Does >tsh unmedicated mean >thyroid damage? Or...?

[Hashela]

Guys I tried to wean off my naturethroid- it didn’t work out getting my Fe sorted had me feeling so well that I was able to drop my dose, so I got cocky and tried to come off. 2 months later my tsh was 18 👀. When I was originally diagnosed 1&1/2 yrs ago, it was 6 unmedicated. (If it matters, my t4&3 seem to stay the same no matter what I do, on or off meds). Why the heck would it go that high?? Does it mean my tpo antibodies did this much damage in the past year? Or... is that common when you come off to experience a period of a surge? Gah. Bestow your knowledge, thyroid gods of the Internet, if you’ve any you’d like to share ❤️

[greygoose]

TPO antibodies don't do any damage. That's not their job. Their job is to clean up any TPO that has leaked into the blood during an immune system attack on the thyroid.

The fact that your TSH was so much higher might mean that more damage has been done to your thyroid by the immune system. Or it could just be that levels tend to fluctuate when you have Hashi's. Also, were both tests done under the same conditions: early morning and fasting?

[Hashela in reply to greygoose]

Wow... so my antibodies going lower doesn’t mean my thyroids attack is lower. It just means there’s no tpo to clean up bc my thyroid has been suppressed, but this whole time the damage is still raging on? And... coming off the meds probably showed my how much damage has been done because it takes sooo much more stimulus to get a response? Oh. Boy. Remission looks bleak. I actually pictured tpo a cleaning up tpo at the point of the thyroid, at the tissue... and that was why the process of making hormone was interrupted. That overproduction of h2o irritated the tissue and that’s how tpo became “in the wrong place”. I’m gonna read more today. Thanks as always for your gentle pointers in the right direction.

Ooh - yes morning fasting

[greygoose in reply to Hashela]

No, I really don't think the damage 'rages'. There are sporadic attacks, which we can't anticipate, but the progress is slow.

And... coming off the meds probably showed my how much damage has been done because it takes sooo much more stimulus to get a response?

Possibly, but not necessarily. Nothing is that linear or simple where the thyroid is concerned.

I actually pictured tpo a cleaning up tpo at the point of the thyroid, at the tissue... and that was why the process of making hormone was interrupted. That overproduction of h2o irritated the tissue and that’s how tpo became “in the wrong place”.

I'm sorry, I have no idea what you mean, there. What has H2O got to do with it?

[greygoose in reply to greygoose]

I'm not sure that Hashi's actually goes into 'remission'. Not in the way that Grave's does. However, you can have varying periods of a euthyroid status in between a 'Hashi's swing and going back to being hypo. Depends how long it takes the excess hormone to be used up/excreted. But, Hashi's never goes away, I'm afraid.

[Hashela in reply to greygoose]

Ooops - add a 2. Meds still kicking in this morn, lol

[SilverAvocado]

Unlike what doctors tend to suggest, TSH isn't some enormously objective measure of exactly what your thyroid status is. It can have a lot of individual difference in how responsive it is.

It's basically your hypothalamus and pituitary making a judgement on how much they need thyroid hormone, and how much fuss they want to make about it. You've put them in a situation where a few months ago they had plenty of hormone, and today they have got much less. They're probably quite shocked and have let out a larger signal than they did before you were diagnosed.

Looking at a full thyroid panel will give you a better picture of your overall thyroid status.

[Hashela in reply to SilverAvocado]

That’s a bit encouraging, but... shocked for 2 months? Grrr. Still, maybe. I’m hoping someone that’s gone into remission pipes up and says they had my same experience

[SilverAvocado in reply to Hashela]

TSH is quite slow moving, so it will take several weeks if not months to catch up to your current level. If you retest in a year or so it might have returned to your diagnosis level because it will no longer be responding to the DIFFERENCE between having hormone and not having it.

This kind of thing is why TSH is not a very good indicator of your thyroid status. A full thyroid panel will tell you a lot more.

In general thyroid illness doesn't go into remission, and thyroid hormone treatment is needed for life. Sometimes people can improve symptoms and slow down the progress of the illness by correcting vitamin deficiencies or improving overall health in other ways.

[Catseyes235]

Why were you on thyroid replacement in the first place? You must have needed it so to stop taking it has made you hypo. Everyone needs thyroid hormone whether naturally produced or through medication.

[Hashela]

Yes - for about a year now. Then I got my iron up to snuff and felt so good I was able to cut my dose and still keep my temperature up. So I thought I’d wean down and see how it went. My antibodies have dropped from 2000 to 400 so I thought I could try but my symptoms came back around 3 weeks in. I tested after 8 weeks and saw my insane tsh. I’m back on now. Iodine is a bit low... I’m really trying to go into remission since it’s earlyish in the disease process but I don’t know enough and need your guys’ insight 🙏🏼