Hashimoto's

[Kauaii]

There are so many books written on Hashimoto's lately. What have you found helps you the most (other than the medications)?

[humanbean]

Going 100%, no cheating, gluten-free.

[Kauaii in reply to humanbean]

Yes, I am, thanks!

[SlowDragon Administrator]

Regular testing of vitamin D, folate, ferritin and B12

Improving all four vitamins to optimal levels and maintaining at optimal levels by regular supplements

Plus absolutely strictly gluten free diet

Always same brand levothyroxine at each prescription

Always test thyroid levels early morning and always get actual results and ranges after each test

Keep good records of test results

[Kauaii in reply to SlowDragon]

Thank you, I should retest for these as it's been quite awhile.

[cyclingclimber]

Definitely going GF, like the others said.

Taking stock of your other food sensitivities and acting accordingly. E.g., I have been sensitive to dairy since I was 12. During times when I ignore that sensitivity (e.g., when I am in other countries), I feel much worse.

Limit sugars by a LOT. Cut down on carbs (this requires some figuring out/knowing at what level you feel good).

Try cutting back on caffeine or replace 'large sudden quantities' (like coffee) by substituting with beverages that will supply more slowly over time. Stop the caffeine train very early in the day. Sleep is essential. With good meds, I can get through the day on 8 hours. 9 is preferred - I feel good. If I sleep 7.5 hours I might as well not go to work. You can't use caffeine to get through the day like other people.

Before good meds, I could and would sleep the entire day.

Try out eating more protein - and consider giving up on being completely vegetarian or vegan if that helps your health. I know that is not fun, and I resisted for a long time, but there's no point in living if you feel absolutely fatigued every day. [I will nuance this - of course there's still a point in living - but there may be no point in sticking to principles that hurt you; perhaps choose another way to help the planet, or ask someone you love in your life to eat less meat/fish, so you can add some to your diet]

Don't believe TSH levels, and make sure that your endo/GP/other people do not treat you based solely on your TSH. That can set you back for years.

Don't stress. Seriously. Do whatever you can to not stress. Ever.

Work out. Not too intense - too intense too soon will hurt your body and just set you back. Work out often but at low intensity. Build up slowly.

Sadly, the smoothies made me feel a lot better. Recommended by many books for many reasons. It's not always fun, but they do make me feel much better.

Stop the distractions. If you notice your memory is bad, you can't concentrate, you feel brain-fogged. All that jazz. Stop the distractions to get things done. Put in earplugs to work, etc. When my T4 and T3 levels are only slightly off, but still within range, I am normally already at the point where my memory is gone, I feel brain-fogged, etc.

Vit D. Yes, do the labs. But also, just make sure you get enough. If your hair falls out by the bunch (rapid thinning - no new hair growth it seems), get your D3 tested immediately. It has happened to me 3x now, and my D3 is always low (even in South America!). So, I just take D3 every week now after high dose treatments for a year. Haven't had issues since.

There is so much more.

[Kauaii in reply to cyclingclimber]

Thank you so much for your advice.

[BeHappyOne in reply to cyclingclimber]

That’s a great synopsis cycling climber of all the relevant factors that I have experienced. I was diagnosed with Hashimoto’s finally last year. I went gluten and dairy free to prevent migraine and many of the same factors apply to that that you’ve mentioned. Food intolerances are often treated with scepticism but the impact they can have on our bodies is great. In my experience when I don’t follow your sound advice it comes back to bite me pretty quickly!

[cyclingclimber in reply to BeHappyOne]

Thanks for your nice response BeHappyOne! I guess that means I am starting to be a 'veteran' right now... I was diagnosed in 2015 with an autoimmune thyroid disease, which then turned out to be Hashimoto's.

I am sure many other people have tons of tips!

I wish I had discovered this forum a long time ago - I knew several people with Hashimoto's and they didn't give me any tips/very few tips. Some may still be somewhat in denial though. It's difficult to give up things you love (your favourite birthday cake!) or to get out of the Hashi's self-fulfilling loop and actually make your body move etc.

Take good care!

[Hedgesone in reply to cyclingclimber]

Hi I am struggling with giving up gluten love bread so much ! . I am just about to start HRT so will let you know how my brain fog is . I am taking iron but it hadn’t improved my brain fog sadly and also Brahmi it’s a herb was recommended to me . I wish you all the best

[cyclingclimber in reply to Hedgesone]

Hi Hedgesone,

I hope your brain fog will start to improve! I have not heard of Brahmi before, but will look it up. I am taking a range of supplements that I think work for me, but I've also definitely taken supplements that did more harm than good.

So, my advice would be to take note of changes. If Brahmi works for you, great! If not, it's okay to give it up...

About giving up gluten...

I know! I loved it too! I am Dutch, and as you may know, we eat a lot of bread. Every breakfast, every lunch. It was difficult to give up.

What helped me is that I had given up other things in life before. For example, I gave up eating meat around 1998 (as I said in my previous post - I have returned to eating fish to improve my Hashimoto's symptoms). I kept that process in mind, how I did it, and then applied it to giving up gluten.

I also had a cigarette addiction in the '90s, early 2000s. I gave that up. It was difficult, but I applied the same principles.

None of it is easy. But with everything; our brains are pretty good at adjusting to new circumstances. In the beginning everything is difficult, but after a while the memories of a good piece of bread with gluten fades. Our brains adjust until there is (hardly) any desire. Microhabits also help; tell yourself every dat that giving up gluten will make you feel better. Tell yourself you are doing this now for 8 weeks - enough time for your gut to heal. If you feel better, it is easy to continue. If you don't, you can work with a dietician to find out if you have other sensitivities.

For me - I do get jealous nowadays when I see a wonderful piece of pie my family members will eat on my birthday, but I don't have the desire to eat it with them. My brain knows all to well that gluten hurts me. Jealousy is there, but the desire is gone.

In addition - everything you're gonna eat that resembles something with gluten (e.g., I buy a $10 tiny birthday cake here in the US every year) will be such a treat! And, glutenfree bread is pretty good nowadays. There are also plenty of GF cookies around that are a real treat

Good luck with everything!

[Hedgesone in reply to cyclingclimber]

Thank you for the support very kind of you to take the time x

[Kauaii in reply to cyclingclimber]

Realize my response might have sounded sarcastic, but wanted to say that I do agree with your advice and do try to adhere to the same things. The problem for me I think is how not to stress, seems when you're weak things bother you a lot more easily and take a greater toll. It's hard to learn to let go and "pick your battles."

[Optimisticme3 in reply to cyclingclimber]

I found your response really interesting- just wondering if you or anyone else can do the same but for Graves’ disease. I thought I had beat it when I came off carbimazole last year (Feb 2021) but it came back in October and I am struggling more this time. I’m on 20 mg a day and have first consultation (for this time round) with endocrinologist on Tuesday. I’m aware that I don’t know very much about what levels I should be aiming for and I worry about my vitamin/mineral levels as I stopped supplements when I went back on Carbimazole in October. Last spring I was iron and Vit D deficient so Dr put me on medication but should I be having more tests to check those and other levels? Also, apologies to the guys, but I’m peri menopause and I honestly don’t know what symptoms are being caused by what. I’m getting random muscle aches which can be quite severe (ie upper arms) which will then just disappear for a while. Just feel like I’ve lost all clarity on what my body needs! Any suggestions are welcome! Thank you 😊

[cyclingclimber in reply to Optimisticme3]

Hi Optimisticme3,

Don't apologize to the guys! They will go through changes as well...

I am so sorry I didn't respond to your post! I think there are probably some threads on HealthUnlocked that are more specifically about Graves.

It can't hurt to check vitamin levels more often. In the past I often didn't worry about it and would go years if not decades without any sort of check, but now I will ask the nurse to let me check my vitamin levels as well at least once a year. I also take vitamins at all times now (especially vit D).

I can comment on the muscle pain though; when I am hyper (overmedicated, or so stressed that my thyroid is compensating) I get muscle pains in my upper arms and shoulders. So, when you can't keep your arms lifted above your head when you are brushing your hair or putting shampoo in your hair, your levels are most likely off (too high). However, these muscle pains in the arms/shoulders can also occur when you are hypothyroid. I don't really get them when I am hypo though, maybe only when I am really hypo. I once found a nice infographic about these pains; so maybe if you search for that and see what the related symptoms are, it is easier to figure out what may be going on.

Either way, upper arm/shoulder pains/fatigue are something to report to your endocrinologist. It is a very typical symptom, and I've found that most endos will take it into account when adjusting your meds.

Good luck!

[cyclingclimber]

Hi Kauaii,

No worries! I didn't think it was a sarcastic response.

I agree, it is hard to deal with stress and ensure you don't stress, when you're already feeling weak due to the disease.

I just keep in mind that I shouldn't stress. That stress has a different effect on my body since Hashimoto's, then before Hashimoto's. It doesn't always work, but it helps to tell myself every day that I can't stress.

Like you said 'I try o adhere' to what I said. It doesn't always work out, but it is good to perhaps write out what works, put it somewhere noticeable, and remind yourself that you know those things work and that it is okay to try to stick to them, even if society pulls you in different directions.

It will be ups and downs, but at some point the ups hopefully overwhelm the downs by far. That's the goal.

Take care!