[Jules]

#1063431

Updating – I had my blood work done yesterday and the Dr called this AM all he did was ask so are you really tired? I said yes but the cold is worse than the tired. He said well everything has worked perfectly and said all blood TSH T3 T$ all in the hypo stage and is starting me on the replacement tonight. today is exactly 8 weeks since having the RAI . 20mCi. Any suggestions on the synthoid (SP) would be great.

I knew that I was not feeling well but I put it off to the flu that I had over Christmas. I could not get off the couch this weekend for New Years. Literally.

I am still having the eye issues it really got bad last week. I had called my eye Dr at Shiley and requested Streiod drops to get me through until I can get back into him or the new neuro opth.

I go to a neuro Opth on Monday and see what he says differently from the Shiley. I love the Shiley Eye Center however my insurance wants me to be seen in our group of Dr’s before I get referred to SEC. So that is my update. I will be checking in from time to time about what is happening with the Eyes and the journey of getting regulated on the synthoid (SP) .75 to start.

Happy new Year everyone. I truly wish all of you the best year ever. Last year sucked that I really this year is better in so many ways.
J

[snelsen]

#1063432

Hi Jules,
As veteran Synthroid taker, this is what I have learned. I would like to think that you are told these things by the doc orpharmacist, but want to be sure you get off to a good start.
1. Take first thing in the morning on empty stomach. What works for me, is having a glass of water and the pills by my bed.
2. Wait 1/2 hour before eating. I put cream in my coffee (yes, I greet every day with a cup of coffee (:. So it works pretty well for me to do the routine I have suggested.
Also, do not take vitamins or supplements until four hours after you take Synthroid.

You did mention you were beginning the med tonight, I think? I suggest taking it in the morning. I don’t think this is a totally critical path, but I think that is the best way. At any rate, the most important thing is to take it on an empty stomach, following the rules above.

You probably will notice changes in how you feel, before the labs reflect them. So hopefully, your endo will consider your labs, which should be at least every two months or a little longer, with how you are feeling. If you have noticeable symptoms one way or the other, you should call him, and he will probably order an extra lab to see where you are.

Re TED. It sounds like you are in the active phase of TED. I am glad you are seeing a neuro-optho. Be sure to ask about
the prednisone. I have been having a LONG battle with TED. Perhaps you can use the search engine to look at some of my other posts, and/or put TED in the search engine. My own experience with prednisone, is that I had it a couple of times, with the LONG appropriate taper each time. I had 60 mgm q. day for a month. I hate the drug, how it made me feel. It was given to reduce the swelling that was beginning to compress my optic nerve. Following that, I had a couple rounds of Solu_Medrol IV (intravenous) for the same purpose. I had very slight improvement of my double vision (which was terrible) while on the pred, but it came back w when discontinued.
As I went through the active phase of TED, I was also seeing an eye surgeon, fairly frequently, who did a lot of different measurements. Ultimately, the eye surgeon did strabismus surgery (eye muscle surgery, which they move the muscles of the eye, purpose is to help the double vision.) I had that fairly recently, and it has helped a lot. Feel free to write with more? about TED.
shirley

[Jules]

#1063433

Thank you Shirley – Yes I had been on Prednisone I am one of the lucky ones who is allergic to the base that they use. The next step is for the Steroid shots into the eye foe the swelling. I had called for the eye drops because I was desperate and deduced that if they were going to do the shots I knew that there had to be an eye drop I could try until my appointment Dr. K was great at stating on 12/30 at 1pm call him if it got worse over the weekend and don’t worry about it if I had to make the call I was on his Please contact list which that in it self was reassuring that I was in good hands. The double vision goes away with in minutes of taking the drops and as long as i am faithful in taking them I seem to be in realitavely good condition. So I go to the neuro on 1/10/11 and then from there who know. Thank you for the med tips I love my creamy coffee in the morning. Dr said either Evening or morning as long it was on a empty stomach which ever is better for me. I an in a hurry to get started tonight but will take your suggestion and start in the morning.
J

[susandemarco]

#1063434

Hi Shirley and Jules,
As I stated to Shirley in earlier posts, I am seeing an ophthomolgist who deals with Graves Eye Disease. What I want
to ask about is you both mention a neuro-ophthomologist. Until now, i have never heard of one. How do I go about
finding one, and is it really necessary?
Susan

[snelsen]

#1063435

Hi Susan, I think I have learned in the past day or two that it is better to begin a new thread, since we will not be talking about RAI. Although the subsequent posts are not about RAI, either!
So, I am not sure what to do. Hope the facilitators help with this.

Re neuro-ophthamologists. My experience is that when I was first recognized to have TED, the ophthamologist told me I needed to be followed by a neuro ophthamologist and a strabismus surgeon. I already had double vision and bulging eyes at this time.
I refer to my neuro-ophth doc as the "keeper of my optic nerves." This office did color exams, and visual field exams by machine, not by wiggly fingers. That is not good enough to test visual fields for TED. In my case, it was very wise for me to be followed by the neuro opth doc, for my color recognition of red began to change, and my visual field testing showed that I had decreased vision, especially in the left eye, and most prominently in the left peripheral visual field. I had no idea at all that my vision was decreasing. This was happening because of the swelling in the orbit, due to the fattening of the eye muscles, or fibrosing of the eye muscles, plus increased orbital fat. This, in turn, put increasing pressure on the optic nerve. And this meant that I had optic neuropathy, which meant that I could lose my sight. So it was necessary to do an emergent orbital decompression (OD) even though I was in the active phase. Then the pressure on my optic nerve was relieved, my visual fields returned to full. This is kind of rare, and I seem to be having the distinction of having one of the more severe experiences with TED. I have been seeing him ~every 2 months, or when I notice vision changes.
The other doc, I have seen aprrox. every 2 months, and that office monitors my double vision, which was horrible for me.
(The double vision, not the office!!! They prescribed prism glasses, which I have read on this site has been immensely helpful to some people, but they did not help me at all with my double vision. I had to wait about a year and 1/2 until it was concluded that I was not in the active phase, to have the eye muscle surgery (strabismus surgery) which changed my world for the better in a big way, enabling me to look straight ahead, and up about 30 degrees, with no double vision.

Perhaps your own eye doc is covering these bases, and/or you can ask him/her about seeing a neuro-opth guy, at least to get a baseline. It is my personal opinion from my own experience, that the visual fields by machine are important when in the active phase.
Do write it I have not been clear with my answer.
Shirley

I

[susandemarco]

#1063436

Hi Shirley,
Thanks for the very explicit answer. My doctor is doing visual field test with a machine. He has done two so far. He
told me the results of the last one was very good. However, as I do not have double vision all the time, sometimes
at night when I am tired and it is only when I watch TV, and then it is mostly when I am trying to read the bottom
of the TV. My next appointment is March 2. We will see what happens then.

While you were going through this, did you drive. I still drive, but I do not feel comfortable going long distances or
places that I am not familiar with.

Susan

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