As I have antibodies will my thyroid stop worki... - Thyroid UK

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As I have antibodies will my thyroid stop working altogether eventually

foreversummer profile image
13 Replies

My antibodies were 1618 (0 - 100) on diagnosis. My TSH was 8 and now four months later it is 0.5 (0.3 - 4.5). My FT4 is at the top of the range and I feel pretty much OK on my low dose of 50 mcgs of levo. My question relates to what happens next with the antibodies. Do I take it that they will continue to attack and eventually destroy my thyroid completely therefore necessitating increased doses of levo as time goes by, or can the attack stop and therefore the thyroid remains in its present state without further deterioration. Many thanks for your thoughts.

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foreversummer
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13 Replies
Dannia profile image
Dannia

Hiya :)

Have you been on levothyroxine for long?? I felt fine on it (50mcgs) for just over a year before I went down hill 3 months ago.

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/t...

galathea profile image
galathea

The antibodies, keep attacking, on and off.... and the levels of them go up and down. I had mine measured about 5 years ago and they were 1727, although I have been hypothyroid for around 25 years now... so it can take years and years until they destroy the thyroid and go away....

The best way to deal with them is to treat the thyroid with hormones, with the aim of stopping the thyroid from having to work at all (according to Proff Antony toft), but many doctors don't get this, and spend years and years trying to chase the tsh as it goes up and down, with different levels of thyroid hormone. It never seems to work and the poor patients are all over the place all the time..... sometimes feeling ok but being told they aren't, then feeling rough but being told they are ok......

The danger with a low dose like 50 mcg is that its enough to effectively stop the thyroid from working but not enough to replace the missing hormones...

G

in reply togalathea

G I had antibodies above norm too (I asked for a TPO Ab test from advice here)

BUT after an op it was deemed a 'normal' reaction? Abs are there to 'mop up' stuff right? and read they're sent to try to control the system, not actually attack.

but I agree, docs don't tell folks it's usually an autoimmune disease (Hashis?) we're not to question as the treatment is the same anyway.

So G have you had them tested recently? do they take notice of any change?

Sorry forever - from what I've read (cannot say experienced as untreated) 50 is just a starting dose but glad it's helping you Jane :D

galathea profile image
galathea

Hi, no, in 25 years they have only been tested the one time. Doesn't matter, I now know why I am hypo, what more do I need to know? My thyroid isn't going to get better, so I thought the best thing to do was make sure my meds make me feel well. And they do. Officially I am on t3 and t4, but in reality i take three grains of nt per day. My money, my choice.

G x

Dannia profile image
Dannia in reply togalathea

Apparently taking selenium is good to keep antibodies at bay

stopthethyroidmadness.com/s...

rustysmum profile image
rustysmum

I asked Dr P this a little while ago and he said the antibodies often burn themselves out after a while. Sometimes destroying your thyroid and sometimes not.

infomaniac profile image
infomaniac in reply torustysmum

My antibodies were around 1600 too back in September but my GP didn't seem bothered nor suggested medication, which was fine as I didn't want any! I thought the thyroid was attacked and eventually stopped working so this is great news. I feel perfectly fine but have gone gluten and dairy free and am really interested to see if this makes any difference next time I am tested.

rustysmum profile image
rustysmum in reply toinfomaniac

I've gone gluten free too and am being retested next week. I'll be interested too to see if after my treatment and dietary changes my blood tests are any different.

infomaniac profile image
infomaniac in reply torustysmum

Are you on medication Rustysmum?

elaine2447 profile image
elaine2447 in reply toinfomaniac

In October my antibodies were over 1300 (0-60) I don't know by how much as that is the maxiumum the Cambridge hospital lab range goes to. I also started on selenium and went gluten free about six weeks ago about the same time I had the test. I don't know if it's a coincidence or not but I did a Medichecks last week and the results came back 310 (0-34). Different measuring range but roughly I estimate that antibodies have reduced by about 600+ish. My delightful GP just dismissed the high antibodies and said it was a virus. So having to go down the private route yet again. My thyroglobulin antibodies had also come down a fraction. I am hoping this is not a coincidence, still feel like rubbish with other health issues and over the range TSH (but not according to GP surgery range). I had a lady come to the house because I don't drive and she did a food intolerance test. Was very skeptical initially but she came up with some surprising results.

rustysmum profile image
rustysmum

No, just supplements from Dr P. My GP refused to medicate, or refer me to an endo and just wants to re-test every 6 months. I was last tested in June, one month after I started DrP's regime and I had made progress even after such a short time.

Ruby1 profile image
Ruby1

Hi

I also have antibodies and I was also started on 50micrograms of thyroxine about 12 years ago. I was borderline with my levels, but as i had antibodies, they decided to medicate me anyway. Within a few days I felt I had more energy, so I think it was a good move.

At one time I was increased to 75 and I am now on 100. I've probably been on 100 for about 4 years now and am pretty much fine. I don't know if it fails completely eventually.

I do have wipeout days when I feel very tired, and often these are after a day of increased exercise or effort, but mostly I am fine. I hope it works that way for you too.

Best wishes

Hi. I was diagnosed with Hashimotos just this Monday Dec 3rd and was started on levothyroxine at 25mg yesterday. I really had no symptoms apart from feeling a bit more tired than I would normally 2 months ago and my GP ran some blood tests which were repeated a month back and then again last week. My T4 was low but just in the normal range whilst my TSH has been elevated at 7.37 but my antibody count was 112 agains an optimal range being under 60. As I really had no other symptoms at all my GP said it was either mild or early or perhaps even normal for me but recommended starting on low dose levo and then re-testing weekly. Se said she'd seen a number of people who only suffer this temporarily in that the auto immune response could be a reaction to a low grade infection which my body has otherwise coped with or stress. It's too early to say of course but in the meantime I'm just doing my normal stuff which includes exercising every other day.

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