I have Graves Disease and now diagnosed with Thyroid Eye Disease. The consultant has advised me that I should have 12 weeks of combined intravenous steriods and radiotherapy treatment . Has anyone had this treatment - what are the side effects and risks ? what are the alternatives ?
hi their the only thing i know that when you have radiotherapy treatment you could lose you hair of you body but don't worry it does grow back as for the intravenous steriods treatment not sure on that but hope all goes well for you please keep in touch just to let us know how you get on will be thinking of you. bigalan
AL14, sorry you having problems with your eyes.
Yes, I have had IV steroids and was offered radiotherapy at the same time. I declined the radiotherapy but finished the 16 weeks of IV steroids in which I had 1000ml steroid for 14 weeks and 500ml on the last two sessions.
The steroid procedure wise is pretty simple as you might expect. Cannula in the arm and takes around one hour to put the meds in no pain or discomfort at all. Each week should be tested for blood sugar, weight and kidney function (urine). You should be given and tested for calcium. High dose steroids can cause bone problems later on so important to protect them during treatments. patient.info/health/prevent...
Side effects I think most people including me suffered from moon face which will go some time after the treatment. It makes you speed up, wired and that affects sleep and can make you irritable. It made me feel anxious for a while. Many gain weight. I didn't, I lost!
Radiotherapy is 10 consecutive sessions of low dose external beam. They use much a lower dose radiation than that normally given to say cancer patients. I was told some people sometimes feel they are getting a cold. I found this video informative:- youtube.com/watch?v=Y7KZhkt...
I wish I had been diagnosed early and had the option for this treatment. I was diagnosed with Hashimotos last week and expect a TED diagnosis after I next see my neuro opthalmologist.
Just as a cautionary tale.. 27 years ago when my symptoms started my vision went from 20/30 and 20/40 to 20/200 and 20/400 over the span of 2 years. (I was college aged.) Still, no one caught the problem. Now, much later, I have developed monocular diplopia that gets very severe at times, same with dry eyes, and I have pain every single day around my eyes (especially the worst one) and on that side of my face. My face looks distorted from the uneven swellling of my tissues. My eyes don't bulge, but the eyelids, and from the eyelids up about 2 inches I get swelling and pain, and under my eyes down to my teeth. I'm also extremely light sensitive at times.
I am going to a low vision clinic in a couple of weeks and will probably end up with prisms to correct the light refraction problem.
So, take into consideration the possible harm of waiting and seeing. Everyone is different. And not everyone has the same level of destruction coming their way. But I can tell you that having such an impact on my vision, I would gladly have taken whatever treatment offered. I used to read all the time and paint and draw. Not anymore. Too painful and too much double vision. It sucks.
Best of luck to you.
Jen
Hi AL14.
I am sorry you have a second thyroid disease The following extract is from Dr Toft's article which might be helpful till someone who has had your problems can respond. He was President of the British Thyroid Association:-
4 How does thyroid eye disease manifest itself and how is it treated?
Most patients presenting with the hyperthyroidism of Graves’ disease will have some evidence of thyroid eye disease, ranging from lid retraction with excessive lacrimation in bright light to marked exophthalmos with limited eye movements, diplopia and reduced visual acuity.3
The hyperthyroidism of Graves’ disease and thyroid eye disease are best considered as two separate, organ-specific autoimmune conditions, which frequently coexist. This explains why the eye disease may precede the hyperthyroidism or even occur for the first time years after successful treatment of hyperthyroidism.
The eye disease has its own natural history – a period of deterioration, followed by one of stability and ultimately of some improvement. But the ophthalmopathy will worsen if thyroid function is not controlled – whether through inadequate or excessive treatment.
The eye changes often persist for two to three years after successful treatment of the hyperthyroidism and although there may be significant improvement there is often residual disease, which can be improved by orbital decompression, strabismus surgery and eyelid surgery.
Of all treatments of the hyperthyroidism of Graves’ disease, iodine-131 therapy is associated most often with a worsening of the ophthalmopathy. For that reason it is relatively contraindicated in patients with significant eye disease. For these it may be better to use combination therapy with carbimazole and levothyroxine for the best possible control of thyroid function.
But if radioiodine is the chosen therapy, enteric-coated prednisolone 30-40mg daily should be prescribed for six weeks, as this has been shown to prevent deterioration of ophthalmopathy.
5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?
The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.
Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.
There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.
But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.
Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.
Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.
my lady had exactly the same problem , which was treated by moorefields [ adnexal dept. ] ......the steroids were taken via soluble tabs -- a damn site easier to handle and manage yourself -- over about 6 months -- and then completed 10 consecutive days of the radiation treatment -- which was nothing short of superb -- , the worst part was actually them making the mask , the soluble tabs were reduced on a gradual basis which took the time but with manageable side effects --- the radio - treatment is done at barts by a separate specialist of MR V. at moorefields , who is brilliant ...... it will take a little time to get there [ it took us about 15 months before the actual radio treatment ] .....but it will be worth it in our experience ..... and moorefields do keep a permanent follow up check on you ........hope this is of help to you .....alan x
Thank you for all your comments and support. I think I have to take the advice to proceed with the treatment even though I am very anxious and concerned over the side effects but hopefully they will be better than my eye problems deteriorating further and leaving lasting damage. The physchological effect is massive especially when your eyes and face are the main image you present to the rest of the ,world !
I think I need to try to stop feeling sorry for myself and try to tackle this next phase of this" horrendous disease" with a positive attitude.
I have completed the treatment with last radiotherapy session on Friday 6th November. Seeing eye/ thyroid consultant on Friday - still feeling really ill. No improvement to eyes yet but I think if I had not gone ahead with the treatment my eyes would have deteriorated considerably. Still have double. Vision, watering eyes, puffy eyes, pain in eyes and eye strain.
I also think I am having withdrawal symptoms coming off steroids - stomachs problems, headaches , joint and muscle pain, fatigue, mood swings and cannot sleep. Still trying to be positive and hope things will get better
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