Thyroid Eye Disease does it clear?

Hi I am not sure if RAI is the best thing if you have the eye problem - Does anyone know anything about this? I had a friend who had RAI twice until it finally worked. My Endo was definitely more for surgery over RAI - I think because I was so poorly.  I am really glad I just stayed with the medication as I was very scared of the op and RAI - severe anxiety and extreme bp issues.  

HI emily, I was reading up about the RAI treatment and so far what I have read it isnt really the best idea to have the RAI whilst suffering with the eyes. I think I need to do a little more research into it to more sure though. 

 

A short while after I first started seeing an endocrinologist the policy changed.  At first he recommended the RAI then later told me that studies had just been released showing that RAI increases the danger of Thyroid Eye Disease.  The TED is caused by the autoimmune response, not the thyroid hormones, and the RAI does nothing to reduce the danger of the autoimmune attack on the eye muscle tissue.  Some say that surgery is better because there is no thyroid tissue that the immune system would interpret as a threat...  At least I believe that is the current view of the matter.

I simply flatly refused to have either RAI or Surgery.  I took Methimazole for 2-3 years and have not needed it for more than 2 years, now.

Hi Fern, I think I have read something similar  to what you are saying, Im not sure that I want the surgery yet I think I would like to exhuast all my options first before settling for the surgery. 

I am glad I didn't have surgery. I was diagnosed with Graves' Disease by a Neuro-Ophthalmologist, but I probably didn't have the TED that they thought at first.  I simply have Strabismus.  Whether the TED goes away on its own if the Autoimmune component quiets down, or if Eye Muscle surgery is always needed, I don't know.  I just know I had Strabismus since my teen years and I was 60 when I was diagnosed, which is when my eyes became much more deviant.

Hi

I have suffered with Grave's disease for over 20 years and I'm shocked that endocrinologists are still advocating treatment with Radioiodine for thyroid treatment when the eye disease has been diagnosed . 

Speaking from my own experience my eye disease became far,far worse after Radioiodine and I eventually had a total thyroidectomy as I was allergic to medication .Once my thyroid  levels had settled about 12 months after surgery ...I began the treatment for my eyes .The 

Ophthalmologist stated that several of my issues with my eyes had been caused by the Radioiodine so after 5 surgeries on my eyes I  would implore you not to go down this route 

Thank you Joanna for sharing your experience.

Hi so did your eyes settle by themselves

My eyes are fixed in the deviant position that they have been in since my last eye surgery.  They adjusted my eyes as much as they could with the inner muscles and they made plans to adjust them with the outer muscles, but there are drawbacks to it, so I refused that surgery.  Instead, I wear reading glasses all of the time.  My eyes are 20/20 for distance, each independantly. So for distance needs I look overtop my glasses using one eye or the other.

For reading, the prisms, extra magnification, and the near prescription I needed, are sufficient so that I can read with my eyes working together up to about 10 inches in front of my face.

Otherwise, my eyes feel restful having the double vision blurred by the prescription for reading.

So I cope well enough for my needs, and don't expect my eyes to improve in any significant amount.

I was given RAI in 2007 and was not offered any other alternatives.  Wish now I had done some research as I have been suffering from Graves Eye Disease and have had a 3 wall orbital decompression on my left eye, which is now worse than before and luckily I refused the same on the other eye, which still bulges and my eye I had surgery on, my left eye down to my lip is numb from surgery last February.  I am now on steroid infusions, which do not seem to help, things seem worse to me and I have to have XRay treatments in January to reduce muscle swelling behind my eyes.  Just seems like I should have just accepted what I had and not had surgery or any of it.  Getting very frustrated with doctors and depressed with no good results whatsoever.

My eyes are/were probably affected more by simple strabismus than by the Graves' antibodies, but I believe the antibody production is more related to the general feeling of being unwell, than any other thing.  I have been taking Acetyl-L-Carnitine for about a year and a half now, I think, and it seems like it helped my TSH production to be raised into the normal range without symptoms of being hypothyroid.  Either that, or that Wellbutrin, which I started at about the same time, has had that effect.  

Before using those products, I was cold, lethargic, foggy headed, etc. my TSH was near zero.  My TSH actually raised when I gradually reduced the anti-thyroid drug, Methimazole, going off of it entirely, and again when I started on very low dose of Cytomel--1/8th of 5mg.  But I started taking Levothyroxine, built up the Cytomel to 7.5mg, and didn't wait even a week since the last increase before I had my blood tested again, and was found to have had my TSH drop to zero again, so I was taken off of both of those tablets, and returned to my disfunctional state until I was started on the Wellbutrin.  The A-L-C, I started on my own from a health food store.

Since then, my TSH returned to normal and became stable there.  My symptoms relaxed and I felt like my immune system also relaxed.  I have been so nearly normal, and stable, last July the endocrinologists said I only needed to see them once a year and have blood tests twice a year.

 

That is great news Fern!  Congratulations!

Thanks, Linda.   I just hope others also have great success. 

Hi Fern,

I am suffering from TED right now and found your response helpful. Would you kindly describe the condition of your eyes after years on medication? How much did it improve?

Thanks very much

The doctors have varied in their opinions as to whether, or how much, TED affected my eyes and how much they were affected by simple strabismus.  I may not have had TED at all, really, in spite of what they told me at first.  My problem was not with eyes bulging like most Graves patients, but with my eyes crossing.  

Eye doctors said the eyes would not improve without surgery, but they could get worse as long as the Graves' antibodies were at work.  The Endocineologists seemed to think that the eyes would correct themselves, however. 

My eyes, which are severly crossed now, didn't improve enough to matter at all due to any medication, anyway.

I can read with prisms of maximum strength, magnification, and far-sighted correction [since I am nearly 68 now and my eyes have lost their ability to adjust their focus, like most of us when we get older; (my eyes having also improved in distance vision,too.)]

I don't suppose I am really of any help, however, and I'm sorry.  I am of the opinion, however, that if any pill could help, it would probably be the Acetyl-L-Carnitine.  I also take Methyl B12 and Methyl folate which may also help with the thyroid symptoms.  Those three things are available at health food stores.  Perhaps you would want to check with your doctors for their opinion.

I read that  radioiodine is not the best therapy for thyroid eye disease from a reputable source. You are better off with surgery.  And my opthamologist told me that thyroid eye disease usually has a 2 year life span where it can stay the same or in rare cases get worse. I am personally trying to look for herbal remedies and a diet that can battle the underlying autoimmune disease and see if that helps my eyes. This disease is devastating and as a woman very hard on my self image and confidence. Any suggestion on a diet or herbal remedies would be appreciated. Thanks 

I was told by several Drs that the thyroid eye disease is independent of the thyroid disease as far as treatment and it's course of disease. So treating the thyroid does not necessarily treat the eye disease. I personally am looking for an herbal remedy or diet to reduce my inflammation and autoimmune disease itself. As my thyroid has normalized my eye disease has gotten worse. 

I have now been over 2 years in complete remission, autoimmune and all. I believe the autoimmune problem dies down when you start feeling better, and you can start feeling better when you are taking less anti-thyroid drugs. Drs seem to want to get medication to "attack back", and that is when the immune system ramps up its army. No Good. In my comment above I mentioned 1. the A-L-Carnitine to take [or plenty of red meat daily] and 2. the methyl versions of B12 and 3. Folate; also 4. selenium or one Brasil nut daily. These all support the thyroid system from the pituitary to the thyroid to the liver in converting T4 to T3 through de-ionization, etc.

'Feeling good' really increased for me when I was prescribed the anti-depressant Wellbutrin. a plentiful and good diet also helps. [Water, veggies, whole grains, meat and protein, and fruit, with desserts, etc. in moderation.]

Thank you so much Fern12. This is really helpful. I am glad to hear you are in submission!