Just needed to write - just had a meltdown uncontrollable crying husband managed to calm me down. I started thinking about what condition I actually have, went on YouTube started listening to doctors on there talking about graves - and just got overwhelmed, wish I hadn’t watched them. Been on carb since March this year and had a bad time on it on 5 mg now for 5 days but still don’t feel right, but a lot better than I did. I’m scared I’ll never feel the same as how I used to again, I’m worried about my hair thinning, eyes - just so overwhelmed today. I wish I could see light at the end of the tunnel, I just want to be ok again.
Sorry for kind of text today but know this is a good place to come for support.
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SamB22
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Sam, I’ll leave the technical advice to others better qualified than me on this Forum. Just remember that how you feel at present will pass, you’ve been very articulate about it and I can identify with not feeling in control. Best wishes.
hi SamB22 the thought of thyroid eye disease (TED )will scare anyone..., but you need to understand it is directly driven by the action of TRab on TSH receptors in your eye muscles.
Your TRab are now in range again .... so that is very good and it means you are much less likely to get any problems from thyroid eye disease.
The dry and sometimes swollen eyes that you have at the moment are common for all sorts of reasons, they do not mean you have TED .
The scary bit of thyroid eye disease is where they eyes get misshapen and protrude .... your eye symptoms do not mean you have got thyroid eye disease, or that you will get it.
You must take this just one day at a time ,and cope with 'today' or you'll drive yourself nuts with worry .
....... at the moment your signs are good .
hang onto that and don't think about TED any further .
Thank you for such a meaningful and caring reply - I really mean that! I didn’t know that about TRAB with eyes and consultant never gives any reassurance. You are right I will not allow myself to google 😀 and will think about today - as yes I’ve drove myself nuts. I had stopped looking at things and then started again. But I’m not going to anymore. Thank you x
Your welcome.. we've all been there with the 'scared ourselves silly on google' thing.Its hard enough to 'get a grip' even when your brain is going at normal speed ..but when everything in your body and brain is going a bit too fast because of your thyroid , then it's not surprising that everything gets too much to handle .
These overwhelming feelings and all this crying are not 'you'... it's mostly you thyroid making you think too fast /too much .
you could take the calmest person in the world and turn their thyroid up too fast and they would be a blubbering, jibbering wreck too...
So your ONLY job at the moment is to keep reminding yourself to slow your brain and your body down, and keep it as calm as you can .
..... and be very very kind to yourself.
This is tough and scary at the moment ,..... but in a few months time it will just be a story you tell others about "when you were really ill" .
it's just like walking a tightrope .... just keep walking forward one step at a time , and don't look down ..... you'll be at the other end and on solid ground again before you know it .
I really hope so, just worry as to why I still don’t feel right if thyroid results in range (although 8 weeks ago last test results). Maybe carb causing it or is it natural to take longer ( on carb since March this year). I seem to feel better as day goes on - morning getting better but still need to get up and go for a walk as feel I have energy to burn. I have had bloods today - but won’t get results for a few weeks as consultant on holiday. X
effects from 'wrong' thyroid levels take much longer than you think to settle down and improve . like a wake from a boat going past on a canal ... the boat went past ages ago , but the water on the shoreline is still sloshing up and down for a heck of a long time afterwards ... you are a little duck in the water at the edge who gets seasick .. you'll be feeling unsettled for a while yet , but have faith, when the water has been calm again for a while you'll start to feel better ...
you think "but the boats gone now ,so i should feel better already " but it takes much longer later than you expect for the water to be calm again.
just keep paddling in the right direction ....and don't panic .
Hi SamB22, as tattybogle rightly says, stop looking at Google; remember photos and articles often show ‘worse case scenarios’.
I just want to reassure you that when your medication and key vitamins are optimal, you will regain both your physical and mental health. Members are here to help and support, so keep posting! Can you share your thyroid blood tests? Have you tested ferritin, folate, vitamin B12 and vitamin D?
I have TED and my eyes now look nothing like they did 18 months ago. I nearly drove myself (& my family) mad researching and looking at images, so fully understand how you feel. What helped me was wearing large sunglasses (even indoors!) and wearing bright lipstick, as this reduced the time I spent ‘body checking’. I did take regular photos of my eyes (to show the ophthalmologist and endo/ have a record of changes) but kept them in ‘hidden’ images on my phone. If you feel that you might be developing symptoms of TED, do see an ophthalmologist and consider taking a selenium supplement of 200ug daily for 6 months. Also ensure your eyes are well lubricated if they are dry by using preservative free drops.
Hi thanks for reply. How do I know what optimal ranges are? No idea about this? Had tests today that included b12, ferritin, folate and vit d at request from GP due to my hair thinning and also usual one for consultant to check thyroid, liver and fbc. Pleased your eyes look a lot better 👍. I sometimes wake up with swelling under eyebrow, a bit dry sometimes during day (but not as much lately after stopping proponalol). Consultant said he would look at my eyes at next appointment - last time he just asked questions and didn’t come close to me. Will he only refer me to ophthalmologist if eyes don’t look right or with dry eyes too I wonder? Once I get my blood results I will share in here. Thanks again x
Forum members will be able to advise you on achieving optimal results for thyroid & key vitamins when you post the levels. It’s important to post the lab ranges too, as these can vary. Many GPS are happy when levels are ‘within range’ but many members only feel well with ‘optimal’ (often higher) levels.
I’m glad your consultant is going to check your eyes. Do write down all your symptoms prior to your appointment, as it’s easy to forget things.
I can't improve on Tatty liking you to being a duck :
The only good thing about my being diagnosed in 2004 was that i didn't have " google ' to scare and worry me :
However there was no support or information either - so a double edged sword.
Stay strong - the AT drug is working and just go one day at a time.
Keep notes of things you need to voice at appointment and become involved, as best you can, with the consultant and that he is very aware of your eye issues and whatever lotions, potions, drops and ' gunk ' you may use, or get prescribed, just make sure that they are all preservative free.
Sending hugs and keep paddling - though it may seem up stream at the minute :
Bless you, Sam, I'm so sorry that you are feeling so vulnerable and low. Don't look on google to try to find out about things...ask on here and you'll get answers and suggestions from real people in the same or a very similar situation. Hope this passes quickly...it will! Hang on in there, and In the interim, take care and be kind to yourself. Kx
I felt terrible when I was first diagnosed with Graves in 2012 but once sorted on treatment (it did take a while and ended up with RAI ) I am fine now. I am now on 100/125 Levo after my RAI and have no problem with my hair. Stick with it and you will be fine. Good luck
Hi there, are you still ok after rai as I read obviously on Google 😡that quality of life decreases after 6-10 years after having this - maybe not true as I’m sure loads great after it. After the RAI do you feel just like normal self after the time of adjusting? Did carb not work for you? I just hope I settle on the 5mg - woke up this morning anxious, energy so went for a swim feel a little better but still my body feels strange inside x soz for all questions x anyone else reading this had issues upon waking and feel can’t lie in bed cos of the feeling in body - hoping it will settle x plus had horrible strange dream hoping that is last side effects of withdrawal from proponalol x
Carb did not work for me as my levels just shot up afterwards. It's been nearly 10 years and I'm still fine. I went back excavating, back packing, playing badminton etc etc after my RAI. Dr Google is your worst enemy unless you are looking at the recognised health sites eg thyroiduk.org
The above is the most recent research and personally I don't understand why the NHS still persists with RAI treatment, other than because it is the cheapest option, as it is not necessarily in the patients best interest.
Put these to one side as you have only just started treatment.
Since your eyes are involved RAI should be " off the table " as a treatment option for you and not even considered :
Hi, don’t know yet about eyes if it is TED - but he will be checking at next appointment. Eyes haven't changed just the dryness, swollen lid but goes down after waking. I’d heard that rai wouldn’t be an option if Ted involved - hope mine isn’t. At this moment want to always hold on to my thyroid. Thanks for info x
Please read those links - your eyes are involved - and even if not, RAI can have serious long term consequences - especially if you want children.
If, and it is a very big if - you need a medical intervention then a thyroidectomy is cleaner and more precise and takes away the whole shebang - not leaving it in your body to fester.
hello there, sorry to hear it's a bad day for you today.I was diagnosed with graves disease and TED in 2018.I can totally understand where you're coming from.I used to go on and on about things and get things totally out of proportion.Once your thyroid levels come down you should feel alot better.You also have to remember that everyone has their own level they feel their best at.I didn't feel well if my T4 was high in the range, but someone else may feel their best.Unfortunately you do have to have patience( which I know is not part of having graves) as levels can take 6-8 weeks to stabilise when tablet doses are changed.I found the best thing for me was to adjust my lifestyle as much as possible to make it easier on myself.Things that don't need doing don't do.Pick and choose what is important and everything else can wait.Don't look too far ahead, concentrate on the here and now.I very easily became overwhelmed.I used to write things down on a calender alot instead of constantly having to remember everything then I could look at what to do each day.It will get better.You are on a treatment path now and on your way to feeling better.Yes there may be glitches along the way but you'll get there in the end.Start each day afresh and you'll continue to move forward.Best wishes to you.
Thank you for the advice. Been on carb nearly 12 weeks but I understand from the other posts and yours it all takes time - strangely I feel a little better at this moment - hoping propnalol withdraw effects are getting less and the carb 5mg is working. I really hope as time goes by I just feel normal again - I think when it says 6-8 weeks I thought I’d be back to normal self at that point x
yes unfortunately it can be a long slog when all you want to do is rush, rush, rush.I am on proprananol at the moment as a migraine preventative and it is working for me🤞It helps calm me and slow my heartrate a bit.You are very early on in your diagnosis so there is every chance carbimazole will work for you.After 4 years and no sign of remission I had a total thyroidectomy 3 weeks ago and feel like a new person.It is important to bear in mind that you are a unique individual and things that have been unsuccessful for other's may work for you and vice versa.I scared myself for a while with people's horror stories and probably waited a bit too long to ask for my operation.I can totally understand someone who has had a bad experience wanting to warn others of the pitfalls but I also think it is important to have an open mind and look at all options to find the right one for you.I didn't know anything before finding this site but slowly I have learnt alot without overwhelming myself.It will get easier for you.Best wishes.
Hi Sam, been there. Got the t-shirt. I had Graves and really bad TED. It took time, but you will feel better. Carb really didn't agree with me. Apparently, that can happen. So, I had my thyroid out. It does get better. Hang on in there. Yes. It is scary but it will pass. Sending good luck.
Hi if you do t mind me asking when you say carb didn’t agree with you is that the side effects from it, if so what were they? How do you feel with thyroid out? I’ve read people feel sluggish and never the same which worries me. I’ll try and hang on there as best as can x
Hi Sam, We are all different so we all react differently. With carb, I was in a constant state of high anxiety. Felt like a pressure cooker about to blow. That was the reason, they decided the thyroid had to go. I was prescribed 125mg of Levo and felt great on that for years. However, I have had wobbles. I think the thing I have learned most from the great people on this forum is that despite being within normal parameters, it is not always the optimum for you. I have had times when I could weep for feeling that I don't look good or feel good, but although I could do with a facelift, I have to say, I'm the fittest I've been for years at the moment. Good luck my lovely. x
I had Graves, Hashis, TED and thyroid cancer, total nightmare! Having a meltdown might indicate your levels are rising again, and you should be being tested every three to four weeks in any event, and your medication titrated by your FT3. If you feel you are more anxious, losing weight still, have tremors, have racing, obsessive, circular thoughts, feelings of doom, are pooping more, feel sweaty, can't sleep etc, then it might not just be a worry meltdown, it might be a relapse and you need to be tested pronto.
Endos seem a bit obsessed with 'remission', and stupidly keep patients on a rollercoaster of reducing meds, constant relapses, only to throw their hands up and say, your thyroid has had it, we need to destroy it! This is not the case. Sorry to be a party pooper, but it's highly unlikely you will achieve remission. That being the case, what you can do is get things under control so you feel OK and can live your life.
As you have Trab, your TSH is irrelevant, endos also seem a bit obsessed with (the cruel and brutal in my opinion) aim of achieving a rise in TSH of Graves patients. Avoid these doctors, your TSH will be supressed regardless of what your other numbers are doing.
There is no reason why once under control you can't stay on CBZ for years and years, some people eventually - once everything is tamped down - can take 1 or 2mg of CBZ *once a week*. CBZ is a horrible drug (your body will hate the ups and downs of changing levels) BUT it not only slows the thyroid, it reduces antibodies.
So the first thing to say, be wary of a doctor obsessed with remission, it's extremely hard to achieve, the aim should be feeling well and being able to function, at no risk of thyroid storm. There are ways to achieve that - using enough CBZ and titrating by the FT3 until you feel stable and well, or shutting the thyroid down entirely with CBZ and then adding thyroid medication to replace your hormones (called block and replace). Some find the addition of a betablocker (which slows T4 to T3 conversion) added to their regime really helps, and helps with the funny heartbeats and anxiety.
Any eye involvement - itching, soreness, dryness, double vision, straining to see things, funny eye symptoms need to be seen by a TED doctor, and not left or written off as something else. This was very poorly managed for me, it should be taken very seriously as soon as symptoms appear. It runs it's own course (mine continued for two years after my thyroid was removed, it has a 'hot' and 'cold' phase, although the removal of my thyroid did shut the antibodies down immediately).
Important to remember about 70% of your symptoms will be driven by inflammation in your thyroid regardless of your free circulating levels, also important to remember your thyroid will be sputtering out random levels of hormones due to antibody attacks. This is what makes us feel so dreadfully ill, and is - again in my opinion - why doctors are cruel to dismiss patients who are 'nicely in range', as that is only part of the story.
Whilst I'd also concur with others that educating ourselves needs to be done in small manageable doses, it is important to learn about your condition, and there are some good resources online. I'd have been stuffed if I hadnt' have done this, as I really really needed to advocate for my own care. It took three endos to get the help I needed, and by that point (no joking) I was nearly dead! The endo professor who saved me said, 'I don't know how you are still standing up'. Bearing in mind I had medical secretaries screaming at me 'THERE'S NOTHING WRONG WITH YOU!!" and my GP snarling, 'we do actually have patients to see who are actually ill' - because, on paper, I was 'in range'.
Also, endos assume because you have Graves, particularly if there are eye symptoms that the only antibodies that matter are Trab. This is not the case. 60% of Graves patients also have TPO (all of mine were in the thousands), however, they failed to test my TgAb on the basis of those assumptions. I had galloping levels of TgAb, which meant I had Hashis AND Graves (Tgab are also an indicator of cancer). Graves and Hashis together - what, in America they call 'Hashitoxicosis' - is a very very treacherous combination that is almost impossible to control, and two 2cms malignant tumours in my neck were also missed. I was spiking life threatening levels of T3 every four hours, and every medic I consulted (because at the time of testing, this wasn't showing on tests, and they were unaware of all the antibodies) wrote me off as MENTAL. I say that not to scare you, but to stress that Graves and related autoimmune thyroid issues can be very very serious and disinterested doctors make it a million times worse. I strongly advise you to put your hands on the steering wheel of your own care.
I don't know why endos seem to treat Graves like it's not serious, it IS serious, and it affects every area of your body and your life.
I also concur with others that nutrition and key minerals and vitamins are vital for your health - I had two iron infusions, was on daily B12 jabs, and ten years down the line it's an important part of my health plan now, however no amount of nutrition will control active graves.
I'm assuming you've had a scan of your thyroid, including a reuptake scan (if not you should have)?
As others have said, if you have any eye issues *at all* you are not a candidate for RAI, so the only other permanent solution is TT. That should be the very very very last resort, which is why I'd urge a really proper diagnosis before you do that. My thyroid was so diseased and inflamed when it was removed, my surgeon nearly cried with me, he said 'you must have felt DREADFUL' - yes, sir, I did, and nobody listened to me for TEN YEARS!
Finally, be wary of being bounced into decisions too quickly. Going too fast is your disease talking, and I think it's unethical of doctors to bounce poorly patients, who by virtue of their condition can't think straight, are anxious, have whizzing thoughts, and are going a mile a minute into irreversible decisions that once done can't be undone. These decisions need to be made (excepting when thyroid storm is a real consideration) when you are calm, steady and able to process the implications.
I don't know whether you've come across Elaine Moore, but I found her a good resource when I was very very ill, she wrote a good article called 'What's the Rush in Treating Graves Disease' that'd I'd recommend along with the rest of her site elaine-moore.com/Articles/G...
I really hope you start to feel better, and I say all the above not to frighten you, just to emphasise that you have a really serious illness, and it's OK to be scared and to take it very seriously. I'd not wish what happened to me on anyone, I had very poor treatment, from very blase endos, and it was only because I sought a third opinion that I'm still here, and by that point I was in such a terrible, terrible state that in order to save my life my thyroid was removed as an emergency. The only upside to that was the glorious arse kicking my endo surgeon gave to every incompetent, callous nincompoop medic who had failed me up to that point. Even my GP said, 'it's only due to your dogged determination you are still alive' and I replied, 'I know, and that was your job'.
just to clarify . SamB22 had Trab tested at diagnosis"My TRAB results were:1.9u/l - the range should be 1.0 -1.8 " (only very slightly raised )
i believe at her latest test her TRab were now back in range... and as far as i am aware , the level of TRab has a direct relationship to the chances of going into successful remission...
I'm just bit concerned incase your comment that "it is highly unlikely that you will achieve remission" might cause her unnecessary worry at the moment .
Hi again, also just wanted to say that one consultant who I spoke to said that they had a patient back after 20 years of remission! Some after 2 years etc. True don’t want to worry too much about remission at the moment x
Graves is an auto immune disease and as such it is for life - it tends to wax and wane and said to be stress and anxiety driven.
It's all a question of degree and there are people on this forum who have been taking AT drugs, for very many years after initial diagnosis and just pop a pill, if and when, their immune system response is triggered again.
Please read up and try and stay calm and just go one day at a time.
Yes that can happen, my point is endos are in a hurry about it, and - in the absence of thyroid storm risk - there's no hurry. In fact the 'hurry' is a feature of your illness. In my opinion the goal of any good Graves treatment is STABILITY and feeling well, if that means you stay on a tiny dose of drugs for the next twenty years, do that, don't chase elusive 'remission'. It's extremely rare in Graves patients.
Yes but Trab aren't the whole story, and often endos don't go looking, which is why it's very important to be clued up on things, and to ask for tests, scans etc. Plus as I said 70% of symptoms are due to inflammation in the thyroid, regardless of other things. Graves is a very treacherous illness, I'm not trying to scare anyone, just simply stress that it's very important to know enough to properly work with your doctor. Remission is vanishingly rare in Graves patients, and yet endos chase it, and often do it far too soon - start titrating down the drugs within a couple of months - putting patients through endless (pointless) relapses and then bouncing them into life altering permanent 'solutions'. Providing all other nasty complications and autoimmune combinations are ruled out, there is no reason why patients can't happily stay on tiny doses of ATDs and live a totally normal life.
I really learned the hard way (and met many other graves patients along the way), in my opinion remission is a bit of an unrealistic goal, the goal should be feeling well, being safe and stable, and being able to live your life.
Hi Girlscout2I agree with you that 'stability' is the best aim with treatment ,and that people are often rushed into coming off antithyroid drugs too soon , and then pushed into definitive treatments, when perhaps staying longer in lower dose carbi / ptu might have been a better idea for them if they felt well like that .
but i think 'vanishingly small' is bit of an overstatement.. about 25% who come off carbi/ptu might still be in remission after 20yrs.... ncbi.nlm.nih.gov/pmc/articl....
and even if they did still relapse at some point after that, i expect they would be glad they had those 20 yrs of euthyridism..... so i don't think we should totally dismiss 'remission' as a worthwhile thing to try for, as long as it's tried intelligently and on an unhurried ,individual basis, looking properly at patients history/ TRab levels / how well they feel on carb /ptu etc .
From SamB22's previous posts and this one ,it was clear to me that she was feeling very overwhelmed and scared by every possibility that is mentioned , and as i knew she had TRab that were very low / in range , and that she has just had a blood test to check thyroid hormone levels, and also saw what her previous levels were 8 weeks ago , i was just trying to keep things in proportion for her so she doesn't end up more scared again , because she posted today to calm herself down .
Excellent replies tatty🌟 I have no experience of Graves, so can't advise, but I personally know a bit about fear and stress, and the very detrimental effect it can have on the body, even if the person is healthy, without the crappy thyroid disorders! Always best to try and think positive and keep your chin up...hard to do at times, but well worth the effort, as it really does help! 💓Good luck SamB22 🍀 Hope you feel better soon...sending ((hugs)) x
We all have a variety of issues and experiences. Just preface with I need to share/vent whatever. Most of us are not experts, but just people looking for answers and feeling like we need to be heard. Sound like you just were overwhelmed . Thinking of you. Have better days!
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Graves?
Graves
Graves and arrhythmia 
Overwhelmed w/ the info here
Is this a Graves diagnosis?
