Right…another daft question, still trying to get my head around stuff:
if you have hashis and hypothyroidism too, can an increase in symptoms at times sometimes be due to the hashimotos auto immune disease being more active rather than a problem with the hypo or levo dose?
I seem to have spells when I feel absolutely like death warmed up, but then it seems to settle down again. (for inf: I’m doing a full thyroid test after Easter with MMH to check on levels.)
The ability to reply to this post has been turned off.
Thank you for your reply, so even if your thyroid levels were stable and you felt generally ok, you could actually have times when the autoimmune aspect is more active and more symptomatic?
Thank you for explaining that. Fairly recently, my bloods were pretty good and I felt generally well, but then I had a spell where I had a sore throat, felt like had flu coming, increase muscle and joint pain and crashing fatigue. I went to bed early and the “cold/flu” never developed any further and then I felt ok again after a couple of days. I had episodes like this before I was diagnosed but they came and went and didn’t kind of linger around like the usual levels of pain and fatigue…like a massive, short-lived exacerbation of general symptoms. That made me think more about the underlying disease process.
Ahhh…yes….Not optimal in the blood tests as such…there was room for improvement but I actually did feel generally well. Maybe it was more linked to not being on the right dose, but feeling well and then overdoing things too much.
Seems plausible. As plausible as saying when if thyroid is fine, you may still be impacted by a cold!
yes, like the illness itself must wax and wane with its own symptoms in the background as well as creating hypo symptoms over time. I think I’m confusing myself now…
I think anybody would be confused reading this thread. Hashi's and hypo are not two different diseases. The hypothyroidism comes about due to the Hashi's destroying the thyroid. Hashi's is the cause of the hypothyroidism. And due to the immune system attaching the thyroid and killing off cells little by little, blood levels of thyroid hormone can fluctuate causing fluctuating symptoms. But that does not mean that the Hashi's itself is causing symptoms.
Diet might help calm down the Hashi's attacks but there is no treatment as such for it. There's no known way of stopping it completely. The immune system will just continue to destroy the thyroid until it is completely dead. Diets like gluten-free and dairy-free will relieve symptoms caused by reaction to these substances but won't do anything for the Hashi's itself. And if you're not sensitive to gluten or affected by dairy, going free of them won't help anything at all.
Impossible to tell if the Hashi's itself causes symptoms of its own. But I would think not. I don't see how it would given that all its efforts are concentrated on the thyroid, not the rest of the body. What sort of symptoms would it cause? Are there any symptoms that Hashi's people experience that other hypos, due to other causes, do not? Has anybody ever even done any research into that area? I doubt it. And every hypo, whatever the cause, has his/her own personel symptom list depending on where in the body the lack of thyroid hormone is affecting them. It's not the same for everybody. And what is the point of speculation anyway? There's nothing we can do about it except get our hormone levels as good as possible for us as individuals. 
Sorry. I didn’t mean to create confusion for people. My brain goes off at tangents overthinking stuff. Thanks for your reply.
You didn’t create confusion : ) !!! There is a lot of language that is used imprecisely and incorrectly that creates the need for questions like yours. All of us have to identify then detangle the threads of our illness.
Just keep listing with your musings, blood results, and questions on dosing! Never hesitate, your questions and these posts strike a nerve with all of us, and the dialogue helps everyone!!!
Thank you! It is precisely that: “trying to detangle the threads of our illness” - spot on. I was diagnosed with fms and cfs before I found out i was hypo due to hashis and thanks to everyone on here helping me to understand it’s all becoming much clearer what may have been happening to me all these years. xx
Here here! I encourage the same JoJoloveschocolate
Thank you HSD xxx
You are most welcome. We need to as you state detangle all of it, and that could only be done effectively if we keep asking questions off each other.
Yes, I agree.
I think I need to work on saying what I mean and expressing myself better/more clearly. I suppose that will come with time. Learning, looking at research and picking up more knowledge and understanding will help me to engage with the conversation better. Or maybe I need to just let go of the wheel a bit more instead of trying to get control of what’s happening when most of it is really out of my hands! I think I’ll take a break from the forum for a bit. Thanks so much for your replies - I really appreciate your views and thoughts x
Your welcome. I hope you don’t for one as I learn a lot from your experience.
I think you’re right, the learning at the very least helps us participate in conversations about our health and care. Will it lead to anything other than what would be achieved by trial and error? I doubt it. I beginning to think with current knowledge treatment of hypothyroidism is more of art than a science.
No, I know you didn't intent to create confusion. But I just think you've got it wrong by thinking that Hashi's and hypothyroidism are two different and separate conditions. They aren't, they're one and the same. Only not everybody's hypo is caused by Hashi's, there are many, many possible causes.
Thank you for your reply, gg. I always really appreciate your posts and have learnt a lot from them. I do understand that the hashis causes the hypo, but am I right in thinking that not all hashi patients are hypo …in that some people have the positive antibodies, but they might not have symptoms and their frees are quite high in range (at that time)? And those people are then monitored for changes in the tsh and frees? Go on….tell me I’ve got it wrong … I can take it 🤣🤣 xx
(typos edited)
lol No, you're not wrong. But, if you have high antibodies, it means that your thyroid is being attacked. Because the antibodies don't just appear for no reason. They appear because there are traces of TPO and Tg in places where they shouldn't be (they should be confined within the thyroid cells). So, the TPO and Tg antibodies come along to clean then up.
You become hypo, with symptoms, when so much of the thyroid has been damaged that it can no-longer make enough hormone to keep you well. But, even then, you won't feel the symptoms immediately because the adrenals will take up the slack. But, sooner or later, the thyroid is going to be so badly damaged, and your blood levels of T4 and T3 so low, that you will be hypo. It's just a question of how long it takes. We could say that people with high antibodies will become hypo if they live long enough! And doctors saying that not all people with antibodies become hypo is just another way of avoiding diagnosis.
Basically, if there wasn't damage going on, the antibodies wouldn't be high.
Thank you for your post. I think that’s what I was getting at in my original post - that i was referring to someone in my position that had been diagnosed with hypothyroid and also found to have positive antibodies indicating hashis, rather than someone who had hashis, but no current hypo symptoms. In trying to make myself clear, I have muddied the waters by …by…well…erm…talking drivel 🤣
I'm guessing that the antibodies were there at the time of your diagnosis but just weren't tested for? That's usually the case. It doesn't change anything symptom-wise. You develop the symptoms when you are fully hypo.
The GP tested for TPO antibodies and they came back negative. Later, I came on here and was advised to test for TPO and TGAB so I did a Medichecks test myself, testing both antibodies – the TPO was still negative, but the TGAB came back positive.
And that is how so many cases of Hashi's/Ord's gets missed, and nobody cares!
FYI mine both came back positive and I have always wondered if that means I have more of attack to thyroid going on… endless questions. Let’s definitely keep asking.
No, it doesn't mean you have more of an attack, it just means that there are traces of Thyroglubulin in your blood and not just Thyroid Peroxidase, Or more Thyroglubulin that usual. But, I have noticed that those that have higher TgAB than TPOab tend to have Ord's, rather than Hashi's. Do you have/have you ever had a goitre?
Thank you for sharing this. I don’t think I do.
Then, I expect you have Ord's.
Not that it matters. The only difference is the goitre, and they're both treated exactly the same as hypo from any other cause. And it's really not that confusing once you get rid of the idea that it's the TPO/Tg antibodies that are attacking the thyroid. Because they aren't.
I have no obvious swelling in my neck, and I can’t say I ever had.
What’s the difference between Hashimoto and Ords? I’m so confused which I have now 😣
OK
I think I edited my post while you responding.
What’s the difference between Hashimoto and Ords? I’m so confused which I have now 😣
Well, I answered that question before you asked it! lol I said: Not that it matters. The only difference is the goitre, and they're both treated exactly the same as hypo from any other cause.
So, Hashi's has a goitre and Ord's doesn't.
Ah. OK.
It’s morning. This forum should come with a warning not to enter until a cup of tea at least.
I suppose if I have it’s and not hashi I wouldn’t suffer from the so called hashi swing mind?
Well, you would. I have Ord's and I was only diagnosed around the time my thyroid finally gave up the ghost - or as good as - but I can pinpoint the swings throughout my life when suddenly, for no apparent reason, my hair grew, I lost weight, had plenty of energy and was happy! I didn't understand these weird swings at the time but I do now.
Ah. So one can have ords and be hashi? You are blowing my mind today GG. Bear in mind, I have no idea what the Ords is all about. Except, I think, ords has a goiter. I probably have that wrong too.
You know, you should start giving lectures on all this thyroid stuff (assuming you don’t already)!
No, think you've got the wrong end of the stick, there.
Look at it this way: there's were people who were showing signs of hypothyroidism most of the time and then would suddenly 'go hyper'. Along came Mr Hashimoto and looked into the details and found out about the immune system attacking the thyroid and the dying cells dumping their stocks of hormone into the blood, causing the hyper swings, etc. And he described this disease and noted that one of the physical signs were a goitre. And the disease was named after him.
But then along came Mr Ord and looked into it further, due to some patients having the hyper swings but didn't have the goitre so he discovered it's possible to have Autoimmune Thyroiditis, with the swings but without the goite. So, this form of AIT was named after him.
Two variations of the same disease.
No, I don't give any lectures - except to doctors who don't even listen! And I've given that up as a bad job! 🤣🤣🤣
My brain requires bullet points and infographics. Thank you for adding to my knowledge base.
Lectures to doctors that never listen… they probably need bullet points and Infographics like me 😣
I hope I have added to it, and not confused it even further. My explanations tend to be simplistic - as someone was just kind enough to point out - but sometimes we need simplicity to start with - we can add in the complicated details when we've absorbed the basics. I do sometimes use bullet points - but never infographics - but basically I'm a story teller. That's how my mind works.
You had added to it! It’s a lot of information to digest when one is unwell, of course confusion will arise just due to this alone, and my differing learning style. As much a I like reading, I need to take notes and use images when trying to learn a new subject. I didn’t always… but these days I do. I have wondered if that was due t to a delayed diagnosis of hypothyroidism as I used to be able to soak information like a sponge.
I do love a good story teller though! It’ll take me a while to decipher this one for sure. Thank you as always 🫶🏽
You're welcome.
Ord's ... no goitre. discovered first . (1870 ish).
Hashimoto's ... goitre . discovered later .. 1912 ish ( n.b greygoose ~ ord first)
Both are autoimmune .
Meet Dr Hashimoto and Mr Ord (and Mr Graves) :
healthunlocked.com/thyroidu...
en.wikipedia.org/wiki/Ord%2...
Sorry about that, Mr Ord, my mistake!
Do people get swings in Ords as they with Hashi?
HSD,
No, Ords does the opposite as in shutting down the thyroid gland production through blocking of TSH.
Hashi swings or flares are caused by sudden release of elevated amounts of thyroid hormone as the gland is destroyed through lymphatic infiltration.
Of course it is possible to have both Ords and Hashi and then you can experience a real rollercoaster dependant upon which antibodies are dominant.
I bet I am one of those special people. I always am! 😠
Thank you for taking the time to explain all this. As I mentioned to greygoose earlier, there’s a lot for me to digest from this thread.
Time for scrabble now. Much easier on the brain!
Hi radd , i reckon we can't assume that what we are calling "Ord's" and Atrophic Autoimmune are the same thing .
I don't suppose Ord had much ability to look at antibodoes etc in his 1870's lab, i once tried to find more detail of anything he wrote , but didn't get very far
eg. there's load of us without goitre's , in fact 'lack of goitre' seems more common than having a goitre , but most of us don't have any other indications of TSBab activity in our history .. eg tsh is not unusually high at diagnosis, which would be expected if TSBab were causing the hypo.
Due to lack of research / lack of thorough and frequent testing of all antibodies , and lack of scans in patients without obstructive goitres .... there is still a lot of ' educated guesswork' involved when we are talking about Ord's/ Atrophic / Hashimoto's , clear definitions are hard to come by.
i don't think i see 2 diseases neatly fitting in 2 boxes here .... i don't know exactly how i do see it , but i definitely think there is a lot of overlap between several forms of autoimmune thyroid disease , rather like tania's Spectrum of antibodies picture .
Hi tats 👋,
Yes we absolutely can assume, as ‘Atrophic Thyroiditis’ seems to have become a replacement name for Ords due to hypothyroidism being caused by thyroid gland volume shrinkage, as opposed to the swellings, nodules and cysts associated with Hashimotos TPOAb-mediated fibrosis.
Many misidentify thyroid gland atrophy with ‘end-stage’ Hashimoto’s but there are articles (including Tanias) clearly identifying atrophy’s cause to be the blocking variety of TRAbs. In your mentioned Spectrum of Autoimmunity article Tania states ‘Atrophic Thyroiditis is aka Ords’, and your linked Wiki article above sights ‘Ord's thyroiditis is an atrophic form of chronic thyroiditis’.
As already said to HSD, yes I agree that all groups of thyroid AB’s can coexist, and most likely do. It would be simplistic to ‘box’ them, and the groups simply indicate by which mechanism hypo is induced:
Hashiomotos TGAb - results from attacks on thyroglobulin (key protein in the thyroid gland), and do not cause direct cell death.
Hashimotos TPOAb - resulting from lymphocyte infiltration destroying hormone-producing follicular cells, and extremely damaging via cytotoxic mechanisms directly involving cytokines and T cells. May be involved in blocking thyroid peroxidase activity in thyroid cells. Gland suffers fibrosis that may include cysts, nodules and swelling. Attacks can have sudden onset but fibrosis is slow.
Atrophic Thyroiditis/Ords TBAb’s blocks TSH receptors preventing stimulating of thyroid gland, and down-regulation of (TSH dependant) DI02 conversion enzyme. Gland diminishes in volume, and might disappear altogether (mine has). TBAb’s don’t hang around for years like TPOAb and have less influence on the immune system. Flares and gland shrinkage is rarely slow but can be counterbalanced should stimulating TRAb’s be present, and even cause Graves Hypo. All tissues that express TSH receptors may interact with these antibodies.
The more I read (mainly Tania) it is indicated AB labs can offer reasons for symptoms, for instance a low FT3 without elevated RT3 is highly indicative of TBAb’s presence. However, because of lack of testing and AB’s fluctuating levels, patients are left in the dark.
Tania Smith mentions Ords as being same as Atrophic in several of her blogs.
What is Graves Hypothyroidism Radd?
Just_Be
It is impossible to be biochemically hyper and hypo at the same time, and traditionally TRAB’s are considered Graves antibodies but can also be found in Hashi and Atrophic as seen in the graph tattybogle referred to in Tania Smiths Spectrum Of Thyroid AutoImmunity.
The two TSH receptor antibodies attack the TSH receptor by stimulating (as an agonist) or blocking (as an antagonist), and the balance of TBAb's v TSAb's determines whether a patient becomes hypo or hyper.
'1. Hypothyroid (if TBAb dominate) as TSH receptors are blocked,
2. Euthyroid (if both are equally present, or both disappear),
3. Hyperthyroid (if TSAB dominate) as TSH receptors are overstimulated'
Traditionally Graves is associated with stimulating antibodies that cause hyperthyroidism but now TRAb’s blocking antibodies are more acknowledged Graves Hypothyroidism is recognised when the blocking AB’s exceeds the stimulation creating a thyroid hormone deficit for short periods of time.
Therefore, in order to treat a patient correctly medics should not see Graves as a synonym for hyperthyroidism but an autoimmune condition that may manifest in biochemical episodes of both hyper and hypo. Similarly the same can be said of Hashi.
Hi radd , i think what i was trying to get across was (bear with me ... wooly headed got a cold )
if we are saying to everyone who has autoimmune hypo (TPOab / TGab +ve) without an enlarged thyroid that they have Ord's not Hashimoto's .
and then we say Ord's must have TRab involvement and is atrophic.
Then i think we may be in danger of lumping two diff things together as Ord's
I suspect significant TRab involvement and atrophy is relatively rare compared to TPOab fibrosis.
Plenty of autoimmune cases on here without a goitre ,including me , show no evidence of TRab activity within their history. no unexpectedly TSH , no flips from hypo to hyper .
So i think we are looking at
1) TPOab with goitre .......................................................... clearly hashimoto
2) TPOab without goitre... but without TRab ........... do we call this Ords ?
3) TRab with atrophy .......................................................... or do we call this Ord's ?... surely we can't call them both Ord's ?
and of course...because nothing in the body is simple
4) a mixture of the above.
Still not sure i've conveyed what i'm trying to .... might get there one day.
xx
tats,
Yes, I think I understand you.
Hope you feel better soon. Booo to woolly heads! 🤗
Ah ha , i've just found Ord's original 1898 lecture describing his thyroid findings, here : ncbi.nlm.nih.gov/pmc/articl...
The Bradshaw Lecture on Myxoedema and Allied Disorders
delivered before the Royal College of Physicians
By William M Ord M.D. , F.R.C.P
off to read it now ....... with hot lemon ..... and tissues .
well it's certainly an interesting read , greygoose , SlowDragon , helvella , Charlie-Farley , RedApple , you may enjoy reading this if you haven't come across it before . serenfach , you may like it too .... it's got sheep .
I've got through it tats. Do I win a prize? 😁
yes . congratulations , you've won a cold .... lol
only joking ... you're far too nice .... i'd like to give this cold to simon pearce
Maybe mix it with a bit of Ords relief?
(Glycerine extract of sheeps thyroid gland with arsenic and iron 😁)
Swing in ords ? ... i can't see any reason why not .. i think i've had some ,eg fT4 has gone up from 110% to 240% for a few months while on same dose , didn't make me feel hyper though, and i don't know what fT3 was doing .... i don't have a goitre so assume i have Ord's
I am definitely autoimmune ~ TPOab were originally >3000 , last time i checked they were 190 ish , i haven't 'done' anything to reduce them, i smoke , i eat gluten, and too much sugar, i have no dietary restrictions , other than 'try to stay away ultraprocessed junk most of the time and eat real food like butter, not marg, that sort of thing '
but honestly it's very difficult to find much actual proof /research /evidence of swings happening in either Hashimoto's or Ords because thyroid testing is not thorough enough or frequent enough to provide the data which catches it in the act.
* eg . the blocking sort of antibodies , associated with atrophic thyroiditis....I've never been tested .
eg . TPOab . you'd expect them to go up sharply following an attack / swing , and than gradually go down again later .. but they are not often tested after diagnosis.
eg . I might have a very shrunken shrivelled thyroid as found in Atrophic Autoimmune Thyroiditis (which may or may not be the same thing as Mr Ord was looking at, no one is very clear if there is a difference or not ), or i may have a more normal sized but knackered one that just couldn't be bothered to grow into a goitre .... but i've never had a scan because people without goitre's hardly ever get offered scans*
edited to add the above *
HealthStarDust, (& Hidden )
'What’s the difference between Hashimoto and Ords? I’m so confused which I have now'. I think there has been some confusion with the answers given to you on this thread regarding thyroid antibodies.
The goitre can usually determine between Hashi and Ords but the real diagnosis comes via which type of autoimmune antibodies you have. TPOAb and AGAb diagnose Hashi, causing fibrosis of hormone-producing “thyrocytes” or “follicular cells” through a process of gradual lymphocytic infiltration.
Ords has TBAb's (TSH receptor blocking antibody) which blocks TSH from stimulating the thyroid gland and epitomises that old saying 'if you don't use it, you lose it' so incurring atrophy. To confuse matters, all three sets of antibodies may be present but as usually not tested, patients won't know until the gland has been fibrosed or atrophied.
All elevated thyroid antibodies through various mechanisms regarding chronic inflammation and the deiodinases (thyroid enzymes) can cause further illness by preventing good T4-T3 conversion, decrease both the number & sensitivity of thyroid hormone receptors, and reduce good signalling of the HPT axis. They also predispose us to other autoimmune conditions such as RA, PA and Crohns.
Thanks Radd. More for me to decipher. The subject of Antibodies and Types of Hypothyroidism probably deserves a fresh thread dedicated to just that.
Based on what you shared, as I understand it, I have positive TPO and TGA, so this means I have Hashimoto, but I have no goitre/swelling (as far as I can tell), but in Ords people can have positive TPO, AGAB (I have not come across this before) or TBAB (again, never heard of this before either) and they don’t have a goitre /swelling but atrophy (thyroid shrivels up/wastes away).
The only way I can know for sure if I have Ords is to have a scan or test for TBAB.
Have I got it right now?
Is Ord’s a variation of Hashimoto?
Thank you so much.
types of hypo .... it's really not clear cut or simple .
Tania Sona Smith has written some good stuff about the different antibodies , check out ThyroidPatientsCanada ... look down the list for her series of post about the Spectrum of Autoimmunity : thyroidpatients.ca/home/sit...
probably in here : Category: Thyroid Autoimmunity or Category: Atrophic Thyroiditis but they've recently changed the layout of the site a bit.
testing for TBab is not usually possible outside of research setting, so you have to deduce their presence from the clinical picture over time . eg if someone had positive TRab test,( which includes both TSab and TBab) but that person is not hyper but hypo , then some of their TRab may be TBab ,
if that person then changed from hypo to properly hyper, needing carbimazole , then that maybe a switch in the level of antibodies from mostly TBab to TSab .. (or vice versa if they go from properly hyper, to hypo)
At the end of the day , no one knows much for sure , and there are no clear cut definitions in thyroid autoimmunity .
Everyone needs to remember just how much we don't know yet.
* Strictly speaking to be called Hashimoto's , it must have a goitre, because that is the form he described and was given his name... any other form of autoimmune hypo without a goitre is not strictly speaking hashimoto's, but the term has now become commonly used for most forms even in some research papers, The NHS don't use it much , they usually just say "autoimmune hypothyroidism". to include everything. *
edited to add*
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
healthunlocked.com/thyroidu... different-varieties-of-hashimotos-every-thing-you-ever-wanted-to-know-about-antibodies-lots-youll-never-get-your-head-round
(Warning ~ reading this paper will give you a headache , but it's very interesting)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
healthunlocked.com/thyroidu... thyroid-disorders-well-most-of-em
It’s not drivel, it’s called thinking aloud and it’s helpful to you and others to voice your thoughts even if they’re wrong
Thank you so much, Noelnoel. I don’t think my brain works in a coherent or logical way anymore …actually, I don’t think it ever did 🤣 I feel like I’ve been shocked awake with my hypo/hashis diagnosis and it’s made me think about what has happened to me over the past ten years…with declining health, looking for patterns or clues all the time, not being believed or listened to, diagnosed with various other conditions etc. My memory and thought processes feel so beaten up and ragged now and I’m trying to stitch it all together, make sense and understand things… like my life is some broken old bit of rubbish that’s been dragged into Bagpuss’s shop! I don’t mind being wrong about stuff at all.
I feel like I’ve been shocked awake with my hypo/hashis diagnosis and it’s made me think about what has happened to me over the past ten years…with declining health, looking for patterns or clues all the time, not being believed or listened to, diagnosed with various other conditions etc.
You are not alone in this feeling. Recently, I likened it to grieving. Grieving a life that could have been. It’s a lot to process. And, asking questions, thinking them aloud, almost always confirms what someone else has wondered but didn’t ask. So, please, go easy on yourself. Your posts help us all. So, thank you. You should see all the questions I have posted recently.
I can relate to much of what you say. My brain seemed incapable of joining the dots and clarity of thought was difficult but there’s hope; this last year or so, since getting my frees up, especially FT3, a lot of change is occurring. Memory, concentration and focus have improved tremendously. My mood is lighter and I feel happy and content
Keep asking questions, even daft ones. Keeping a journal to refer to helped me enormously because I couldn’t remember from one day to the next what I’d done the day before, sometimes even the minute before. Confusion abounded and I was chaotic. That’s all changed and I can hardly believe I’m almost the person I used to be
Hmmmm. So tpo level is relevant in the context of “damage going on”.
I read so many people say a tpo level of 50 is the same as a tpo level of 3000. Always makes me laugh !!
Well it is. I don't see what's funny. The actual level of antibodies is irrelevant once you know they are positive for Hashi's/Ord's. They fluctuate all the time, depending on how much work there is for them to do. But it doesn't mean that your disease is any better or any worse. Hashi's is Hashi's whatever the level of the antibodies because they are the result of the disease, not the cause.
So tpo level is relevant in the context of “damage going on”.
Yes. Same for Tg antibodies. But there's nothing you can do about it, so why worry about how high or how low they are.
I respectfully disagree that the tpo levels are irrelevant. That’s why it’s funny.
Especially when you’ve just written on my post that I’m experiencing a “hashis flare”.
I think most people would be glad to see their antibodies at 50 rather than 3000 because you kindly pointed out above, they are an indicator of damage going on. Damage in the form of inflammation / disease.
Have you heard of Doctor Isabella wentz? She explains it very well if you’d like to look her up?
Gosh I’ve edited this many times again, sorry !
I didn't say the antibodies were irrelevant. I said the level was irrelevant. The antibodies have a job to do and they do it. They are highest during/just after an immune system attack on the thyroid. BUT - and this is a huge but - the antibodies themselves are not doing the attacking. They are just cleaning up the blood. That's why they are higher during an attack. And once the blood is 'clean', the level goes down again.
Especially when you’ve just written on my post that I’m experiencing a “hashis flare”.
No, I said a Hashi's 'hyper' swing. I don't call it a flare because it confuses people.
So, yes, but it's not the antibodies causing the 'hyper' swing. They are there because of it. I explained how during the attack, thyroid hormones are leaked into the blood cause FT4/3 levels to rise. At the same time, traces of TPO - Thyroid Peroxidase - and Tg - Thyroglobulin - also leak into the blood, where they should not be. So, the TPO antibodies, and the Tg antibodies, come along to arrange the removal of these traces and their subsequent destruction. That is not doing you any harm, it's doing you good. These antibodies are your friends, not your enemies. They keep your blood clean. So, I don't see why it would make any difference to you if they are 50 or 300. Both numbers are over the top of the range, indicating that you have Hashi's, so what difference does it make how high over the range they are? I just don't get it.
Plus, antibodies are very specific. If it's a TPO antibody it's only going to go after TPO. Nothing else. If it's Tg antibody, it's only going to go after Tg. Nothing else. So why get in a tizzy about having these antibodies? I don't understand. It's the Hashi's itself you should be upset about, not the resulting antibodies.
I've read this several times: antibodies are bad because they indicate an attack. OK, but a letter from the gas board indicates you have a bill to pay. If it's high, you don't get mad at the letter, do you? It's nothing to do with the indicator. And if you don't pay it, you get several reminders, but that doesn't mean that the reminders are using the gas - you are! And you haven't paid. So, no point getting upset about the antibodies, they are not the disease, they are the result of the disease.
I found it really interesting ! Thank you for posting
It’s all so confusing!
Yes, that makes sense. Thank you. I’m doing a test after Easter. I’m hoping for a high tsh and a gp text telling me to increase the levo!! Oh that would really be a dream come true! 🤣 I’m only on 75mcg at the moment and have not been too bad really. Have felt like utter chaos the last week or so, but feel ok again today. Last couple of times I’ve done the fingerprick tests my tsh has been below range and my t4 shows a trend of slowly dropping. I just have an awful feeling that my tsh might never go up ever again, but my t4 will continue to slowly go down the drain. If the tsh doesn’t shift itself my gp won’t increase the dose.
Yes, I think I’m getting to grips with it more - last time I had my bloods done someone advised that although I was feeling ok, my conversion wasn’t great, but I had a long way to go with the t4 level first before thinking about adding t3. I think that I’ve just been so ill for so long that the whole process of treatment and levels will take time to maybe get right and settle down.
That is so true! The process is so slow and insidious over years and it is very easy to become acclimatized as you said. Before I started treatment I was diagnosed with CFS and just accepted that was the issue and so when things got worse I never bothered the gp because i just thought it was down to the CFS and nothing could be done anyway! When I finally tested myself because thyroid illness is in my family I had actually got to the point where I thought I was dying. Maybe that is the reason I’ve felt fairly well even though my levels are still not brilliant, just that even small level of improvement feels ten times better! I will definitely watch the t3. Thank you so much
Yes! Exactly that! I think the same - get the thyroid right and the CFS might not be an issue any more. Thanks again x
Thank you - that’s very interesting that the people with central hypo don’t report having the fluey episodes.
I wouldn't take that as gospel, if I were you. You cannot prove a negative.
Really interesting thread.
If I have gluten, I feel crappy/ flu like for say a week. Flu like = more tired, struggling, brain fog.
I assume the gluten gives the antibodies something to do and they multiply and divert "energy' from everything else.
Comes back to the old question. Am I just ill?
is it gluten or some intolerance ?
or is it my thyroid levels ?
or B12 levels/folate?
It seems poor converters are more often autoimmune as well, so is it it shortage of T3?
is it gluten or some intolerance ?
Intolerance of gluten, usually.
I assume the gluten gives the antibodies something to do and they multiply and divert "energy' from everything else.
Pretty certain that's not how it works. The antibodies are not the least bit interested in gluten. The names give you a clue: TPO (Thyroid Peroxidase) antibodies and Tg (Thyroglobulin) antibodies.
Thyroid Peroxidase and Thyroglobulin are two proteins necessary for the production of thyroid hormone. But they should stay in the thyroid. When the thyroid is attacked by the immune system, the TPO and Tg leak into the blood. So, the TPO and Tg antibodies come along and supervise their removal and destruction. Antibodies are highly specific and only do the job they are made for.
or is it my thyroid levels ?
or B12 levels/folate?
Could be both or either of them making you ill. Sub-optimal thyroid hormone levels will cause symptoms, as will sub-optimal levels of B12 and folate. And very often the two go hand in hand.
It seems poor converters are more often autoimmune as well, so is it it shortage of T3?
That's true, yes. Hashi's people are usually poor converters. And low T3 causes symptoms (and sometimes high T4 causes symptoms in some people) because T3 is needed by every single cell in your body to function correctly. When you have so little T3 that the body shuts down the receptors, or when their just isn't enough for normal function in certain parts of the body, that causes your symptoms. But as every body functions differently, everybody has their own personal symptoms list.
I am not picking fights, you can believe what you like. But, given that there's nothing you can do about it I can't see the point of upsetting people. But, if you have a solution to the problem, by all means tell us. We're all open to solutions.
I’ll do that, thank you !
I’m trying to find Radd but I’m new to this and I’m not sure where to look for them, please can you help? X
in the world of functional medicine and current science many people -including myself- are absolutely managing to halt the autoimmune process.
Yes, well, in the real world, by the time most people manage to get diagnosed, it's already too late, too much damage has already been done. As for finding the root causes, how are you supposed to do that? Being as it's so difficult to find a doctor that's in the least bit interested - or any doctor at all, these days! The majority of them just don't know enough about it to be able to 'look upstream' or anywhere past their computer screen. I don't believe in giving people false hope. I think that is equally dangerous.
As for your condescending book recommendations, I'm sure you'll be surprised to hear I've alread read Datis Kharazzian, but given that by the time I was diagnosed my thyroid was already dead, he wasn't much help to me.
Good luck with your remission. I hope it's a lasting one.
Thanks JJC for stating such a illuminating thread.
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Wondering about consultant’s comments
Wonderful appointment with endocrinologist in Harrogate!
Wondering now, still new to this.
wondering if I have long covid
I wonder if you can help?
