thyroid has atrophied / hashi's diagnosis

hi- i went to a good thyroid doctor yesterday and, via ultrasound, learned that my thyroid is exceptionally small: about 3/10 the normal volume, with the wrong kind of blood flow and texture. the doctor diagnosed me with hashimoto's even without seeing any antibody or other tests. she said she could tell from looking at the ultrasound that the hashi's didn't start 2 or even 10 years ago, but longer. (indeed, i've had terrible symptoms since i was a child, but the hypothyroidism went undiagnosed until about 4 years ago because my TSH was always 'normal.')

i was wondering about the implications of all of this. i don't love the idea of learning that my thyroid has been reduced to a small, useless piece of junk at this point, but it also doesn't really make a difference in terms of treatment (i've been on thyroid meds for about 4 years now; am still struggling to optimize and be comfortable). my TSH has been totally suppressed for a few years. i guess i'm just wondering if anyone knows anything about this tiny thyroid business. should i worry that NDT caused the attack to increase? does it even matter anymore since the auto-immune damage has been done? (thyroids don't come back, right?) could the TSH suppression have caused the thyroid to atrophy? is 45 a bit young for this to have happened? (i keep reading that this happens 'in the elderly' or at 'the end stage of the disease.') in some ways, maybe this makes things easier: the doctor said that when the thyroid tissue dies b/c of the auto-immune attack, it releases thyroid hormones into the body (making for either euthyroid or hyper states), and that it might be easier to find a comfortable / stable medication dose once these changes aren't happening.

any info or thoughts or similar experiences appreciated!

37 Replies

  • When my thyroid had an ultra-sound at the age of 55, the technician - or whatever he was - was very scathing, and said it was too small to be causing any problems!!! Well, that's all he knew!

    Anyway, it was the gland that was causing problems, it was the lack of thyroid hormones and abundance of anitbodies. And, like you, I'd had symptoms since I was a small child, but no-one had ever even thought of testing my thyroid. I had to wait until I was 55, and my gland was on its last legs. And my first thought was oh! is it anything I've done wrong???? No. It's just genes. Genes and the luck of the draw.

    Having your TSH suppressed for x number of years certainly didn't cause it to shrink. If anything, the opposite should have happened, because a suppressed TSH often suppresses antibody activity. So, I would imagine, yours had been pretty small for quite some time.

    On the other hand, if you're having problems with NDT, I think you should be concerned enough to stop taking it and change to something else. I couldn't tolerate any brand of NDT - and I tried them all except Thyroid S. It just didn't suit me. Made me so ill and I put on a ton of weight. Whether or not it's doing any damage, I doubt, but it's making your feel bad, and that's reason enough to change. I am now fine on T3 only.

    My thyroid hasn't quite expired yet. In 2013/14, I stopped taking the T3 - for various reasons that had nothing to do with my thyroid - and I survived for six months. When tested, my TSH was 35, but there was a little T4 there, and I hadn't taken T4 for years, so my gland must have produced it. I'm so proud! lol

    As for the bit about the age, well, how would they know when they just Don't think to test younger people very often. If you never test for a condition, of course it appears to be rare. That seems to be something they haven't realised yet.

    Why is your thyroid so small? Because the antibodies have eaten away at it and killed the cells (that's why you have swings, when the hormone from the dying cell floods into the blood). You're just left with a small piece of gristle. But none of it is your fault, so Don't beat yourself up about it. That's just the way it is. :( You can live very well without it. :)

  • What were your symptoms as a child? I had some, but they might have been iron depletion. More tired than my peers. Very pale. Irregular heartbeat.

  • Oh, I was never pale! That's why nobody would ever believe I was ill. But I was always ill, I got every infection going, every cold, every cough.

    And I was fat. Hardly ate, but fat. Scaggy hair; dry, cracked skin that bled in the winter. Didn't do very well at school - not until I was fourteen - was called slow and lazy. I was awkard and clumsy, fingers all thumbs. Couldn't run to save my life! I always felt I was going to fall flat on my face. Was that the early stages of B12 deficiency? Then, at 16, discovered I had vertigo, nearly passed out in the cheap seats at the Old Vic. At 12 I started heavy, painful, long-drawn-out periods Iron deficiency? (I suffered with them for years and years until I had a hysterectomy at 41.) I Don't exactly remember being tired, but I always had to drag myself around. Couldn't rush about like the other kids. And my greatest pleasure was to get on the climbing frame and hang upside down! (Still like hanging upside down.) Which, according to doctor Lowe, is a sign of low adrenals...

    I was listless, no energy, didn't want to do anything much - wasn't good at anything except writing and acting, so they always thought I was making everything up!

    Then I hit my teens! I was rebelious, always angry, picking fights with people, terrible, uncontrolable temper - threw a book at my teacher, once, when she wouldn't let me off detention for a rehearsal (fortunately, she was walking away from me at the time, and it missed her!!!) Had bi-polar been invented then, I'm sure l would have been diagnosed with it.

    To be perfectly honest, there was just nothing right about me! Looking back, I feel sorry for my parents, but then again, they did nothing to help!

    There was never anything wrong with my heart, but I've always had quite high blood pressure. So, in my heart of hearts, I really think that right from an early age, I've suffered from low thyroid; low adrenals; iron, B12 and magnesium deficiency. And no-one ever tested for anything until I was 55!

  • Cracks at the sides of the mouth in winter - sounds like B12, doesn't it. So you could have had absorbtion problems from a very early age. Throw in D deficiency in almost any English childhood.

  • Yup, I think so too! It was not the happiest of childhoods.

  • for what it's worth: i also had the mouth cracking at the sides symptom until i started taking b complex vitamins.

  • this is just awful! amazing what so many of us has been through while doctors just sat by and did nothing! (i was told for my entire life that i was 'healthy as a horse' because my TSH was always beautiful and no one tested for antibodies despite having a ton of symptoms, like you.)

  • Greygoose, my story resonates with yours. So suppressed TSH does not cause the thyroid gland to shrink? I always thought it did.

  • Well, let's just say that I've never read that or heard anyone say it.

    But, you can't prove a negative. And besides, what's the opposite of a suppressed TSH when you have Hashi's? It's a TSH that pushes the gland to work and causes the antibodies to attack, so you end up with a shirvelled gland, anyway. Plus the fact that you feel bad all the time it's happening.

    Who told you that it did?

  • My gp said that a suppressed TSH was bad for my thyroid gland. Most of my thyroid has shriveled already.

  • it's really a travesty that so many doctors are afraid to see a suppressed TSH when someone is on thyroid meds. my TSH was suppressed even on a very small dose of T4 initially, and had my doctor then been afraid that a suppressed TSH was a problem, i would have never been able to get up to a dose of medicine that resolved any of my symptoms. so much has been written now about the benefits of a suppressed TSH for some, it's a shame that more doctors aren't aware of this.

  • A lot of doctors say that, but its just ignorance. Your thyroid is shriveled due to the anitbodies.

  • thank you so much, greygoose, and i'm so sorry you had all of this hell for ten years longer than i did. thyroid 'care' is such a travesty the world over--it's just heartbreaking.

    great that you do well on t3--i know some other people who feel the same way. i tried all t3 a few years ago, after i did terribly with all t4, and it was a nightmare for me. the hardest thing to be on. i ended up, on a doctor's recommendation, combining it with NDT for a few years, and also did terribly (but thought i couldn't do any better). finally got rid of the t3 a couple months ago (am just on NDT now) and now feel a million times better, though i'm still ironing out the dose and dealing with some symptoms. treatment is such an individual thing!

    thanks for the reassurance about the TSH and about things not being my fault!

  • Your welcome, julie. I hate to hear people say they think it's their fault, because it's just not true. But I know what hell you go through when you think that. :)

  • Julie, Hypothyroidism is more common in post menopausal women and men >60 but puberty and pregnancy are triggers for women so there are plenty of young hypothyroid patients.

    Autoimmune disease can take decades before it causes enough damage to the thyroid so that sufficient hormone can't be produced and the patient becomes hypothyroid.

    Your thyroid is small because it has atrophied after Hashi attacks which destroy cells. The dying cells dump hormone into the blood which is why Hashi patients can feel hyper and hypo at the same time. As the thyroid atrophies there are fewer cells producing hormone to be dumped so the hyper flares become less frequent and intense. Suppressing TSH may reduce Hashi attacks and antibodies but, as you said, the thyroid won't repair or regenerate.

    Some members have found that NDT increased Hashi attacks but most are comfortable on NDT.

  • thank you so much for the info! does this possibly confirm that, for my thyroid to be 70% gone, the destruction started when i was a kid? i'm 45 now and have definitely had most of my symptoms since childhood.

  • Julie, I don't think it's possible to determine that but it is likely that it started when you were young.

  • thanks again. i'm still just trying to wrap my head around the fact that everything i've read says that this degree of atrophy is 'the end stage of the disease,' and that my current doctor said it's very likely been going on for more than 10 years from the looks of it, but that my ultrasound 4 years ago showed a goiter and felt enlarged (according to the doctor). it seems unlikely that so much damage could have happened in a few years, though, plus i've had symptoms for my whole life. it's just confusing because i'd gotten used to thinking that my thyroid was enlarged rather than tiny.

  • Julie, Hashimoto's attacks often cause enlargement of the thyroid gland initially but as the attacks continue the gland atrophies until eventually it becomes a peanut sized fibrous mass incapable of producing hormone.

  • that's why i'm confused--the enlargement was only 4 years ago or so, so i wonder how the thyroid could have reduced by so much in only 4 years. can't seem to square this with what the doc said.

  • although my new doc also said that sometimes what gets interpreted as a goiter isn't really--it's something strange and unrecognizable (to the interpreter).

  • Julie, the Hashimoto's probably took decades to develop before it caused you to become hypothyroid. As Hashi's attacked the gland it will have been unable to produce sufficient hormone and will have swelled as TSH flogged it to produce more. As attacks continued cells were killed off and the gland atrophied.

  • julie11,

    Many years ago, atrophic autoimmune thyroid disease was sometimes called Ord's Thyroiditis. The distinction between Ord's and Hashimoto's being the presence of a goitre, for at least some period even if short, in Hashimoto's. However, northern European white populations have been identified as being rather more likely to have Ord's than in (most of) the rest of the world.

    On the basis that the goitre can come and go and never be identified, there seems little real reason to continue the distinction and many doctors, especially outside the UK, happily call both forms Hashimoto's.

    Not having a raised TSH, despite severe atrophy, suggests to me the possibility of some degree of central hypothyroidism. That is, where the pituitary fails to produce sufficient TSH (secondary) or the hypothalamus fails to produce enough TRH (tertiary). It is my suspicion that some degree of central hypothyroidism is actually quite common. That people suffering might be OK for long periods of time, but as soon as their need for thyroid hormone rises, they fail to keep up. For example, maybe they are only very slightly hypothyroid in the summer, but a bit more so in the winter.

    Further, I suspect that in someone with some level of central hypothyroidism, their TSH might become suppressed rather more readily. Hence giving the impression they are over-medicated.

    It is often reported that in people with hypothyroidism, their pituitary can enlarge - seemingly in order to produce more TSH. That pituitary hyperplasia can reverse on adequate treatment. So it does seem feasible that continued slightly high thyroid hormone levels could result in shrinkage of the pituitary and reduced TSH output. In turn, I guess that might have an impact on thyroid size. It s all too difficult to unscramble the eggs at this stage.

  • thanks, helvella. very interesting. when i first went on thyroid meds (synthroid), my TSH did become suppressed incredibly quickly. i don't even think my dose was that high at the time. It had been somewhere between 3 and 5 just before that (but always around 1.5 for most of my life prior to that time) but i'm almost certain i needed thyroid supplementation from childhood on.

    can you clarify what you mean about central hypothyroidism and its implications? is this something separate from hashi's?

  • julie11,

    Your pituitary and/or hypothalamus may simply not be able to out out as much TSH and/or TRH as they "should". (Perhaps better to say, as would have been expected.)

    It is not possible to rule out an autoimmune cause but there often is no obvious connection to Hashimoto's. Physical damage to head and/or neck is a well-known cause.

    Have a look here:

    Just because it says "rare" doesn't mean much. I am convinced that mild central hypothyroidism is more common than has usually been recognised. And, however rare it is, some people have it!

  • interesting! I've tended to think that it's just that the TSH ranges are terribly general--i.e. one person's low TSH is another person's high, or something along those lines.

  • My Thyroid is on the small side of normal and looks perfect according to ultra sound. I have Hashi's too and terrible symptoms. TSH has only been supressed for about 3 years or so. I am not relieved by it, concerned it has atrophied due to TSH suppression. It stopped working in 2010, apparently, due to Hashi's. Would having antibodies stop it from working, even if it looks normal? I mean they see no damage.

  • would love to hear the answer to this. do you know why you're still having symptoms? (i.e. are you undermedicated or on the wrong medication?) even with fantastic looking labs (suppressed TSH, free T3 at the top of the range and free t4 in the middle) i still had a miserable time and many hypo symptoms when i was on the wrong meds or wasn't tolerating them well.

  • How do you get an ultrasound to find out about the state of your thyroid. I've never had any doc look at my throat and have never been offered an Endo app. So for 33 years I've been diagnosed with hypothyroidism. My GP told me a couple of years ago that I had autoimmune thyroiditis and said he was"sorry".

    How do I know if I've still got any thyroid? If I have, how do I know if as Clutter describes there is a hormone 'dump' happening. Sometimes if I feel a bit hyper I lower my dose of levo.....but is that the correct thing to do? My TSH is suppressed and has been for some years is that something to be concerned about?

  • hi, holmeschild. maybe an admin will chime in here, too. as for me: my first ultrasound was in america and second one in germany, so i don't know about england, i'm afraid. the first one happened when i finally saw a good thyroid doc after having seen many, many, many bad ones. he suggested it b/c he felt a goiter. i got the second one also from a good doctor after i mentioned that i hadn't had an ultrasound in 4 years and that i was feeling strange things in my neck and was worried about the previous ultrasound results--namely goiter and two nodules. i wanted to check that the nodules hadn't grown or turned into something worrisome (they were gone, along with much of the thyroid). about suppressed TSH: from everything i've read and heard from good patient sites, a suppressed TSH is perfectly healthy and even beneficial, as long as one isn't truly hyper. my first good thyroid doc actually wanted me to have a suppressed TSH b/c of the goiter.

  • I had an ultrasound in the UK last year because my hypothyroidism came on so suddenly (apparently - I realise I had symptoms for 6 months before) and my symptoms were so all over the place, the doctor to wanted to check that nothing odd was happening... The radiologist said it was shrunken like a walnut and the lower lobes had many small nodules (less than 1cm) consistent with end stage autoimmune thyroiditis. And I'm 29...

  • jeez. so young--so sorry to hear about this. thanks for the info and hope you're doing better now. (i do think i've had this since i was a kid. i just still don't really understand how an ultrasound 4 years ago could have shown an enlarged thyroid [ultrasound said: 'multi-nodular goiter] while current ultrasound showed a thyroid only about 30% the size of a normal one.)

  • When the autoimmune attack on the thyroid begins, it tends to cause swelling. I think also that, as parts of the thyroid are destroyed, the pituitary gland releases more and more TSH to stimulate what remains of the thyroid, causing the existing thyroid tissue to swell even further. However, once the thyroid has been completely destroyed by the immune attack, it shrinks back down to nothing. Not in all people though - some people seem to be left with a goitre.

    I think the speed of the overall process just depends on the severity of the immune attack and how quickly it comes on - my anti-TPO antibodies were tested when my thyroid had failed completely (TSH>100) and were still over 2000 (when normal is like 0-30 or something like that). I still don't know what triggered it.

  • thank you so much to everyone for the responses! much appreciated!

  • Hi Julie11, I'm interested that you said your antibodies increased on NDT. What was the increase and have you retested since to see if they have gone down again? I went gluten and cross reactor free for a full year before starting any meds. I reduced my TPO to 150 from 600 and my TSH from 9.3 to 6.7, FT4 from 11 to 12, FT3 4.8 (lab did not retest to see change). However 12 weeks into NDT (WP THyroid) and my antibodies have spiked to 485, which I felt in my bones as my eczema, which had radically improved preNDT and gluten free, worsened a little, there was more itching and my classic Hashi sore throat returned. My TSH is now 0.02, FT4 13.9, lab refused FT3. So a suppressed TSH has not reduced my antibodies, neither has selenium, which I started at the same time as NDT. Interested in what you have decided to do next x ps gluten is most definitely an antibody trigger, it was pretty miraculous how my symptoms improved (loss of 7inches from waist due to inflammation, weight down to 8st 7lbs, persistent migraines gone, periods regular etc), so it's a huge disappointment that NDT, whilst obliterating my afternoon slump has re-antagonised my antibodies

  • everyone is different, for sure. i never had raised antibodies, though. whether or not i eat gluten or don't, take NDT or don't, my antibodies are always very low. despite that, my thyroid has still been mostly destroyed by hashimoto's. for what it's worth, my mom's rosacea and eczema both disappeared once she got to a high enough dose of NDT. i know that Stop The Thyroid Madness says that some people experience an initial rise in antibodies when they start NDT but that, after that, antibodies go way down. for me, though, nothing ever seems to affect my antibody status (the results always show low antibodies). my doc says 1/3 of her thyroid patients do better gluten-free; for me it never made a difference. it seems like i even do better with gluten, actually--probably because i need the carbs.

  • Ah, sorry misread, thought yours has risen on NDT. I still eat carbs, sweet potatoes, parsnips, squash etc, so going gluten free hasn't reduced my carb intake. Gluten is also a histamine liberator and I'm histamine intolerant, so it's definitely helped cutting it out.

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