Is Hashimotos Forever ?: Hi, I’ve had... - Thyroid UK

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Is Hashimotos Forever ?

K80BCR profile image
9 Replies

Hi, I’ve had hypothyroidism for 50 years. I was aged 8 when diagnosed with autoimmune thyroiditis. I’ve managed to live a happy life. Good Education,Career and relationships. No children due to endometriosis, sadly. However, after a hysterectomy in 2003. I was never really well. Now know it was diminished levothyroxine levels due to taking HRT at same time as Thyroxine. ( This was totally missed by Endo and GP) Eventually GP diagnosed me with Fibromyalgia in 2011. I retired from work due to ongoing pain etc. However, I’ve learned a lot from this site and other research over the past 18 months. I take my medication on a completely empty stomach, take supplements and eat healthy and overall my health is good and pain levels diminished since taking vitamin D and magnesium. But there are times I just feel awful with no energy, swollen glands , awful brain fog and ache all over! I don’t think I ever had Fibromyalgia, but mismanaged Hypothyroidism. But can’t understand these flare ups.

So Basic Question then: Once you have Hashimotos do you always have it and am I just continuing to have Flare ups 50 years on and this is the way it is and will be?

Bit of a ramble but really looking for any clues as not finding answers from doctors or internet search. Thanks for reading my question!

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9 Replies
SlowDragon profile image
SlowDragonAdministrator

Perhaps your Levothyroxine dose still isn't optimal?

Vitamin D, folate, ferritin and B12 all need to be optimal

Or gluten or dairy intolerance are both common. These can cause fluctuations too

K80t profile image
K80t in reply to SlowDragon

Yes , working on that since, discovering absorption issues. Maybe I need to give it some more time. I’ve only got to the bottom of this situation in the past year. Thanks. But I still wonder about Hashimotos continuing to be present even when levels are balanced and feeling ok.

greygoose profile image
greygoose

Hashi's is for the life of your thyroid. Once the thyroid is completely destroyed, the immune system will have nothing to attack and so will subside. However, you will always be hypo because the Hashi's has destroyed your thyroid.

But, are you talking about 'flare ups' or 'Hashi's flares'? Because they're not the same thing. And, with Hashi's, you don't really get 'flare ups', not in the same way your would with arthritis or something. Sounds as if you're just talking about having the occasional bad day. And, we all get them, even when our thyroid hormone replacement is optimal.

That is because when you have a fully working thyroid, it adjusts to your daily needs for hormone. When you are taking exogenous hormone, it's a fixed amount, and some days, it may not be enough, so in the following days, you don't feel so well. There's really not a lot we can do about that, except to learn to pace ourselves. All you can do is get all your ducks in a row - and it's not just about hormones - and hope for the best. :)

K80t profile image
K80t in reply to greygoose

Thanks, that makes sense. I struggle with the pacing part as I’ve lived a life of boom and bust, fall down get back up and run like heck! So feeling good more consistently means I want to do more and probably over do it! I’m really grateful for this site, it has been so helpful!

greygoose profile image
greygoose in reply to K80t

You're welcome. :)

Marymary7 profile image
Marymary7

Maybe you need T3 as not converting T4 into T3?

You can continue to have flare ups until your thyroid is completely destroyed. As it gets more and more destroyed, you usually need a regular increases in meds (as there is less of your own thyroid to produce hormones)

K80BCR profile image
K80BCR

I reckon Thyroid was destroyed years ago as I was diagnosed at age 8 and that was 50 years ago. As for T3 top up I tried it in 2010 and it made me very ill. I don’t seem to have any difficulty converting according to my most recent tests. So I tend to think it fluctuates due to just being a set amount of thyroxine as per grey goose’s response. Thanks for your comments and suggestions.

Margareta3 profile image
Margareta3

From my research Hashimotos is not for life, There are many cases it was cured. But you must find appropriate information and help to stop it. And this is the difficult part. Good luck!

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