[nowWHAT]

in reply to: Questions about Ted #1063681

What is interesting in my case of TED is that I DO NOT HAVE ANY AUTOIMMUNE ANTIBODIES. And I have read that if there are no antibodies present that vit. c, alpha lipoic acid and other immune boosters should not cause more havok. I do need to discuss this latest treatment with prednisone with my naturopathic m.d. My other m.d.’s definitely know what I am taking naturopathically as that is CRUCIAL that they know and can advise me if there are contraindications. Now that I think about it, the ophthamologist made no mention of the vit. c and alpha lipoic acid. I will make sure he is aware although it is in the chart…
The bottom line is I guess I am disgusted that I am having to use the prednisone, but I do know that it IS necessary to relieve the edema in my eye and surrounding muscles. I am so very aware of the side effects… I am only seeing some weight gain early on… No mood swings yet. I am trying to stay optomistic about the other things that could orrur.

Thanks,

Paula

[nowWHAT]

in reply to: Questions about Ted #1063679

O.K. THANKS FOR THAT CLARIFICATION. i DO NOT EXACTLY UNDERSTAND THE MECHANICS OF THAT BUT i WILL TAKE IT AT FACE VALUE. : )

[nowWHAT]

in reply to: Questions about Ted #1063677

Thank you to ski and shirley for the info and assurance that what I have read has been the more extreme cases… It is stressful to have so many ‘unknowns’…

Can you elaborate on why the immune boosters actually make the hot-phase worse? …my naturopathic m.d. wants me to increase the alpha lipoic acid and the vitamin c- both of which increase immunity, amongst other things! I have read about people who report using alpha lipoic acid specifically when the TED exacerbates because of its anti inflammatory properties…

So, now I struggle with d/c’g both of these altogether if I follow the traditional medicine route or following holistic medicine that ALSO has treated MANY diseases successfully when the traditional approach has not been such a success…

I know you cannot really comment on that- i just need to research further and understand why I should/shouldn’t use certain nutrients and be informed.

Thanks again,

Paula

[nowWHAT]

in reply to: Questions about Ted #1063674

I was hypOthyroid for app. 5 yrs and on 50 mcgs of Synthroid. I did a naturopathic detox to include vit c back in July, 2009 and by Jan. 2010 was euthyroid. I had noticed that my L eye appeared slightly larger a couple of months after starting the detox, but it was pain free and so slight that I was not sure what i was noticing. (perhaps there was actually r eye lid lag, caused by being close to 50 and also weight gain…).

…I went to the Optometrist in Oct. 2009, who noted the L eye was larger and said I should see my M.D. I waited quite some time because of no insurance and no issues or changes noted in my eye, and I decided I would address the eye issue later.

Well, 10 months has gone by and my thyroid is still normal, but, I have felt considerable changes in the L eye in the last 3 months, as well as seeing a mildly noticeable difference in the eye protrusion, pain in the inner ocular eye muscles, of course dryness that I now understand has been going on for 25 years with excessive tearing in the L eye that has now progressed to gritty dryness (I do use preservative free lubricant).

So, I saw my family prac M.D. a couple of months ago to address the L eye and had full labs–no autoimmune thyroid issues or abnormal thyroid function tests. I had an MRI to R/O tumors/cancer ass. w/ the proptosis/exophthalamos. MRI normal. Thyroid US normal.

So, it seems I have thyroid eye disease. I went to an Endocrinologist after seeing my optometrist a few weeks back, and he said "let’s just watch this". I DID NOT LIKE THAT ANSWER! I s/w the optometrist again, who referred me to a NEURO OPHTHALMOLOGIST.

My vision field test is normal. My L eye has lower lid lag now and the inner ocular muscles hurt all the time. I have been put on Prednisone 20mg qd that was increased to BID a couple of days after starting the drug. I have been on this med less than 1 week so far.

I know the side effects and am not at all happy, but , do not know any other viable options. My Naturopathic M.D. thinks that what ever attacked my thyroid is now attacking my L eye and she wants me to increase the vit c to detox this "new situation" in my L eye. She dismisses it as being strictly thyroid related… And, as I said before, I have no autoimmune antibodies that would suggest prior Hashimotos, etc.

Oddly, back in August, i had a wicked upper respiratory ‘virus’ and suddenly woke up with ‘allergic conjunctivitis’ in the L eye with greenish crusting that changed to a clear weeping (all during the weekend, of course). So, I went to the m.d. on that Monday and he put me on eye drops to address the ‘allergic conjunctivitis’. Things have not returned to normal since that strange episode regarding my L eye. No one seems to make note of the details of that strange eye infection or that it could possibly have something to do with all I have been going through with my L eye since August. It is oddly coincidental that this ‘infection’ exacerbated or precipitated the symptoms I now have. Can a virus cause proptosis, and this constellation of symptoms I am having? I read online about a couple of unusual cases where the proptosis was caused by asymptomatic fungal sinus infections that affected the eye muscles…

In any event, I am concerned from what I have read about TED and that I will progress to needing prisms to see because the clinical course looks like I will eventually have double vision and horrifically proptotic eye(s) and who knows when this will ever end? DOES ANYONE HAVE ANY INFO THAT COULD EASE MY MIND???? Or any input about all I have discussed?

Thanks,

Paula

[Author]

Posts