Unilateral Graves’ Disease: The Lesser Known - Thyroid UK

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Unilateral Graves’ Disease: The Lesser Known

helvella profile image
helvellaAdministrator

Thyroid issues continue to surprise at every turn. I don't think I would ever have thought of this possibility!

Unilateral Graves’ Disease: The Lesser Known

Ranadheer Gupta Manthri, Nimmagadda Ajit, Suresh Vaikakkara, B Vijayalakshmi Devi, and Tekchand Kalawat

Abstract

Background:

Here, we present a retrospective study conducted from 2009 to 2018, which showed the presence of unilateral uptake of radioactive tracer on 99mTc thyroid scintigraphy scan in 15 patients with Graves’ disease.

Materials and Methods:

All these patients had either clinical features of Graves’ disease or elevated thyroid hormone levels along with ultrasonographic features, showing either normal thyroid gland or diffuse thyroiditis. The scintigraphic features revealed increased uptake in one lobe of the thyroid gland with the other lobe being normal.

Results:

Of the 15 patients, 13 were females and two were males. The mean age of the patients was 47 years with standard deviation of 3.4 years (range 26–70 years). Eight of the 15 patients had increased uptake on the right lobe and seven had increased uptake in the left lobe.

Conclusion:

This study shows that there exists an entity called unilateral Graves’ disease which should be further evaluated.

Keywords: Assymetrical Graves’ disease, Thyroid scintigraphy, Unilateral Graves’ disease

Full paper freely available here:

ncbi.nlm.nih.gov/pmc/articl...

40 Replies

Would be interesting to know if they were left or right handed ! Are there any studies showing majority of people are not unilateral or does this mean it is likely the norm?

helvella profile image
helvellaAdministrator in reply to lidoplace

I think the paper is fairly clear that this is very unusual.

Handedness of patients is definitely a question that should be asked - and answered.

It says:

Eight of the 15 patients had increased uptake on the right lobe and seven had increased uptake in the left lobe.

But we need to know their inherent handedness as well.

lidoplace profile image
lidoplace in reply to helvella

Yes , sorry I hadn’t read the whole paper before responding - is this test done on all suspected Graves cases? Or is it like the “rare” numbers who need T3 in the UK ?

helvella profile image
helvellaAdministrator in reply to lidoplace

Half the time, we see reports of people being diagnosed with Graves without even having a TSH receptor antibody test. Let alone ultrasound, FT3, and only very rarely scintigraphy.

So there must be many who have this but in whom it has not been identified. But that shouldn't be taken to imply it is common - the paper clearly says it is rare - just that there are a lot of people in the world with Graves.

Can you break it down for me? Sometimes I have trouble understanding all the jargon and miss the point 😬 I’m only interested because my sister had Graves but refused all treatment other than Carbimazole but now presents as Hypo and yet hasn’t started any treatment. I can’t understand how she gets through the day my only conclusion is that she was hyper for so long that she thinks her Hypo symptoms are a godsend 😬 She’s the only one in the family to be overactive with the rest of us underactive, it’s just making me curious.

helvella profile image
helvellaAdministrator in reply to NWA6

Most people have a thyroid which has two lobes - left and right.

Most people with Graves, if tested, show both lobes taking up the radioactive tracer used in scintigraphy. (NOT radioactive iodine to destroy the thyroid.)

A small number of people show one lobe taking the majority of the tracer - with the other lobe looking "normal".

Quite a number of people are diagnosed with Graves and in some, it goes into remission.

Quite a number of people are diagnosed with Hashimoto's in which the thyroid is destroyed.

It is perfectly possible to have both Graves and Hashimoto's. However, when Graves is causing hyperthyroidism, the typical Hashimoto's symptoms will not usually be present.

If Hashimoto's destroys the thyroid, then Graves antibodies cannot cause hyperthyroidism.

It also seems that sometimes Graves is a mis-diagnosis of Hashimoto's in which flares can release excess thyroid hormone.

NWA6 profile image
NWA6 in reply to helvella

Thank you 😊

TSH110 profile image
TSH110 in reply to helvella

On the point: If Hashimotos destroys the thyroid Graves antibodies cannot cause hyperthyroidism.

Is that simply because there is no thyroid left to do anything hormonal anymore? Also is this why one can get other autoimmune disorders...can the Graves antibodies attack other organs etc?

helvella profile image
helvellaAdministrator in reply to TSH110

Yes - no thyroid, no thyroid hormone production. 😀

Well, don’t miss thyroid eye disease!

I do not know if anything else can be attacked. (Not that antibodies attack, as such.)

Greekchick profile image
Greekchick in reply to helvella

Hi Helvella,

My endo told me that even without a thyroid (I had a TT 11 weeks ago) you still have antibodies that remain in your system which can attack eyes or skin in future, which are the trouble areas for Graves. He did also say that it would be unlikely but could not rule out the possibility as it is handled on a case by case basis. So ...

helvella profile image
helvellaAdministrator in reply to Greekchick

I recently posted this:

Graves' Disease: Can It Be Cured?

healthunlocked.com/thyroidu...

Although we are pretty clear that TSH receptor antibodies directly cause hyperthyroidism, there seems to be less clarity about the causes of the eye disease and skin issues. Yes - they are definitely associated, but precisely what happens seems still to be a matter for research.

Greekchick profile image
Greekchick in reply to helvella

I agree - I saw the posting and downloaded it for my future use . Thanks.

bookish profile image
bookish in reply to Greekchick

Please could you tell me more about skin issues, symptoms etc? Thank you

Greekchick profile image
Greekchick in reply to bookish

Dear Bookish,

I am not an expert on this - but I understand that there is a thickening and redness of the skin on the front of the lower legs. As I did not have this problem and am not likely to develop it, I have not researched it very thoroughly. It is called Graves dermopathy. It is quite rare and the majority of Graves patients will not develop this.

Sorry I don’t have more info for you. I’m sending you positive thoughts and good wishes!

bookish profile image
bookish in reply to Greekchick

That's really helpful, thank you - and thanks for the good wishes, mine to you too!

(I don't think I have Graves, more likely Hashis, but have Livedo Reticularis and have had Granuloma Annulare and am getting some other odd burning/shearing pains and numbness in skin. I knew about eyes for hypo and hyper but hadn't heard about skin)

TSH110 profile image
TSH110 in reply to bookish

I had dreadful pretibial myxedema where my shins were swollen, the skin went taught like a drum and it itched so badly I would scratch until I bled - relief was very temporary. It used to start up around 7pm and go on for hours alleviating by the next morning, so at least it was contained in that respect. I understand it is normally associated with Graves’ disease. I have autoimmune hypothyroidism but had some symptoms more common in Graves. I also have areas of decreased sensation in my skin, like numbness. It is most noticeable in the top and centre of my back. That came on about 3 years after treatment. I still get odd bouts of itching but nothing quite as dreadful as what I suffered prior to diagnosis and before being optimised.

Pascha1 profile image
Pascha1 in reply to Greekchick

if you have any one auto immune you can get many others as Pernicious Aneamia Coellac, Lupus, Graves < Hashimotos, addisons or one of the many other ones their are quite a few. . if you get one its very likely you will get more :(

Greekchick profile image
Greekchick in reply to Pascha1

Thank you for this information. Wishing you all the best for your health and sending you positive thoughts!

ling profile image
ling in reply to Greekchick

Bingo!

TSH110 profile image
TSH110 in reply to helvella

Thanks. If those antibodies are not attacking tissue or whatever, what is their role in the autoimmune response? I ought to read your link it may explain it there. I was a Hashimotos misdiagnosed as hyperthyroid but only on 1st blood test, 2nd one showed hypothyroidism just as I had told doc was the problem. I had lots of Graves like symptoms - very thin, heart pains, anxiety, eye problems but I had plenty of the other too!

helvella profile image
helvellaAdministrator in reply to TSH110

As I understand, the immune system produces vast numbers of antibodies all the time.

What changes is which antibodies! And the numbers of each.

I certainly don't know what controls all this complex system. But I'd suspect that many of them never do anything at all.

(It is lymphocytes and macrocytes that attack cells - not antibodies.)

TSH110 profile image
TSH110 in reply to helvella

Sorry to be really thick but why do presence of certain excessive numbers of antibodies prove one has an autoimmune disorder I though they were doing the damage, perhaps they signal to the killer cells to get cracking on the relevant bits of the self? Dear me what a dunce I am! I do get it that most probably float about primed for action but nothing untoward happens to provoke them into doing their thing...whatever that is

helvella profile image
helvellaAdministrator in reply to TSH110

This is the story as I see it.

When your thyroid gets damaged - typically here we talk of autoimmune "attack" but the same happens in surgery and trauma - some of the contents of both the cells and the follicles of the thyroid spill out into the bloodstream.

The thyroid is composed of many tiny sacs (follicles) which contain colloid - which is largely the protein thyroglobulin. In the Thyroglobulin the enzyme Thyroid Peroxidase performs some of the functions of making thyroid hormone.

At least in theory, Thyroglobulin and Thyroid Peroxidase are not found anywhere else in the body.

When Thyroglobulin and Thyroid Peroxidase spill, the immune system recognises the substances and releases antibodies specific to them. Hence, Thyroglobulin antibodies and Thyroid Peroxidase antibodies.

The presence of these antibodies simply indicates that something has damaged the thyroid. We might suppose that the numbers of antibodies are related to the amounts of Thyroglobulin and Thyroid Peroxidase spilled, but I am not entirely convinced of that relationship.

If anyone thinks I am wrong, or have made mistakes in this overview, please do let me/us know.

TSH110 profile image
TSH110 in reply to helvella

Thanks that is very helpful and much clearer than anything I found on line to try and improve my understanding of what an autoimmune attack really is. I presume individual immune systems vary in response hence the enzyme or protein volume released not being directly proportional to severity of response in terms of antibody numbers. May be there are other factors too. It is very interesting and hardly simple!

Pascha1 profile image
Pascha1 in reply to TSH110

It could be something you eat that body doesnt like that sets them off, or stress seems to set antibodies off, its also hereditory,, so say you have an aunt who has Hashimotos, it could come out on you as Graves or pernicious aneamia or something else, I only found out that you can get many more attacks elsewehere if you get one,,They failed to tell me that 35 years ago,..

TSH110 profile image
TSH110 in reply to Pascha1

There’s deffo a hereditary component in my family all the women in my branch since my grandmother have had hypothyroidism bar one with Graves and 2 have had thyroid cancer (two cases per million per annum is the norm in the uk so it is pretty rare).

TSH110 profile image
TSH110 in reply to Pascha1

I used to think the itching was a food allergy but after eliminating all food it’s still happened like clock work! I thought my dogs had fleas (they didn’t) that it was a dust allergy, that it was something my boyfriend bought into the house on his skin...my explanations which seemed perfectly sensible at the time became more and more preposterous. I read later that the thyroid hormones cause complex cascades of other hormones throughout the day and night that govern our correct function so that must have had something to do with it - I could not sleep until morning which was awful as I still worked full time I would have to skip whole nights of sleeping to try and get my body back into synch but it never worked so i’d Sleep in the day at weekends so I could still function. The fact it always started up at exactly the same time every day must’ve related to some internal body clock gone awry. Also chemicals called cytokinins can be released with abnormal thyroid function that can cause intense itching so that must have been going on and perhaps the build up of mucin (hence the swollen shins) is also relevant. It seems that nobody really knows. Not just my aunt but all my close female relatives as far back as my maternal grandma have suffered thyroid disorder, two have had cancer of the thyroid and just one is hyperthyroid the rest of us are hypothyroid including the cancer ones. I never had any goitre but

others have had whoppas. My genetics have more markers for Graves than Hashimotos but my final diagnosis was atropic autoimmune hypothyrodism. I have wondered if I had Graves as well - too late to know now!

Pascha1 profile image
Pascha1 in reply to helvella

helvella . I have over range Lymphocytes what does that mean? , I have been trying to google it but cant find much on it,,, in past have had round and oval Macrocytes and borderline top of range MCH MCV bloods ,, I thought that meant either hypothyroid or B12 deficiency ? I am lucky found a good GPand am now on B12 shots every other week for that ..Ive not had blood test since starting B12 shots so not sure whats going on maybe this has corrected many things..

I do wonder if when i was hyperthyroid , I was graves or not , I dont know as they never told me, but I remember them saying you hate the heat and I was like no I hate being cold,, so makes me wonder if I had graves or Hashis, but did have a thyroid storm looked like Hyperthyroid eyes out on stalks but I may have had both, They have destroyed med records at hospital so will never know :(

, I never had anti bodies tested after Sub thyroidectomy so will never know if hashis was attacking me all my life. I got them tested last year at medichecks but had no antibodies at all, but posible they had finished the thyroid by then as was 35 yrs after ST

helvella profile image
helvellaAdministrator in reply to Pascha1

You are into territory about which I feel very ignorant. :-(

Maybe a quick read here:

medicalnewstoday.com/articl...

Pascha1 profile image
Pascha1 in reply to helvella

Thank you x

Thanks very much for the breakdown, very helpful and appreciated!

Hello there Helvella

Well just to add in my " tuppence worth " - diagnosed with Graves 2003 / RAI -131 2005 :

Treated on monotherapy with Levothyroxine, until late last year, now self medicating with NDT.

Been very unwell for past 4/5 years dealing with no saliva, dry burning mouth, dentist suggesting Sjogren's Syndrome, but had negative bloods and lip biopsy so a discharge back out into Primary Care, and called a conundrum by my doctor.

In Elaine Moore's book - Graves Disease A Practical Guide - she writes of the "disproportionate increase in dyslexia and left handedness in patients with autoimmune disease "

and goes on to write :-

" nasal dryness, nephritis, and neurological manifestations sicca syndrome similar to Sjogren's Syndrome may occur in Graves Disease patients following RAI ablation " -

Well this is me, I can tick all the above, along with asymmetrical breasts, for which my doctor was happy to refer me some years ago, I declined, but sadly no referral to endocrinology for over 10 years, and then when I managed to see an endocrinologist last year, was refused a trial of T3 owing to my having a suppressed TSH.

I'm now DIY , my doctor refusing a copy of the above book, and with a little help from my friends on this amazing website doing ok.

I am now curious as to why " some " of us have these long term consequences of RAI whereas others who have had RAI are simply unaware of any side effects other than hypothyroidism and all that that throws into the mix.

I also read Prof. Toft is so concerned about the state of advice on the management of primary hypothyroidism that he is increasingly reluctant to suggest RAI or surgery to Graves patients irrespective of age or recurrences of hyperthyroidism.

Sorry I've digressed a bit !!

Pascha1 profile image
Pascha1 in reply to pennyannie

I had sub thyroidectomy never did well on T4 mono, bit better with add T3 and bit better since NDT, My Endo said he does not do RAI or surgery unless really has to because all patients come back saying they do not feel well on T4 mono, ! I am having to pay for own NDT at moment I am applying for funding on NHS, but I wont hold my breath on getting it.. all wrong to have to pay own treatment as when I had ST years ago I was never even given chance to go intoi remision nor was I even told I may go into remision..

So outcome feel very unwell for years and can only now get better by paying privately for it, Disgusted at NHS for treating us like this..

pennyannie profile image
pennyannie in reply to Pascha1

Hi there, yes, I too never had a chance of finding remission - there was no discussion with me. I believe my age 56/57, fast tracked me into the RAI treatment box. and no alternative treatment option was offered.

It was RAI or RAI and I was told it was perfectly safe, and I'd be better, though maybe with hypothyroidism, which is easily treated.

Had I been told about the possibly disfigurement of thyroid eye disease, that might occur after RAI, my vanity might have just kicked a bit harder against the door, who knows ?

I was on Carbimazole for some 15 months, and it was no bother, just stayed on the same dose throughout this period, and I continued to work and got on with my life.

I have been more unwell since " treatment " than prior - and nobody wants to know.

Despite there being papers written, disclosing and confirming all that has happened.

It is a truly upsetting situation, I am totally disillusioned and disappointed with it all.

Having worked for over 40 years, with no illness to speak off, it's been a massive shock, realising the Nhs is not as I thought, at least as far as thyroid disease is concerned.

Thanks to this site, I've managed to turn some things around for myself.

I can't change what has happened to me but I try to help where I can on this platform.

I'm so much better self medicating and my level of health now not being restricted to the tick box exercise of looking at a TSH and dosing down hormone replacement, and giving me more disabling symptoms.

Pascha1 profile image
Pascha1 in reply to pennyannie

I was only on carb for about 3 months and they whipped thyroid out,, its disgusting how they treat you after destroying Thyroid :( I have just recently had a cortisol test which is borderline Addisons, My GP said that its probably due to they have never treated your thyroid correctly as Levo never actually worked on you with genetics// so maybe have a serum cortisol test done to see what levels yours are,, I have further testing to go to in couple of weeks for an ACTH test with the Endo.. but I would never have thought testing that with GP, I did a saliva test to which GP said Drs dont really look at them but as hes not most drs he will test my serum Cortisol and he was as shocked as me it came out borderline, 140 and if it had been 1 point less I would be offered steroids ( which I would rather not have tbh,, but it explains why I have really bad days x

pennyannie profile image
pennyannie in reply to Pascha1

Looking back I had all the classic symptoms that some Graves patients may experience after RAI, as thoroughly detailed in Elaine Moore's book, which was published in the early 2000s.

She wrote this book following her own experiences of going through the same treatment in the late 1990s and finding no help or advice.

I only purchased this book after being discharged from hospital with no answers, as to any of my symptoms, the dry burning eyes started approximately 8 years after ingesting the RAI and then over the next few years, my mouth, nose, and other orifices dried up, my mucous membrane suffering damage from RAI. This is my understanding, as there has been total denial of my symptoms, and I have been referred to as a conundrum.

There doesn't appear to be any joined up thinking, or knowledge, and there appears to be a total reluctance to listen or have a conversation as to my health.

I've found the whole situation very stressful and this in turns exacerbates me.

I'm not looking to apportion blame anymore, that phase has passed, I know I couldn't cope with the stress of it all.

But I would seriously like to know why these side effects can happen to some patients, and more importantly why aren't we told the truth about the possible side effects of treatment.

The fact that Prof Toft is now reluctant to refer Graves patients for either RAI or surgery, says so much, rightly or wrongly, I've read into that statement, my story.

Then of course, I could go on to rant about Levothyroxine being the only treatment option - but I'll kick that into the kerb today, as I might not know when to stop.

Thanks to this site I've learnt so much more than I have ever been told.

I would have never believed that in my 70's and being dyslexic, I would surround myself with medical books, having had to become my own doctor ?

pennyannie profile image
pennyannie in reply to Pascha1

Hey there again,

just a P.S.

I did manage to get the hospital to run a short synacthen test and the result was " " " adequate " in Nhs language terms.

I didn't ask for the numbers, and considering what we know about Nhs ranges, and the fact that the Nhs doesn't actually recognise adrenal issues, other than the extremes of Addisons, I didn't have the wellness to take this statement any further.

I had been supplementing with adrenal glandular for several months and still continue to do so.

As to a saliva test, I haven't gone down this route simply because I wouldn't know what to do with the answer I might get.

However, thank you for the suggestion.

helvella profile image
helvellaAdministrator in reply to Pascha1

My Endo said he does not do RAI or surgery unless really has to because all patients come back saying they do not feel well on T4 mono

Glad he said it to you. But where are his published case reports? His journal papers? His responses on the BMJ? He might have done all these things but, if so, he would obviously be in the minority.

Pascha1 profile image
Pascha1 in reply to helvella

He is in minority as he believes in NDT .. hes a professor , I will ask him when I see him in couple of weeks has he published anything about it< if not he sould write one about me :) he is mainly Diabetic but has a holistic view on things thank god,, he is in the thyroid uk list of decent Endos

bookish profile image
bookish in reply to Pascha1

Could you possibly PM me your Endo's details? Many thanks

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