Grave disease?

Grave disease?

I'm kind of panicking now, I posted my results in a thyroid website particularly for people with grave disease and someone says I have grave disease for sure. I cannot interoperate this and I don't see my endo till February I only got diagnosed 2 weeks ago but I'm not feeling any symptoms yet just anxiety of course because I don't know what's going on!

Some say Graves some say hashimoto I don't have a clear explanation and it's making me really worried. It's going to be hard to stay calm from now to February especially because someone said I need to be medicated ASAP or I'll have a thyroid storm.

45 Replies

What a helpful site that sounded. Not!!

Luckily you've found us. :)

Please don't panic. Although your results are not in range they're only just out of range. That means that if you do have hyperthyroidism, they may very well adopt a watch and wait approach because your symptoms are only mild. Not sure who the cheery person was who suggested you'd have a thyroid storm but that was rather over the top and very unlikely.

It could well be the beginnings of Grave's disease but it can be treated. Similarly, it might also be Hashimoto's Disease, which eventually causes hypothyroidism (underactive thyroid).

Has your doctor started you on any treatment?

Seriously I'm staying AWAY from that website the people here are so much friendly and warm here. I almost started crying when she said that apparently my anti thyroid periodidase looks consistent for grave disease whatever that means 😞

So does hyperthyroidism and overactive thyroid mean the same thing? Because my GP said overactive thyroid. Sorry if that sounds stupid I'm very new to this I was diagnosed 2 weeks ago and my anxiety has gone through the roof so you can imagine that comment from that person did not help!

Also if I know I have a overactive thyroid now and hopefully can be treated will I ever get to the stage of my eyes popping out? My uncle had it and he put on so much weight 🙁 I'm only 22 I hope this doesn't happen.

No, the GP decided not to medicate me she referred me to see an endo but this is in February.

Yes, that's right - hyperthyroid and overactive thyroid means the same thing.

Thyroid Eye Disease - TED - can happen as a result of Grave's disease (which is a particular type of hyperthyroidism) but doesn't always happen so try not to worry about that too much at this stage.

Difficult I know - because being very slightly overactive like you are tends to raise anxiety levels - but try to think positively. You've found out about this at a really early stage, which means you can learn all about it and what sort of treatments are available.

My GP says thyroid problems are very common and most don't find out till they're about 50 so she says I'm very lucky even though I don't feel it right now..

This lady also says most people with hashimoto develop cancer is this true?

I'm also scared to have an operation to have a goitre removed 😞

One step at a time, ok? {hugs} I know it's a lot to take in, the idea that there might be something wrong, but it can be treated and your results suggest that it's only very mild at the moment.

Does your doctor know how anxious you're feeling?

Yes! In 2015 around November I had a panic attack and went into A&E and ever since then my life has been turned upside down. The doctors done multiple ECG and chest X-rays on me because it was my heart I was worried about at first then it was other

things I went onto.

Eventually my doctor labelled me as having health anxiety I've been to therapies for it but chose not to take medication. I've controlled my anxiety very well since this year of February no panic attacks nothing! And my symptoms have lessened, I just get the few headaches and feel groggy! Until the GP decided I do a thyroid function test and tah dah! My anxiety is back and stronger than ever. I haven't had an anxiety attack yet I've adopted my defence mechanisms when my anxiety was so high. It just makes me wonder if I had high anxiety from November 2015 to February 2017 because of my thyroid problems or other things, because at the time I just moved houses and a new job which was stressful.

Interesting that your doctor decided to label you with health anxiety when it's quite likely you've been brewing hyperthyroidism all along. Hopefully you now know that feeling uptight and anxious is all part of having an overactive thyroid.

Additional stress certainly won't have helped but as you're likely to feel more stressed than other people, they need to be a lot more understanding of you!

It's really good though that you know lots of tips and tricks for calming yourself down. This is just another of life's little curveballs.

Try try try not to panic. As I said before, this is actually a positive - you finally have an explanation for feeling the way you do.

Yes I did mention thyroid problem in the past but she said I was way too young (I'm 22) but here I am with the thyroid problem now.

I'll try and keep calm I'm just so thankful I've found this website with so many people who can help me and advise me.

I need to stop feeling for myself for the past few days I just feel like I have a disability and I can't have a normal life and be like my friends but I just need to get a grip and fight this.

No need to fight. :) Be gentle with yourself - you've been through a lot. But yes, you can - and will - get through this. x

tooyoung for thyroid! what utter crap my grandaughter was 9 when she was diagnosed with Hashimotos they test babies for thyroid

Um, no! What a ray of sunshine she is!!

Definitely stay away from that site and stick with us. :)

Have you been to the main Thyroid UK website (the owners of this sub forum on HealthUnlocked). Loads of info there to have a look through.

Thank you so much! I need to educate myself so no one can scare me anymore haha

But sometimes I'm so anxious I just skim through it and focus on bad words like CANCER and DEATH

I know, I get that. It doesn't help that we hear those words everywhere all the time these days.

But it will be ok, all right? You've got this. x

I have hashimotos and have not heard of this and why would anyone give you that useless info- just ignore the rubbish and besides we live in a society where everything causes cancer- please do not worry!! Xx

Hey - Ive got thyroid cancer and I'm not dying. I'm here, getting better and probably the worst case scenario you can think of, look at my other posts... But I'm not dying, it's all fully treatable. This is THE BEST site for honest and accurate information. My motto is.. "Can I change it? No? Ok I won't worry about it". X

Is the same info on both sites? Confused!

No more than anyone else develops cancer.

Hi there, deep breathes and stay calm its not goid getting yourself worked up like these when you are hyper it will just make matters worse. I have hyperthyroidism and hashimotos, if you have graves your tsi antibodies will be high- its a awful name graves but doesnt mean you will die its a auto immune disease just like hashimotos and that has high tpo antibodies.

I kniw exactly how you feel i was diagnosed in july and felt very SCARED and had a few rides in a ambulance to hospital has i thought i was goin to die. Still here though and it has been horrible with all the nasty symptons of breathlessness, anxiety, shaking, heart palps, and panic attacks which i never suffered from before. Doc originally started me off on beta blockers to ease my symptons of my heart beating to fast , blood pressure etc but i couldnt take them for long and plus i feltbi needed to start carbimazole straight away and doctor agreed to give me 20mg dose until i saw endo over 2onths later

As the doctor started you on any meds? If not you could insist on a low dose just till you see endo and thisvwill ease you a little aswell as then you will be starting to help fix the proble.but it is not a quick fix at all and carbimazole can make you feel worse when you first take it and it does take around 6-8 weeks to work.

Hope you get some more teplies of help. But try not to worry i was just as frightened as you and here i am still fighting back.☺

Hi Rmichelle, thank you for taking the time to reply. You say my TSI antibodies will be high if I have Graves, so is mine high to you?

I'm so sorry you had a rough ride when you was diagnosed I expect I will be like that soon, I've been through all that with my anxiety already i hope I can tell myself I'm going to be ok and it's just this awful disease. The thing is I don't feel bad right now at all, or even before I was diagnosed I'm just anxious because I don't know what I have. I'm not on medication yet my doctor says she will not medicate me yet I think that's why she booked me to see an endo in February.

But well done I hope you're doing good

Hi there again there are alot more people on this forum who are better to advice you on your bloods but ive taken a look- you have not had tsi tested for graves but you have had tpo done for hashis but the figure i cant read as it is blurred. Your t4 is a little over range which could indicate that you are hyper or could pissibly be showing a hyper result if you have hashimotos as iif you have hashis you are hypo but have a hashis swing but as mentioned there are alot more experienced people on this site and im only a beginner and still learning myself. Good luck and stay strong.xx

Meant to say hyper swing sorry.

They didn't test your TSI antibodies. They tested your TPO antibodies. They are high which means you have Hashi's - aka Autoimmune Thyroiditis.

With Hashi's, you can swing from hypo to 'hyper' (although not true over-active thyroid) and back through euthyroid to hypo thyroid. And, given your history, it sounds as if you were hypo at some point, but nobody gave you a test.

On these results, it looks like you're just coming down from a 'hyper' swing. These happen because the immune system attacks the thyroid, kills a few cells, and then the antibodies come in to clean up the mess - that's when they're highest. But, the dying cells have dumped all their store of hormone into the blood, which means that blood levels of FT4 and FT3 go very high, which means that the TSH drops.

But, these high levels won't last forever. The extra hormone will be used up or excreted, and you will gradually descend into hypo. By the time you see the endo in February, you could very well be hypo. So then, you will need thyroid hormone replacement - the famous levo that we all talk about on here. :)

As for the cancer idea... All I can say is some people do talk a load of rot! I've had Hashi's for many years, and my thyroid is now all but dead, due to the immune attacks. But, there has never been any question of cancer. So, don't worry about that.

Neither are you at any risk of thyroid storm, because with Hashi's, levels never get that high. So, it's not such a black picture as it has been painted! Your doctor obviously doesn't know very much about thyroid, but that's normal. None of them do! Here's hoping he's referred you to a decent endo! :)

I'm so sorry I just realised how blurry the picture is thank you for making the effort to read it and reassure me.

I feel a lot better after reading your post I hope when I take the thyroid hormone replacement I can still carry on with my life. I often see people saying they have to take time off work. I've actually printed out some of the comments on here (dramatic I know!) but I've printed yours out, I just need to read it over and over again to tell myself I'm going to be ok. My mind is filled with negativity right now so I thank you for changing this.

Of course you're going to be ok! And, of course you're feeling a bit negative at the moment. It's natural, you've had a bit of a shock. But, you'll rise above it.

Yes, sometimes people need to take time off work - but so do people who don't have thyroid problems. It happens.

The only thing is, it's going to take a little time to get your dose right. Hormones - all hormones - have to be started low and increased slowly. So, don't expect thing to get better straight away. But, I'm confident you'll get there in the end.

As to the negative stories on here, don't forget that we're a bunch of misfits - for one reason or another - we're not typical at all. The majority of people do very well on levo, and quickly get back to living their lives. Just believe, firmly, that you're going to be one of them. :)

Your TSI antibodies weren't tested which is how we know you have Hashis but can't tell if you have Graves as well. As it's Hashi's. the overactive bit will pass, so no need to be upset. You probably won't even get a goitre - most people don't - and even with those that do, it often goes away on its own with appropriate meds. So no surgery, no cancer, no death - but possibly some weight gain later (never accuse me of being an optimist)

Is it possible to have both Graves and hasimoto’s?

I have been told by other tuk members they can run alongside one another yes, as i have hashis and trying to get my endo to test tsi but he is firmly digging his feet in saying no.x

Thank you Rmichelle. It is so confusing! I have antibodies for both, my endo ignores this. She’s treating me for Graves. New test results today so hope to find out more. Trying to sort it out. Also trying to figure out these sites, how to post, etc , didn’t mean to highjack this thread.

Hijack- i dont mind as i do this myself and i always say sorry for jumping in and most people are ok for that. Yes it is very confusing and this is new too me aswell since july and im educating myself or trying too at leadt-ha, im getting better at reading my bloods, i do think we are left in the lurge with thyroid problems and to sort out things for ourselves. You see my endo is equally as useless as yours and he wont test tsi because he says theres no such definite test!! See my problem? 😨

Wow no such test! That is ignorant!I was also diagnosed in July, I just had more tests and will post them soon. Do you know if the “patient” site is part of the “Health Unlocked site?Maybe we can comparetest results. Are you in the UkMichelle? I’m in the US. Good luck with that useless doctor!

Hi there!! Im in uk- cold grey uk.ha. i dont think the patient site is part of TUK. Yes im going tomorrow for my bloods done and will post them on this site around 6 days later by tve time bloods come back and then arrange copies from gp practice.

Yes my endo is not much good at all- he is meant to be ringing me to today to say why he has headed the letter i received from him stating i have hyperthyroidism/graves when he has not tested me for graves?? I despair sometimes.x

If you go to the main screen , you can get there by presding on the icon at the top of this page the square box made up of them tiny circles and tgen you click on thyroid uk site then it tajes you to main screen . At the top of screen it says write a post, click on it then write your post scroll down to submit tab and hey its done.then you can go back to main screen again and scroll diwn a little and like magic your post is there!!⭐

Can’t you go to your. General practitioner and ask them to test your Tsi? You can always say you are not too sure about your endorsement and you would like this tested. Good luck xx

Replying to my own reply, sorry that should say your ‘endo’ not endorsement that predictive text thinks it should!!

Its ok- endo wont do it. I have hashis but he has dug his feet in about tsi but i wont give in he us calling me back next week.😊 but thankyou i have tried

Yes hi there again, i am now on my 3rd month of being of work as im no way sorted out yet, ive just had a work based occupational health telephone conference and they actually agreed that work has to make allowances that people with a thyroid disease are going to be off long term sick and also with a immune disease people will also be off more than other people as their immunities are lower( i have hashis and celiac)

greygoose gives excellent advice in which you should follow, she is my professor greygoose!!😊 what she doesnt know isnt worth knowing.ha.

You will get there but it iis a fight, so put on your boxing gloves.ha😆

Stick with this site. We’re probably the best balanced bunch around. Being hyper can make you incredibly anxious. I’m in remission from Graves and boy was I stressed before I was diagnosed.

Like Michelle says - listen to Professor GG. Don’t panic, be kind to yourself. If it’s Graves (autoimmune overactive thyroid) you’ve got you’ll be fine - when I was first diagnosed I didn’t think I would ever be normal again and I am (well as normal as I’ll ever be 😉) If it’s Hashimotis you’ve got (autoimmune underactive thyroid) then you’ll be fine too.

If heaven preserve and highly unlikely it is cancer, you’ll still be fine. My sister in law had it over 45 years ago, had her thyroid removed and went on to get a university degree, teach science, bring up two kids, go mountain climbing, mountain biking, camping, round the world sailing. She is slim as a willow and packed with energy.

You might not feel it at the moment but you will be fine. Go on to our sister site read all the sensible stuff.

Get yourself organised. Keep a notebook with your blood test results and their lab ranges (very important that!) Jot down any questions for when you see your endo. Jot down any worries you have too. Keep them brief - just bullet posts or you will lose your doctors if you go on and on about everything. I’d also tell the endo that you have a family history of thyroid disease and that’s why you are so worried. It tok me about the same length of t8me to get to see an endo - and I was a walking disaster area, I remember be8ng shocked at how long I had to wait but that was about average.

You need to be very kind to yourself. Get enough rest and sleep, don’t push yourself too hard or over exercise, eat well, I eat lots of fish, more vegetables than fruit, cut out junk food and fizzy drinks. I drink decaf drinks or plain water these days.

Ignore horror stories and bear in mind that for all the grim stories you read on here there are loads of people with thyroid problems out and about and dong really well - like you will be when you’re sorted out.

No test was done for Graves antibodies so impossible to tell. TPO are Hashimotos antibodies (but it is possible to have Graves and Hashis together). If you are on levo, your results are fine. Would be useful to see a free T3 result. If you are unmedicated it's probably a Hashi's flare where the dying thyroid dumps excess hormone into the blood stream giving high thyroid hormone results and low TSH. After the flare is over, you become more hypo. If you do have Graves, it looks very mild as your FT4 result is only a tad over range.

See you GP, if it's thyroid condition then they would normally start you on medication straight away.

Hi. Sorry you had to go through that fear. I know only to well how that feels. You shouldn't be afraid but you are human. I developed an over active thyroid when I was 28 if I remember correctly. I was told it was probably graves but never knew for sure. The headaches was what sent me to the docs. And the feeling of being overly restless. I was put on my Carbimazole and was back to normal in no time. Eventually they took me of the meds and I only went back on them if my blood test looked abnormal. It can be scary but for me it wasn't so bad. There is lots of surport on this site and many who can help you.

Stay strong!

I get headaches too but I think they're tension headaches. Are yours severe? Thank you I hope I can get this sorted soon but unfortunately have to wait till February

Hi. Sorry late reply. This was more than ten years ago now. The headaches were mild and what is similar to the morning hang over. They persisted but did go away with paracetamol etc. I also got the palpitations which I know can frighten you silly. Like you it was 2 months until I finally got my diagnosis an then treatment. But as soon as treatment started I was on the mend. Over the years I've tried meditation which is brilliant for anxiety and the Calm app for soothing meditation and music for bedtimes to help you unwind.

Good luck

Hi, don't will make matters worse. i;ve had several and they're scary but you may not, cross that bridge when you come to it. Your heart will thump in your chest like crazy, just be calm and get to a doctor ASAP, IF it happens, and many don;t get this, staying calm is very important. Has your endo told you no caffiene...if he/she hasn't then don't have any form of caffiene, including chocolate (sorry) as this only accelerates your heart rate more, I was off it for 2 years. Good luck.

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