Ahead of a meeting with a new consultant I checked back on my results for antibodies. I found this in my medical notes.
TPO antibodies Jan 2019 - 264IU/ml diagnosis Hashimotos
Thyroid auto antibody test Jan 2023 – 32IU/ml - below cut off of 100IU/ml no indication of autoimmune disease
Does that mean I still have a Hashimotos diagnosis. And any ideas why the antibodies dropped so much?
im still very much hypothyroid
I’m Confused?!?!?
Hashiboy
Antibodies fluctuate so you can have elevated antibodies at one test and below range at another, it doesn't mean that you no longer have Hashi's, it's just that the second test they weren't elevated. You are still hypothyroid and the cause of your hypothyroidism is autoimmune (Hashi's).
Thanks SeasideSusie so no need to alter my user name then. I never knew that they could change so much - I suppose that means they could miss them on a single test. I'll book in new tests before my next appointment.
That's why we always say that you con't rule out Hashi's on the basis of one negative blood test. 
Thanks greygoose it's quite hard to get to grips with all this. Does it mean anything in particular if the antibody levels reduce to the normal range? I'm not imaging I'll grow a new thyroid but I can always dream.
Sorry to destroy your dreams but no, it doesn't mean you're growing a new thyroid.
Antibodies are usually highest after an autoimmune attack on the thyroid.
During the attack, the dying cells release their store of thyroid hormone into the blood - which is why one has a Hashi's 'hyper' swing. And, at the same time, a certain amount of the proteins - Thyroid Peroxidase and Thyroglobulin - that are contained in the cells also leaks into the blood, where it shouldn't be. So, the PTO and Tg antibodies come rushing along and mark these rogue proteins so that the immune system can the hoover them up and destroy them. Just as they would a cold virus, or something like that.
As time goes on, there is less and less thyroid tissue let to destroy, so the immune system attacks become less frequant. So, the antibody levels rise less frequently. Eventually, there will be no thyroid tissue left, so no more attacks and antibodies will probably stay low. But, by then, you will be entirely dependant on thyroid hormone replacement, so having Hashis won't mean very much anymore.
Thanks for the detailed info greygoose in that case, I probably don't have much thyroid tissue left to release proteins that provoke antibodies. The poor shriveled gland is probably completely kaput ☹️. I did a trial with my new endo earlier this year of stopping all thyroid meds to double check I was actually hypo rather than just transiently hypo following an infection. My TSH soared but no sign of antibodies. I started to get ill and Endo put me back on T3. Do you think it's worth retesting antibodies or getting an ultrasound - I suppose that would just confirm the obvious.
Oh these endos and their little experiments! How dare they treat us like lab rats!
Not much point retesting antibodies, the won't give you any concrete information because of their tendancy to fluctuate. But, if you can get an ultrasound that might be a good idea. Just to be sure.
Hi greygoose I will take your advice and get an ultrasound. The endo who took me off meds was really helpful and collaborative. He planned the medication removal with me and set up a testing plan to monitor closely. I didn't have to do it and he said most people would say no. So I didn't feel too much like a lab rat this time. Because my hypothyroidism can't on after an infection there was a slim chance that it was temporary andpart of my throid my still be working and no one had ever checked. No such luck, it didn't miraculously jump start and ended up a tired, constipated, brain foggy heap. A least I know for sure. So back on T3.
But you've been diagnosed with Hashi's, you had high antibodies. How could he possibly think your thyroid would 'jump start'? It's not logical.
🤔 that's a good point. I suppose he was questioning the hashi diagnosis. I'm not sure if you get antibodies following thyroid damage due to infection? Or is it only for hashimotos?
Let's say it's only for thyroid disease - you can have raised TPO/Tg antibodies with both Hashi's and Graves'. You do not get them following an infection. I'm not even sure that you would get damage to your thyroid with an infection, although an infection will affect your TSH/FT4/FT3 levels.
Thanks greygoose I'll assume it's Hashimotos. Thanks for helping me make sense of that and I'll clarify with my consultant and GP.
my TPOab were 2499 [0-50] and then >3000 in 2003
With antibodies that high, there's no doubt about it. Obviously your 'consultant' doesn't know his antibodies from his elbow!
Those were ,mine ... lol he's got some , but not that many
Oh! So sorry I pinched your antibodies! lol Come back all I said. 
But, over-range antibodies means Hashi's even if they're not that high.
greygoose tattybogle yep those are tattybogle 's, I must have a lazy immune system, mine never got above 300. And I know some endos I've seen were not brilliant but I have to stand up for some of them, they aren't all terrible greygoose I really think the guy I see is trying to help.
Stopping your thyroid hormone is not helping, and he should know that. There is no question about your diagnosis.
Don't compare your levels with other people's. It's not helpful. And, the level of antibodies, once over-range, is not indicative of anything except to tell you that you have Hashi's. 300 is pretty high for anyone.
I'll respect your views greygoose but I'm not keen to go down the doctor bashing route. I know some of them have no time or interest in hypothyroidism and doubt that it's even possible to still have symptoms once the numbers are normal. I recently saw a very senior consultant in a video debate who advised on the NICE guidelines refer to people like you and me as 'the sad' that show up in any population. She said she might consider a 3 month trial of T3 but generally not because of expense. After that it was T4 and discharge. So I totally get your views on some medics. I'll defend the guy I'm seeing though, he's willing to prescribe T3 and to work over months to get a balance I can live with. I originally had thyroiditis after an infection and in some cases people recover fully. He wanted to double check that I hadn't recovered and then if necessary start from a clean slate with T3. It wasn't something he insisted rather it was an experiment we both felt might be worth a shot For me I got to confirm without doubt I have hypothyroidism and I got to restart T3 in a balanced way - prior to that a private consultant had put me on a high dose of T3 in a very short time, left me feeling crap then left the country. So I'm really grateful for help of the new guy.
What a stupid experiment! Your endo is a sadist
Hi TSH110 Thanks for the info on antibodies, I had no idea they can change so much. Really have to disagree about my endo though - he's absolutely not stupid he definitely wasn't sadistic. - I initially became sick with subacute thyroiditis and my current endo was the first to actually follow the clinical guidelines and do a trial of removing meds to check for possible recovery. To me that's smarter and takes more clinical wisdom than just keep prescribing meds with barely a second thought. Here's some info on subacute thyroiditis.
bestpractice.bmj.com/topics...
'Subacute thyroiditis (also termed De Quervain thyroiditis, granulomatous thyroiditis, or giant cell thyroiditis) is a self-limited inflammation of the thyroid gland. It is associated with a triphasic clinical course, in which each phase may last for a few weeks to many months; the three phases are characterized by transient thyrotoxicosis, hypothyroidism, and then a return to normal thyroid function, with the normal thyroid function occurring in >90% of patients.[1][2] Only a minority subset will remain permanently hypothyroid and require thyroid hormone replacement.'
Turns out I'm one of the unlucky 10% with a permanently fried gland.
The thyroid is not like a liver, it cannot fully regenerate itself, I don’t think it has any powers of regeneration at all in fact. So sadly, we cannot regrow our damaged thyroids ☹️ and must keep on taking the tablets till we croak.
This article about thyroid antibodies might be of interest to you. It’s quite detailed but has the best explanations I have seen:
thyroidpatients.ca/2020/04/...
Just read that in detail - thanks again TSH110 that was really helpful and had given me something to follow.
There's some interesting stuff out there on recovery of thyroid function in non hashimotos autoimmune thyroid disorders like atrophic hypothyroidism. I'd never even heard of atrophic hypothyroidism.
pubmed.ncbi.nlm.nih.gov/196...
that’s the one I have I think it’s probably more common than is thought… if it is even thought of - it’s not longer taught about at medical school so no longer common medical knowledge. I never had any goitre at all and was very thin. The thyroid was completely atrophied away by the time I actually got a diagnosis. It was almost impossible to get a diagnosis I wonder if it was because of a lack of goitre and not being overweight. It is a shame that knowledge has been lost as I was not taken seriously when I suggested my symptoms might be thyroid related, even with a strong family history of thyroid problems.
Dr Tania Smiths other blog posts are very interesting some are quite difficult to grasp but are still worth reading as ones knowledge increases
my TPOab were 2499 [0-50] and then >3000 in 2003.
in 2017 they were 195 .
my assumption is that they were less in 2017 because in the intervening years ,some more of my thyroid has been damaged, and it's probably shrunk a bit/shrivelled up/ or turned to tough old leather too (fibrosed) and as a result there is less healthy thyroid tissue left for the immune system to attack , therefore less thyroid peroxidase to spill when it is attacked .. therefore less TPOab need to show up to help clear up the mess .. because there is less mess.
But the reason there is less mess in 2017 is not because my thyroid is in better shape than it was in 2003 .. it is because it's actually in worse shape .
if you have a party with loads of beer and tons of crisps.. then cleaning up the mess is a big job .. if you have a party with less beer and less crisps. then there's not so much mess to clear up .... doesn't mean it was better party
tattybogle Hi there, thanks for the reply. greygoose replied with very similar explanation. Your experience and explanation makes perfect sense. I better postpone chucking my meds away.
yes i reckon you're stuck with your name .. and your need for swallowing thyroid hormone ..
anyway , it's a good name it would be embarrassing be called NotSureWhyBoy
😄 the boy bit definitely is more optimistic than real
Perfect analogy!🙂 Although mine feels like the party where guests won't leave...
🍻 great analogy 🤣🤣🤣
Diagnosis Hashimotos Based On Antibodies Only
Do I have Hashimotos? I consistently have high levels of anti TPO antibodies in my annual bloods. Around the 500 mark. TSH and T4 normal.
GP denies I have Hashimotos
Confused - why are my antibodies still so high?
Hashimotos Encephalopathy? Disturbances of consciousness with high antibodies 
