Confused: Hello everyone I'm new to this group I... - Thyroid UK

Thyroid UK
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Hello everyone I'm new to this group I have a overactive thyroid I had a radioactive scan done no nodules found but since that scan my goiter is now visibly swollen and my lympth nodes are swollen too my go said that its given me a wide neck and she can feel the lympth nodes. And some bumpy bits. When I last saw my endo it was only slightly swollen. They said about my scan results that they can see its spreading across but didnt say what? Any ideas?

52 Replies

Hello there,

Have you had blood work recently and in particular the Trab test for Graves? What you are describing is usually called a diffuse goiter and a symptom of Graves’ disease. There are treatments for this, first drug treatment with carbimazole and then other more invasive treatments such as radioactive ablation or thyroidectomy. First, you need your bloods - and there are others on this post who can help you with those.

I wish you the very best of luck and sending you good thoughts for feeling better. Keep us posted.

Hi thankyou for replying I've had my problem on and off for 7 years graves as never been mentioned to me but I have read about it I do have more bloods on the 22nd that's 4 week after my previous and my endo did say extra bloods but again never mentioned about graves. I first started on 20mg but 6 week later my levels had only changed a fraction my heart sits at 118bpm on resting. My endo told me to take 40mg instead because he needs to get this squashed as quickly as possible. I am also waiting on an appointment to see a surgeon to remove it.

That sounds like a good plan. Please make sure they check your vocal cords before and after surgery and that they use a vocal cord monitor in the OR - this is critical. Good luck to you and all the best going forward.

I just had a TT for Graves with a toxic multinodular goiter 8 week ago. You can message me privately if you want details. The adjustment to meds after surgery requires patience - hang in there!

"I first started on 20mg" of what medication?



Greekchick is correct, you need a definitive diagnosis, which includes testing your antibodies so they need to test TrAb (TSI), TPO and TgAB, this will then tell you what illness you have.

If you are overactive (they need to be checking your FT3, and your FT4) then you need to be on carbimazole (CBZ) to bring you back to safe levels. This means dosing you by your FT3. If you have TSH Receptor (TrAb) antibodies, this will mean a) you have graves and b) tracking your meds by your TSH is pointless, as your TSH will be suppressed due to antibodies, regardless of your free numbers.

CBZ is important because it controls antibodies not just thyroid hormone levels.

A betablocker also slows down T4 to T3 conversion, and would protect your heart. Selenium is also useful for tamping down antibodies.

Unless your goiter is causing difficulty breathing, or is interfering with your vocal chords, I'd be in no hurry to have surgery, that should be a very last resort. Losing your thyroid is a huge deal, not to be taken lightly at all.

There is no reason, if they get you stable, that you could not eventually stay on 2.5mg of CBZ ONCE A WEEK for years and years.

Also do you have any eye involvement? The worst thing for your eyes, if it is Graves, is allowing you to go HYPO, and that means your dosing of CBZ needs to be carefully managed, or they need to look at something like 'block and replace' where they shut you down with one drug, and then replace with thyroid hormones. Also some people find, having had no eye involvement, having RAI suddenly kicks off eye disease, which is why knowing what you have is really important.

Graves is a very serious illness, and in my experience very poorly managed, now is the moment to learn all you can and get in control of your own care and choices.

PS just because you have 'diffuse toxic goiter' (which is diagnostic for Graves) does NOT mean they necessarily need to cut your throat. When we have Graves, our metabolism is going too fast, this means your emotions, and your thinking will also be distorted by your illness, this is not YOU, it is your disease. In that situation, I personally feel it is unethical for doctors to rush patients into treatments, when one of the symptoms of your illness is rash and impulsive decision making. Aggressive treatment decisions require a cool head, and calm and dispassionate reflection, that is nigh on impossible to do when you are wired to the moon because you are being poisoned by your own toxic levels of hormones. Therefore, it is REALLY important that they get you under control, and back into stability before you make any permanent decisions. This means your GP testing your blood every two to three weeks until you are stable. Also, doctors are bloody obsessed with remission, imho, you aren't going to get it, if and when you get stable there is no reason why you cannot stay there, doctors are in a rush to take you off your meds, then you'll relapse, feel like crap, and they'll rush you into surgery or RAI. See above, but my view is, once under control, stay under control, and see how you go.

Thankyou for your replies. I've had my condition on and off for 7 years and this is the worse I have ever felt and in those years endo have told me that if it does keep coming back then an opperation may be necessary or rai treatment but I have small children so the rai isn't really a option for myself. I'm also asthmatic so unable to have beta blockers and the alternative medicine didnt help my heart rate. It's with this goiter it is effecting my asthma I get breathless really easily I get terrible body tremors too where its noticeable by others and when I fo things in my home or when at work I begin to feel poorly drained shakes ect. Sometimes when my heart is racing I get slight chest pains too. With this goiter too it worries me I cant help but think the worse what if its cancer. I have a full blood count coming up too and one of them that's been ticked is crp but what is that?

Ps the bloods you you mentioned at the beginning as been done.

in reply to Kirstylstocks

Girlscout2 will not have seen your reply above as you inadvertently replied to yourself :-) Easily done ! Do you have the results of the tests you have had done - as mentioned above ?

in reply to Marz

Oh lol thankyou the results I know about is my t3 is 12.9 my tsh is 0.01 and my free tyrosine is 29. The other bloods I recall seeing them on form but they never said what those results were

in reply to Kirstylstocks

All always obtain copies of all your results - with ranges. It makes posting here easier when you have more information. Results are legally yours and you can then monitor your own progress and check what has been missed.

in reply to Marz

Thankyou next time I see my doctor I will ask them for copies of results for all of my thyroid tests and then update everyone

in reply to Kirstylstocks

Great news :-) Start a Wellness File and jot down how you were feeling at the time of the test results - on the same sheet of paper - also the meds and supplements you were taking - so you can see over time what is helpful and improving !

in reply to Marz

Thankyou I will do that

Ah ha just seen this, OK you are T3 toxic, thyrotoxic, they need to increase your carbimazole until you are back in normal ranges. If you have TrAb then TSH is irrelevant because it'll be suppressed regardless. The reason you feel shite is you are being poisoned by your own hormones. Carbimazole tamps down antibodies as well as decreasing levels - they need to titrate it by your FT3 result, testing every two or three weeks. L-Carnitine also slows down T4 to T3 conversion if you can't take a betablocker. It might be worth talking to your doc about block and replace if you have small kids and need to keep on going.

What is trab

TSH receptor antibodies (also called TSI), these bind to the TSH receptors which is why you have an undetectable TSH. This is why your hormone feedback loop is broken, as your body is saying 'too much T3, please stop making it!' but because the receptors are cluttered up with antibodies, the message isn't getting through, and your thyroid keeps on pumping out T3 (it's like the thermostat on your central heating being broken, the thermostat is saying, 'god it's boiling in here' but the boiler is still pumping out heat). The presence of TrAb is diagnostic for Graves. People with Graves also often have high TPO (also seen in Hashis) but you need to know all three because if you have elevated TrAb, TPO AND TgAb then you have a nasty little critter called Hashitoxicosis (hashis and graves together) which is much, much, much harder to control.

What is hashitoxicosis?

Hashitoxicosis is a combination of two illnesses, Graves and Hashimotos, it's a pretty treacherous combo, which is why you need to know your antibody results, TrAb, TPO and TgAb.

CRP is inflammatory markers (which I would expect to be high) and i hear you, sounds scary. Does your doc keep taking you off the meds to see if it 'comes back'? That's the point I'm making, if they can get you stable, then they should keep you stable, rather than yo yo-ing to see if you relapse. And great, glad to hear they tested your antibodies, what we the results?

All I know is my results is t3 tsh and free tyrosine I recall seeing those others on my blood form but was never told results for them ones and yes over the years I have come off the meds and then I've stayed stable without meds but now 20mg didnt work so now on 40 and to be honest I dont feel any better so dont think they are working as yet

Yeah, this is what I mean about docs being bloomin' obsessed with 'remission', it's a fairy tale imho, if you have Graves, then you are gonna relapse. Better to get stable and then stay on the very least does of CBZ to keep you under control. This can take a while to achieve. 40mg will defo bring your levels down but important not to overshoot. That or, shut you down properly, and then give you levo thyroxine to balance you out (block and replace)

You are entitled to copies of all your results (it's your blood, the results belong to you!), you need to find out what antibodies they tested and what the results were.

PS shaking will be due to your being hyper, you will have total stress intolerance plus fine tremors are part of the illness. Do you have any eye issues?

PPS (sorry!) TgAb and Tg tests will give them an indication about cancer, as would the scan (which has shown nothing), don't panic about that. The reason I'm harping on getting you stable is the temptation is to think surgery will fix your problem, but if it's graves the problem is your immune system, the victim is your thyroid, and losing your thyroid ca come with a whole host of problems as bad if not worse than your original illness. TT should be last resort, it's a really big deal.

My eyes. I wear glasess just for reading but recently I've found that I need them more often I havnt been to the opticion as I remember them once saying to me, overactive thyroid can effect your eyes so the results wouldn't really be accurate. So if I'm having a full blood count would that then include the tg tests? And do you know what crp bloods is to check please? Oh also my memory is shocking one if the worse ones I for got was a loved one of my uncle basically my auntie I asked how she was but she died over a year ago and I even went to her funreal

CRP is inflammatory markers, C Reactive Protein (which I would expect to be high currently, as you have galloping graves).

Not surprised your memory is shocking, you can get something called 'T3 dementia' which is caused by your brain being poisoned by too much T3. This is why I'm saying DO NOT make any major decisions whilst you are hyper, as having distorted thinking is part of your illness. We are prone to rash decisions and poor impulse control when we are over active.

No full blood count won't include antibodies, they are a separate test. You need to ask for copies of ALL the tests they've currently done.

How long have you been on 40mg of CBZ? Were your blood results you just posted on 20mg?

Try not to panic, it takes time for it to settle down. You need to use this time to educate yourself about your illness. A good place to start is with a book you can get in the pharmacy called 'Understanding Thyroid Disease'. You need to learn how your feedback loop works.

Yes blood results were on 20mg I've been on 40mg for about 2 week I think. Think a trip to the library for me lol

Bless you, it's bloody horrible you have my sympathies. Yes rest if you can, hang on for your next results (40mg should have brought you down, and the sensation of falling thyroid levels is really really unpleasant to live through) and see where you are then. This is a good book

Eyes, what you'd be looking for is rubbery eyelids, gritty, sore dry eyes, any kind of double vision, and any feeling of pressure in the eyes.

Double vision sometimes yes so I 0ut my glasses on to correct it. Also sometimes I get this horrible light on my eyes where you can see bright zig zag or bright blothes

OK so you definitely definitely need a referral to an eye hospital to a thyroid eye disease (TED, also called Graves Opthamology) clinic and you CANNOT have RAI, makes the eyes much much worse. Also, this means they need to monitor your CBZ really carefully (or think about block and replace) because overshooting and sending you hyPO is the worst thing for your eyes. You really, really, really need to get educated now and take control of your own care, this means being knowledgeable enough to manage your doctor!

Can a gp refer you or do I need to wait until I see my endo? My endo did say he needs to squash these levels he said you may go underactive but it's fine I can bring them back up

When are you seeing the endo? And yes it's more important to get your T3 levels into the safe zone, but for your eyes, it's important you don't stay hypo. Depending on how long you have to wait to see the Endo, the GP could send a note to the endo to say you now have eye involvement, of particular note is the light sensitivity and the double vision.

My endo told me 3 month so about 2 and half month but at a guess he may request to see me sooner depending on my results I have my bloods on the 22nd . I will see the surgeon before I see him.

I'd go back to the GP in that case and make sure your GP lets him know you have eye symptoms.

I will do and thankyou for all your help

You are very welcome, it's a horrible illness, really tough. Just try to look after yourself and rest as much as you can. Learn as much as you can. Then you can ask lots of questions and be in charge of your own care x

Thankyou do you find aswell theres not enough information that is put out there to make people aware especially in work places I'm sure they think that my health problem isn't serious. They dont understand it and how serious it is I've told them the risks it as on your body like heart failure ect. I was off work over Christmas as it made me really unwell 6 week I was off then I go back tell them I cant do late finish or more than 16 hours ect but then they say well I will have to get occupational health involved so I still do late finish which us 10pm on a night it really doesn't help my health at the moment

I agree, that would be something to discuss with your GP, as maybe you need some time off until you are stable. Graves is VERY serious. Please try and rest, and just get yourself stable, then it'll be much easier to think clearly and make good decisions (and I'd say that to the surgeon too, that you won't be rushed into it, as you are currently thyrotoxic).

To be honest I think I'm fine with surgery as I've known about the option for many years. But if they confirm I have graves I will tell them I need more time to think and look at further risks

Ps what do you mean by rubbery eye lids

Swollen eye lids that feel rubbery to the touch, like hard fatty eyelids. See my other reply, you need a referral to an eye doctor specialising in TED pronto.

Sorry to bother you again my endo appointment I went to my friend came with me she said I did ask about graves disease and they dont think it's that which is causing me problems. This is what triggered off the thought of cancer more I'll ask them of they checked for that in my bloods

First step is to get copies of all your tests, particularly antibodies. The scan was clear, I very much doubt it's cancer. A marker for cancer is elevated TgAb and Tg levels, if they've tested these you need to know what they are. If not, they need doing pronto along with TPO and TrAb (also called TSI). They cannot diagnose you without a full panel of antibodies.

PS this is why I'm saying you need to educate yourself about thyroid disease so you know what questions to ask.

Thankyou for everything I have screen shot the tests you have mentioned so o know what to ask

Great, and see if you can get that little book from the chemist, it's called 'Understanding thyroid disease' - it's a small white book, that will give you the basics (I know it's hard to learn stuff when you are all jittery and all over the place because you are poorly). Just try to learn the feedback loop and the basics. Essentially at this point I'd say you are not interested in remission, you are interested in STABILITY and being able to function, and to get enough time under your belt feeling OK that you can then clearly think and decide about your options. You want a definitive diagnosis, of your thyroid disease, and your eyes, as that will then inform what treatment options are open to you. I'd also really stress you have young kids and a job and this up and down stuff is no good. Ask about long term management with, eventually, very low doses of anti thyroid drugs (carbimazole) and / or possibly block and replace.

in reply to Kirstylstocks

They don't THINK - but do they KNOW ? There is a difference !

in reply to Marz

I will make sure these tests have been made thankyou I'm so glad I joined this group

I will have a think of what you have all said and I'll call to my chemist and enquire about it or I'll look online see if 8 can download it

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