Graves Disease Optic Neuropathy (hyperthyroidism) treatment

[9020822]

Hi, found this website and hoping for some advice. Diagnosed on Friday with GD Optic Neuopathy, complication of Graves disease from my Hyperthyroidism. Am having to go in tomorrow for IV Methylprednisolone for three days treatment then a further 12 weeks along with Radiotherapy for 10 days. Any advice this has happened so so quickly ........

[ling]

Sorry to hear this, but sounds like you are getting the treatment you need for the optic neuropathy. It should help tremendously.

Can I ask what your eye symptoms are and if your Graves is under control?

[9020822 in reply to ling]

Hi, thank for your reply, can you advice why the treatment will help tremendously I understand my Graves is still potentially in the active stage, I have severe bulging eyes, retracted eyelids, restricted movement of the eyeballs. Pain in the back of the eyes, colour vsion loss. Was refereed back in Apri by a very proactive GP then the Endo, still waiting for them to come back with an appointment, had a suspected thyroid storm attack very recently and was urgently referred to another hospital and an appointment was forthcoming very quickly, hence everything is happening very quickly.

[ling in reply to 9020822]

Thank you very much for sharing.

If you do a quick search on the net for optic neuropathy, you will see the course of treatment you describe, is the same. And in general, eye sight is improved thereafter.

Yes, out-of-control Graves can progress frightfully fast.

When was the suspected thyroid storm? What were your symptoms?

Referred to another hospital - does that mean you have already seen an endo? Or was that the opthalmologist?

You are on carbimazole?

[ling in reply to 9020822]

Dear 9020822, right now, what's most important is your eyes treatment and getting the Graves under control.

Best wishes and God bless you.

Looking forward to hearing from you.

[pennyannie]

Hello 9020822 ! ( Les Miserables ? )

Apart from this excellent website you might like to also look at the Elaine Moore website.

This lady has Graves Disease and since her treatment for Graves in the late 1990's has spent her life researching and collating all things Graves for all Graves patients.

It is stateside so there maybe some differences in medical protocol but it is a well respected and leading research foundation in Graves Disease.

I am with Graves disease myself and have not experienced anything like you describe and am sorry but am not able to offer any information on this particular aspect of the disease.

[9020822 in reply to pennyannie]

Thank you, very interesting reading on her website

[Erin60]

Hi, I’m sure this must be painful and scary for you. I have Graves and severe dry eye with some ptosis. I don’t have the eye problem You have and I’m not really sorry you are experiencing this as far as I know there is one monoclonal drug called rituximab that is used in graves eye disease, I am not sure the prescribing criteria but it might be worth asking.

Strangely enough I read an article the other day about a new monoclonal drug being trialled it is called:

teprotumumab it apparently works on the IGF Pathway.

Here is the link:

endocrineweb.com/forward/em...

Are you on carbimazole and propranolol at the moment .

It’s stressful for you and that’s the thing as well that the stress of the disease stress is the worst thing for Graves.

[9020822]

Thank you for your reply, I am now discharged from hospital, unfortunately I have had a sever reaction to lIV Methylprednisolone, currently battling SIDM (steriod induced Diabetes Ma...), had to have rapid insulin to lower sugars. Home, back at work monitoring sugars and next week start the 12 week program of IV once a week ho hum, perservering with it for now

[ling in reply to 9020822]

Whoa! Thank you for the update.

Yes persevere !

The SIDM may well be temporary.

I trust your eyes are improving.

God's blessings be upon you during this trying time.