Hello everyone, I just joined this site. I have been diagnosed with overactive thyroid on the 11.01.21 since then I'm talking daily 20mg carbimazole. On the 11.02.21 will be exactly 1 month since I've started to use carbimazole. I dont have side affect, but my eyes are so puffy! This horror appeared after 1 week I've started taking carbimazole. I'm in tears every day, I'm so embarrassed, I try to avoid looking in eyes when I speak to someone. I even contacted plastic surgery to discuss the options of reducing swelling around my eyes. Then I have contacted my GP, he said that this is nothing to do with my prescription and its quite possible that i have Graves disease. I'm on the wating list to see endocrinologists. My question is - if I do have Graves disease why is it my eyes changed so much after I've started taking my medication and not before? Is it going to get worse? I have to admit its ruin my life. I have never been so ugly.
Looking forward to hear some advice
Thank you for reading my story
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kVtar
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Do you happen to know your blood test results from your diagnosis? How were you feeling at that time? It's all very well your GP saying you 'possibly' have Graves, but he shouldn't have prescribe carbimazole without knowing for sure that you have it. Do you know if he tested any antibodies?
If you don't have your results, ring the reception and ask for a print-out. It is your legal right to have one, and you need to know exactly what was tested, and what the results were.
I'm truly sorry to read of your health issues but you are in the right place as there are several forum members here who have been through similar.
It is imperative that you are also referred to a specialist eye clinic - it could be referred to as a TED clinic - Thyroid Eye Disease is commonly referred to as TED - or it could be a specialist unit in the hospital that specialises in Graves Ophthalmology :
Thyroid Eye Disease and Graves Ophthalmology can happen in isolation and it does not mean that you have Graves Disease :
It is imperative that a diagnosis of Graves Disease is only given once there has been an antibody blood test run and you have the written medical evidence of over range and positive TSI and or TR ab which are the 2 antibodies unique to this disease.
Since you say you have no other symptoms, other than your eyes, the above more detailed blood tests need to be undertaken sooner, rather than later.
Do you have copies of any blood tests that have been run recently - showing a TSH, T3 and a T4 with numbers and ranges that you can share with forum members and who will explain to you what these numbers and ranges all mean ?
You are legally entitled to copies of all your results and it will be in your best interest to keep these.
When I was diagnosed in 2003 it was through a blood test drawn at my local surgery.
I do read many people seem to now wait for this antibody test from endocrinology but personally, considering the current situation we all find yourselves in, maybe the doctor could jump the queue and order this blood test himself, in liaison with the hospital specialist.
The psychology impact of one's eye not being the same as they were can't be over empathised : cosmetic and decompression eye surgery are options open to you but not at this point in time - I'm afraid you need to try and be accepting of this situation, which can be very difficult :
I was diagnosed with Graves Disease in 2003 and my symptoms were exhaustion, insomnia and dry gritty eyes. I was treated with RAI thyroid ablation in 2005 and the RAI caused my TED, and I now also manage lingering Graves, TED and hypothyroidism.
You might like to go onto the Thyroid uk website and read further on all things thyroid.
You might also like to dip into the Elaine Moore Graves Disease Foundation website.
Elaine has Graves and has now written several books covering all aspects of thyroid auto immune diseases and also runs a world wide open forum, much like this amazing forum, where you can ask questions of people who have " been there" themselves.
Hi Pennyannie, thank you for your reply. I have been tested for antibodies.
Please see my blood results below.
I just wanted to know if anyone experienced same problem, I.e puffy eyes after starting using carbimazole? I havent had swollen eyes before. Thank you.
Ok - I can't see this screen shot very well and having enhanced the numbers it's become a blur :
So, I think I can see a TSH at 0.01 and a T3 at 46 but no range and no T4 result but read it's over range :
I also think I see a TR ab antibody test showing a score of 20 and over range ?
Is it possible to type in the missing numbers and ranges as it's easier to see then, at least for me !
So this would be the medical evidence of Graves Disease :
Ok, it's still important to get linked into the eye clinic as these specialists work with the endocrinologist on the appropriate treatment to off set your symptoms.
If taking any eye drops for sore, gritty eyes, please ensure any lotions or potions or eye drops are preservative free.
I was well on the Carbimazole BUT some people are not : and there is an alternative AT drug referred to as PTU - Propylthiouracil :
Do you have the PIL - patient information leaflet and the list of possible side effects ?
When you edit the original post in a thread, you will also have the option to add (or remove) a single image. (To replace an image, remove the existing image, then add the new one.) This is the same process as writing a new post:
Could your GP refer you to ophthalmology as he suggest it’s thyroid eye disease? I find the GP passes everything on the the specialist if there is one involved, but you shouldn’t be left to it.
It’s unusual to have a FT3 result almost as high as FT4, as the range is lower & smaller compared to FT4. Hopefully as the carbimazole brings down your levels this will also balance out.
20 carbimazole is not a very high dose. Usually it’s started high and tritiated down, do you have a repeat blood test scheduled to see how your levels have changed. Usually 6 weekly.
Do you split the dose? That’s often recommended until more stable.
Also important to test B12, folate, ferritin and Vitamin D which get very depleted very quickly when hyper and need to be optimal. Ask GP to test.
Hello Purpelnails, thank you for replying back.Can anyone explain to me please! I suspect that i have had overactive thyroid for quite sometimes. Before I've been diagnosed I've had the following symptoms: short breaths abnormal hear beat, tiredness, those symptoms were not inerthering with my life as much. It's only 2 months ago I have had it bad , I couldn't breathe, my heart was beating fast etc.
So if I have graves disease why is my eyes were never puffy before I have started taking carbimazole? Dose it mean that my eyes can bulge any time? Or my medication control it ? How long will I have this horrible, ugly eyes? I'm so depressed, I hate to look in the mirror😥😥
For information on TED thyroid Eye disease / Graves ophthalmology
There are also many patient information leaflets from British thyroid foundation BTF. I’m including a link to the TED leaflet as NHS hospitals often stock these and hand them out to patients. Sometimes is all the information they offer unfortunately.
TED does not correlate to the severity or Graves. Someone can have manageable Graves, or even Graves in remission stage but develop TED. Sometimes TED presents before Graves manifests. They are separate.
A specialist will need to diagnose & confirm if you have TED and there are or treatment options if you do. Compilations are quite rare, so I expect you are understandably worried, but try not to be.
Read through list of symptoms on the information leaflet. You may have other eye related symptoms which you hadn’t connected. Report any eye issues to your doctor/s & be persistent in getting a referral if anything concerning occurs.
Your dose of carbimazole is quite low relative to your results - it’s not unusual to start out on 40 mg/day or even more, so you may find that when you see the specialist they may increase the dose. Carbimazole works by inhibiting production of thyroid hormones, but you will have quite a lot of excess hormone stored in your body, and it can take up to 8 weeks for this to work through the system. Until then, you may not feel much better.
The timing of the puffiness is almost certainly a coincidence. Lots of people take carbimazole and it’s been around for a long time, but puffy eyes aren’t a recorded side effect, whereas they can indicate TED. There are some suggestions which may help in the leaflets PurpleNails has suggested. I would keep pushing the GP for a referral, but if your endo referral is going to take long and they won’t refer you to an ophthalmologist until you have had your first appointment (do you have a date?), one thing you could do is go for an ordinary eye test at a high street opticians and tell them you have been diagnosed with Graves’ and are worried about your eyes. At the least, they may be able to prescribe some drops which will help, but they may also be able to help with a referral.
Graves’ is a nightmare, but once your thyroid levels begin to come down, you will begin to feel better. If you have thyroid eye disease, hopefully this will improve too, but as you will see from the suggested leaflets , it can take longer. One of the symptoms of Graves’ is anxiety, so this may be contributing to your tearfulness (and of course, it’s only natural to feel anxious anyway !) Be kind to yourself, get plenty of rest, eat well and find some things that lift your mood - perhaps a gentle walk, listening to music, reading a favourite book, some gentle yoga - whatever works for you.
Have they given you a date for another blood test ? You should have regular tests while you’re on carbimazole.
This is a link to the patient info leaflet for carbimazole, in case you’ve lost the original or maybe even didn’t get one. medicines.org.uk/emc/produc...
Thank you so much Valarian, for your detailed and informative reply.I have my blood test on the 8th , my gp said that my thyroid has significantly improved, he wanted to reduce my dose to 10mg per day, but after having a quick consultation with endocrinologists I'm on the same dose, 20mg a day.
I still don't believe that my swelling was caused by graves, I still blame carbimazole for my ugly eyes.
There's nothing I can do at the moment, but I will be looking for cosmetic surgery if I would not get my eyes back next year.
I haven't got a date when I will be seeing by endocrinologists, they have had my referral and now I'm on a waiting list but it can takes up to 2 months.
Hi kVtar, I have TED with Hashimotos not Graves & truly sympathise with your anxiety. It’s really important you see a TED specialist ophthalmologist as early treatment is so important. Ensure you take a selenium supplement every day and if you smoke, stop as this makes the condition worse. TEDct have a great advice line and will recommend consultants in your area. Remember you are not alone! I just got notification that TEDct have set up a Facebook group this week; it may be worth you having a look. Alternatively keep posting on this forum- we are here to support each other.
Hi kVtar❤️I was diagnosed with overactive thyroid in 2018, had thyroid removed in 2019, in 2018 after diagnosis I was given carbimizole my gp didn't bother doing antibodies at that time, but like you I had bad puffy eyes like I'd never slept for years, they also watered badly, turns out I had graves after I requested my endo do an uptake scan which comfrmed this along side the antibodie test, after my thyroidectomy my eyes seemed to recover but when I was put on the thyroid meds they have gone back to being puffy and watery again, I'm wondering if this is the thyroid meds? I've tried all sorts to get the puffiness down but so far have failed, also my eye sight has become very bad what's you sight like? On most days it looks like I'm looking through very watery milk I have to blink several times to focus on something it's embarrassing to say the least, I can now get my site checked as my opticians are open again so I'm going to try to get an appointment 👍 suggest you have an optician look at your eyes too
I don’t think it down to the thyroid med (antithyroids such as carbimazole or PTU) but fluctuating level is known to worsen the condition. Iv’e also seen forum posts saying eyes feel worse when levels are too low, however most things feel terrible when levels are low and if someone is not monitored very carefully when commencing anti thyroid medication falling too low is pretty common. Especially if you have as TSH focused endo who wants to see your TSH rise at the expense of FT4 & 3.
Seeing an optician is also an excellent idea, as some have said they have found the optician more helpful than their doctor.
In some areas of the uk all urgent eye care is passed to opticians by GPs for the patient to self refer. The high street opticians that are part of the scheme, deal with anything from minor eye irritations to anything that may be serious. The optician is expected to investigate and liaise directly with the hospital ophthalmology. They can prescribe certain medications or send letters advising the GP what is necessary. So although ultimately you will need to see an hospital ophthalmologist you may be referred to an optician in the first instance. **Every area is different**
Did you see my other post with the links? The replies sometimes appear in the middle of the thread and not always the end. It depends on where you reply. Hope the links were helpful and gave you lots of information.
I don’t think even a specialist will be able to predict how your symptoms will progress / when they will improve if you do have TED. Your priority must be to getting it diagnosed and getting early treatment if you need it.
Hi purpleNails❤️Like you I feel its the condition not the anti thyroid meds that cause the problem, after my full thyroidectomy my eyes went back to normal, the day after my op I looked in the mirror and no puffy eyes, later on discharge my surgeon gave me T4, at 175mg along with calcium tablets, on my first dose of T4 I didn't notice any change it was only when the T4 got in to my system did I notice my eyes becoming puffy and watery again, anyway up shot the amount was far to much at 175mg,then we found out I was lactose intolerant so was tried on several T4 meds, eventually endo put me on T3, as I was not responding to T4, still my eyes are puffy, watery, I'm on 20mg T3 now, and my last TSH was 19.32, high, although I've no hypo symptoms just hyper which I find strange given my TSH result.. The gp endo are not in the slightest bit bothered about this and continually just increase my T3, but my hyper symptoms become worse on increase, I really don't know what's going on, all I know is I feel awful and have had 2 weeks of a very bad colitis flare up, I've just about had enough, my blood was taken this Monday I've recived a message to see my gp about them obviously theirs something off with them, but you can bet he will just recommend an increase 😠
Oh poor you, it sounds terrible. Well after reading all the comments I will now make appointment to see specialist regarding my eyes. Take care and I hope you will feel better soon
Hi Brike, thanks for your reply. My vision is not bad and it hasn't changed because of my illness, thanks God!
The only changes i have got so far is my swollen eyes. I cannot describe how I felt when it first appeared, after 1 week of taking carbimazole.
I'm looking for 1 answer which seems none can give me - is my swelling are going to get worse or is it control by my meds? I want to hear peoples experience with meds in currently taking.
I will ask the same question when I see endocrinologists.
Hi kVtarActually I had a bad reaction to both anti thyroid meds I keep throwing them back so they were not getting into my system hence me going into thyroid storm eventually loosing my thyroid, but my eye problems still remained, so I'm unsure it was the anti thyroid meds I'm more incline to think it was the thyroid condition it's self, this I attribute to the fact my eyes are still bad even though I've had a full thyroidectomy I think the meds I'm on are giving me hyper symptoms hence the symptoms I have now, sweating, fast heartbeat, very puffy watery eyes, these are the symptoms I had before thyroidectomy, 🤷♀️
Once thyroid eye disease (TED) develops, it becomes a separate condition from the Graves. If serious, you will need to consult an opthalmologist. Otherwise, it can and does improve once the Graves is brought under control.
The swelling of your eyes after starting carbimazole is likely a coincidence. Check with the endo if allergy to carbimazole can be the cause of your eye symptom.
For me, the puffy eyes took the longest time to resolve. Yes, it was a bug-like look, but I was relieved that the worst, ie internal eye swelling, got better relatively quickly. That affected my vision and worried me the most plus caused pain, but the puffiness did not.
Stressing about your eyes excessively might make it take even longer to resolve. As long as u are managing the Graves, the puffiness, given time, will get better.
Hello everyone, has any of you been taken steroids for thyroid eyes disease? If yes could you please share your experience and could you please name steroids you've been taken? I'm on a waiting list to see endocrinologists, my eyes are still the same - puffy and ugly. I had my blood results after taking carbimazole for month. My blood results have improved, my GP was going to reduce my dose by half, but after quick consultation with endocrinologists I'm on the same dose 20mg per day. He also mentioned to endocrinologists about my eyes, endocrinologists suggested that steroids might be the option to reduce swelling.
I've said no to steroids only because I'm afraid of the side affect, which I have seen previously (not with eyes disease) ; swelling, shaking, mokd swings etc.
You will get more people seeing this question if you start a New Post - rather than tagging this on the bottom of your previous post.
Please also post these new blood test results since a month on Carbimazole as this will give forum members a better idea of where you are in this treatment process.
I have read of people being offered steroid treatment but my eyes only " popped " after RAI treatment and I received no help or advice.
It’s usual to remain on carbimazole for 12-18 months, with the dose being gradually titrated as thyroid levels come down and stabilise. This approach has been found to give the best chance of remission. Unfortunately, this isn’t something that can be rushed. These NICE guidelines will explain what you can expect. cks.nice.org.uk/topics/hype...
Hi kVar, I also found out i have a hyper thyroid on that day in January. My eyes began getting puffy a few weeks before I got my blood tested and before the medication. When i say puffy I mean swollen eyelids , nothing like that under my eyes. Very much swollen in the morning, gets a bit better ( but never goes away) during the day and back to swollen by the evening. First the right eye was worse than the other, now the left one is worse, the right is not as much. If I gently massage my eyelids when I wake up some liquid comes out . But yes I look as if I've been drinking and not sleeping for years ( not a drinker and not a smoker!). I even had to delete all Xmas pictures with myself in them. Thats when i noticed the puffiness. As we are in lockdown in Ireland for another good while I don't get upset much, but I'd hate to look like this at work. Is your puffiness in the eyelids as well? My GP didn't comment on it, though i drew his attention to the puffiness problem. It's really uncomfortable and hard to keep my eyes open in the morning. Best of luck to us all!
Hi Tromashka, my eyes is swollen all the time, they haven't been swollen before I've been diagnosed and before I have started to take carbimazole.I personally blame my medication for what happened to me eyes even though some people disagree with me.
Like you , I cannot look in the mirror without tears, I look ugly and there is nothing I can do about it. I was thinking to do cosmetic surgery, I've spoken to surgeon, he said I can't touch my eyes until my condition settles. I would do anything to get my eyes back.
I've book private eyes surgery for Sept 2021, I'm not going to put it with this horror for the rest of my life.
I think so, but only slightly. My breathing slightly improved, I can breathe better but I've accrued joint pain and I'm feeling sick. This is definitely side affect from carbimazole.
My eyes are still puffy in the morning. One eye is worse the other and aching most of the day. My GP didn't find it necessary to refer me to the ophthalmologist. Quite frustrating. So I'm trying to figure how to get to the specialist myself
Poor you. You have yo push your GP. I would if iwanted to see ophthalmologists, I waite until I see endocrinologists and if my eyes won't get any better I would insist yo see eye specialist
Hello, I can see this was over 2 years ago but just wondered if you could update me on your eyes? I feel the same thing is happening to me right now but I’m just one eye. I feel like since I started take the medication my eye his just puffed right out. Thanks In advance x
As this is an old post you may not get a response.
Recommend you start a new post introducing yourself and members can give advice tailored to you.
I have read that often those that have a diagnosis of thyroid eye disease are much improved once the conditions settles but early specialist ophthalmology treatment can help a great deal.
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Graves disease and RAI
New to the forum
Is anyone going through the same?
