Hi everyone can u have thyroiditis but ur antib... - Thyroid UK

Thyroid UK

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Hi everyone can u have thyroiditis but ur antibodies for hashimoto thyroiditis are not positive

Samy3
Samy3

I have graves disease but now I'm not on thyroid medication but my ultrasound showed twice thyroiditis my TRAB antibodies were positive two years ago when I was diagnosed now they are borderline last year I had slightly elevated TPO but now they are under the range I get really sore eyes bad reflux with stomach pains ..really bad pain in my thyroid and same side ear ...bad headache throbbing cpainsxin my same side temple I have mildle enlarged thyroid with one 10mm benign noudle on top plus hair fall some aches and pains few other symptoms pls if u guys can help ..thanks

16 Replies
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I hope you get some answers but I'm still on carbi at present samy but I too have the same symptoms, ear pain on the same side of several nodules, swollen thyroid and feels full around the neck and tight. I have been fighting for ages with my Endo about this bloody sympton , I've had 2 scans so far but I think my thyroid is a lot worse with the symptom so when I see him in 2 weeks I want a scan ordering, good luck, I know exactly how you feel.👍

Samy3
Samy3 in reply to Rmichelle

Thanks for ur reply Rmichelle its so annoying when these endo s just look at the blood results and discharge u saying that bloods are normal and u will become hypo in future they wait for u to become hypo first then do something I know u still on carbimazole how s ur symptoms like I even emailed them saying I wanted answers for the pain not just looking at the blood results they havecnt come back to me yet

Samy3
Samy3 in reply to Samy3

What did they tell u with last two scans and what are they saying abt the pain?sorry keep asking bcs Im in a,same boat suffering with thyroiditis and don't even know what kind of thyroiditis is this

Rmichelle
Rmichelle in reply to Samy3

Lol my Endo has kept dismissing the fact that your thyroid swells up and down and says that my several nodules would not be causing any irritation, ice argued this back in may and he did say because I only had my last scan in February , he was willing to refer again to see if there's any change!! I've got lots of discomfort with my nodules and swallowing problems, choking feeling, tightness around the neck etc, breathy, same symptoms related to a goitre and nodules, I will keep pushing for further investigation, he did say one half human thing.....if you are within clinical range and normal, you can still be symptomatic and that's when they would consider taking it out, this time next year I could be looking at that

...I say sign me up now😁

Rmichelle
Rmichelle in reply to Samy3

Oh yes on both occasions they said scan was in keeping with hashimotos/graves as I have both, he said his guess would be the hashi will win out , I have chronic damage.x

Samy3
Samy3 in reply to Rmichelle

Bless u chronic damage ...I think that's what happening with my thyroid here on health unlocked is u r the one exactly same symptoms same problem like me and couple of other ones on fb thyroid UK exactly going through like us I even talk to them on messenger too bcs we all desperate to get the answers one if the lady on fb she recently joined and said she had sciatica so her specialist for that condition sent her to the other one when other one tested she told her ur thyroid is enlarged they did the scan found 1.2 cm noudle and they did biopsy it was cancerous so they took her whole thyroid out last Friday she did not have any usual thyroid symptoms apart from she had pain and she could not loose wait ...we have symptoms and diagnosis but still no luck

Valarian
Valarian in reply to Rmichelle

I suppose the hope is that the Hashi’s wins sufficiently to keep the Graves’ under control without making you hypo - however, I guess the nature of Hashi’s is that eventually the thyroid will be too damaged anyway.

Rmichelle
Rmichelle in reply to Valarian

I think you are right there V, hey do you find when you have a cold it makes your thyroid play up big time? I'm going to get bloods done very soon, I got a feeling I need to reduce to every 2 days now.

Valarian
Valarian in reply to Rmichelle

Yup, also when I get over-tired or stressed.

Samy3
Samy3 in reply to Rmichelle

Rmichelle apart from thyroid pain in ear and jaw what other symptoms u do have even u r still on carbi ...do u have any stomach issue ?

Graves’ can’t be cured, the best hope is for remission (which may or may not be permanent). 65% of people with Graves’ have positive TPO (which indicates autoimmune disease), but generally at a lower level than is seen with Hashi’s. When did you last have a thyroid function test ?

I was wondering about the pain in your eyes. Thyroid Eye Disease can happen at any time, so it may be worth getting checked out. If you struggle for a referral, you could go to a good high st optician, and explain that you have Graves’, so they know to look for any signs.

Samy3
Samy3 in reply to Valarian

Hi valarian thanks for ur reply my appointment with opthomologist is coming up in November its so weird now I'm getting really dry and sore eyes they become watery as well but right eye is really bad I got gastritis as well so many things with had gritty eye and photophobia very first two symptoms when I was diagnosed two years ago when took carbimazole all the symptoms improved tremendously I started reading again without glasses but shame it was only for a short time again getting really bad my recent TRAB antibodies are borderline

Valarian
Valarian in reply to Samy3

As it gets colder, and people turn the central heating on, it will probably get worse. So far, I’m free of TED (fingers crossed!) but main advice seems to be to stop smoking (if you do).

In another post, @Shambles was recommended as knowing a lot about TED.

Samy3
Samy3 in reply to Valarian

I been tested twice before for TED everytime they said I don't have ted I don't smoke never did my thyroid on right is so tender and I get pain everyday this new endi was useless too sorry to say that but I have not came across with any good one so fed up she admitted that my thyroid is inflamed its showing thyroiditis it has noudle on it but still answer is we will keep an eye on it which they will never do I know that...grrr

Hi, just found this thread. I feel I am in the same boat. Was told my thyroid will burn itself out but at the moment it is not over or under. My thyroid came back fine on ultrasound and biopsy but 2 years later I am.having ear pain . Online ear pain is linked to cancer so I am worrying ! Is this the same for you?

Samy3
Samy3 in reply to Jodzie04

Hi jodzie ...I have my ultrasound d done this year again in end of June which showed a 1cm nodule on top I'm waiting for my appointment with endo to ask them do biopsy yes I do get pain on regular basis and I get pain in my ear too like u I'm worried too bcs on fb thyroid forum another patient had same pain and symptoms and she was diagnosed with thyroid cancer ...that's what she told me I hope and pray that there isn't anything like that with us but ask ur doctor to do further testing my thyroid blood s normal but my ultrasounds keep showing thyroiditis and I get few other symptoms aswell how s ur blood results like ...when I was diagnosed two years ago I did have goitre which I still have but new thing is the nodule now

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