I am due to have an ultrasound scan next week to check whether I have hashimotos disease. I have been waiting for this scan for almost 2 years. My thyroid antibodies have never been out of range - my last test in March this year showed they were :
When I last saw the endo he said that although my antibody levels are low it is still possible that they could have declined to low levels from a 'high point' where the gland was under attack.
Does anyone have any advice about what to ask the sonographer about sending images to the consultant [as opposed to her simply telling him my thyroid is normal] or anything else I should ask while I am there. Do sonographers know what a thyroid gland affected by hasimotos looks like?
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I believe these are examples of images taken after ingestion or injection of radioactive pertechnetate. Often referred to as nuclear scan or uptake scan. This type of scan is done to specifically see what parts of the thyroid are working, non functioning or hyper functioning as an ultrasound can’t determine function.
An ultrasound scan does determine the size & health of the thyroid. Detect any nodules or any growth beyond the normal area, eg behind breastbone. It can also indicate quite accurately from the appearance if the thyroid has been damaged from autoimmune attack.
Sometimes radiographer will share some information about what is learned but often they state all will be reported back to GP. There’s nothing to stop you asking.
Usually the images are viewed by specialist and report sent as a summary conclusions. Recommend you obtain a copy the report. I view mine on online access. Or they can be sent direct from the hospital department.
Thanks PurpleNails. My ultrasound was ordered by endo so I would imagine that results would go back to him as opposed to GP [who knows nothing about thyroids - so he told me]. How would I get to see a copy of the report? I can remember a while back reading on here something about asking the radiographer to send a screen shot of the ultrasound image so that he can see it for himself as opposed to relying on the radiographer's report - can you or anyone else confirm if that can be done?
Most endocrinologist have department secretaries who should help. I speak to mine more that than the medicinal staff. The radiology department should also be able to arrange a copy, but they may argue it has to go to the referring doctor to view first so It may just be simpler to go via them. Failing either of those most hospitals have record departments, usually listed on their websites. Last year I tracked down a 7 year old blood test quite easily by emailing back a form with 2 lots of ID. I was emailed back a few few days later. I’m sure it would be the same for images too and much easier it recent with accurate dates etc.
Whenever I have had an ultra sound on my neck (3 times now) I’ve always had the monitor angled away. I can’t say I ever asked to see it or take a screen shot so I don’t know how you would get on or reason they might refuse.
If you've had Hashi's for such a long time that your antibodies have permenantly dropped - which means that your thyroid is dead - then no way will it look normal. The sonographer will know.
Thanks greygoose. I really don't know whether I have hashis or not - I am definitely hypo. My antibodies were never checked when I first became ill over 20 years ago and it is only in the last couple of years, via DIY testing using Medichecks, that I have had my antibodies tested - hence endo hypothesis that antibodies might once have been high but are now low. My sister has hashis - my mum might have it but has never had her antibodies tested, and in the extended family circle there is quite a lot of hypo - so strong genetic component. I did recently see a doctor privately in response to my most recent private blood testing and he thought I didn't have hashis, so it would be good to get confirmation one way or the other from the ultrasound.
But, do you never - or have you never had - 'hyper' episodes, when your Frees have suddenly gone very high and your doctor has accused you of 'abusing' your hormone? That would be a real give-away.
Very good question greygoose, and one that crossed my mind as I was in the process of replying to you, and it is hard to answer definitively in my case.
I have been on T3 for about 18 months now, and in that time period there were a couple of instances of what you could describe as feeling like "hyper" episodes, although there were never any blood tests done at the time to confirm whether the frees suddenly went high which would confirm a hashi type of swing. I can remember it happening once last summer after I increased my dose in line with the normal timetable for raising and it resolved when I dropped my dose downwards - at the time I put this down to not needing an increase because we were in a heat wave and there was something I read on here about "seasonality" [needing more hormone in winter and less in summer]. The other time it happened was earlier this year and at the time again there were no blood tests to confirm high frees and when it was happening there was debate about whether it was "pooling" due to low iron and low cortisol (which is currently being treated), but at the back of my mind I wondered could it be a hashi 'swing'? I know that my sister does get hashi 'swings'. My feeling was that the T3 dosage I was taking was too high considering my ferritin and cortisol were too low and that what I was experiencing was an adrenaline surge which I described here if you scroll down to my reply to humanbean:
Based on what I describe there you might have a better idea than I of whether that was a hashi hyper episode and I'd be interested to know what you think.
I have never been accused of 'abusing' my hormone by a doctor, but I know what you mean, as I worried myself sick that what happened to me in January was somehow my fault. At that time I was taking my dose all in one go early in the morning; I have now switched to multi-dosing T3 only throughout the day, alongside taking ACE for the low cortisol, and so far have not had a problem - if anything the problems have been due to being hesitant in raising and staying on a dose for too long before raising to next level.
I am on 50mcg T3 but the doctor I am consulting at the moment wants me to switch out a lot of my T3 for 50mcg of T4 with about 15mcg of T3 (although he does promise that in time that dose of T3 will go up) but I am very reluctant to do that at the moment as I have a lot of digestive problems and am worried about what would happen if I don't absorb or convert the T4 well. I have also been advised by another source that while on ACE it is better to stick with T3 only. The ACE is definitely helping, but the digestive problems are the one symptom which doesn't seem to be responding and if anything is getting worse.
It would be good to know one way or the other whether I had hashis - obviously I'd prefer not to have it - and so the ultrasound scan is important and I really don't want it to get "missed" by me not asking the right questions. All the problems with my health have been "missed" for over 20 years despite every best effort on my part and I don't think I can bear it to be "missed" much longer. Sorry this reply was so long!
Everybody's experience of Hashi's is different, of course, but I would say that it does sound as if you have it.
I am on 50mcg T3 but the doctor I am consulting at the moment wants me to switch out a lot of my T3 for 50mcg of T4 with about 15mcg of T3 (although he does promise that in time that dose of T3 will go up)
My advice is: don't do it! They make these promises but almost always find a reason not to keep them. I would not trust a doctor as far as I could throw him if he suggested this sort of thing. It just shows he doesn't really know much about thyroid, but thinks that everyone should be on levo! At best, I would agree to add in 25 mcg levo, but keep my T3 where it was!
It would be good to know one way or the other whether I had hashis - obviously I'd prefer not to have it
Why? If you're hypo, what difference does it make what caused it. It can't be reversed, anyway.
so the ultrasound scan is important and I really don't want it to get "missed" by me not asking the right questions.
In my experience, there's not much point in asking the sonographer questions, anyway. They are rarely very forthcoming with information. They prefer to send a report to the prescribing doctor with all the details. So, I don't really see what questions you could ask. Unless it's a direct: is the appearance of my thyroid suggestive of Autoimmune Thyroiditis? Then they can say yes or no, if they're so inclined. But, the technical details of a scan will probably go straight over your head, because they have a language all of their own. lol It's the endo that receives the report than you need to question.
Thanks for the advice re the scan and also re the T4. To be fair, the doctor I am consulting with has a wife and daughter with hashis, which he says was the inspiration to focus on this area of medical specialism so he could help them, so you would like to think that he does know something about hashis, and I think he is genuine in his intent that the T3 would be raised over time; he said he wanted me to take the 50mcg T4 dose because my FT4 was below the bottom of the range and he said that without providing T4 my thyroid gland would get "lazy".
I am on 50mcg of T3, so if I was to take 25mcg of T4 what would I drop my T3 down to (so that my total combined dose would still equate to the 50mcg T3 I am currently on)?
I am terrified of getting worse than I am at the moment [not very well at all really] so can I also ask, if I find that adding the T4 even at 25mcg doesn't go well, and I wanted to revert back to my former dose of T3, how quickly or abruptly could I do that (I would imagine symptoms getting worse would tell me fairly quickly that the T4 wasn't working for me)?
he said he wanted me to take the 50mcg T4 dose because my FT4 was below the bottom of the range and he said that without providing T4 my thyroid gland would get "lazy".
Oh, dear no!!! What on earth is he talking about??? As you've been on 50 mcg T3 for some time, your thyroid isn't working at all. It's not lazy, and even if it were, taking T4 wouldn't alter that. I'm afraid that's rubbish. The exogenous hormone has no effect on the thyroid gland at all. It's just that with the lowering of the TSH, meaning less stimulation to the gland, the thyroid stops working.
I am on 50mcg of T3, so if I was to take 25mcg of T4 what would I drop my T3 down to (so that my total combined dose would still equate to the 50mcg T3 I am currently on)?
It is normally taken that 25 mcg T4 equals 5 mcg T3. But that's only a rough estimation because it is impossible to know exactly how much of that T4 you convert to T3. And without knowing that, you cannot know how much T3 equals how much T3 FOR YOU personally.
can I also ask, if I find that adding the T4 even at 25mcg doesn't go well, and I wanted to revert back to my former dose of T3, how quickly or abruptly could I do that
It would take at least six weeks - maybe longer - to feel the full effects of the change in dose. But, you might feel symptoms coming back sooner than that. Personally, I would change back as soon as I started feeling worse - actually, I would never have agreed to the change in dose in the first place! But, then, I was on T4 only for years, getting worse and worse, so I know levo doesn't suit me.
It is normally taken that 25 mcg T4 equals 5 mcg T3. But that's only a rough estimation because it is impossible to know exactly how much of that T4 you convert to T3. And without knowing that, you cannot know how much T3 equals how much T3 FOR YOU personally.
So can I check, if I read you correctly, everyone metabolises the synthetic hormones in a way which is individual to their own metabolism and there isn't a "one size fits all" conversion - in which case is it going to be a case of 'trial and error' if I introduce the T4 in terms of how much T3 to take out of my current dosage?
My tablets are 25mcg which I can split easily into either halves or quarters with varying accuracy - the quarters are rarely equal - so the lowest I could split a tablet into is 6.25mcg.
To date I have been reluctant to take the T4 because I have concerns about conversion and absorption. However, I have severe problems with my digestive system - my poor digestive system is very hypo and I am finding that this is more so when a T3 "wears off" as it were. I am dosing 4 times per day 6 hours apart and as I get into the last hour and a half of that 6 hour period I am experiencing a lot of digestive pain which dissipates a bit when the next dose kicks in. I am thinking now that if I was taking the T4, or at least trying it, then provided I convert it well then there would be some consistent T3 in the background all the time which I could then supplement with my T3 dosing, so that my digestive system might be less hypo at those times when the direct T3 is wearing off.
I also came across this article - much of which with my current foggy brain I found hard going,
but it did contain this statement which got me thinking:
"The more T3 hormone you take in a given dose, the lower the percentage of T3 hormone binds to receptors in cells. In the absence of circulating T4 in blood, deiodinase enzymes are not occupied by the labor of T4 deiodination. A higher percentage of T3 is converted to T2 hormone by deiodinases D1, D2 and D3 before it can bind to receptors"
If I read that correctly, in my case there is likely very little circulating T4 in my blood stream, so is it possible that that being the case a higher percentage of my T4 is being converted to T2? and if I did take some T4, even starting with the 25mcg to see how I got on with it, might that then stop that process, enabling the T3 to get to bind to receptors? If anybody can shed some light on this for my very foggy brain it would be a huge help.
It's always a case of trial a error. There are no abolutes where thyroid is concerned, and we're all different.
at those times when the direct T3 is wearing off.
T3 doesn't 'wear off'. It's not an aspirin. The half-life of T3 in the blood is 24 hours, but what gets into the cells lasts three days. But T3 doesn't do anything in the blood, it's only active once in the cells.
"The more T3 hormone you take in a given dose, the lower the percentage of T3 hormone binds to receptors in cells.
I'm not sure how true that is. Sometimes the receptors need flooding, saturating with T3 before any goes in.
If I read that correctly, in my case there is likely very little circulating T4 in my blood stream, so is it possible that that being the case a higher percentage of my T4 is being converted to T2?
Did you mean to say 'morre T3 is being converted to T2'? Because T4 cannot be directly converted to T2, it has to be converted to T3 or rT3 first.
But, I cannot reply to that question because it's the first time I've ever heard of such a thing, and I just don't know. I just know that splitting doses of T3 doesn't suit everyone - me for example. I feel better if I take it all at once.
"T3 doesn't do anything in the blood, it's only active once in the cells."
When it is active once in the cells, do you know how long that "activity" lasts for?
Yes I did mean to say a higher percentage of my T3 is being converted to T2 - a typo on my part. If that hypothesis is correct as posited in the article I linked to, that is one possibility for what is happening - which might point me in the direction of a trial of T4.
Alternatively,
"Sometimes the receptors need flooding, saturating with T3 before any goes in."
To achieve the saturation with T3 that you are talking about would involve taking a single dose of T3 once per day - is that correct? So it is a case of either trialling a single dose of T3 to see if it makes any difference to the problems I am experiencing, or switching out some of my T3 dose to make room for trialling a dose of T4, or indeed a combination of those 2, some T4 and single dose of T3.
I think the best place to start might be with a single dose of T3 to see if that makes a difference before resorting to any T4.
I usually take my first T3 dose at 6.30am. If I was to switch to a single dose, at 6.30am tomorrow, would I have to then not take the remainder of my doses today [another 2 doses of 12.5mcg each due 6pm and 11.30pm]? to avoid being over medicated?
No, I don't see why. Just continue today as normal, and tomorrow take it all in one go. You're not on a very high dose of T3, are you. I don't see how you could be over-medicated.
Thanks greygoose. I will try the full dose in one go at 6.30am and see how I get on. Fingers crossed!!
I'm back from the scan. The guy was a radiographer and was good. He showed me the screen and pointed out what he could see - there was no enlargement or shrinkage but he could see evidence of past thyroiditis although he said there was no active attack going on at the minute, and while he couldn't be definitive (endo has to do diagnosing bit - he will send screenshots to him along with his report) he said that the gland was coarse and grainy looking which could be indicative of hashis. So I would imagine if they had done this scan over 20 years ago I wouldn't have had diagnoses of fibromyalgia and ME/CFS "we can do nothing for you" and if I had had this scan done then there would have been things I could have done in the intervening period to stop myself getting worse. Very frustrating as you know more than anyone.
No, I don't think there was anything you could have done. The Hashi's will always win in the end. The only treatment is thyroid hormone replacement, and that is for the resulting hypothyroidism, not the Hashi's itself. There is no cure for Hashi's.
Thank you for this SlowDragon. I read the first link and some of the comments resonated with me like the difficulty swallowing large capsules and choking on my own saliva at times and the comment "Doctor showed me the scan of the left lobe which looked like swiss cheese." so if I ask the radiographer if the lobes look a bit like swiss cheese and she confirms it would that give me a good indication that I have hashis [with low antibodies]?
The Paul Robinson link is also interesting - i have been diagnosed with ME/CFS for over 20 years. Very few people with that condition don't have a thyroid problem which doctors generally miss, and the problem involves shrinkage of the thyroid, so it will be interesting to see if the scan show shrinkage in my case .
Great article SlowDragon - thanks for linking - makes me wonder whether I have had thyroiditis in the past which might have been missed. I had an extremely sore throat which went on for years and ENT were never able to get to the bottom of - along with pain in my neck in the thyroid area but no goitre. I hope that the ultrasound can give me some concrete information.
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