How do we know when Hashimoto's has completed destroying our thyroid?
I'm still recovering (two months on) from a big flare up of symptoms which I assume was hashimoto's activity. Returning to work on a reduced schedule tomorrow and hoping to cope.
This episode makes me wonder if my antibodies did further damage for me to have been so ill. I really hope not to have to go through many times like that. I certainly have been wishing my thyroid would just die off as that almost sounds easier.
But how will I know when hashimoto's has finished?
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Obsdian
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TPO and Tg antibodies do not cause damage. To anything.
And a Hashi's flare is when you start having hyper symptoms, not extra hypo symptoms, so it doesn't sound as if your problems were due to the Hashi's.
The only way to know for sure if the thyroid is finally dead is to stop the thyroid hormone replacement and see what happens. But that's really not a good idea. Because if it really is dead, you won't have any source of thyroid hormone, and that's not very pleasant.
It can drag on for years. I had my last Hashi's 'hyper' swing at the age of 50 (and, frankly, it was glorious!), but at 68, due to certain circumstances, I stopped my thyroid hormone for six months and my thyroid still managed to kick back in to keep me alive. It couldn't make much but it did the best it could.
And it doesn't really matter when it comes to the end if you're on the correct dose of thyroid hormone replacement, because it can't make you any more hypo than you already are. The exogenous hormone has already taken over from your thyroid, which isn't making hormone anymore.
But, the important thing to know is, we only have hyper swings, not hypo swings, because we're already as hypo as we're going to get.
Then I don't understand antibodies as I understood what I read to be that the antibodies are the result of your body attacking your thyroid.
Adding some more. Here is a clip from the mayo clinic website that summarises what I understood antibodies to be, unless I am reading this wrongly
"Hashimoto's disease is an autoimmune disorder. The immune system creates antibodies that attack thyroid cells as if they were bacteria, viruses or some other foreign body. The immune system wrongly enlists disease-fighting agents that damage cells and lead to cell death."
the mayo clinic description of TPOab action is a huge oversimplification.
( and you'll come across similar wording in many other thyroid sites, including even thyriod uk's own website )
very many places have oversimplifies this process in stuff they write for patients , cos the autoimmune / immune processes involved are very very complex and would go over the heads of most of their readers ..... if they wrote out the whole autoimmune / immune process accurately it would make basic articles much harder for people to follow .
my rough understanding so far (from reading complex stuff i barely understand) is that it's actually lymphocytes? (i've forgotten ) that infiltrate the thyroid .. and they (or something else that then follows on from that process) ,are what do the damage.
and as a result of the damage , lots of thyroid peroxidase leaks out from thyroid .
TPOab then attach to this spilled/ damaged thyroid peroxidase where they act as markers ...like 'post it' notes stuck onto a spill of milk on the shop floor ,, saying "cleaners... please remove this spill"
TPOab are present in everyone . they have a routine 'label this for clean up' role to do, as part of the bodies normal recycling of rubbish... but if the shop floor gets messy with too much thyroid peroxidase spilled on the floor .. the amount of TPOab (post it notes) will obviously go up. significantly .
But the post it notes didn't spill the milk... the lymphocytes (or whatever) did .
and it's not even the TPOab that actually do the clearing up either .... some other even more complex part of the immune system comes along in response to the post it notes and that (whatever it is) does the actual clean up.
and even that long and complicated explanation is grossly oversimplified ... so you can understand why lots of writers have just decided to write "antibodies attack.... "
i do wish they wouldn't though.. it doesn't help anyone to give such a wrong impression of what antibodies do .
i can link you a a huge article that explains more accurately ..... but it will give you a headache trying to read it : healthunlocked.com/thyroidu... different-varieties-of-hashimotos-every-thing-you-ever-wanted-to-know-about-antibodies-lots-youll-never-get-your-head-round
it's important to remember that there is a huge amount that is still unknown/ not understood about TPOab so even when reading proper science articles , you have to pay attention to how long ago they were written ... understanding of TPOab's role is evolving all the time and at present we understand very , very little.
as I understood what I read to be that the antibodies are the result of your body attacking your thyroid.
That is correct. When the immune system attacks the thyroid, the dying cells leak traces of TPO and Tg into the blood, where it shouldn't be, and the antibodies come along to clean it up. But they don't do any damage. It's not the antibodies attacking your thyroid.
I've just seen that tattybogle has explained it all very well - yes, lymphocytes, tatty. And, yes, I noticed that on the TUK website it said the TPO/Tg antibodies attack the thyroid, which is wrong, and which I found rather shocking and unnecessary. Even if it is complicated, you can still be accurate.
But, the fact remains that TPO/Tg antibodies do not attack the thyroid - although TPOab can sometimes be found within the damaged thyroid, attracted by the presence of TPO. But they don't cause the damage.
I wouldn't have said so, no. Because that can happen even to people who don't have Hashi's, and are hypo for other reasons. And it's probably more to do with the medication, or absorption, or things like that. But, once you are at rock bottom, you can't go any lower, can you.
I must not be at rock bottom. I am on 75, which doesn't seem a lot, and my results seem decent (finally remembered how to update my profile). Waiting to recover more to see how much this new dose is helping and how many symptoms it has fixed vs are still part pf recovering from being ill.
I just imagine I will still decline and end up on more levo eventually.
75 mcg is not a huge dose, no. And you probably will need more eventually, not because you are having Hashi's swings, but because you're not yet on a full replacement dose. Remeber, levo does not top up what your thyroid makes, it shuts your thyroid down and totally replaces it.
I have trouble understanding the top up vs replaces idea. I understand what it means, but more trying to compare it to my body responses so far.
If it stops my thyroid, how come I don't need more right away? My results being ok currently makes it seem like more must be going on like producing some ofy own hormone. It's hard to wrap my head around.
Well, this is just a theory, based on all I've read, but... You've had Hashi's for quite some time - you must have because the hypo symptoms don't start immediately, but very, very slowly. And as the thyroid slowly declines, the adrenals take up the slack by making more cortisol. And your body gets used to coping with less and less thyroid hormone. So, it takes a while to notice that all is not as it should be. Impossible to know with any certainty when the Hashi's first arrived, only to know when you first noticed symptoms. And, between the two there can be quite a gap.
So, your body is used to coping with low/lowish levels of thyroid hormone, so doesn't need high levels immediately. Which is one of the reasons we don't go straight onto a full dose - unlike people who've had their thyroids removed without the build up of being hypo.
But, little by little, as the body gets used to having more hormone, it will want more hormone to function correctly. So, we build up the dose slowly until your body says, ok, that's enough, don't need more than that. And then you will have reached your full replacement dose and be feeling well.
So, does that explain why I'm got more ill progressively through April and then have taken a long time to recover? My levels went from 1.8 in March to 4.2 in April. I only happened to get a dose increase as I had planned to ask for one anyway.
It's been a miserable few months, I'd rather it not feel so dramatic in the future.
I like this reply to a question I have often thought about but never was able to articulate. Thanks Obsdian for being so persistent with your questioning.
I first noticed ‘changes’ when I was about 14. I struggled from then on, gradually getting worse. I think my youth and otherwise vigour made this a slow process. Too much to say about that. From about 10 years ago I thought I was dying and that was kind of OK. I could not struggle any more. However about 2017, TSH about 18 I think, hypothyroidism had been discovered and I was not informed or medicated.
Only three years ago at nearly 70 this hellish journey of medication began. Being on medication and feeling ‘worse’ is pretty blooming scary. Sometimes I just feel I wish I had been left to quietly ….
Anyway grey goose thanks for the explanation - I hope I now understand the process better.
I was told by my doctor you can go as low as falling into a coma and dying if you don't take medication. This was the path I was on before the docs knew what was wrong with me. I was so tired all I wanted to do was sleep all of the time, I completely lost my voice, my hair was falling out and I could hardly string a sentence together. I was so exhausted I can understand the falling into a coma but now! This was 30 years ago. I was told I'd have to be on medication for life, I said what if I don't want to take medication for the rest of my life, the doctor then said well then you will start slowing down to the point of slipping into a coma and dying, so I took the meds. I am full hypothyroid now on 100mg one day then 125mg the next. Hashimotos Thyroiditis. I am still tired all of the time and have side effects from the meds, water retention, joint pain, foggy brain. In later years diagnosed with fibromyalgia. I have flare ups of both and now I'm menopausal age I can honestly say that HRT is giving me some relief from pain and tiredness although it's always there.
You really should stop thinking of it as 'medication'. It's not a drug, it's hormones. Entirely different. Just like taking HRT.
If you're only on 100/125 mcg levo I doubt you have fibro, you're more likely to be under-medicated.
I am still tired all of the time and have side effects from the meds, water retention, joint pain, foggy brain.
Water retention, joint pain and foggy brain are not side-effect of the levo. They are hypo symptoms. So pretty certain you're under-medicated. Does your doctor just test TSH? Best way to keep a patient sick!
But, your doctor was right. If you don't replace the missing hormones it can kill you - a long, slow, miserable death. But, on the other hand, it's a bad idea to take them before you need them, because being hormone, they're not going to cure anything, not like taking aspirin when you've got a headache. One has to keep testing until the right time.
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