Hashimoto's symptoms - dietary iodine?

[apprehensiveengineer]

I've been feeling increasingly run-down over the past few months and suspect that I might be developing Hashimoto's. I have an aunt who has both celiac disease and Hashimoto's, who later developed thyroid cancer in her 30s - so I would say that my suspicion is extremely reasonable. Over the years I've had numerous blood tests were my TSH was measured (most recent ~16 months ago), but as I understand it these numbers can still be within the normal range in the early stages of the disease. I have no had any thyroid function tests of any kind since beginning to feel this way however, so it's possible that my TSH might be off too at this point. I'll be headed to the doctor this week to ask for a complete thyroid panel (TSH and antibodies), but I had a question about symptoms that I couldn't find a definitive answer to online.

I've noticed that high iodine foods, in addition to worsening my DH, seem to make me feel acutely "worse" in sytemically. Until this week, I thought I might have been experiencing some trace/mystery glutening, but the more I think about it, I see that in the last few weeks all of the "bad" days I had were ones where I consumed more iodine than usual (chips, milk, fish, salted peanut butter etc.). I suppose it is possible that I am being low-level CC'd, but I have been extraordinarily careful for the past few months with my diet (following the Fasano diet with a few exceptions such as certified chips & nut butters) and kitchen precautions, and it doesn't seem to have made a huge difference.

I am aware that in persons with thyroid disease that excess dietary iodine can cause problems, but couldn't find much on the interaction between this and celiac disease. Since iodine affects those with DH in the absence of thyroid disease, I was wondering if anyone could comment on their experience with this - does iodine make those with DH/but no thyroid problems feel systemically worse, or is this more likely indicative of me having Hashimoto's? This is more for my own curiosity as I think my family history/symptoms/major risk factors are enough that any competent doctor would test me for it (we'll see if my optimism carries though haha).

The main symptoms I have been experiencing during these episodes in order of most to least apparent are: extreme fatigue/muscular weakness (I am an elite distance runner and go from 2hr-long running workouts to barely being able to function in the span of a few days, seemingly at random), difficulty breathing/feeling of something being in my throat, flaring of old DH spots/random hives, GI issues (no D, just weird BMs and some general discomfort). It seems these symptoms will last maybe a day or two and resolve pretty quickly assuming I don't continue consuming high iodine foods. I still however, feel generally run down even on my good days, so I'm talking trending from bleh-to-awful as opposed to good-to-bad. For reference, when I have been glutened definitively, I tend to experience more aggressive GI symptoms and also tend to feel very terrible for at least a week (and get DH lesions that take weeks/months to heal).

Thoughts?

[Victoria1234]

Hi,

just wanted to say that I've researched this before, and unless the ingredient list says iodized salt, the added salt you'd find in peanut butter, processed foods, chips, etc. is not going to be the iodized variety. Fish and cow milk are probably a different matter as it might be naturally occurring. (I've got some suspected thyroid issues myself So I'm always looking at things like this!)

good luck to you!

[apprehensiveengineer]

Hmm... I decided to dig a bit here, since that's a really good point which I hadn't thought about!

I live in Canada and it turns out that here when salt is used as an ingredient there is no requirement to list iodide as a sub-ingredient or specify that the salt is iodized (link to Canada Food Inspection Agency rules Open Original Shared Link). Similar to the US, all of our table salt must contain iodide and this must be a listed ingredient. I use a non-iodized salt for my own cooking, and it is plastered with all sorts of warnings to that effect.

So I guess in my neck of the woods, there's no way of knowing if the salt is iodized unless you call the company to ask. If I had to guess though, I would assume that if the product was made in Canada, the salt is probably iodized because it is so rare to find non-iodized salt here (I live in Vancouver, which is the Canadian epicentre of hippy-dippy alt foods tinfoil hat-ism and had a hard time finding it). I don't eat much processed foods, but those I do consume are all manufactured Canada. So, it is possible that my observed issues with processed foods containing lots of salt could be an iodine issue.

Anyways... hopefully I'll figure it out. Feeling like garbage intermittently is getting real old haha.

[cyclinglady]

Your best bet for a Hashi's diagnosis is getting your thyroid antibodies tested.  Some doctors may treat with a small dose of thyroid replacement, even if TSH, etc. are in normal ranges, but antibodies are above normal.  Even with thyroid replacement, there is no guarantee that you will feel better.  Like any other AI issues, the reason for a flare-up is really unknown, unlike celiac disease where gluten causes the flare-up.  

I hope you figure is out!  In any case, your thyroid should be retested and since you have celiac disease, antibodies should be checked as well.  Get your blood sugar checked too as Diabetes Type 1 is linked to celiac disease as well.  

Oh, you were anemic as well (ferritin 0, hemoglobin 9), back at the beginning of May.  Get that checked as well.  I would not recommend intense running until that is resolved.  Seriously.  Goggle the risks.  

[Victoria1234]

how lazy of those Canadians not to list iodine if added! Lol! I would imagine you are not the first person to want to know. Good detective work!

[apprehensiveengineer]

Thanks cyclinglady, I was hoping you'd respond!

Although I'm hopeful that if it is indeed Hashimoto's that I might feel more like my old self, it's nice to have a realistic perspective on the matter. In distance running there are some notable cases of Olympians with Hashimoto's (see Kara Goucher), but I've also had teammates with the disease who had to quit the sport because they couldn't keep things under control.

I have a cousin who as type I diabetes (same side of the family), so diabetes is definitely on my radar. I once had a blood test (pre-diagnosis) that showed above-normal blood sugar, but I have also read that this can occur in undiagnosed celiacs. I'll be adding that to my laundry list of blood reqs to be sure though

With regard to my anemia issues, I haven't had any since I was 16 (so, 10 years ago). At this time I was undiagnosed and a vegetarian (very bad idea as it turns out!). I feel fairly confident my issue isn't anemia as I used to get my iron checked 3x per year (track team protocol, reviewed by sports med doctor who specializes in endurance athletes), and it was always good even when I was undiagnosed thanks to heavy supplementation/steak eating. My most recent post- gluten-free blood test had me with normal-high ferritin despite not taking any iron supplements (can't recall exact numbers, but the doctor was very shocked/impressed).

I guess my main challenge for now will be to convince a doctor to test me for all these things. For whatever reason, most doctors are convinced that young, fit people cannot have real health problems.

[apprehensiveengineer]

Yeah, not too surprised that this is the way Canada has decided to do things. Canada has what I would describe as a paternalistic "for the greater good" approach to health/medicine/safety regulations, which is sometimes good (bike/motorcycle helmet laws, outright ban on sales of unpasteurized milk) and sometimes frustrating (this scenario).

In a way, I kind of get it - there are a lot of misinformed people out there who get the heebie-jeebies when they see "scary" or "unnatural" words on food labels and assume they're bad to the detriment of their own (or their kids') health. That said this is certainly a pain for anyone who must limit iodine intake for medical reasons. If that turns out to be me, I will be very sad because I really like chips and they are a great emergency food (though some brands have low/no salt versions I guess).

[GFinDC]

Hi AE, I don't know how long you've been gluten-free.  But recovery can take quote a while.  This article has some info on recovery timelines.

Open Original Shared Link

[apprehensiveengineer]

Ok - so bloods have been taken, now I await the results! Luckily the doctor I saw at the walk-in (grad student problems, ugh)  was actually pretty good and I didn't have to fight him, which was a nice change for me. Got my TSH, antibodies, blood glucose, iron and a few other markers on the checklist.

I've been gluten-free for a little over 2 years as an FYI. I was definitely a bit sloppy with CC in my first year (doctor did not offer me advice beyond "do not eat gluten"), but seemed to recover pretty well - felt pretty good after 2-3 months. Over the last 8 months or so, I've been feeling increasingly tired/terrible despite being ultra careful with my diet/CC. At first, I thought I might be mystery glutening myself, but at this point I can't think of how to be more cautious without resorting to some unreasonable bubble boy type situation. This leads me to believe that there might be something else wrong with me - but we'll see.

[Victoria1234]

Bubble girl, you mean!  I'm so jealous of you being in grad school. Those were some of my favorite years ever. How far along are you? And how long did they say your blood work will take?

[apprehensiveengineer]

I learned to drive a hard bargain after 3 years of useless doctors appointments in which I was told I was a hypochondriac/"stressed out student"

Results are in, but all the medical receptionist said was that they were "non-urgent." Hard to say if that means there were no positive findings, or just that whatever they found isn't serious enough to kill me before my follow-up appointment later in the week.

[cyclinglady]

47 minutes ago, apprehensiveengineer said:

I learned to drive a hard bargain after 3 years of useless doctors appointments in which I was told I was a hypochondriac/"stressed out student"

Results are in, but all the medical receptionist said was that they were "non-urgent." Hard to say if that means there were no positive findings, or just that whatever they found isn't serious enough to kill me before my follow-up appointment later in the week.

Keep us posted!  

[Victoria1234]

On 6/21/2017 at 1:06 AM, apprehensiveengineer said:

I learned to drive a hard bargain after 3 years of useless doctors appointments in which I was told I was a hypochondriac/"stressed out student"

Results are in, but all the medical receptionist said was that they were "non-urgent." Hard to say if that means there were no positive findings, or just that whatever they found isn't serious enough to kill me before my follow-up appointment later in the week.

Let us know, please!

[apprehensiveengineer]

Ok... drum roll....

Cyclinglady wins! I am just anemic - ferritin is quite bad (10ng/mL), but hemoglobin still intact. Didn't get a look at the full results (Canada problems - doctors only give you the full print-off if you harass them for it), but everything else was apparently ok. I'll be downloading the full results for my file tomorrow from the lab. Not too worried about this, as I've been much more anemic in the past and managed to recover pretty quickly via supplementation. I'll be back for a second blood test in 6 weeks to check it's worked.

So while this certainly answers the question of why I've been feeling so crappy for the last few months, the iodine thing still remains a bit of a mystery. I have been avoiding large hits of iodine for about a week and will probably keep at it for a few more to see what (if anything) happens. But for now... more steak and liver haha.

[cyclinglady]

2 hours ago, apprehensiveengineer said:

Ok... drum roll....

Cyclinglady wins! I am just anemic - ferritin is quite bad (10ng/mL), but hemoglobin still intact. Didn't get a look at the full results (Canada problems - doctors only give you the full print-off if you harass them for it), but everything else was apparently ok. I'll be downloading the full results for my file tomorrow from the lab. Not too worried about this, as I've been much more anemic in the past and managed to recover pretty quickly via supplementation. I'll be back for a second blood test in 6 weeks to check it's worked.

So while this certainly answers the question of why I've been feeling so crappy for the last few months, the iodine thing still remains a bit of a mystery. I have been avoiding large hits of iodine for about a week and will probably keep at it for a few more to see what (if anything) happens. But for now... more steak and liver haha.

?.  Okay.....but what is the cause for the low ferritin?  A glutening?  When was the last time you had a celiac antibodies test or do you use DH flare-ups as a gauge?  

[apprehensiveengineer]

I'm going to guess the additive effect of a few months of mystery CC glutenings (since resolved), plus heavy training load. The last time I had my antibodies/iron checked in Feb 2016, both were good. Since diagnosis to that point, I'd been taking iron supplements only sporadically, but stopped altogether at that point as my ferritin was quite high (hemochromatosis runs in my family, so some concern about taking too much iron).

Unfortunately, my DH is only speculative - I've seen a dermatologist in an attempt to get it biopsied/prescribed Dapsone, but she was convinced it had to be acne as it "did not look exactly like in her textbook." My protestations that this was because it she was looking at the remains of a rash that I'd picked the heck out of were sadly ignored. I do have a GI appointment coming up in a few weeks though.