Experimenting with rebooting my thyroid

[Hashiboy]

Hi there, I have been on T3 only but struggling with palpitations. I got some great advice here and in the end I agreed with my endo to titrate off T3: to see what happened if I was on no meds. I got hypothyroid after subacute thyroiditis a few years back and there was a chance my thyroid had recovered. Anyway I got from 50 T3: down to 20 before beginning to feel weak and bloated. My TSH went from 0.9 to 12, free T3 dropped to just in range and T4 didn't miraculously climb back anywhere near normal. So endo called me and said at least we have confirmed for sure I have permanent thyroid problems and got me to slowly increase back to 40mcg T3. I feel slightly under on that but at least no palpitations. Weirdly, as you can see by my user name, I thought I had Hashimotos. My TPO antibodies were tested as part of this experiment and the result was about 30 - so well below the cut off and not indicative of autoimmune thyroid disease. So good knows what kind of thyroid problems I have but I need a new user name. What I have learned though is I do have a permanent thyroid problem, I really don't recover on T4 or a combo and I get on with T3 at a max dose of about 45mcg. So worth it to learn that.

[BB001]

My understanding is that one's body only produces antibodies against something until the threat has gone. Once your thyroid has been destroyed the antibodies decrease.

[tattybogle in reply to BB001]

i could be totally incorrect , just thinking out loud here

...but eg if you get physical damage to the thyroid due to 'other causes' ( somebody hit you in the throat , or strangled you , or car crash / seatbelt injury etc)........ then a bit of Thyroid Peroxidase might leak from the damaged thyroid .and then TPOab may form in response to that Thyroid Peroxidase and attach to it .

In time this spilled Thyroid Peroxidae and those TPOab would clear up, and the thyroid would heal ,, and the TPOab levels would return to normal ?

not certain about this at all but if i'm correct "if you EVER had raised antibodies, you have Hashimoto's hypothyroidism" is overstating it ?

i'm wondering if subacute thyroiditis (with temporary appearance of raised TPOab ?) may be more in the 'thyroid damaged by other causes' category , rather than the 'autoimmune thyroid damage' category ?

[BB001 in reply to tattybogle]

True. I did get rather carried away there. I'll edit to restrain my exuberance.

I decided to remove that part of my comment altogether. You're right there are too many exceptions.

[Hashiboy in reply to BB001]

That's useful to know BB001 i think I had one slight raised result when I read first Ill. So maybe Hashiboy is still accurate - well maybe the boy bit is pushing it.

[tattybogle]

yes but:

"thyroid-damaged-by-?-so-it-spilled-some-thyroid-peroxidase-which-now-seems-to-have-been-cleaned-up-but-thyroid-still-f-u-b-a-r-anyway-boy' ...just doesn't have quite the same ring to it

[Hashiboy in reply to tattybogle]

tattybogle yep, bit of a mouthful. Probably more accurate to change it to oldbloke-with-knackered-thyroid. The original damage was from a viral infection so virusfriedthyroidboy also works

[StPetes]

I like the virusfriedthyroidboy one best. Brave of you to try to reduce your T3 , you must have felt miserable with those results. You're very lucky to have a collaborative endo who will actually call you. Hope you continue to improve

[Hashiboy in reply to StPetes]

Hi StPetes hope all is good with you. I started to feel a bit rough by the time I got to 20mcg a day, but I've felt worse on T4 only. The endo suggested experimenting with reducing meds but said he didn't think most people would do it. I didn't think I had much to lose. Best outcome would be I find I don't need meds at all anymore and worse would be I'd feel crap for a bit but have a better idea about my T3 Goldilocks zone. Weirdly it seems I'm happier with TSH mid to lower range rather than suppressed. Bit disappointed I can't go completely medication free.

[StPetes]

I wish you well with that plan and can only dream that I could aim for it. I hate that I'm medication dependent for life but I have Hashimoto's so I have to accept it 🙄. My TSH is very suppressed and symptoms persist. T3 is a positive addition but it's hard to get the balance right. Learning from the brave forerunners here.