My Battle With Graves Disease, Part 3

In my previous 2 blogs [part 1, part 2], i started writing about my ‘battle’ with graves disease and ended the last one with the hope that i was done, which wasn’t the case. So in the first half of 2018 a few things were a bit off. I had trouble sleeping through the night, workouts didn’t really go well, stressfull at work and in the month before the summervacation a pretty bad situation at work happened. So i was really tired and in need of a vacation. So when vacation was there i thought i could relax for about 3 weeks. The day before my vacation i thought i weigh myself. 98kg (down from 100). Strange but most likely stress and being tired. 2kg isn’t that bad.

But during the holiday things didn’t improve, they actually worsened and quite rapidly. I just wasn’t feeling well, cranky, on edge, no fun to be around. The only thing that gave some aleviation was a nice swim in the ocean. But halfway though i got a stomachflew (or ate something bad as others had it as well) and got that tight, cramped feeling again in my gut. And the last few days my hands started to shake and i was very rushed at everything.

We got a bad feeling and so i weighed myself, 90kg….! That’s a loss of 10 kg in a month. When home i asked for a bloodtest and it usually takes a few days for the result. But the next morning i got a call from the doctor with the (bad) news that graves is back with a FT4 value of 66 (last time it was 38) when it should be between 9 and 25 and i had to start with the strumazol right away. F#$k, all the effort to live a healthy live including food, supplements (which i have to pay for myself) were useless ?!? What a looser! Why didn’t i get it to work 😦

So i had to call work again and tell them i was out of commission. Then a visit to the endicrinologist, same one from last time. A nice person but i was afraid she was going to propose something (see my previous blog) i really didn’t want which i told here straight away. To here credit she was willing to try something but first get all the values down so i had to take medicine for 4-5 weeks.

I thought i could go back to work after my appointment with the endicrinologst and start with half a days work and slowly add more hours. I also made an appointment with the company doctor because it’s good to make this formal. He was very good and understanding and also ‘got it’ (maybe more than i did). He told me to stay home a few weeks and then start with half days work and see how that goes. He explained that your whole hormonal system is out of balance and that’s something to be really carefull with. It was quite a relieve because he took away the (selfimposed) pressure to get back to work quickly.

I also made an appointment with the orthomoleculair doctor to get his perspective and he ordered some bloodwork (and since insurance doesn’t cover this i have to pay for the bloodtests myself). And it showed huge defficiency in zinc, selenium and B12. Magnesium was also not good but already started with a new variant which seemed to take hold. Apparently there’s a wide range of magnesium supplements of which you have to find the right type for you. My D3 levels were excellent, a small comfort. So ordered some more supplements and also got 10 B12 shots because, as he put it, it can be that you don’t have an intrinsic factor (or a bad one) which means that your body can’t get (enough) B12 from food. B12 apparently is very important for lots of things, including for your auto-immune system (here’s a good blog). But he was also honest that he couldn’t tell if this is the cause or result, but now the body is out of balance so let’s see if we can restore that.

Not just physically but also mentally something snapped. I withdrew myself even further, felt like a looser and weak. My wife tells me i’m sick but what about the 2,5 years i was okay? But i started to realize that my mental model of the world was wrong. And that i was actually sick. I have a goal of reaching the age of 100 in a healthy fashion which means you have to take care of yourself. But this requires not just a balanced body but also a balanced mind.

After taking medicine for 5 weeks the thyroid-levels were normal again with a value of 17. I did not want to take the betablockers for the heart, that stuff is nasty and didn’t think it was needed. I’m not saying never take this, sometimes it might be needed, but be very critical. We decided to start titration therapy, which basically means reducing the amount of medicine and see how the body, or in my case the auto-immune system, reacts. I asked if i could take small amounts of strumazol for the rest of my live and although possible, the chances of hormonal swings are possible. More over, due to strumazol the white level bloodcount is reduced which is not beneficial for your immune-system and makes you more receptive for disease, especially at a later age.

So we started reducing the amount of strumazol. But now there is more fear in the back of my head. Is my heart pounding harder? Are my hands shaking? Do i feel stressed or is is something else? Mentally it was (and is) a big struggle and i would not say i was depressed because i still believed that there was more to explore, but i definitly felt down. The good thing was that i could start with crossfit at a very slow pace and also decided to do (power) yoga which felt good. But i knew i had to work on my mental state as well so i took some steps there. I also started to learn and explore other means to combat this disease which i will tell about in my next blog.

Sidenote: one thing that was very peculier is that when i started taking supplements and was never really sick anymore or even had a cold. And when i was a bit under the weather it usually was gone within a day. That’s quite something considering i have kids which were 4 and 6 when this started, so a lot of bacteria from school and daycare. Even when my wife got sick it didn’t affect me. So it’s my ‘believe’ that supplements do help, unfortunatly it doesn’t help with graves specifically. Which supplements help is also difficult to identify.

Supplements i take currently based on bloodwork and symptoms:

  • Magnesium (Taurine) – daily
  • Q10 Enzym – daily
  • Zinc – daily
  • D3 – daily
  • K2 – daily
  • C (1000mg) – daily
  • Selenium – twice a week
  • Iodine – three times a week
  • B12 shots, once every 2 months

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