Sorry if this has already been asked but I can't find the answer.
If we have antibodies that keep attacking the thyroid until it dies. Do we eventually get to a point that we've got nothing left to attack so our antibodies drop? So then would be stable once on the right amount replacement and wouldn't need any more increases?
Side question - can an ultrasound tell us how much of the thyroid is left? Wondering if it's worth getting one before my endocrinology appointment.
Thanks 
If nothing is done to slow the progress of Hashi's, then yes, the immune system does eventually completely destroy the thyroid, and the antibodies go away. But, that doesn't mean that you will never need to have your dose altered again, because so many other things can affect it. You would still need regular blood tests to check.
Yes, an ultrasound can tell you how much of your thyroid is left, but I have no idea if it's worth getting one before your appointment. I'm not sure you can get them privately, anyway. I don't know that it would influence your endo in any way.
Thank you greygoose
There is a company in Manchester that does them for £170 that has responded and confirmed.
There's some advertising cheaper around £120 but only one responded and told me to ring them but I haven't got round to it yet.
One of my main symptoms has always been difficulty swallowing/PND type symptoms and particularly overnight feeling like my airway gets closed in certain positions. But lately it's been quite painful when I touch a lump in my lower throat/neck which I'm assuming is my thyroid and feeling tight in my neck especially when I look up. I think it would be a little bit for peace of mind too x
Sounds more as if your thyroid is swollen, than shrunken. So, perhaps your Hashi's isn't too far advanced.
It's feels so. But after basically having to force my gp to feel she told me everything felt normal. Then the next gp said inside my nostrils were a bit inflamed and diagnosed me with PND and gave me a steroid nasal spray... But apparently nothing to do with my thyroid...
My levels have never been that bad but I'm on my 5th dose increase in a year (100mcg) and getting fed up of feeling crap. I was just curious if there'd come a point it would bugger off
Thanks x
Well, the Hashi's part will bugger off eventually. But, you'll still by hypo and need thyroid hormone replacement - and be at the mercy of ignorant doctors who don't know how to dose properly. What exactly are your levels?
Hi Greygoose,
Interested in what you said about the antibodies going away.I had my Thyroid totally removed 17 years ago. When I had a blood test 7 years ago to see if I had Lupus (which my Sister has), the Doctor said that was o.k. but I still had a positive antibody which was to do with the thyroid, and I would always have it?
Ah, but which antibodies were they? Hashi's antibodies - TPO and Tg - go away when the thyroid is dead or missing. Grave's antibodies - TRAB and TSI - stay on, even when the thyroid has completely gone. Lupus antibodies are different again.
Hi, thanks Greygoose, that's interesting. I had Hashimotos. Can you have graves at the same time ? When my problem first started I lost a lot of weight and was hyper.Would this have been the Hashis doing it,or could I have had graves as well?eventually a lump came up in my throat and they discovered it was Hashis. She said the positive antibody that was left wasn't Lupus.
Well, you could, but you wouldn't know unless the Grave's antibodies were tested. If you have Grave's and Hashi's, the Grave's is usually dominant.
Did you not get a print-out of those results, to see which antibodies were tested? I fail to see why they would test thyroid antibodies if your thyroid had been removed. Very strange.
Hi, no I didn't get a print out, it was so long ago that it's only in later years that I have been asking for the results when I have a blood test. At the time they were testing for Lupus and rheumatoid arthritis, and the doctor said I only had one positive antibody, which was to do with the thyroid.
That's interesting but also shocking that he didn't explain which one. How long after removal was it? I wonder if they could have still been dropping?
Can I ask did you have the removal for hashi's or something else?
Hi, yes I had it removed for hashi's, only because the lump on my throat was so prominent and was restricting my swallowing. It was 10 years after the removal that the doctor said I still had a positive antibody.
I'm having difficulty swallowing but they just tell me it's post nasal drip. I feel like there's always stuff at the back of my throat I can't swallow like something's blocking it.
Did they send you for an ultrasound to find that out or was it obvious?
Thanks x
Hi, the doctor felt my throat and told me that was what it was, then sent me for an ultrasound. I didn't have it removed it straight away, but it got bigger and was more difficult to swallow, and I was afraid to leave it any longer in case it got bigger still.
Yes, but they wouldn't know that unless they tested for it. So, why would they test thyroid antibodies if they knew you didn't have a thyroid - especially as they were looking for lupus! Doctors say some really stupid things, at times. I take everything they say with a pinch of salt. 
I didn't realise you could get graves and hashi's at the same time. If the hashi's antibodies go away when the thyroid is removed, then it must be graves - that's if it is to do with the thyroid, it's making me wonder now!
Why did you have the thyroid removed?
Hi, it kept getting bigger, and was difficult to swallow.
OK so that doesn't tell us much about antibodies.
Thank you I think I'd have it removed now if they'd let me!
Just increased to 100mcg but my most recent ones were:
Tsh 2.52 (0.27-4.2)
T4 14.7 (12-22)
T3 3.78 (3.1-6.8)
I was near optimal on 75mcg just t3 was a little below top quarter of range but it only lasted 3 months then I went gluten free and my antibodies started to increase again. I just want to be stable and feel well for a while.
I'm still gluten free, have b12 injections 12 weekly, supplement vit d which is near 100, ferritin was slightly on the lowsr side but iron "healthy high" so don't want to supplement that. Also been diagnosed PCOS in December which is what my endocrinology appointment is mainly for so symptoms could be due to that. I just want to go armed so I get some answers x
With those results no wonder you don't feel well. Your TSH is too high for someone who is hypothyroid, and your Free T3 is too low. You need an increase in dose.
Doctors think a TSH anywhere in range is fine and dandy. But clued-up patients have realised that Free T3 level is the best indicator of wellness. People have their own sweet spot for Free T3, but usually on Levo people feel best with a level somewhere in the upper half of the range i.e. roughly 5 - 6.8.
Edit : Just twigged that you have had an increase in dose. Wait 6 - 8 weeks from when the dose was increased and then get a blood test done.
Thank you
Will do, just getting fed up of it. I thought I was doing well on 75mcg but it only lasted 3 months then I increased to 88.5mcg tested last week but my tsh had got slightly higher and my t3 the lowest its been since diagnosed.
Feels like fighting a losing battle x
You need to keep that TSH suppressed when you have Hashi's. When the TSH tries to stimulate the thyroid, it also stimulates the immune system, and the immune system attacks. To even out the swings, and slow down the destruction process, you need the TSH suppressed.
Oh really? I hadn't heard that before but it makes sense. I doubt any gp or endo know that though?
I've really been considering starting to self treat but I'm worried about the nhs refusing to treat me any more and planning pregnancy
Thank you I've learnt a lot x
Forgot to add this is the lowest my t3 has ever been since being diagnosed x
Salphy, in theory the Hashimoto's should kill your thyroid and the flares should stop. I hate to distress you but I have been waiting 25 years for this to happen. I still get flares. I know stress is one of my triggers so I try to avoid it but you can't live in this world and not be stressed occasionally. I haven't figured out if there are other triggers and what they are. I've also considered asking if they would just remove my thyroid but I'm a little leary of doing that. Don't know why.
I feel the same! I'm 26 and the next 50+ years with instability and flares doesn't seem like fun! I'm considering and currently mid-applying for other less stress jobs to come away from physiotherapy but it's what I've worked hard for and feels like such a waste but it's killing me x
I recently started taking low dose naltrexone (LDN) and it shows promise. I almost immediately had relief from brain fog, lack of concentration and poor memory. I’ve been told it will reduce the severity of the flares. I will reserve judgement on that for six to nine months to see how it does over time. You may want to try it once you are on an optimal dose of thyroid hormone if things don’t improve for you.
Good for you! Low dose Naltrexone cut my antibodies almost in half! From the 130’s to 70’s in a year I take it at night with 300 mg Alpha Lipoic Acid which improves its efficacy 😊
Thank you. What is LDN? Is it a kind of thyroid hormone replacement or something to be taken alongside?
I always thought it was a version of t4/t3 combo but sounds like its something else x
Naltrexone in large doses (50 mg) is given to opiod addicts to help combat addiction. In Low Dose (4.5 mg) it shows promise for use in autoimmunity and chronic pain. This is controversial, however, and is considered experimental and "off-label" by the medical community. It has not yet been clinically proven. I see a functional medicine doctor who prescribes it for me. I have to take the prescription to a compounding pharmacy.
Hashimoto's antibodies do not start out high and continually come down until they disappear. They will go up and down depending on your flares. This is something I learned recently as I experienced a rather severe flare of symptoms and right after that my antibodies went even higher than they were when I felt my worst. Twenty-five years and I'm still learning.
Actually, they do start out high. Because Hashi's starts with a 'hyper' swing - which is why so many people are diagnosed with Grave's when they actually have Hashi's - and the antibodies come in to clean up the mess afterwards. But, they fluctuate all the time, so no one test is going to give a definitive number.
Yes, I guess I wasn't clear. They start out high but my point was they do not just keep coming down from there as time passes. The antibodies go up and down depending on the flares. Kind of like going in and out of remission.
As I said, they fluctuate.
How much do you take? Rosie_P
Keep us updated how you get on where do you get it from? X
Can you explain what a flare is like? Do you get them more often when you are first diagnosed?
Dave, so sorry for the delay. I meant to answer you and then forgot. (Typical Hashimoto's!?!) When I have a flare I experience:
Abrupt worsening of fatigue
Unexplained weight gain
Malaise or depression
Sudden worsening of joint pain, muscle pain, and weakness
Anxiety, jitteriness, and racing heart
Abrupt onset of brain fog and difficulty concentrating
Digestive issues or changes in gastrointestinal function
Hot flashes or difficulty regulating body temperature
You can read about Hashi's flares in this article.
holtorfmed.com/can-thyroid-...
Hope this helps!
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