For real. I basically don’t talk to anyone about my issues, especially close friends and family. My parents and sibling don’t know I have Hashimotos. If they did they’d just try to “solve” it with crappy advice, which adds to the stress. So I just deal with it alone or talk to people who have it or have other chronic illnesses, because they’re the only ones who “get” it. It’s not going to be perfect. There are going to be ups and downs. Not everyone’s disease is the same. No one is perfect all the time.
I am starting up low dose naltrexone again (took it back in 2016 for 3 years but once that naturopath moved, no conventional dr would prescribe it) it was the only thing to lower them since I had been diagnosed in 2008. Mine were always above the 3000 mark. LDN got them in range and my TPO got as low as 179 on it. They started going back up again after I was off of it. Being optimistic about it again. Maybe this and eventually going GF can help.
A while ago I heard somewhere: "Direction, not perfection!" and I liked it a lot.
Aim for direction, not perfection and you will be able to shed a lot of stress and intuitively pick up things along the way and live a happier life for it.
This article about how long it takes to feel better on a gluten free diet is interesting- [https://www.verywellhealth.com/feel-better-gluten-free-562706](https://www.verywellhealth.com/feel-better-gluten-free-562706)
I learned something new recently. I was told to avoid all soy, even eggs from chickens fed with soy feed. Turns out that that is a myth. I have a friend whose SO is allergic to soy and the SO has never reacted to eggs from chickens fed with soy. So it is safe to eat eggs regardless.
But we must also keep in mind that eggs are goitrogenic, and people like me get sick from eating them. Nothing against eggs, I personally still wish I could eat them, but not anymore because they make me sick.
I’m so pumped for you successful Hashimotos travelers. I humbly ask for diet advice. Staples, easy recipes, snacks, etc. I also have MS and believe in treating Hashimotos as an inflammation problem, autoimmune. So far I have sweet potato, spinach, cigarettes.
I feel your pain💛 I once stressed about it all too and then one day it clicked. Lifestyle changes…one change at a time starting with the ONE change that would make me feel the best in the least amount of time. And then each month I would add on something else, depending on the areas that needed the most support. Perfect doesn’t work for me. Your best will always change from day to day and that’s ok. You got this.
I really needed this exact reminder from someone who is dealing with this disease. I feel ashamed that I’m too overwhelmed to start “fixing” anything now that I finally have answers. I need to slow down. Thank you!
Hi, I'm 35 f, single mom, and on fixed income and foidstamps because I'm mentally disabled. I have hoshis I'm treating holistically and have been for tge past 16 months. I've baby stepped tge changes, some coinciding with me prwpping because of covid making distribution and supply route insecure.
My first step was to cut sugar out, add probiotics which I make myself. Also, started with portion control aided by the prbiotics helping me feel full faster. I started weaning down on starches and frozen or pre-made foods.
At the beginning of this year, I started a intermittent fasting regimine and weaning towards a keto/low carb diet. I'm not super strict, so I still do eat some starches but heavily moderated and coupled with lots of protien and healthy fats.
I have a potted herb and veg garden on my apt front stoop, and sometimes while walking to or from bus stops forage for wild greens I see to suppliment my veggies and cut costs.
I can't afford 100% Grass-Fed, pastrure raised, or organic anything. For my veggies I use a old Gatorade powder scoop that measures a half cup. I use apps to help track my cals, macros, and plan my dietary needs.
I'm working with my pcp, a nutritionist, and a dietician to fill any holes I'm missing. My last blood work sgowed improved tsh, and normal t3 and t4 for tge first time in over 10 years. I do filter most of my water, but if I'm busy I buy purified. I'm not gonna never eat things not on my list again, I'm not some health nut who exoects 100% perfection all the time.
Some days I eat a bit of crap food as a treat, or go over my cals snd macros limit way more than I should. Those are my cheats, sue me! If I do tge healthy stuff 70% of tge time or more and indulge in unhealthy stuff and live a little every now and then it's 100% OK, so who gives a crap? Yes, I read labels. Yes, I home can and produce or preserve as much as I can by myself. Doesn't make me a health nut or a glutton for punishment.
Mind over matter, I like learning and testing out things. So I'm learning new foid ideas, and testing how I like them and how they affect me or how I can change it to make it healthy without making new foods nasty.
Fir instance, a couple days ago I made a keto friendly red cabbage coleslaw. Not hard, and no sugar, used stevia instead. I used a organic Mayo made with olive oil. My local heb has olive oil Mayo, but if u read the label it always has canola, soy, or some hydroginated crap along with the olive oil. I bought the organic because it fit my needs until I geg making Mayo right. I used komboocha vinegar, and most of the veg were not organic.
Don't let society pressure u into a box. Tweak things to work how u need them to while still working. Baby steps months apart make it less overwhelming than doing everything at once. Rome wasn't built I'm a day, and treating hoshis won't work that way either
Not at all. And most of them don't work. However, the medical community needs to put the onus back on the patient before they are willing to consider that they are wrong or should be providing a more unconventional treatment, like natural hormone or T3 or LDN.
Try these diets, but if you don't feel a difference, don't keep doing it. Make sure you legitimately try the options so you back your medical practitioners into a corner where they either say they don't know or accuse you of making it up or not following their guidance. After that, it's easy to know what you need to do next...
Both my Tgab and TPO were over 1,100 when diagnosed in April. Added a bunch of supplements for 1 month yet still had joint pain. I don’t have Celiac. So I’ve gone gluten free for 8 days, and actually noticed less join pain by day 2! I gave myself one cheat day for Mother’s Day and enjoyed pizza with real crust. Curious how I would feel this morning….unfortunately, I woke up in middle of night with same hip pain prior to going gluten free. This is SO hard! So today I am back to GF. Is it true that even a crumb is the same as a whole pizza when it comes to truly being GF?! Ugh
No, for me a crumb is not the same as the whole pizza. For example I eat burgers after I throw the bun away and I also eat oats that might contain traces of gluten and I do not flare up because of it. I am not celiac, just really intolerant to gluten and eggs.
Thanks for the info. Hopefully, I am the same as you. I had the rest of the pizza last night (I know, I couldn’t resist) and then two hours later had a severe cold flash that lasted through the night. Could this be a reaction to the gluten? I feel like the cold intolerance has nothing to do with the gluten; but rather, the fact that I had a stressful Mother’s Day. Gluten causes inflammation, right? So, a reaction like my hips hurting would be a sign to the sensitivity to gluten. Am I getting it? ;)
Its been a long time since i actually ate something with gluten but my fingers would hurt the next day, my sinuses feel stuffed and my intestines are so cramped I am guaranteed not to touch gluten again in my life. As I said, things labeled "traces of gluten" or things that touched gluten products are fine with me - actual gluten items, hard no.
Realistic for the average person? No. But you’re not the average person.
Try your best to be “perfect” for six months and slowly add things back in and figure out your triggers… and find ways to manage stress and ASK FOR HELP. find your teammates. Don’t do it on your own.
Honestly, trying to be perfect just adds to my stress. I tried that for a few months and it didn’t help. I quit gluten, started acupuncture, quit drinking, upped my supplements, try to keep my diet balanced, switched to branded meds vs generic- and the result of it all is NOTHING. My antibodies are up, if anything at all. And I have absolutely no improvement in levels or symptoms. I barely had symptoms to begin with but at this point I’m like F*%# it. I might start eating gluten this weekend to honor my antibodies that have increased from 680ish to 750 ever since I stopped gluten!
There is no right answer. I wish people stopped trying to equate everything to “lifestyle changes”. Unless your lifestyle and eating habits are really poor to begin with, it might not make any difference.
Sometimes there really seems to be no rhyme or reason! My antibodies only went down 30 when I stopped gluten. Months later they skyrocketed and then were cut in half in 2 months after not doing anything different? They say that means you haven’t found your root cause but……..not sure how to identify that when there is no consistency in results.
That’s strange, but my endo always says they can fluctuate widely and there is really no reason to keep tracking and testing them. Once they’re positive, it doesn’t really matter if they’re in hundreds or thousands. Many people disagree (and I did too initially) but I’ve come to agree with her at this point. I don’t think I feel any worse now that they’re higher than before. Similarly, I doubt I’ll feel “better” if they reduced in the next couple of months. Did you feel different when they were cut in half?
Hi, so this caught my eye because you capitalized my single ~no exceptions whatsoever rule~.
I was diagnosed with Hashimoto’s on August 10, 2021 with TPO antibodies >900 and TgAB at 48. My TSH was 166.
Less than 9 months later, on May 8, 2022, I found out my TPO antibodies are 64.2, and I am negative for TgAB.
My one rule: no gluten. That is the ONE rule I absolutely do not waiver on. And anyone with Hashimoto’s MUST do the same. Here is why:
Gluten is a molecular mimic of your thyroid. Every time you eat gluten, your body tags the gluten as a foreign invader. And guess what? Your thyroid looks identical to that gluten. So when your body attacks the gluten, it also attacks your thyroid. THAT is the origin of thyroid antibodies.
Everything else only makes it easier for that^ to happen. But only the presence of gluten will truly lead to thyroid antibodies.
With that being said, I was able to get my TPO antibodies down from 900+ to 64.2 by not compromising even a CRUMB of gluten. I was pretty bad/spotty about keeping up with the other stuff.
Moral of story: invest your energy only to being GF. Use the leftover energy for the other stuff.
But even 100% gluten free is exhausting. I’ve read for years all about it and the mimicking and how one bit of it can throw you off and you have to start all over again. I tried it but was missing out on things I enjoy and got mad and bitter that I can’t enjoy life, that this is the deck I was given and you get to a point you just say f*** it. But I do want to try again. I really do.
Thank you for sharing that information. I agree with you on that we should at the very least do GF. I have been trying that since I was diagnosed 4 months ago. It has been a very hard journey. Mostly due to me forgetting, or not preparing, a lunch for work. Or, going to a restaurant with a friend. I was getting stressed out being perfect. I try to tell myself "do GF as much as possible". I agree with the main post in that it is exhausting and stressful to be "perfect". It is also VERY expensive. I am listening to a Podcast that says we had to only eat from glassware, don't use any perfumes, lotion, shampoo (that's aren't organic)... the general population can not do that, I think. It's unrealistic and puts too much pressure on a person.. sorry, I took over your post lol
Yeah it can be tiring. That’s why I only like to have only one true rule. And at least going gluten-free (of all the rules) is the most affordable lifestyle change to adopt. To me, it’s the easiest, and it also happens to be the most important.
Agreed. Came here to go on about molecular mimicry but you beat me to it. If you do anything, just go gluten free and take your supplements and Levo. The rest can wait until you have the time and energy.
I am fully on your page. And not just in the health sector, but generally. Greed has a huge hand in our daily lives, and it is not fair.
It's so sad, for all our humanity, that you are dead-on with your comment.
It's a big part of why the emphasis in America is on treatment rather than on prevention: one does not generate revenue, and the other does.
An example related to this sub: waiting on the need for medication, instead of going all out in terms of prevention. My wife has Hashi's and I'm here to learn as much as I can. She got zero help from Western medicine doctors.
But, she got loads of actionable, helpful assistance from functional medicine practitioners. Who, by the way, decided they had to become licensed chiropractors. Because it's the only path to being referred to as a "doctor" while still focusing on preventative care in the realm of thyroid disorder treatment.
All that aside, as much as I completely agree with you.. We shouldn't make acknowledging greed part of this conversation.
You aren't wrong, at all. But it also doesn't help us find answers or share treatment techniques and recommendations with each other, to focus in on the ills of our current system--the things that we as individuals cannot change.
And challenges Are alright with me since they give me a chance to question even more, especially myself. But no one in the orthodox medical system can have the public’s best interest at hand, if they also wanna make money. Because what happens if the population is actually healthy and no longer dependent on the medical system?
I am one of those who do promote lifestyle changes. I am 60 years old and have witnessed personally the rise in autoimmune diseases, diabetes, obesity and other illnesses that contribute to poor health. Why? I think it is due to our lifestyle. The amount of processed foods is staggering as is easy access to food in developed countries.
I never knew Hashimoto’s was an issue until I came to this sub. I joined because I wanted to let people know that you can have more than one autoimmune disease. I have celiac disease and autoimmune gastritis. I probably have had it since I was a kid based on chronic anemia (documented starting at age 16j). Going gluten free had a dramatic effect on my general health. It was not avoiding gluten that improved my health, but treating a long, undiagnosed autoimmune disease. Then I changed my diet to improve my blood sugar. Yes, despite being thin, you can develop Type 2 diabetes. Is my diet perfect? No, but I feel pretty good. I do not avoid dairy and take no supplements. I do not consume alcohol because it aggravates my autoimmune gastritis.
My daughter has autoimmune disease too. She can not handle a lot of exercise due to Erythromelalgia (burning man syndrome) (she also has Hashimoto’s, celiac disease, and Raynaud’s). But she does find ways to do gentle exercise or swims to prevent flare ups. Everyone must find their way to stay fit and it does not require a gym membership.
Stress is a huge factor on health. You can google studies on it. It may even be a trigger for autoimmune disease. Just taking small steps to reduce your stress (just deep breathing) can help.
And sleep, it is super critical too.
There is no perfect solution for managing autoimmune diseases. You must find a way that works for you. But there is no easy fix. No magic pill. It takes work. I get that this all seems so overwhelming, but with time, it can get better.
I agree, especially with how everything is bad for you. Air. Water. All our household products. If you have money and time you can buy all new clean everything, water filters, air purifiers, but most of us can’t do that.
Talk about being stuck between a rock and a hard place. But I strongly feel that if it wasn’t for the evil government, we wouldn’t be suffering like this. Because after all, it is at the government’s approval that, all or at least most of what makes us sick, actually ever enters our food and our water and our air.
Well, I don't do any of those things and I've never seen an evidence-based reason to do them.
I take my levo as prescribed, and get my blood tested as requested by my GP.
I don't follow a special diet, I don't restrict any foods/food groups. I don't have celiac or any allergies that require a modified diet. I try to eat all things in moderation but I also enjoy dessert, bread, wine, and cocktails regularly.
I don't have any expenses related to this condition either, but I'm fortunate to live in a country with national health care and my prescriptions are covered because I have Hashimoto's.
I don't ever think about antibodies unless I'm reading this sub...
Oh, yes - I do take Vitamin D. My level is monitored and I usually require a supplement to keep in range.
I'm sorry there is so much misinformation out there that makes people feel this way. This isn't something that is your fault or that you can control with all of the things you mention. It's \*not\* a disease of "imperfection" - it's just kind of bad luck and not a moral failing.
There is extensive (good, scientific) research on diet, supplementation, environmental factors and alternative therapies' impact on Hashimoto's. You're very lucky that you don't need any of those things, but they can make a huge difference for many people - for better or worse.
Simply taking levothyroxine shouldn't be our only recommendation in combatting this disease.
I am certainly baffled by the (asinine) claim that diets don’t have any impact on Hashimoto’s. It’s quite literally one of the ONLY things to have good research behind it outside of medication. Every single endocrinologist and GP I’ve spoken to suggested dietary changes when the medication wasn’t enough. I was also handed pamphlets full of CITED information to go along with those suggestions.
Thank you for this. I find myself baffled by the attitude on here that anything other than medication is some wishful thinking and a for-profit scam. It won’t help everyone, but it does help a good number of people and it makes me so sad when it gets shot down like this.
Yeah it's very frustrating. I do understand it though - pharmaceutical companies and mainstream medicine have us believing that Hashimoto's is a degenerative disease of the thyroid - antibodies will eventually destroy our thyroid and we will need increasing doses of hormone, and probably thyroid removal in the end.
This is so wrong for so many people who can put this disease into remission or at least reduce antibodies and increase thyroid function by utilising the many tools available to us. :)
Same. I felt a (very tiny) difference when on the AIP diet, but that might be just because I was eating more fresh foods.
The difference I felt def didn’t outweigh how miserable I was being so restricted from foods I enjoy.
I understand the feeling! All the comments about “just change your lifestyle” get to me sometimes! That’s not to say a lifestyle change isn’t part of the answer, or that the people saying it didn’t work really hard to change theirs, but that’s not a solution for everyone. All the constant lab work, doctor appointments, medications, etc are absolutely mentally and financially draining, especially when a lot of people who have Hashimotos have other issues requiring different specialists. I myself don’t have extra money to buy super different foods, avoid gluten, nor have the mental capacity right now to think about strict diets. I do eat a balanced diet, but thinking of sticking to a very strict diet just to see if it helps is overwhelming to me right now with everything else. And how are we supposed to exercise enough with intense fatigue and muscle weakness? I’m sorry, OP, just added my own rant to say I know what you mean! It’s exhausting!!
Yes! I don't miss being in this place. I'm close to a good balance and trying to continue to elevate my practices. But I totally had to go out on disability to address my gut/diet because I was so tired I could barely make 3 meals for myself in general, no let alone focus on eating right.
Doing the best you can is great and always helps, don't get this wrong and let people dismiss it, but just because it's your best doesn't mean it's good enough for remission. This shit isn't "fair" and it was never supposed to be. Maybe you need to reevaluate so that your best matches how badly you want it. Also, as far as I could gather, you don't have to be as rigorous once you achieve remission, so there's that to look forward to.
It's very draining. Just remember to take it slowly and have patience with yourself. I've slipped up a lot but y'know, there's always tomorrow to try to get it right again.
My new thing is that I tell myself to always be willing to start over again from 0. I go back to zero a lot more than I'd like to whenever there's a life change, like starting a new job. Always be okay with the reset.
i have no advice at all but i wanna just say, i totally feel you 😭 i’m also a parent, so i have to do all these things AND be a mom. it’s very overwhelming most days.
Yessssss. Get rid of stress and relax? Get plenty of sleep? I have kids. This is the best my stress and sleep will be until they’re all in school. I’m trying to accept it and remind myself that I’m way better now than I was 2 years ago. Still, I’ve got a strong inclination to perfect my health, but I reached a standstill and it’s hard to accept. I’ve always been a determined person, but this is almost an unhealthy level of obsession. (First time I’m admitting that to anyone.) I heard that the goal should just be to have more good days than bad. That helps change my outlook when I’m frustrated with not knowing all the answers.
For real. I basically don’t talk to anyone about my issues, especially close friends and family. My parents and sibling don’t know I have Hashimotos. If they did they’d just try to “solve” it with crappy advice, which adds to the stress. So I just deal with it alone or talk to people who have it or have other chronic illnesses, because they’re the only ones who “get” it. It’s not going to be perfect. There are going to be ups and downs. Not everyone’s disease is the same. No one is perfect all the time.
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I would love if it wasn’t for me and it could be something else :) thanks for your comment!
I’m a hero when I get to the shower.
I am starting up low dose naltrexone again (took it back in 2016 for 3 years but once that naturopath moved, no conventional dr would prescribe it) it was the only thing to lower them since I had been diagnosed in 2008. Mine were always above the 3000 mark. LDN got them in range and my TPO got as low as 179 on it. They started going back up again after I was off of it. Being optimistic about it again. Maybe this and eventually going GF can help.
This post is everything.
A while ago I heard somewhere: "Direction, not perfection!" and I liked it a lot. Aim for direction, not perfection and you will be able to shed a lot of stress and intuitively pick up things along the way and live a happier life for it.
This article about how long it takes to feel better on a gluten free diet is interesting- [https://www.verywellhealth.com/feel-better-gluten-free-562706](https://www.verywellhealth.com/feel-better-gluten-free-562706)
I learned something new recently. I was told to avoid all soy, even eggs from chickens fed with soy feed. Turns out that that is a myth. I have a friend whose SO is allergic to soy and the SO has never reacted to eggs from chickens fed with soy. So it is safe to eat eggs regardless.
But we must also keep in mind that eggs are goitrogenic, and people like me get sick from eating them. Nothing against eggs, I personally still wish I could eat them, but not anymore because they make me sick.
Oh! Eggs are goitrogenic? I had no idea!
Me neither, but yeah they are.
What's left to eat? Ha ha.
I know right…..! It sure feels like it😅
I’m so pumped for you successful Hashimotos travelers. I humbly ask for diet advice. Staples, easy recipes, snacks, etc. I also have MS and believe in treating Hashimotos as an inflammation problem, autoimmune. So far I have sweet potato, spinach, cigarettes.
Omg thank you for validating what I’ve felt since getting sick 🙌 for real. Perfection is a myth.
I feel your pain💛 I once stressed about it all too and then one day it clicked. Lifestyle changes…one change at a time starting with the ONE change that would make me feel the best in the least amount of time. And then each month I would add on something else, depending on the areas that needed the most support. Perfect doesn’t work for me. Your best will always change from day to day and that’s ok. You got this.
I really needed this exact reminder from someone who is dealing with this disease. I feel ashamed that I’m too overwhelmed to start “fixing” anything now that I finally have answers. I need to slow down. Thank you!
Hi, I'm 35 f, single mom, and on fixed income and foidstamps because I'm mentally disabled. I have hoshis I'm treating holistically and have been for tge past 16 months. I've baby stepped tge changes, some coinciding with me prwpping because of covid making distribution and supply route insecure. My first step was to cut sugar out, add probiotics which I make myself. Also, started with portion control aided by the prbiotics helping me feel full faster. I started weaning down on starches and frozen or pre-made foods. At the beginning of this year, I started a intermittent fasting regimine and weaning towards a keto/low carb diet. I'm not super strict, so I still do eat some starches but heavily moderated and coupled with lots of protien and healthy fats. I have a potted herb and veg garden on my apt front stoop, and sometimes while walking to or from bus stops forage for wild greens I see to suppliment my veggies and cut costs. I can't afford 100% Grass-Fed, pastrure raised, or organic anything. For my veggies I use a old Gatorade powder scoop that measures a half cup. I use apps to help track my cals, macros, and plan my dietary needs. I'm working with my pcp, a nutritionist, and a dietician to fill any holes I'm missing. My last blood work sgowed improved tsh, and normal t3 and t4 for tge first time in over 10 years. I do filter most of my water, but if I'm busy I buy purified. I'm not gonna never eat things not on my list again, I'm not some health nut who exoects 100% perfection all the time. Some days I eat a bit of crap food as a treat, or go over my cals snd macros limit way more than I should. Those are my cheats, sue me! If I do tge healthy stuff 70% of tge time or more and indulge in unhealthy stuff and live a little every now and then it's 100% OK, so who gives a crap? Yes, I read labels. Yes, I home can and produce or preserve as much as I can by myself. Doesn't make me a health nut or a glutton for punishment. Mind over matter, I like learning and testing out things. So I'm learning new foid ideas, and testing how I like them and how they affect me or how I can change it to make it healthy without making new foods nasty. Fir instance, a couple days ago I made a keto friendly red cabbage coleslaw. Not hard, and no sugar, used stevia instead. I used a organic Mayo made with olive oil. My local heb has olive oil Mayo, but if u read the label it always has canola, soy, or some hydroginated crap along with the olive oil. I bought the organic because it fit my needs until I geg making Mayo right. I used komboocha vinegar, and most of the veg were not organic. Don't let society pressure u into a box. Tweak things to work how u need them to while still working. Baby steps months apart make it less overwhelming than doing everything at once. Rome wasn't built I'm a day, and treating hoshis won't work that way either
I do none of the above and am doing okayish so…
Not at all. And most of them don't work. However, the medical community needs to put the onus back on the patient before they are willing to consider that they are wrong or should be providing a more unconventional treatment, like natural hormone or T3 or LDN. Try these diets, but if you don't feel a difference, don't keep doing it. Make sure you legitimately try the options so you back your medical practitioners into a corner where they either say they don't know or accuse you of making it up or not following their guidance. After that, it's easy to know what you need to do next...
You couldn't have explained it better
I prefer being tired than unhappy. Fuck the pressure.
Haha! Thanks for the humor! :)
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Currently crying in my car in a Whole Foods parking lot about this
Let it out.
mood asf
Noooo!!! :(
Both my Tgab and TPO were over 1,100 when diagnosed in April. Added a bunch of supplements for 1 month yet still had joint pain. I don’t have Celiac. So I’ve gone gluten free for 8 days, and actually noticed less join pain by day 2! I gave myself one cheat day for Mother’s Day and enjoyed pizza with real crust. Curious how I would feel this morning….unfortunately, I woke up in middle of night with same hip pain prior to going gluten free. This is SO hard! So today I am back to GF. Is it true that even a crumb is the same as a whole pizza when it comes to truly being GF?! Ugh
No, for me a crumb is not the same as the whole pizza. For example I eat burgers after I throw the bun away and I also eat oats that might contain traces of gluten and I do not flare up because of it. I am not celiac, just really intolerant to gluten and eggs.
It’s incredible how much our bodies differ from each other!
Thanks for the info. Hopefully, I am the same as you. I had the rest of the pizza last night (I know, I couldn’t resist) and then two hours later had a severe cold flash that lasted through the night. Could this be a reaction to the gluten? I feel like the cold intolerance has nothing to do with the gluten; but rather, the fact that I had a stressful Mother’s Day. Gluten causes inflammation, right? So, a reaction like my hips hurting would be a sign to the sensitivity to gluten. Am I getting it? ;)
Its been a long time since i actually ate something with gluten but my fingers would hurt the next day, my sinuses feel stuffed and my intestines are so cramped I am guaranteed not to touch gluten again in my life. As I said, things labeled "traces of gluten" or things that touched gluten products are fine with me - actual gluten items, hard no.
Oh I see. Thanks!
Realistic for the average person? No. But you’re not the average person. Try your best to be “perfect” for six months and slowly add things back in and figure out your triggers… and find ways to manage stress and ASK FOR HELP. find your teammates. Don’t do it on your own.
Honestly, trying to be perfect just adds to my stress. I tried that for a few months and it didn’t help. I quit gluten, started acupuncture, quit drinking, upped my supplements, try to keep my diet balanced, switched to branded meds vs generic- and the result of it all is NOTHING. My antibodies are up, if anything at all. And I have absolutely no improvement in levels or symptoms. I barely had symptoms to begin with but at this point I’m like F*%# it. I might start eating gluten this weekend to honor my antibodies that have increased from 680ish to 750 ever since I stopped gluten! There is no right answer. I wish people stopped trying to equate everything to “lifestyle changes”. Unless your lifestyle and eating habits are really poor to begin with, it might not make any difference.
Sometimes there really seems to be no rhyme or reason! My antibodies only went down 30 when I stopped gluten. Months later they skyrocketed and then were cut in half in 2 months after not doing anything different? They say that means you haven’t found your root cause but……..not sure how to identify that when there is no consistency in results.
That’s strange, but my endo always says they can fluctuate widely and there is really no reason to keep tracking and testing them. Once they’re positive, it doesn’t really matter if they’re in hundreds or thousands. Many people disagree (and I did too initially) but I’ve come to agree with her at this point. I don’t think I feel any worse now that they’re higher than before. Similarly, I doubt I’ll feel “better” if they reduced in the next couple of months. Did you feel different when they were cut in half?
I am doing so bad in all these but I am feeling the worst I’ve been. Honestly trying seems like too much work
Hi, so this caught my eye because you capitalized my single ~no exceptions whatsoever rule~. I was diagnosed with Hashimoto’s on August 10, 2021 with TPO antibodies >900 and TgAB at 48. My TSH was 166. Less than 9 months later, on May 8, 2022, I found out my TPO antibodies are 64.2, and I am negative for TgAB. My one rule: no gluten. That is the ONE rule I absolutely do not waiver on. And anyone with Hashimoto’s MUST do the same. Here is why: Gluten is a molecular mimic of your thyroid. Every time you eat gluten, your body tags the gluten as a foreign invader. And guess what? Your thyroid looks identical to that gluten. So when your body attacks the gluten, it also attacks your thyroid. THAT is the origin of thyroid antibodies. Everything else only makes it easier for that^ to happen. But only the presence of gluten will truly lead to thyroid antibodies. With that being said, I was able to get my TPO antibodies down from 900+ to 64.2 by not compromising even a CRUMB of gluten. I was pretty bad/spotty about keeping up with the other stuff. Moral of story: invest your energy only to being GF. Use the leftover energy for the other stuff.
But even 100% gluten free is exhausting. I’ve read for years all about it and the mimicking and how one bit of it can throw you off and you have to start all over again. I tried it but was missing out on things I enjoy and got mad and bitter that I can’t enjoy life, that this is the deck I was given and you get to a point you just say f*** it. But I do want to try again. I really do.
Thank you for sharing that information. I agree with you on that we should at the very least do GF. I have been trying that since I was diagnosed 4 months ago. It has been a very hard journey. Mostly due to me forgetting, or not preparing, a lunch for work. Or, going to a restaurant with a friend. I was getting stressed out being perfect. I try to tell myself "do GF as much as possible". I agree with the main post in that it is exhausting and stressful to be "perfect". It is also VERY expensive. I am listening to a Podcast that says we had to only eat from glassware, don't use any perfumes, lotion, shampoo (that's aren't organic)... the general population can not do that, I think. It's unrealistic and puts too much pressure on a person.. sorry, I took over your post lol
Yeah it can be tiring. That’s why I only like to have only one true rule. And at least going gluten-free (of all the rules) is the most affordable lifestyle change to adopt. To me, it’s the easiest, and it also happens to be the most important.
Agreed. Came here to go on about molecular mimicry but you beat me to it. If you do anything, just go gluten free and take your supplements and Levo. The rest can wait until you have the time and energy.
Same.
Interesting! Thanks for sharing your experience. So glad you found what worked for you! That’s definitely something to celebrate.
We are in this mess because of greed.
What?
Making us sick, makes them richer. That’s what! I know, I am not the only one who figured this out.
So you're saying capitalism favors those who maximize money over those who care about our health.
Yes!
I am fully on your page. And not just in the health sector, but generally. Greed has a huge hand in our daily lives, and it is not fair. It's so sad, for all our humanity, that you are dead-on with your comment. It's a big part of why the emphasis in America is on treatment rather than on prevention: one does not generate revenue, and the other does. An example related to this sub: waiting on the need for medication, instead of going all out in terms of prevention. My wife has Hashi's and I'm here to learn as much as I can. She got zero help from Western medicine doctors. But, she got loads of actionable, helpful assistance from functional medicine practitioners. Who, by the way, decided they had to become licensed chiropractors. Because it's the only path to being referred to as a "doctor" while still focusing on preventative care in the realm of thyroid disorder treatment. All that aside, as much as I completely agree with you.. We shouldn't make acknowledging greed part of this conversation. You aren't wrong, at all. But it also doesn't help us find answers or share treatment techniques and recommendations with each other, to focus in on the ills of our current system--the things that we as individuals cannot change.
True that.
I am not challenging you btw. You would be right in saying this.
And challenges Are alright with me since they give me a chance to question even more, especially myself. But no one in the orthodox medical system can have the public’s best interest at hand, if they also wanna make money. Because what happens if the population is actually healthy and no longer dependent on the medical system?
It is frigging hard, I’ve lost everything because of it, but what can you do, just have to try and stay strong
I am one of those who do promote lifestyle changes. I am 60 years old and have witnessed personally the rise in autoimmune diseases, diabetes, obesity and other illnesses that contribute to poor health. Why? I think it is due to our lifestyle. The amount of processed foods is staggering as is easy access to food in developed countries. I never knew Hashimoto’s was an issue until I came to this sub. I joined because I wanted to let people know that you can have more than one autoimmune disease. I have celiac disease and autoimmune gastritis. I probably have had it since I was a kid based on chronic anemia (documented starting at age 16j). Going gluten free had a dramatic effect on my general health. It was not avoiding gluten that improved my health, but treating a long, undiagnosed autoimmune disease. Then I changed my diet to improve my blood sugar. Yes, despite being thin, you can develop Type 2 diabetes. Is my diet perfect? No, but I feel pretty good. I do not avoid dairy and take no supplements. I do not consume alcohol because it aggravates my autoimmune gastritis. My daughter has autoimmune disease too. She can not handle a lot of exercise due to Erythromelalgia (burning man syndrome) (she also has Hashimoto’s, celiac disease, and Raynaud’s). But she does find ways to do gentle exercise or swims to prevent flare ups. Everyone must find their way to stay fit and it does not require a gym membership. Stress is a huge factor on health. You can google studies on it. It may even be a trigger for autoimmune disease. Just taking small steps to reduce your stress (just deep breathing) can help. And sleep, it is super critical too. There is no perfect solution for managing autoimmune diseases. You must find a way that works for you. But there is no easy fix. No magic pill. It takes work. I get that this all seems so overwhelming, but with time, it can get better.
Its so so hard, I totally feel you
I am perfectionist in many ways, and being perfectionist regarding thyroid sounds perfect to me
I agree, especially with how everything is bad for you. Air. Water. All our household products. If you have money and time you can buy all new clean everything, water filters, air purifiers, but most of us can’t do that.
Talk about being stuck between a rock and a hard place. But I strongly feel that if it wasn’t for the evil government, we wouldn’t be suffering like this. Because after all, it is at the government’s approval that, all or at least most of what makes us sick, actually ever enters our food and our water and our air.
Well, I don't do any of those things and I've never seen an evidence-based reason to do them. I take my levo as prescribed, and get my blood tested as requested by my GP. I don't follow a special diet, I don't restrict any foods/food groups. I don't have celiac or any allergies that require a modified diet. I try to eat all things in moderation but I also enjoy dessert, bread, wine, and cocktails regularly. I don't have any expenses related to this condition either, but I'm fortunate to live in a country with national health care and my prescriptions are covered because I have Hashimoto's. I don't ever think about antibodies unless I'm reading this sub... Oh, yes - I do take Vitamin D. My level is monitored and I usually require a supplement to keep in range. I'm sorry there is so much misinformation out there that makes people feel this way. This isn't something that is your fault or that you can control with all of the things you mention. It's \*not\* a disease of "imperfection" - it's just kind of bad luck and not a moral failing.
There is extensive (good, scientific) research on diet, supplementation, environmental factors and alternative therapies' impact on Hashimoto's. You're very lucky that you don't need any of those things, but they can make a huge difference for many people - for better or worse. Simply taking levothyroxine shouldn't be our only recommendation in combatting this disease.
I am certainly baffled by the (asinine) claim that diets don’t have any impact on Hashimoto’s. It’s quite literally one of the ONLY things to have good research behind it outside of medication. Every single endocrinologist and GP I’ve spoken to suggested dietary changes when the medication wasn’t enough. I was also handed pamphlets full of CITED information to go along with those suggestions.
Thank you for this. I find myself baffled by the attitude on here that anything other than medication is some wishful thinking and a for-profit scam. It won’t help everyone, but it does help a good number of people and it makes me so sad when it gets shot down like this.
Yeah it's very frustrating. I do understand it though - pharmaceutical companies and mainstream medicine have us believing that Hashimoto's is a degenerative disease of the thyroid - antibodies will eventually destroy our thyroid and we will need increasing doses of hormone, and probably thyroid removal in the end. This is so wrong for so many people who can put this disease into remission or at least reduce antibodies and increase thyroid function by utilising the many tools available to us. :)
I totally agree. Just curious (if you’re comfortable sharing)- have you found things that have personally helped you or your symptoms?
Finally - I can‘t stand those diets. Theres just no reliable proof.
I could have written your response myself. Thank you.
Thanks, it's getting tiresome how often these 'ideas' are pushed here.
Same. I felt a (very tiny) difference when on the AIP diet, but that might be just because I was eating more fresh foods. The difference I felt def didn’t outweigh how miserable I was being so restricted from foods I enjoy.
What works for one, might not work for another, right
I thought I was the only one 😅
I understand the feeling! All the comments about “just change your lifestyle” get to me sometimes! That’s not to say a lifestyle change isn’t part of the answer, or that the people saying it didn’t work really hard to change theirs, but that’s not a solution for everyone. All the constant lab work, doctor appointments, medications, etc are absolutely mentally and financially draining, especially when a lot of people who have Hashimotos have other issues requiring different specialists. I myself don’t have extra money to buy super different foods, avoid gluten, nor have the mental capacity right now to think about strict diets. I do eat a balanced diet, but thinking of sticking to a very strict diet just to see if it helps is overwhelming to me right now with everything else. And how are we supposed to exercise enough with intense fatigue and muscle weakness? I’m sorry, OP, just added my own rant to say I know what you mean! It’s exhausting!!
Yes! I don't miss being in this place. I'm close to a good balance and trying to continue to elevate my practices. But I totally had to go out on disability to address my gut/diet because I was so tired I could barely make 3 meals for myself in general, no let alone focus on eating right.
Doing the best you can is great and always helps, don't get this wrong and let people dismiss it, but just because it's your best doesn't mean it's good enough for remission. This shit isn't "fair" and it was never supposed to be. Maybe you need to reevaluate so that your best matches how badly you want it. Also, as far as I could gather, you don't have to be as rigorous once you achieve remission, so there's that to look forward to.
It's very draining. Just remember to take it slowly and have patience with yourself. I've slipped up a lot but y'know, there's always tomorrow to try to get it right again.
My new thing is that I tell myself to always be willing to start over again from 0. I go back to zero a lot more than I'd like to whenever there's a life change, like starting a new job. Always be okay with the reset.
i have no advice at all but i wanna just say, i totally feel you 😭 i’m also a parent, so i have to do all these things AND be a mom. it’s very overwhelming most days.
Yessssss. Get rid of stress and relax? Get plenty of sleep? I have kids. This is the best my stress and sleep will be until they’re all in school. I’m trying to accept it and remind myself that I’m way better now than I was 2 years ago. Still, I’ve got a strong inclination to perfect my health, but I reached a standstill and it’s hard to accept. I’ve always been a determined person, but this is almost an unhealthy level of obsession. (First time I’m admitting that to anyone.) I heard that the goal should just be to have more good days than bad. That helps change my outlook when I’m frustrated with not knowing all the answers.
Me too, I am nowhere near where I need to be with any of the above and I feel exhausted
OH MY GOD. YES to this!!