Hashimotos/ords: Hi folks I have read on here... - Thyroid UK

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Hashimotos/ords

BiscuitBaby profile image

Hi folks

I have read on here about hashimotos and ords thyroiditis. Having never actually been told by my gp what was wrong (I found out on here that I had an autoimmune condition after someone pointed out my antibody result) I think I must have ords as I have never had a goitre. Plenty of pain but never swelling. I read about "hashis flare" o n here and I was wondering if the thyroid behaves the same way in ords? I can't remember ever having a period recently or in the past which I could identify as a hashi flare and I just wondered if the same thing happened with the "dumping" of hormones or if it shrivelled up and gradually stopped producing hormone. (This is my understanding of hashi flare and I accept I may be completely wrong....Happy to be corrected! 🤗

31 Replies

Both hashis and ords result in the autoimmune system attacking the thyroid with the same resulting deterioration.There is no difference in treatment other than not monitoring a goitre.

BiscuitBaby profile image
BiscuitBaby in reply to Lalatoot

LalatootThanks for your reply. I find the whole thing quite complicated to get my head around. As much as the support on here is fab and lifesaving at times, I still feel aggrieved that I have to find my answers from anonymous volunteers! But i am reassured that there's nothing more I need to do....apart from wait patiently for my delivery of t3 and see if I can find wellness! Again. Not provided by gp! Thanks !

Lalatoot profile image
Lalatoot in reply to BiscuitBaby

Most of us are on here because we have not found the care we needed from the GPS and consultants so you are in good company.

BiscuitBaby profile image
BiscuitBaby in reply to Lalatoot

Yes, it took me a long time to find this and I genuinely don't know how unwell I would be now had I not stumbled upon the forum. It took a long time to post as well as I never thought my questions were valid enough. Looking back those feelings were linked to my poor mental wellbeing which was linked to being under medicated! Its always nice to feel you are not alone even if you don't post anything yourself. You'll always find something to relate to.

traet02 profile image
traet02 in reply to BiscuitBaby

Hi there I am also having terrible time with GP's and supposed expert endocrinologists. Could you please tell me where you get your T3 from and the cost. They have tried me on some brands which didn't suit so have now just said no more and back to levothyroxine. My email is traet02@gmail.com. Thank you.

tattybogle profile image
tattybogle in reply to traet02

You might want to remove your personal email for safety. We can send private messages via 'Chat' facility on here .

I was diagnosed with Hashis 22 years ago based on high anti-TPO and anti-TG levels (along with above -range TSH and below-range FT4). An ultrasound at the time showed gland of normal size. I never had any Hashi swings. In 2020, the diagnosis was changed to Ord`s after a new ultrasound showed an atrophied gland.

Hi PurpleCat71Thanks, that's interesting. I had a scan and was told my thyroid was "lumpy and bumpy" whatever that is supposed to mean! It's reassuring to hear that others have similar experiences I suppose. I was also curious about the hashi flares since I haven't experienced it. Thanks for replying!

I've never had a Hashi's flare either. 14 yrs.

I have had changes in dose though, without anything different happening like weight change etc. The highest dose of Levo I was on was 200mcg, for 6 years........the past 4 years this has gradually dropped to 112.5mcg. No idea why.

Hi Nellie237 Thank you. I suppose its just another indication of how different we all are. It's also reassuring to hear that things change without reason. Sometimes I wonder if I'm doing something wrong that I still don't feel right! Keeping my fingers crossed that adding a bit of t3 will take the edge off that feeling.

I'm glad you seem stable now! Thanks for replying!

Did anyone explain what `lumpy and bumpy` means?

My knees have always been 'lumpy & bumpy'

????????????????????????

Ha ha ha, so is my bum!

Hi PurpleCat71No....noone did. I asked but was fobbed off with a vague answer about there being nothing they could put a needle in! I took that to mean there was no nodules or tumours. I hate that I don't trust my Dr's now. When I had that halter thing when I had palpitations the Dr told me when I asked for results "your heart is erm, err, em....racing!". My heart has never raced except when I try to exercise. My resting heart rate is about 60 and drops at times to 54 when I'm in my bed! And this is when I feel the palpitations! I think Dr's assume we are stupid and couldn't possibly understand complicated medical terms!!

That´s a very strange reply...I realised years ago that most doctors know very little about thyroid disease. If you fail to get symptom-free on a dose of levo that keeps your TSH anywhere in range, they don´t know what to do so they try to dismiss symptoms as not thyroid-related...

PurpleCat71You are absolutely right. I have a referral to neurology for functional neurological disorder. Because my bloods are range so I must feel fine!!! Doesn't matter that t3 is scraping into lower half! But who cares about that???

TRbo profile image
TRbo in reply to BiscuitBaby

My heart was racing when I was under medicated with thyroid medication, when at the right level it does not race.

BiscuitBaby profile image
BiscuitBaby in reply to TRbo

TRboThanks for your reply. I find it quite fascinating how differently we all respond. I still get palpitations particularly if I've tried to exercise!

TRbo profile image
TRbo in reply to BiscuitBaby

It’s so hard to get the dosage right but for me when I slightly increased my metavive the palpitations stopped but it takes time to get it right, all the best

From my own experience I would say yes, symptoms with ords re antibodies is the same. I used to feel like I had been run over by a bus in the early days. Learned to roll with it.

HiMy gland is atrophied too. I’ve never had a goitre, but from my teens onwards (now 69) my neck was always tender, very uncomfortable when the doctor palpated it and I was never able to wear anything close fitting around it.

I found this article really helpful.

thyroidpatients.ca/2018/12/...

bookish profile image
bookish in reply to Maggie0652

Thank you for the link. Best wishes

Hi Maggie0652My Dr never touched my neck!!! They ignore the fact that it even sore. I feel a bit more reassured that others have pain. For a long time. Mines been sore for years! Thanks fir replying.

TRbo profile image
TRbo in reply to BiscuitBaby

I can’t wear much around my neck also, but when my throat and neck hurts, again I find it’s a sign I’m not taking enough medication. So difficult

TRbo profile image
TRbo in reply to Maggie0652

Yes a great article, I have fond that I can’t and haven’t been able to exercise with no thyroid gland but I can walk and potter in the house and got up to 10,000 steps a day as long as I paced myself. However if I try and walk fast or push myself with heavy work it knocks me up for days or weeks.

Me1157 profile image
Me1157 in reply to TRbo

I can't wear polo necks - or anything close, as I feel I can't breathe. What I do when I feel I've been knocked over by a bus and don't have energy, I listen to some of favorite upbeat songs on youtube. I've created several playlists and listen to them while I'm doing housework or when I set some time aside first thing in the morning. Pretty soon, no matter how bad I feel, I start bopping around and singing and forget how bad I feel. Music uplifts our souls far better than anything else. That gets me me in a more positive mood and helps me access more energy.

It has been my personal experience that the cause of hypothyroidism is probably bottom of most doctors priorities. Mine was probably caused by radiation treatment for a birthmark when I was a baby/ toddler in the early 1950s.

Certainly it’s atrophied as a scan about 8 years ago identified, as the consultant said “imagine a plum: you have a currant”. It only confirmed decades of hypothyroidism. Not that the treatment or, in recent times , lack of would be any different.

I know from reading that Ords also results in an atrophied gland but as I never had a flare of any sort or indeed raised antibodies I guess the radiation may be the cause and sixty years after being diagnosed I really have no interest. Like Maggie0562 I always felt uncomfortable in high necks and anything tight bu5 never thought of that being related to my thyroid!

Despite not having your problems I do understand your frustrations. At least we were never told more than the minimum by GPs back in the 1950/60s but enough understand and never given the derisory looks and comments that prevail at present. I did see an endo last year who suggested I had no thyroid issues but had looked up the internet, found the symptoms and had gone to my GP self diagnosed. I did point out that in 1960 there was no internet and no doctor saw an unaccompanied child.

I am glad you found a sympathetic endo to prescribe and monitor your progress with T3.

BiscuitBaby profile image
BiscuitBaby in reply to Miffie

MiffieThank you for your reply. Times certainly have changed. I wonder if it will go full circle and return to the days where a gp could diagnose hypothyroidism by sight and questions? But then that would involve the Dr listening to the answers!

Miffie profile image
Miffie in reply to BiscuitBaby

I could write a book on the downhill ability of GPs to diagnose and communicate with patients. In sixty years of hypothyroidism (and a good number seeing HM Forces doctors ) I feel I have see the good, the bad, and the frankly diabolical. I believe they no longer ‘have available time’ to listen to us. All those 10 min appointments are pants. Still we must rise above it and be the charming folk we are. x

BiscuitBaby profile image
BiscuitBaby in reply to Miffie

Absolutely, Miffie. I couldn't agree more! There are more of us than there are of them. We can't all be wrong! That in itself gives you strength!

well said

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