After all the advice I received from my last posts, I have upped my Levothyroxine from 100mcg x 3 days and 125mcg x 4, to 125mcg every day. I’m still also talking 10mcg of Lio a day. I’ve booked a blood draw for 2 weeks time by which point I’ll have done 7 weeks of this.
BUT meantime, I decided to do a thyroid scan. OMG! The scanner told me there and then that my thyroid was very small, and said that from what he could see, my thyroid had been struggling for many, many years. (He couldn’t quantify how many, just repeated “many, many”) I will try to reproduce some of the written report below.
If I understand this situation correctly, it is atrophic thyroiditis. And far from not being autoimmune as I have been told, it is a different form of autoimmune.
My head is swimming with it all and I have loads of questions. I guess for now my main ones are: IS this in fact atrophic thyroiditis (which I believe is also called Ord’s)?
If so, should I be doing anything different in my attempt to regain my health?
“Thyroid Ultrasound:
Both thyroid lobes appear normal in echogenicity, echotexture and outlines but small in size. It can be due to thyroiditis.
Normal vascularity is demonstrated at colour Doppler in the thyroid parenchyma.
No focal lesions are seen in both lobes.
The isthmus appears normal in thickness and echotexture; it measured 2.5 mm. The right lobe measures 36 x 10 x 13 mm.
The left lobe measures 38 x 9 x 10 mm.
No retrosternal extension of the thyroid.
A few normal-looking reactive cervical lymph nodes are noted on both sides of the neck. Biochemical correlation is recommended. An 8-week follow-up lymph node ultrasound scan is recommended.
The parotid and submandibular glands appear unremarkable bilaterally.
Conclusion:
A relatively small size thyroid gland could be due to thyroiditis.
A few normal-looking reactive cervical lymph nodes are noted on both sides of the neck.”
Written by
WaystarRoyco
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Yes, that's right, it's also called Ord's, and it's autoimmune. Have you had both antibodies tested: TPOab and TgAB? From what I've noticed on here, Ord's people tend to have high TgAB and not so high TPOab. That was certainly true in my case. So, if you've only ever had TPOab tested, that could be why you were told it wasn't autoimmune.
No, there's nothing different you should be doing. The treatment is the same as for hypo by any other cause. Although it might mean you're more likely to be gluten/dairy sensitive, so trying a diet that excludes one or the other of these two food groups might help with symptoms.
Thanks you greygoose . I’ve never tested positive for either of these, which is another thing that baffles me. Mind you, I’ve never been tested for TRAb, which I’ve read can also be part of the problem. My thyroid cannot just have self-destructed without something going on.
TRAB is for Graves', over-active thyroid. But, you are hypo. And, it's not unknown for people to have autoimmune thyroiditis - hypo - and never have over-range antibodies. Because the antibodies are not the disease, and they are not doing the damage. It's your immune system that has attacked your thyroid repeatedly and caused it to shrink. So, yes, there is something going on, and your thyroid has not self-destructed. Your immune system has killed it.
I’m blown away by this discovery. Thank you so much for explaining it. I feel I know better where I stand now.
Can I ask you another question? If the thyroid is shrunk, doesn’t this mean I’m almost totally dependent on meds? I can’t imagine the thyroid has much capacity to do anything?
Well, it might be able to manage a little hormone if, for some reason you had to stop your exogneous hormone, but I doubt it would be enough to make you well. But the only way to find out if it is still capable of making any hormone is to stop your exogneous hormone. And I really wouldn't advise you to do that!
That’s what I thought. And, no, I’m not going to ☺️. However, a year or so ago I did see another endo for a second opinion and they said that they could not see any evidence for why I’d been given a diagnosis of hypothyroidism, and that I should wean myself off meds. I didn’t because I had a hunch that was bullshit.
That’s so interesting as I was told I had Hashimotos although as I still have a thyroid so always assumed it was Ord’s. Although I have had slightly raised TPO AB’s my main antibody was always TgAb and still is but I never knew that Ord’s was more inclined to have that. I’m thinking of getting a thyroid scan. Can I ask where you had your done WaystarRoyco ?
Also interesting. I’ve stopped trusting a lot of what I’ve been told by doctors.
I did my scan at the place Thyroid UK recommend in Welbeck Street, London. Call them up and mention Thyroid UK and they’ll give you a discount. I’ll be curious to know how you get on
Ord's is Hashi's without the goitre. But, I could be wrong about the antibodies, I was just saying what I'd observed on here.
I was diagnosed with Hashimoto´s based on high anti-TPO (thyroid antibodies) and anti-thyroglobulin levels (along with a high TSH and low FT4). At the time, I had an ultrasound which showed my thyroid gland to be of normal size. That was +20 years ago. Last year, I had another ultrasound which showed an atrophied gland (volume <3.5 mL; a healthy thyroid has a volume of ca 15 mL and <5 is considered atrophic). This is confusing as I had the antibodies you have in Hashimoto´s (apparently, there are other antibodies present when you have Ord´s). But I never had a goiter which I have read is typical of Hashimoto´s, whereas you don´t have it with Ord´s. Also, Hashimoto´s does cause the thyroid to shrink, only Ord´s does. So not sure what to believe. Anyway, both are autoimmune and the end result is the same: hypothyroidism as well as the treatment.
I’m learning that thyroid issues are not as clear cut as I was led to believe by my doctors. I don’t know if you’ve read Tania Smith on this topic, but her perspective is very interesting. Here’s one of her articles:
Doctors always seem to make it sound like there is nothing to autoimmune thyroid. You just take a very inexpensive pill and you are as good as new. Like heck! Even if you were optimally treated with thyroid hormones (which is impossible since your healthy body could do it so much better than any doctor), the antibodies, from what I understand, can cause all sorts of issues. There is, unfortunately, still not enough research on AIT and what little there is, is filtering down to doctors at a glacial speed. With climate change now even the glaciers might be faster.
So I was right! Mine too is Atrophied. He said it’s only about a third of the size of a normal thyroid. I don’t have the full report yet but he said I have inflammation which is due to the autoimmune issue.
He was excellent. Checked everything especially my lymph nodes as I have Sjogrens and also did a vascular check of my artery too free of charge due to my APS. I would really recommend this place if anyone else is thinking of having a scan.
Oh wow. I’m sorry that that’s the case but equally pleased that you’ve found out. Well done on getting it checked. I know for me the other day, being told my thyroid is atrophied brought both a sense of shock and relief. At least we have a better idea of what we’re dealing with, I guess?
I likewise thought the scanner was excellent. It’s quite functional but a good service, I think. I too would thoroughly recommend them.
Edited to add: BTW, do you have raised antibodies? Have you ever tested for TRAb?
yes I said to the guy that I thought mine would be atrophied and he just said straight away that I was right, so I felt vindicated. I think this is the reason my TSH has stopped responding.
I have had raised TPO but mostly TgAb. I was tested for TRAb but they were negative but an article I read from Tania Smith said that’s quite normal unless you catch it at the right time. I’ll attach the article as it was really interesting.
I totally resonate with your feeling vindicated. It’s so affirming when we finally get confirmation of things we’ve intuitively known for years but that have been beyond our doctors’ ability to understand.
I’ve the same hunch about TSH. If we’re right, it makes even more of a mockery of doctors going by TSH results.
Interesting about your antibodies. And interesting articles. I’ve never had my antibodies show up as positive. My doctor said this meant I was not autoimmune but I now know it’s not that simple.
I imagine you’ll get your write-up today. They were pretty quick with mine.
The thyroid gland appear small in size and heterogeneous in echotexture, in keeping with thyroiditis. No focal lesions are seen in the right lobe.
No focal lesions are seen in the left lobe.
The isthmus measures 1.2 mm.
The right lobe measures 26 x 5 x 5 mm.
The left lobe measures 20 x 5 x 6 mm.
No retrosternal extension of the thyroid.
It said this was Thyroiditis in keeping with a history of Hashimotos.
He could not believe I was diagnosed 30 years ago but have never been given a scan of my thyroid, in fact he was quite cross about it and said it was awful. I feel even more cross now about the awful treatment that I got at my local hospital where I had in the end to make a formal complaint because they tried to lower my hormones so low in an attempt to get my TSH to rise that it made me really ill! Then when I said no more and they sent me for another opinion at St Thomas and the Endo agreed with me but the local hospital still refused to accept it, i refused to be treated there. Not once did they examine me, ask how I was, ask what symptoms I had, they just went on an old blood test which they even failed to update! Even my GP won’t send me back there now and hopefully now this is further evidence to back up why I was right.
It’s so hard though to keep fighting against these people and the anxiety that it causes only makes things worse. We should not have to keep paying out of our own money for tests that they should be doing either. I’ve just done my latest thyroid blood test this morning too so that was more money!
I think we might as well start our own medical service as we all know more or can find out more than most Doctors these days!🥴
Thanks for sharing the written results. I hadn’t appreciated you’d been diagnosed 30 years ago. It’s absolutely disgusting that you haven’t had a scan in all that time, and that some doctors with their stupid ideologies have at times made you more ill. It really should not be like this.
I was diagnosed about five years ago now and not one of my doctors has ever suggested having a scan. Since I found out last week what has actually been wrong with my health all these years (I’m sure going back long before my eventual diagnosis), I’ve been telling people in my life (probably boring them sh**less) and they too have been disgusted.
Will you share your results with your GP? To your point, I’m already feeling anxious at the prospect!
Once i get my blood results back this week i will share them and the scan results. Mt GP is quite helpful and has referred me to a decent Endo who is on the Thyroid UK list but it’s taking ages to come through. I was once his patient when he was at my local hospital but he left and that’s when my problems started.
I know what you mean about sharing with family, with three autoimmune conditions they run a mile if i open my mouth!🙄ive learn’t not to say anything now. My other half is very supportive though.
You must judge how you think your GP will respond if you share but if decent should be responsive given you have saved the NHS both time and money. If the results had not shown anything then it would be different but you have genuinely useful info that should be on your medical record and taken into consideration. Are you going to be referred to an Endo or are you already under one?
I’m glad you have a helpful GP. I’m still trying to build a relationship with mine. In fairness, they were okay at my last appointment. But I’d had to argue the toss with them to preserve my Levothyroxine prescription.
Part of my challenge is I have a private endo who I went to as a “last resort” as I was being fobbed off by my previous GP practice. My endo is in London and, since I moved to South Wales two years ago, my GP is here now too. But there’s a mistrust thing going on which I suspect is about professional politics. Also my endo prescribes a little T3 and my GP absolutely will not endorse that. There’s another endo on the list who is in Cardiff. I’m half thinking of speaking to my GP, telling her about the scan and seeing if I can get a referral to them.
Also have you tested for the DIO gene yet. If you can show your not converting properly, it helps with convincing them to keep you on T3. I found that when i tested and came up with one of them (cant remember which one), my private Endo wrote to my GP about the importance of me being given T3. It all adds to the picture.
Also with the evidence of your atrophied thyroid the can’t argue that there is nothing wrong, if they tried you just say well what’s causing it then and they have to admit it’s due to Thyroiditis! If the loop back issue that i sent you the link for is an issue, then you need to be looked after by someone that knows what they are doing.
I’m sure people must be bored of our conversation now so if you’d like to PM me please do. I feel i have a kindred spirit! You pushed me to do the scan something I’d been considering for months and I’m so glad i did s thank you 🤗
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