My Battle With Graves Disease, Part 4

In my previous blogs [1, 2 and 3] i wrote about my battle from a personal perspective, and also with the idea that it might help some people recognize symptoms and/or have a kindred spirit. This blog is an extension of my journey but focussed more on what i did (and still doing) to fight of the disease. It’s not a ‘you must do this as well’-blog, just a story about what i did and what got me to do it.

The Thyroid Connection

After my second encounter with Graves i was disappointed that my work hadn’t paid of but still believed there were other ways which i hadn’t tried or known about. One book in particulair got me on a new path: Amy Myers’ The Thyroid Connection. Although it’s a typical american style book with lots of marketing, it did lay out a few things regarding the disease and health, and specifically the ‘gut’. The most intriguing aspect was about the health of the microbiome in the gut in combination with molecular mimicry and the relation to auto-immune diseases. Here’s a quote from her book:

There are several other food proteins, such as casein in dairy, that have a similar molecular structure to gluten. Because of this molecular mimicry, when you eat dairy your body can get confused and think you just ate a bowl of pasta and trigger an immune reaction.

So basically gluten can cause a leaky gut which allows foodmolecules into your bloodstream and specifically gluten and casein proteins are similair in sequence to thyriod tissue so your auto-immune system gets fooled and reacts in a wrong way. It’s a theory but i found multiple resources explaining this process so there is something to it. Based on this book and some other resources i wanted to test a few things.

Getting into testmodus

I did the following tests:

  • Do i have Celiac diseas (Coeliakie): negative;
  • Do i have a vitamine B12 deficiency anemia in combination with a problem with the intrinsic factor: negative & negative. I did this one because my B12 measurements always declined after a while. Even the last measurement showed a decline so i’m taking B12 shots every other month again;
  • Do i have any food allergies/intolerance: the result was that i had a ‘medium’ level of intolerance for grains & cowdairy (and black pepper);
  • How is the microbiome in my gut’ by means of a stool-test: the result was pretty bad.

In the meanwhile i also consulted a dietician (who helped me with the food allergy test) and decided to go ‘cold-turkey’ on gluten and dairy, sort of an elimination-diet. And then you find out how many products that stuff is in :-(. Anyways, the idea of that diet is to eliminate any obvious culprits from your diet, see how you react and then after a while, 1 by 1 add types of food you eliminated and see how you react for each added foodtype.

Based on the stool-test she also advised prebiotics and probiotics to support the gut. For prebiotics i took acaciafibers. I started this way of eating and supplementing in april of 2019 and, as of today, have followed it quite strictly (although have downgraded the pre and probiotics in december):

  • make my own lunch during weekdays, usually something with vegetables, rice, sweetpotato, fish (tuna);
  • when i eat at a restaurant i always ask if they support my diet, and most do very well;
  • make my own snacks (e.g. banana or applesauce cake/bread);
  • no more cookies, sweets, chocolate, most chips or anything that you used to nibble on at home or at parties;
  • look for recipies to mix it up like glutenfree pancakes or selfmade pizza;
  • replaced ingredients with glutenfree variants such as pasta (although that was disappointing), couscous and oatmeal.

I’m still trying to vary and look for new things, sometimes it’s a bit hard but overall the transition was quite smooth. I do miss a good pizza or pasta or a croissant (which i had to do without during our last vacation in France) but the number of glutenfree products has increased immensly and, although more expensive, are not too bad.

The Effect

Almost within a week i started noticing a difference, especially in the gut which used to be ‘active’ and noisy. But that (mostly) went away after a short period. I also used to have a mild form of acne on my face and that also (almost) vanished. Another aspect was that i started to get a bit leaner because i lost some bodyfat. I think mostly from not eating dairy products and cookies/chips/etc.. Off to a good start but that still didn’t mean i solved Graves disease, the thing is though, you can never really know untill you die and never had it again.

As measuring is knowing, i wanted to do a few more tests. 1 Test, which my dietician advised, was to check for antibodies TSH receptors. Lots of thyroid-diseases are caused by auto-antibodies. They are created when the immunesystem accidentally sees thyroidcells as ‘alien’ to your body and starts creating antibodies to destroy these cells. So a high count is bad, low count is good. I did take some convincing the endicrinologist, most likely an insurance thing, but she eventually agreed. I took this test on the first of august. As you can see below the 2 measurements before my diet where above the norm, the last measurement was very low which is a good thing.

Now to be clear, you still can’t say with certainty that the diet caused this, but frankly i don’t know what else did. Too bad you can’t A/B-test yourself.

After the summer vacation i also did another stool-test, it showed quite some improvements but not as good as we hoped. So we upped to dosage for pre and probiotics. Unfortunatly these stooltest are not insured and you have to pay for them yourself. They cost about 150 euro, so i’m not eager to do it again but it does give you a good status about the microbiome in your gut.

When starting the diet the idea was to start adding stuff back. The only thing i’ve experimented with was goat-cheese. It’s hard to really blame that product but everytime i took it my gut was ‘off’ a few days. Still have to experiment a bit but gluten and dairyproducts won’t come back anytime soon.

Stopping the Medication

After summer we also decided to stop with the medication. I was on the lowest possible dosage of strumazol and the results were good. In the pictures below you can see my test results for the 2 things they usually test for, TSH and Free T4 (vrij T4). One thing to note is that on 19-10-2018 my free T4 was very low, almost having the effect of a too slow thyroid which is the opposite. To my surpise i was not called by anyone, most likely because it still falls within the 9-25 category, but this was (again) disappointing. I called them myself and based on that i lowered the dosage.

The last 2 measurements were a bit ‘scary’ to me. The free T4 was up 1.3 from the last measurement but still in the middle. The thing that worried me a bit was the TSH which went down significantly and was grazing the lower boundary. The good thing is that both measurements were stable but i’m hoping the next one shows a bit higher TSH value.

Based on the last measurement we agreed that the next measurement will be done in february (2020), so fingers crossed.

Gypsywort

In november and december i didn’t feel too well, i didn’t sleep well and my energy was very low. I also lost a bit of weight (from 99 to 95/6) so i was stressed that Graves was rearing it’s ugly head. But the measurement from end of november was ‘good’ and my weight was sort of steady at 95. It could still be that things were moving a bit too fast but not fast enough for the ‘norm. And that could be a result of my body still adapting to no medication (woman who just a child still feel the effects of hormones up to a year later).

I still wanted to have a chat with the orthomoleculair doctor and get his perspective. His view was is that you have to listen to the patient, if the patients isn’t feeling well then there’s something wrong, even when the results are good (or not bad). Another patient of his for a few years had the same thing i had and was prescribed the same supplements. But what he also added was something called Gypsywort (wolfspoot) which according to some sources can help with thyriod problems and it helped that patient for a few years (or at least kept Graves away). I’m not a big believer in the homeopathic way but nonetheless it seems that some people are helped by it (or at least believe that it helps) and i do believe in the power of (some) plants. So i thought i’d give it a try.

I have been taking it for a week and a half, and it’s hard to tell but i do feel a bit better. But it can also be the extended vacation i’m taking to get some rest from work and time for myself. So the jury is still out on this one.

(Bad) Experience

This journey has been very expensive, i think i have spent about 2500-3500 euros in the last 2 years on supplements, (blood/stool/allergy) tests, visits to non or-partly insured practitioners. Has it been worth it…..i’ll tell you when i’m dead…..at 100 years old 🙂

The experience with the medical world has been disappointing so far. If you break a leg they are the first ones to go to, but if you have something like an auto-immune disease they might help get rid of some lifethreatening symptoms, but actually healing you is out of their league. The seem to be restricted by their education and just follow a protocol and/or insurence related aspect. I’m not saying it’s that way for all doctors and have read stories that also show the opposite but this is my experience. My advice is to be critical and read up on stuff and, you are the patients and it’s your body and life!

What’s next

One thing that i want to do more with is ‘stress’, which can also lead to several (auto-immune) diseases. Things like mindfulness, meditation, even if it’s just 10-15 a few times a week. I’ve tried it a few times the last months and it feels more relaxed afterwards.

Lastly, i have to deal with Graves for the rest of my life. Period. And whatever i do i won’t know if it works. I will know if it doesn’t, what specifically didn’t work then or why….no one can really explain. But i want to keep my thyroid intact. So i will continue to search and measure and in a few months will write about the results.

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