Struggle

[jaylyanR]

Hello guys I’ve been diagnosed with overactive thyroid last September and not long after that I developed Graves’ disease . This last year has been nothing but a struggle for me mentally and physically I don’t feel myself,I don’t know how long I can cope like this. I have been on medication for about a year now and my appearance hasn’t changed on my graves ,my doctors have told me I will have to have cosmetic surgery but I have to wait so long for it . I don’t want to leave my house without sunglasses on ,winter is coming what am I gonna do when it rains I can’t wear sunglasses . I’m so anxious so depressed never felt so low in my life. Has anyone going thru this and can anyone help me . I wanna be myself again 🥺

[pennyannie]

Hello Jaylyan and welcome to the forum :

Where abouts are you in the world as there is no background history on your profile page ?

Dealing with thyroid issues, is exhausting and dealing with Graves as well is, without doubt a struggle and you are not alone in all this and you can always off load on this amazing forum as there are members here who have been, and are going through, similar situations.

I wore sunglasses for around 2 years when I couldn't " face ' loooking at myself - and my facial distortion wasn't seen as severe enough for me to " qualify " for surgery.

There is decompression surgery, but I believe the timing of this needs to be after the active phase of the Graves Disease.

There is a website you might like to dip into which I found very useful in my learning curve with Graves - it is the Elaine Moore Graves Disease Foundatio website and it is stateside. Elaine herself has Graves and since her treatment with RAI thyroid ablation in the late 1990's and feeling no better, she started researching this poorly understood and badly treated auto immune disease herself. Elaine has now written many books, one on Graves Opthalmology and offers a very comprenhensive website with an open forum, much like this amazing platform, and offers helps and advice to all Graves patients world wide.

It's very early here, and I'm sure more support will follow once the UK wakes up !!!

[asiatic]

Sorry to hear you are struggling. You say you were diagnosed a year ago so there is hope your eyes will continue to show a little improvement. Mine are still improving after 4 years but are still very light sensitive so I do wear sunglasses even during the winter and see many others doing the same. As you seem quite down I am wondering if you are on the correct dose of meds. Often Graves is overmedicated and going hypo can cause depression and worsen TED. If you post your latest blood tests people could comment on this and with the correct dose you may find your mood and eyes improve.

[jaylyanR]

Thank you all for sparing the time to reply to me . I’m trying to find out how to upload a pic but can’t do it. I am on carbimazole Monday to Friday and it’s been reduced to 5mg,also I’m taking selenium daily supplements.For my graves I was on immunosuppressant Cellcept but I’ve decided to stop them 3 weeks ago when I’ve caught stomach flu and was violently sick for 10 days ,and also we are still in the middle of a pandemic.Pennyannie I’m so sorry you had it too ,has your eyes gone back to normal or have you adjust to it now ? Also I’ve started a gluten free diet having read that helps to reduce inflammation , but been reading lots of different things on the internet ,is there anything I need to avoid eating ? I am planning to start exercising but I’m so exchausted all the time that I haven’t managed starting it yet.

And also how can I know I’m not on the active phase anymore ?I’m living in the UK and I’m eligible for decompression surgery but I have been looking travelling abroad if I have to wait long over here as I don’t want to wait another day looking like this .

[Valarian in reply to jaylyanR]

Carbimazole is usualy titrated over 12-18 months before they trial taking it away altogether to see if you are in remission. You won't want to rush this stage, as if it doesn't work, with active TED, you won't want to go down the RAI route, which means thyroidectomy or potentially long-term carbimazole would be the only alternatives if your Graves' isn't in remission.

I don't know a lot about TED having (fingers crossed) been lucky enough to escape this, but although assciated with Graves', once established it seems to run a somewhat independent course. The Cellcept is preesumably specifically to help with the TED (are you also on steroids ?), so as TED seems to be your main concern at the moment, it would be worth discussing with your specialist if you are no longer able to take it.

Are the sunglasses mainly about appearance, or mainly about glare ? If you don't normally need glassses, you could have some made up with plain lenses and very lightly-tinted (perhaps reactive) lenses, in a style which also helps with the cosmetic issues. Another option (and I've no idea whether this is possible at the moment) would be to book a session with a make-up consultant, for some tips...I know someone with a completely different cosmetic issue who found this made a lot of diference, even though her scars couldn't be disguised altogether.

Don't know whether you've seen these, may be be of interest:

btf-thyroid.org/thyroid-eye...

patient.info/hormones/overa...

[pennyannie in reply to jaylyanR]

Hey there again ;

Well my eyes are a lot better now but I do need to filter out UV sun light, I do get dry burning eyes for which I use perservative free eye drops.

My Thyroid Eye Disease ( TED ) was caused by the treatment I was given for Graves Disease. I was given Radioactive Iodine and not told of any side effects but that this treatment was perfectly safe. Evidently TED is a known side effect of RAI and if I had my time over again, I would want to stay on the AT drug, Carbimazole indefinately, as I was well and getting on with life.

Are you with an eye consultant who understands how TED progesses ?

As I said before I think the timing of the decompression surgery is crucial and must be after the active phase of the disease, have you been given a time frame, are your levels coming down.

Are you also with an endocrinologist monitoring your T3 and T4 thyroid hormone levels ?

Do you have any blood tests to share with the forum members ?

It would be a good ideal to maintain your core strength at optimal levels and suggest you ask that your ferritin, folate, B12 and vitamin D are tested and then post the results and ranges back on this forum for considered opinion. I need to maintain all four of these on a daily basis to support my overall wellbeing and better health.

Your metabolism has been running too fast and there's a good chance too fast for you to metabolise your food properly. Now you are on the AT drugs they may have slowed you down too much and you can suffer the same nutirent defeciencies if your metabolism is running too slow. Ay one end of the scale you have hyperactivity and an over active thyroid and at the other end you have an underactive thyroid and hypothyroidism. Ideally the AT drug should be just enough to keep you stable with a T3 and T4 in range during this phase of the illness.

Your thyroid is the victim in all this and not the cause - the cause is your immune ststem attacking your body and it is because the thyroid is such a major gland that the effects of hyperactivity can be said to be life threatening.

Neither hyperthyroid nor hypothyroid are good places to be and hopefully you will be stablised by now and with few symptoms as you through this stage of the disease.

Going gluten free may help you - exercise may help, but nothing extreme as your body is a bit " all over the place " having been hyperactive.

Graves is said to be a stress and anxiety driven auto immune disease so, try and relax and enjoy anything that takes you " out of yourself " and allows your brain to " turn off " and be selfish and do stuff you enjoy and find pleasure in.

It would really help the forum members to see actual numbers of blood tests results, as otherwise it is just opinion and we are all different and end up on here for very different reasons.

If you do have some current blood tests results it's a good idea to start a new post with a brief recap of your situation and then you'll get considered opinion on the specifics.

P.S. You might like to take a look at the Thyroid uk website - the charity behind this forum : they have all the basics on both hyper and hypo symptoms and you'll also learn a lot just reading other peoples posts on here.

If you want to reply to an individual who has replied to you you need to press the button under their post, otherwise they are not notified you have written to them.

[asiatic]

My TED went through 3 stages. Active for about a year, plateau for about a year and now improving.

Do you see an opthalmologist who specialises in TED ? I was seen every 4 months. When in plateau stage my eyes weren't as irritated and the specialist could tell from all the measurements that they had stopped worsening. After 4 years I was at the stage of being offered surgery but declined as the bulging is only slight now and the double vision controlled by stick on prisms Also I hate the idea of surgery ! Have you any bloods - FT4, FT3 and TSH that you can share ?

[Buddy195 Administrator]

Hi there, I have Hashimotos & TED. Light sensitivity is a big issue for me & I always wear light reactive glasses to help. In bad days I wear darker prescription sunglasses. These are also useful if my eyes are particularly swollen, as they give me confidence to go out. I use eye drops a lot to help with dryness (HycoSan Extra) , but have found lutein & zeazanthin (eye complex 7 from Amazon) and black seed oil also help improve dry eyes. I’m gluten free & take selenium supplements daily. The TED Charitable Trust has useful information packs & very friendly telephone support. Best wishes to you