to wash my hair as sometimes I literally couldn't stand and wash my hair at the same time I just didn't have the energy levels to do both.

I would sometimes skip hair wash day altogether and opt for a nap instead, another day of dry shampoo wouldn't hurt!

My periods became heavy and intense and lasted a full 5-6 days, every 3 weeks. The minute I walked into that appointment the first thing he asked was "How do I think you are doing?"

Me: Underactive! No one is testing me enough.

Correct. My blood levels had gone too far the other way, which was why I now had side effects caused by an underactive thyroid.

After my first initial appointment with the specialist, I have been left with more questions than before. I need to figure out what is right for my body regarding ongoing or definite treatment. Can I continue with drug therapy on and off for the rest of my life? Is it even safe to do so for someone under 40? I have been advised to think seriously about radioactive therapy if I want to start a family within the next few years. They have advised me against having my thyroid removed, possibly due to a previous surgery that caused many complications.

Do I finally give up and accept that definite treatment is what I need to do to end this forever?

But will I still be left with graves symptoms, just not the overactive thyroid?

Will it make any difference to how I feel, or will it just change the blood levels?

Will I be able to carry my children safely?

There are many complications with hormone issues and pregnancy.

There are so many questions and so many what-ifs swirling around in my head I really have no idea of what to do for the best.

I can't help but feel in my gut that there must be another way rather than radioactive therapy it seems far too extreme.

I put this disease in remission last time, why can't a diet change work again?

I will do everything I can to change these results as quickly as I can. This has been a year of self care, self love and lots of rest when I am not working.

Who knew this little butterfly in your neck could cause so much upheaval to someone's life?


bottom of page