What Seems To Have Worked For Me - Personal Stories - Living with Graves Disease

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What Seems To Have Worked For Me

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#1 Allies

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Posted 12 November 2020 - 04:12 PM

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I've been in remission from hyperthyroid Grave's disease without any medication for a little over two years. I still have Grave's though - I've read in at least one paper that this perhaps should be called 'TRAB disease' and I think I understand why. I still have significant levels of overall TRAB, but apparently not an undue amount of the stimulating type that causes 'active' or 'hyperthyroid' Grave's disease. Yeah, "it's complicated" :) - because my thyroid hormone levels are mostly pretty stable it seems likely that I mostly have a balance of the different functional types of TRAB.

So how did I get here? The endocrinologist I saw for a time back in 2015-16 may take some of the credit for creating a situation where long term suppression of TSH was almost inevitable (and this seems to be inexorably linked to the production of TRAB), so basically I am not crediting her with any of the good stuff! Although it's possible that her heavy-handed approach may have supported the development of more blocking than stimulating TRAB in my case (trying to be fair here :) ).

The good stuff really started happening when I found a better doctor who supports lifestyle and dietary interventions, and is not obsessed with TSH. This meant I had to do most of the work for myself - and looking back at the adjustments I made over time it looks pretty daunting. I'll see if I can remember the order in which I tackled this.

If i disregard changes I made in the years prior to diagnosis (a removal of most chemical products from my house and self care products) it went a little something like this (NB: I didn't make all these changes at once, it was a fairly gradual process over about a year for most things)

Reduced added sugar consumption (not wanting to become diabetic and give the endo another crack at potential mismanagement - lost weight and felt a bit better. note - I was overweight at diagnosis)
Removed bread from my diet - quickly followed by removing all grains and then potatoes (basically things that usually cause insulin spikes, lost more weight and felt better still)
Removed most vegetable oils (because of the unnatural and chemical way most are manufactured, because of the high omega 6 to omega 3 ratios and because of the rather silly and probaby incorrect idea that I don't want the phospholipid bilayer of my cells to be made from genetically modified canola oil :) )
Removed most legumes (some concern around the anti-nutrient properties of these)
Removed nightshades (based on pretty anecdotal evidence, but it really seemed to work wonders for my skin :) )
Removed dairy, first for a trial period, but I reacted so badly when I reintroduced it that it really had to go completely. (Dairy-free correlated with a disappearance of seasonal hayfever)
Removed nearly all processed foods (then had to giggle when I heard Robert Lustig's comment "If it's got a label on it, it's a warning label")
Heavily reduced oxalate consumption (I had been eating excessive amounts of these, I'm currently reassessing what oxalate foods might be okay to add back in and at what levels)

In amongst all this I decided that with removing all these things I really needed some form of template to try and ensure I could still get adequate nutrition from what I WAS still eating. I read lots of stuff around diet and became confused. Vegetarian? Vegan? Low carb? Fodmap? Gaps? Keto? Paleo? Carnivore? All had proponents and all seemed to work for some people, so eventually I just went with what felt logical to me (part of my personal criteria is: which diets don't specifically require supplements to make up for shortfalls created by the diet? ). It ends up being rather paleo, wholefood-based and quite similar to one of the Wahls protocol diets - and I've actually found Terry Wahls experience, solution and books to be helpful along the way.


So, anyway stuff got added in

Organ meats (very nutrient dense)
Fermented foods and drinks (for my microbiomes)
Lots and lots of extra vegetables (for the fibre - gut microbiome , but also for the vitamins, minerals, micronutrients, phytochemicals, antioxidants and cofactors)
Nuts and seeds (for zinc, selenium and what appear to be 'good fats')
Coconut based foods (oil, milk, yogurt, kefir, aminos and flour - to replace dairy, vegetable oils, grain based flours and soy sauce)
Focusing on trying to grow or buy organic produce (to avoid nasty chemicals that do goodness knows what!)
Nutritional yeast (for the saccharomyces cerevisiae - microbiome again - and B vitamins)
A focus on trying new foods and aiming for as much variety as possible within these limits I have been working with.

And lastly - and this has been the most tricky - I added in fish and seafood (largely wild-caught or sustainably harvested, and where possible with edible bones for the calcium content)
- It's probably important to emphasise here that I live in an area where soils are low in selenium and iodine, and because I was avoiding eating several foods that supplied iodine I became slightly deficient. Adding iodine rich foods seemed to work okay until I got carried away and overdid it - I'm chalking that down as a learning experience.

Supplements:
Vitamin D3 (as pure as possible) for extra insurance. Mostly during winter and early spring when levels may be depleted due to lack of sun exposure.


While I'm not in what I consider full remission, and there's always the threat of a hyper relapse, or more worrying a decent into hypothyroidism; something in amongst this lot, or a combination of somethings does seem to be working okay to slowly improve things for me - including a gradual reduction in TRAB . Most of these things I will continue with, because although challenging at the start, each is pretty much second nature now, and don't appear to be making matters worse (apart for the brief iodine blip). I'm bound to tweak things a little here and there, and my track record shows I will probably make more mistakes along the way - hopefully things that are easily fixed :)

To be clear though, I do have residual symptoms, some of which might be explained by how angry I still am about my early treatment (a self-inflicted unnecessary stress - get over it girl!) These symptoms could be a result of what my still high TRAB is doing at a cellular level throughout my body, or maybe there's something besides Grave's going on. If that is the case, then perhaps the approach I am already taking might improve that over time too.

I am mostly focused on what I can do myself to reduce the autoimmunity. I acknowledge that ATDs by themselves, properly administered, might have had the same effect (and much faster!) but as far as I can ascertain this was not done in my case - so I've had to take the scenic detour - and it really is the long way around!

Whether similar approaches might work for others is anybody's guess, we are all so different, and other people might do well with a vegan diet, low fodmaps, removing junk food or just by avoiding endocrine disrupting chemicals. I do feel though that some self-experimentation is almost inevitable - unless, unless one can somehow manage to get treatment that is adjusted according to one's actual thyroid hormone levels and NOT TSH

An adendum aka some of the other stuff
Stopped drinking alcohol ( vary rarely I might have a glass of wine)
Improved sleep hygeine (giving up alcohol actually helped with this)
Stopped using the microwave (no particular conviction that it's either good or bad, just it becomes somewhat unnecessary when not being used to cook ready meals or microwave popcorn or somesuch and I never had sucess using it to thaw frozen foods anyway)
I slowly switched over to mostly glass containers and stainless steel cookware
Some brief encounters with a psychologist that may have ended up being helpful, but she retired

I haven't started wearing a tin foil hat yet :D but basically in this n=1 experiment almost anything goes and is fair game for experimental purposes.

So that's been my approach, a somewhat qualified success- and a work in progress:)


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#2 mmztcass

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Posted 12 November 2020 - 06:15 PM

Allies:

 

This is really good.  Thanks for putting your story up!

 

I know it would be wise to do my story.  Since I am currently 9 month post ATD (antithyroid drug) I need to see where I am going with this and for the things I have done so far from my end to have made remission possible.

 

I will post a bit further down the road.

 

{{{hugs}}} 



#3 Allies

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Posted 13 November 2020 - 12:39 AM

I was waiting till I was in what I consider 'proper' remission to post something here, but realised that just being in remission from hyperactive Grave's with a TRAB that has been moving in the right direction for some time, albeit slowly, is a success story. Or at least a good chunk of a continuing story with some success in it :)

Considering I was not in the least considered a good candidate for remission, and had quite high thyroid hormones at the outset, and that they were a bit stubborn at first, I think I'm doing okay :)

The other reason I was hesitant to post is the sheer number of things I changed - as a person new to autoimmunity I would find all that scary. In fact I recall reading protocols that were similar early on and thinking "I could never do all that!" - only one day I looked back and realised I WAS doing "all that".

Oddly with all these self-imposed 'restrictions' I actually eat a far wider range of foods now than I ever did before, now I'm wondering what else I can try? (Tiger nuts this week :D )

{{{Hugs}}}





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