mega dose steroids for Thyroid eye disease

[Klytie]

My daughter has been told her TED warrants three mega steroid injections, given in an eye hospital over three days. Internet info on mega steroid injections are scary. No doubt my daughter needs some urgent help with her eyes - has anyone any experience that might help us through this? Many thanks to you all. x

[shaws Administrator]

I am sorry you are so worried about your daughter plus the injections. I cannot help as am only hypothyroid and hopefully someone who has/had TED will respond.

I think sometimes a mega dose of steroids, short term, might be the only choice to calm down the inflammation or whatever causes it.

Best wishes and hope everything goes smoothly.

[Clutter]

Klytie, you may find some info in these posts healthunlocked.com/thyroidu... and healthunlocked.com/shambles and healthunlocked.com/alangardner

[shambles]

I was treated with IV steroids for thyroid eye disease as the muscles at the back of my eyes were pressing on my optic nerves.

Steroids are used to try and halt the progression of the eye disease which is in all cases a very good idea no matter what stage the eye disease is at as once it progresses it takes a very long time to reverse if indeed at all.

I went for 10 IV's of 1000ml and 2 further at 500ml. This is as high a dose as they will give. As far as the administration of the drug, it's fairly straight forward. Takes around an hour to put in via IV in the arm. The side effects are varying from person to person. for me I got 'moon face' which I think most people are familiar with. I gained around 6 kilos again pretty normal for steroids and my blood sugar went a little high for a while. I found them to be very hard on my mood. i became very stressy, agitated and could hear my heart thumping in my chest. Lastly my joints started to hurt by the second half of the treatment.

High doses of steroids are reportedly bad for the bones long term so it is important that they give your daughter calcium during her treatment and perhaps increase her vitamin D3 intake along with K2.

I strongly suggest you or daughter join Facebook thyroid eye disease group which has about 800 people on world wide and has been invaluable to me. facebook.com/search/str/THY....

Please please ask if you want any further help. I know how distressing the disease is.

I wish you both well.

[Hidden]

You should get an appointment with Moorfields in London, immediately, the best eye hospital in England and probably in the world. They will sort you out. They have over 100 consultants who specialise in every eye condition known. I have recently been treated there when I was told I may go blind within 3 months. Complete success.