I am having a recurrence of silent thyroiditis(silent hyperthyroidism)-- which is transient from hyperthyroidism to Hypothyroidism, I had been normal after first episode but now I have it back again after two years , my antibodies show its not grave, but I am worried if in future it returns again What should I opt for , RAI or Surgery?.
I am 28 years old male.
Neither. Sounds as if you have Hashi's, in which case the high levels of thyroid hormones will reduce by themselves and you will become more and more hypo. Eventually, the thyroid will be destroyed, anyway, you don't need unpleasant surgery or anything, hang on to it as long as you can.
To find if you have Hashi's, you need to have your TPO and Tg antibodies tested.
Did you have your TSI or TRAB antibodies tested to ascertain that it wasn't Grave's?
Thanks a lot for the reply, my antibodies are 0.986 less than 1.75 to be concluded as graves , my issue is this is the second time am getting it .So if it repeats again i might have to go under the knife or not or should i go in for RAI , RAI sounds scary and have heard it has long term repercussions. :/
I understood your issue, but you still need to be tested for Hashi's. If it is Hashi's, then it's going to happen again and again and again. But, that doesn't mean you have to destroy your thyroid - who said you did? There's no need. There's no point. Each time you 'go hyper', your thyroid will be destroyed a little more until there's nothing left to make hormone. And, each time you 'go hyper', you will go a little less 'hyper', because there's less thyroid to make hormone.
Do you have any labs to share with us: TSH, FT4, FT3? Which antibodies were they that you had tested?
Here is my brief history:
Aug 2018
TSH: 0.02 ---0.35 to 4.94
T3: 109.17 ---- 64.00 to 152.00
T4: 8.48 ---- 4.87 to 11.71
Aug 2019
TSH: 1.26 ---0 .35 to 4.94
FT3:3.33 ----1.71 to 3.71
FT4: 1.02 ----0.80 to 1.80
feb 2020:
TSH:4.11 ----0.35 to 4.94
FT3: 3.14---- 1.71 to 3.71
FT4: 1.0 ------ 0.80 to 1.80
June 2020
TSH: 0.04 ----- 0.4 to 4.2
FT3: 4.5------------2.3 to 4.2
FT4: 2.05 ---------- 0.89 tp 1.76
TSH Receptor antibody: <0.960
Well, apart from a slightly over-range FT4/3 in June, there is nothing wrong with your results. Absolutely not evidence of hyperthyroidism. Your FT4/3 is June are so slightly over-range that they can hardly be classed as hyper. Not even high enough to qualify for Hashi's! Who on earth told you you were hyper?
I am told I am suffering from silent hyperthyroidism --- Thyroiditis --- this is the second time and if it repeats again and again I might have to take a decision how to proceed from there , My Endo has just prescribed me propranolol 20 mg LA.
Your endo is an idiot. I bet he's a diabetes specialist! On what grounds did he diagnose 'silent thyroiditis'? Which, as far as I can gather, is just another name for Hashi's but without the symptoms. Why did you see an endo in the first place? He hasn't even tested for antibodies, apart from TSI, which was negative. You do not have hyperthyroidism and there is absolutely no medical reason to destroy your thyroid.
I have to agree with GG here. On these results, there is no evidence of Graves'. You need comprehensive antibody testing for Graves' and Hashimoto's, and that doesn't appear to have been done. Hashi's is also known is Autoimmune Thyroiditis in the UK.
We have a huge crisis of competence with regard to the endocrinology profession in the UK (and certain other countries). Do not, I beg you, agree to irreversible treatment without taking much more advice from TUK, and doing your own reading.
Why did he prescribe you propranolol? Do you have palps or high blood pressure or something? If so, they are hypo/hyper symptoms. If you have symptoms, you cannot have Silent Thyroiditis, because the definition of Silent Thyroiditis is that you don't have any symptoms. So, his diagnosis is bogus, anyway.
Also, did he say you were hyper because your TSH is suppressed? Is that his definition of hyper? If so, wrong again! A suppressed TSH on its own, doesn't mean you are hyper, your FT4 and FT3 need to be very much over-range for you to be hyper.
I think that, at the very least, you need a second opinion.
GG , thanks a lot , I have much clarity now ,
Please let me know how to read my anti-TPO and anti-TG report
anti TPO : 44.50 U/ml ----- <60 neg >60pos
anti TG: 115.80 U/ml ---- 0-60 U/ml
Hi, so;
TPOab (thyroid Peroxidase antibodies) are negative -within range
and TGab (thyroglobulin antibodies) are positive -over range
that's the easy bit , what it means though ,is more complicated.
As i understand antibodies theory (so far) raised TGab show auto immune activity, but not definitively Hashimoto's, could be other reasons.
Raised TPOab is about 90% definitve for Hashimoto's, ie. there would be only 10% of Hashi's patient's without raised TPOab
So , my current (limited!) understanding of your results is you do have an auto immune component to your thyroid problem, but i'll have to do some more homework to remember what raised TGab alone could indicate.
Below is a link to a respected site Thyroid Patients Canada by Tania Smith, maybe have a look at some of her articles on antibodies .
If i find anything clearer i will add it later. It's time i tried to understand antibodies a bit better anyway as i probably have Ord's,and had TPOab's in the thousands, but never had any other kind of antibodies tested.
thyroidpatients.ca/2020/04/...
Good Hunting
Tat.
I particularly like page 2 of Tania's 'Spectrum of Thyroid Autoimmunity' article. Where she uses the analogy of a Kaleidoscope. or Telescope with 4 lenses.
I am now also re thinking my theory on 'what' i have .
If only the right things were tested often enough on us Autoimmune folk, medicine would learn how to help us much more effectively. I'm much more interested in knowing what my rarely tested antibodies and my T3 are up to than knowing my routinely tested TSH or my FBC.
Page 2;
As tattybogle says, the Tg antibodies can be raised for a number of reasons. But, as they are so far above the top of the range, and given you thyroid history so far, I think it's pretty clear that you do have Hashi's.
And, your TPO antibodies being low doesn't mean much, because antibodies fluctuate all the time. In future tests they could very well be over-range.
So, you can take it that you have Hashi's, and you do not need to have your thyroid destroy. With Hashi's, it's perfectly normal for levels to jump around, but the trend will be down-wards, towards hypothyroidism, not hyperthyroidism.
It sounds like it is mild? I would not opt for either, it could probably be controlled with block and replace. This is where you take medicine to suppress you thyroid and levothyroxine to make up the hormone deficiency.
Hello TheSammy
Neither option in my opinion - stay put, if it's not Graves, why are we even talking of disabling or removing such a major gland ?
I'm with Graves diagnosed 2003 and had RAI thyroid ablation in 2005, a treatment I deeply regret. Full details on my profile page should you wish to take a look.
I am now having to self medicate and source and buy my own full thyroid hormone replacement as the NHS do not routinely prescribe anything other than Levothyroxine.
Get your thyroid anti bodies tested and then know what, if any thyroid disease, you are dealing with.
so in case if in future I have those two options , then my i choose surgery than RAI?
Surgery is cleaner and more precise than RAI but you really need to do your thorough research on this subject, and there also a schools of thought that low dose long term AT drugs can be a way forward for Graves patients.
Professor Toft the eminent endocrinologist in his retirement year from the NHS wrote a very interesting article that you might like read and it is on this website somewhere, but I'm sorry, cut and paste, isn't my thing. The whole article is valid but your immediate question is detailed on the final page.
Entitled Thyroid Hormone Replacement - A Counterblast to Guideline and published in the December 2017 Journal of the Royal College of Physicians of Edinburgh:
It is a bit like being between a rock and a hard place - neither are ideal - one is a toxic substance that is mostly taken up by your thyroid to burn it out, disabling and destroying it without actual having the expense of surgery but this toxic substance can be taken up, to a lesser degree, by other glands and organs within your body, and you also have T3 receptors throughout the whole of your body.
The other option is to have your throat slit open - so who really wants to do that ?
Currently living without a fully functioning thyroid, which ultimately happens with both these drastic actions is difficult as the NHS does not routinely prescribe full thyroid hormone replacement and T4 Levothyroxine doesn't work effectively for some people.
You might like to read around Graves Disease, which is an auto immune disease that attacks your body, more especially, the thyroid, and it's because the thyroid is such a major gland, that the symptoms expressed can be said, in some cases to be life threatening.
Your thyroid is the victim in all this and not the cause - the cause is your immune system attacking your body.
Maybe you might like to take a look at the Elaine Moore Graves Disease Foundation website, I found it the most respected, complete, balanced platform on all things Graves and auto immune.
Hi TheSammy ,here is a link to Dr Toft's 'a counterblast to guidelines'. He's an experienced endocrinologist, and i believe he was the Queens physician when she's in Scotland.
rcpe.ac.uk/sites/default/fi...
Thank you Tatt :
just showing off my new found 'copy and paste' skills pennyannie. Thanks to SeasideSusie xx
Don't give up your thyroid gland unless you have absolutely no alternative TheSammy. The problem is , if you turn out to be one of the 10-15% who don't do well on Levothyroxine (T4), the NHS currently wont give you anything else ie. NDT orT3 to fully replace whats been removed. And it's getting worse by the year at the moment. They are in the process of taking them away from patients who have fought for years to get them and got well again. And Brexit is about to mess up the 'buying your own' option.
It's funny ( ? ) not - I'm just so cross with myself in that I can't do it, I now can't even consider this task, and I just glaze over - I know I'm dyslexic and that's now in fashion, so I'll keep playing that card until you all get bored with me !!!
Just call yourself 'retro' which is also cool nowadays .
And anyway, those of us that still use 'pen and paper' skills, will have the last laugh when the World Wide Web suffers from a viral pandemic of it's own. Or there's a return of 1970' style powercut's.
Tat
xx
TheSammy
TSH Receptor antibody: <0.960 (less than 1.75)
That is a negative result. You do not have Graves nor an overactive thyroid.
As has been pointed out, you are likely to have Hashimoto's - autoimmune thyroiditis where the immune system attacks the thyroid and gradually destroys it and where you get swings between hypo and "hyper" type symptoms.
You should not be considering removal of your thyroid or destruction by RAI.
If you have not had Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) antibodies tested and/or an ultrasound of your thyroid, then you should do as this will confirm Hashi's.
Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) antibodies,
Do let me know how to interpret the test results if I get one?
I am planning to get it very soon , I am in hyperthyroid phase now , is it suitable to test now?, Am on propranolol, so when should i stop taking it before the test?. Thanks in Advance.
TheSammy
Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) antibodies,
Do let me know how to interpret the test results if I get one?
You can post results, with reference ranges, on the forum. However, they are easy enough to read.
The ranges we often see here are:
TPO: <34
Tg: <115
So if your result is below these numbers it's a negative result, if the result is above these numbers it's a postive result. But because antibodies fluctuate you may not catch them when they're high
Also, it is possible to have Hashi's without raised antibodies, that's when an ultrasound is useful.
I am in hyperthyroid phase now , is it suitable to test now?
Yes, you can test now.
Am on propranolol, so when should i stop taking it before the test?
I can't advise on propranolol but I thought you couldn't just stop taking it and that it's one of those medications that need to be tapered off, I could be wrong though.
Hi SeasideSusie , I got my results today
Please let me know how to read my anti-TPO and anti-TG report
anti TPO : 44.50 U/ml ----- <60 neg >60pos
anti TG: 115.80 U/ml ---- 0-60 U/ml
TheSammy
anti TPO : 44.50 U/ml ----- <60 neg >60pos
As you can see, it says below 60 is negative and above 60 is positive. Your result is 44.50 so it's negative.
anti TG: 115.80 U/ml ---- 0-60 U/ml
Again, this shows that your level should be between 0 and 60, as yours is 115.80 you have a positive result for Thyroglobulin antibodies.
Raised Tg antibodies can be present in both Hashi's and Graves. As you have had a negative result for your Graves antibodies - TSH Receptor antibody: <0.960 - then it's more likely that you have Hashi's as has been pointed out in other replies.
Hi SeasideSusie ,
Thanks for your reply, I was going through some literature and Found the below ,Does this make sense?
Silent thyroiditis, also known as “painless” or atypical thyroiditis, is a clinical syndrome that manifests as transient thyrotoxicosis followed by transient hypothyroidism. It was initially described as a painless form of subacute thyroiditis, a disorder characterized by thyrotoxicosis associated with thyroid pain and tenderness. Silent thyroiditis is an autoimmune disease that is characterized by elevated levels of thyroid peroxidase (TPO) antibodies and thyroglobulin antibodies (,1).
--- reference :Scintigraphic Features of Autoimmune Thyroiditis
Charles M. Intenzo, David M. Capuzzi, Serge Jabbour, Sung M. Kim, Ann E. dePapp
2001.
pubs.rsna.org/doi/full/10.1...
2) When I had the thyroid scan when I first got this , it showed low intake, where as in Hashi-- Hashitoxicosis -- uptake should be normal or elevated right ? This makes it even more confusing.
TheSammy
2) When I had the thyroid scan when I first got this , it showed low intake, where as in Hashi-- Hashitoxicosis -- uptake should be normal or elevated right ? This makes it even more confusing.
As I've never had a thyroid scan I have no experience of them, and I have no idea what "intake" or "uptake" is referring to I'm afraid.
Your quote about silent thyroiditis makes sense.
transient thyrotoxicosis followed by transient hypothyroidism
Thyrotoxicosis = an excessive amount of thyroid hormone
Hypothyroidism = not enough thyroid hormone.
This is typical of Hashimoto's (autoimmune thyroiditis) where it tends to start with a "hyper" episode (false hyperthyroidism) then follows hypothyroidism.
When the immune system attacks the thyroid (which is what happens with Hashi's), the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings' and this is the "false hyper" episode we are talking about. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results but with silent thyroiditis it seems you get no symptoms. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return.
Unless a doctor knows about Hashi's and these hyper type swings, then they often make a false diagnosis, and because most endos are diabetes specialists, and most GPs know very little about the thyroid, then we see many, many cases of wrong diagnosis here. This is very likely what's happened to you and no way should you be considering surgery or RAI, your Hashi's will do a pretty good job on it's own.
Be aware that you cannot be forced to do anything by a doctor.
1) Nobody can force you to have your thyroid removed. You can say no.
2) Nobody can force you to have RAI. You can say no.
3) If you ever need anti-thyroid drugs for hyperthyroidism, you cannot be refused them even if you have refused to have a thyroidectomy or RAI.
I wish I had known that 2 years ago when I was “pushed” into having RAI treatment, a decision I bitterly regret.
I say hang on to your thyroid unless it’s cancerous
I agree with SeasideSusue , the antibody test shown ; TSH Receptor antibody ( TRab ) shows under range for Graves , and your FT3/FT4 results don't look to have been high enough for Graves.
But i haven't had Graves so didn't want to speak out of turn.
The OP did say in her original post that she didn't have Grave's. It was just me asked about the results. But I still can't work out why she thinks she's hyperthyroid now.
Oh yeah!Duh , the dangers of reading two posts at once.. Thanks GG
Ps She's a he
Oh, ok! Thank you. Not that gender makes any difference to anything thyroid.
There’s some good info about TG antibodies and what they might mean in this post by Dr Tania Smith who is the best on thyroid antibodies I have come across. They are a bit of a difficult area to get ones head around, or are for me. It may also explain why the endo has called it silent thyroiditis because of the nature of the TG antibodies:
thyroidpatients.ca/2020/05/...
The other really helpful Tania Smith post on antibodies has already been linked to earlier In this thread by tattybogle so you may find reading these two posts of value.
Hi @TSH110 ,
Thanks for your reply, I was going through some literature and Found the below ,Does this make sense?
Silent thyroiditis, also known as “painless” or atypical thyroiditis, is a clinical syndrome that manifests as transient thyrotoxicosis followed by transient hypothyroidism. It was initially described as a painless form of subacute thyroiditis, a disorder characterized by thyrotoxicosis associated with thyroid pain and tenderness. Silent thyroiditis is an autoimmune disease that is characterized by elevated levels of thyroid peroxidase (TPO) antibodies and thyroglobulin antibodies (,1).
--- reference :Scintigraphic Features of Autoimmune Thyroiditis
Charles M. Intenzo, David M. Capuzzi, Serge Jabbour, Sung M. Kim, Ann E. dePapp
2001.
pubs.rsna.org/doi/full/10.1...
2) When I had the thyroid scan when I first got this , it showed low intake, where as in Hashi-- Hashitoxicosis -- uptake should be normal or elevated right ? This makes it even more confusing.
I did check and that is the definition of silent thyroiditis. The TG antibodies are not destructive like the TPO so I assume that is why it is painless. I am not sure how it might affect thyroid uptake. I had atrophic autoimmune thyroiditis - I had no goitre or pain in my thyroid. I was mostly hyper at first but thought this was normal - I was always on the go - then I got bouts of hypo then hyper, with the hypo getting longer and longer until I was mostly hypothyroid with short bouts of hyper. This was over a period of c20 years. I think TRAB blocking antibodies are the major ones with this variation of thyroid disorder, but other antibodies can be present too. I was not diagnosed until I was gravely ill with it but it fits the pattern and the endo called it AAT and implied it was more unusual. I only had ultrasound on it after diagnosis and it had shrivelled away to virtually nothing to the extent it was not possible for it to be functional. I had worried it was cancer as two close relatives had that and it’s a type that is very rare. I got lucky on that one - no thyroid but no cancer either 😊
It is good yours has been recognised at an earlier stage and is getting looked at. I hope you can be sure which disorder it is, as that affects your treatment options and choices. There is lots of great support here, I’d have been really lost without this site.
hi TSH110, just out of interest, have you ever found anything with information on the difference between Ord's and Atrophic Autoimmune Tyhroiditis ? (or if there is a difference)
I never had a scan, and only had TPOab's tested. (>3000).
I never had pain/goitre.
But my TSH was only 6.8 at diagnosis with T4 still in range.
With hindsight though, i was very 'hyper' for at least one and possibly several periods in previous years. And there was a pregnancy involved just to confuse things further!
The more i read about antibodies, the more i'm wondering if i also have some TRab Blocking/Stimulating antibodies. Especially since nowadays my FT4 seems to keep rising on it's own.
Sorry I’ve been slow to respond. I have heard of Ords disease but can’t remember the details of it - I’ll check it out. I have a feeling they might be different. By diagnosis my TSH was 110 and it was nearly curtains No idea what the others were, but they said I was hyperthyroid about two or three weeks previous to this huge rise in TSH - my thyroid must have croaked and dumped any remaining hormones - I was in a right state - it was terrifying.
Gosh, assuming they got the hyper comment from your TSH being low , your pituitary must have had a busy few weeks!... i had no idea Tsh could rise so far so quickly. I remember how shit i felt with 6.8..... i really wouldn't want to find out what 110 feels like.
Did they do anything useful like an ultrasound to see what (if anything!) was left of your thyroid?
Only three months later - it was tiny and very damaged endo said it was highly improbable to have any function whatsoever. There was no cancer which was my big worry I presume you can’t have cancer in something as trashed as that no blood supply for it to feed off.
The final stages of my atropic autoimmune thyroiditis were very horrible: hallucinations, mood swings that were highly volatile, like going totally insane. An internal cold that was like being in a deep freeze I thought I was going to die of hypothermia, Itching on my shins that I’d scratch until they bled, disgusting smells everywhere and paranoia ++, horrible nightmares - and that’s just a few of them! I think of all the women that went before us dying like that when there was no treatment - truly awful. I actually felt pretty bad at TSH 6 whilst being optimised at 110 you are just getting from moment to moment there’s no possibility of any refective thought, but at 6 you are only too well aware of all the deficiencies it is still causing as normality seems as far out of reach as it ever was. So it is awful in a different way and a great torture.
It looks like Ords Is very similar but does not have hyperthyroid phases unlike atropic autoimmune thyroiditis which is also sometimes called graves hypothyroidism, it seems it starts as graves burns itself out but the damage to the thyroid persists until a permanent hypothyroid state/death is reached. I am sure Dr Tania Smith has discussed it but can’t find the pertinent blog/reference. Will keep searching and report back if I find anything.
I found it! Dr Tania Smiths blog does indeed say Ords is another term for Atropic autoimmune thyroiditis
It’s in the introduction very early on under the three types:
thyroidpatients.ca/2020/04/...
‘Autoimmune thyroid diseases (AITD) consist of three major forms, each of which has a set of synonyms found in scientific research:
Hashimoto’s thyroiditis (a.k.a. chronic lymphocytic thyroiditis,[CLT] “goitrous” autoimmune thyroiditis.)
Graves’ Disease (a.k.a. Basedow’s disease)
Atrophic Thyroiditis (a.k.a “primary myxedema,” “non-goitrous” myxedema, Ord’s disease, or even “primary hypothyroidism” when distinguished from Hashimoto’s or CLT)’
I think she also says AAT is occasionally called Graves hypothyroidism
Well done ! Thanks. Loads of other good stuff on Tania's Canadian Thyroid website too .
If only they would test for antibodies of different kind's often enough to learn something useful, instead of ignoring them because they don't do what to do about them.
And do Scans of thyroids on all autoimmune patients.
Then they might learn something interesting.
It really annoys me that they keep trotting out the 'not enough research yet ' line about autoimmune disease, while not looking at the vast amount of examples under their noses who are already going in for blood tests every year anyway.
Why not do some research on us ?!
Yes I quite agree on the research. I should be a highly interesting candidate with my family history they could learn a lot investigating me but no let’s pick a group of perfectly healthy men so we discover sweet FA about thyroid disease and can conveniently never update anything claiming the research does not back any innovation whatsoever. They are a bunch of closed minded morons who are too scared to look in case they actually had to rethink their complacent lazy ideas of thyroid disease and how to help their patients feel as well as possible. I did have the antibodies tested at least initially to get a correct diagnosis. I think the Endo was pretty on the ball but not his other staff I had the misfortune to encounter especially an Icelandic understudy who said I was euthyroid - with a TSH of over 80, the useless brainless pratt left me on 25mcg levo for three months and totally messed up my ultrasound appointment. Luckily I saw the endo the next time and he took rapid action to get my dose up and my thyroid scanned. Had I known more I would have demanded to see him not just the thyroid nurse from hell, before being put back under the gps care and asked for a trial of T3 - you could actually get it then but sadly I believed the complete bollocks the thyroid nurse told me and thought that was going to be as good as it would ever get - 2 more years of hell thanks to the nonsense she told me, before I gave NDT a go and actually started to have a life again. It was nowhere near as good as it could get - she talked utter garbage. I got much better care when I saw the endo but once I was out of TSH above 10 the last bit to get it to 0.5 was with the thyroid nurse. At least they made an attempt to optimise it not just go for anywhere in range. She told me one hormone was not correct (it must have been free t3) but tough titty I’d just have to live with it - I complained that I still felt very unwell 🙄 it fell on harsh deaf ears. I’d like to tear her off a strip now and tell her what complete rubbish she spouted and to sharpen up her knowledge and her act
How long before you started feeling better with Nutri Adrenal Extra & Nutri Thyroid supplements? Also, what should I be doing 'Diet' wise?
How long after eating can I take my afternoon dose of T3, and how long do I have to wait to eat again?
I am cured of hyperthyroidism
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