My Battle With Graves Disease part 11: battle lost, war not over.

As mentioned in my previous blog I started noticing some symptoms related to Graves disease (hard pumping a bit harder, not sleeping to well), but I thought it was more due to stress and a bit of time off would be good. However, having gotten 2 more measurements, the results were not good. As in, Graves disease is rearing it’s ugly head again. The results were not that extreme as previously (see below), but bad enough so that after meeting with the doctor, I started with medication again.

This was a huge setback and very frustrating. Because, why did I put all this effort in eating healthy, especially gluten and cowdairy free, taking supplements, etc… Was it all really a waste of effort? All the money you put into to it and this is the result… Unfortunalty you can’t A/B test yourself, because it might have been worse if I didn’t do all those things.

Another aspect is the COVID-19 vaccination. Before the summer all my bloodvalues were good and seem to get stronger. Then I got my 2 vaccinations during the summer, and a few weeks later i started feeling some symptoms and the bloodvalues have been declining ever since. So is that a direct result? The doctor couldn’t really tell, they just don’t know, but acknowledged that it is a possibility since the vaccine trains the auto-immune system so it could have been a trigger. It could also be stress related, but it’s just too easy to blame something without actually knowing.

I was reluctant to meet with the doctor, not just because of the possible ‘I told you so’ but also because I still don’t want to take iodine treatment which destroyes part of your thyroid through radioactivity. Although it’s overall quite safe, it still feels weird to 1) take a radioactive pill to 2) destroy a good organ, because it’s the auto-immune system that’s acting up, not the thyroid. My hesitancy was supported by this research with the following summary:

Overall, patients with treated Graves’ disease had worse thyroid-related quality of life scores than the general population. Among the three treatment groups, patients who received radioactive iodine therapy had worse thyroid-specific quality of life scores than patients treated with antithyroid drugs or surgery, as measured by ThyPRO. The radioactive iodine therapy group had worse scores for goiter symptoms, hyperthyroid symptoms, tiredness, anxiety, depression, emotional susceptibility, impaired social life, impaired daily life, and impaired sex life than the antithyroid drug and surgery groups. In addition, the radioactive iodine therapy group had worse scores in hypothyroid symptoms, eye symptoms, and appearance than the antithyroid drug group. A similar pattern was found in general quality of life measures as assessed with the SF-36 questionnaire, with worse scores in radioactive iodine therapy group compared to the antithyroid drug or surgery groups.

So not a very attractive thing to look forward to. However, when meeting the doctor things went quite okay. She was understanding, acknowledged the posssibility that the vaccination could have triggered things and again, that they simply don’t know what the cause is of Graves. When I said I don’t want to do the rediation therapy, she explained the potential side-effects of the medication, which are rare (bonemarrow not making enough white bloodcells) and went along with a more extended titration therapy (reducing the amount of medicine to a minimum for a longer time).

She did mention that eventually the thyriod will ware out, sooner than with ‘normal’ people and then you would end up with hypothyroidism, which also requires medicine. But when this happens, differs per person. The radioation therapy ‘simply’ makes this moment come sooner. But for now, it’s taking a higher dose for 2 weeks and after than reduce it and see how my body reacts.

As you can image, a disappointing time and I have to deal with this mentally as well. However, I tend to look on the positive side, without the diet and supplements I think I would be worse off. Because i’m in pretty good shape for a 46 person…if I say so myself.

So I’ll write an update in a few weeks/months about how things went, for now i’m trying to come to terms with what feels like a ‘failure’, but is likely just a genetic pre-disposition to this type of auto-immune disease.

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