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in reply to: RAI set for Sept. 30 #1063873

Hello, I am not a bit aware of refraining from milk and dairy related to Grave’s. Have a piece of cinnamon toast and a nice glass of milk, sounds like it would really float your boat!
Seriously, I am not a professional, but this is simply not familiar.
Shirley

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in reply to: NEED TO HEAR FROM OTHERS RE THEIR EYE SURGERY #1063911

Hi Jake! SO nice to hear from you! You are absolutely right! The feeling of having the sense of having barbed wire in my eyes has resolved almost completely, which most like means that the soluble sutures have dissolved! The significant reddness and bloodshot appearance is also resolving . I knew all this would happen, but it means so much to have the reassurance from you!
I presume I will not know the complete outcome of the surgery for about a month? After all swelling and inflammation has dissapated, and healing has happened? I do know that my double vision has resolved some even now. Although the oblique muscles are also impacted, the inferior muscles are extremely fibrosed, and it is those muscles that were moved.
SO! I am glad I proceed with the surgery, and will keep everyone posted.
Shirley

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in reply to: Allergy to Iodine #1063901

Considering that the health care you are getting a little bit fragmented, it sounds like you are getting good advice.
What you doc said about the amitriptyline makes perfect sense, ie. taking 1/2 the dose. It makes sense to do that before changing the drug. I am not sure how many days you have cut the dose in 1/2. This post does not contain what you said about how you felt with the amitriptyline, or (i can’t recall) if you are sure it is this drug. Nor do I think I know for sure why you are taking it. If you feel you cannot take it, then call, leave that message, ask if there needs to be a gradual taper to get off the drug, or if you have already reduced the drug enough to simply stop it. It sounds like you don’t care for how you feel taking this drug. My only other comment, is if you are taking a ton of other stuff, it might be difficult to know what is going on with the other ones.
It is very normal to have to wait for an appointment with an endo, especially a first appointment. I am glad your finances are allowing you to see an endo. If you are hyper, as you have heard from many on this website, it is not good to remain that way.
Since you cannot take ADT’s, since you have an iodine allergy, when you see the endo, probably a good idea to ask for a referral to a surgeon.
I don’t know how much any of this can happen if you are not able to get some financial aid. Have you applied for Basic Health.
That subject has gotten lost in the emails, that was one of your original questions when you wrote.
I wish you the best in your searching.
Shirley

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in reply to: CONFUSED #1063884

Hi Sheila,
Ask Kimberly suggested, I would use the treatment options in the search engine. You will see several posts from people who have recently experience surgery, several from people who have chosen RAI.
However, in response to Bobbi’s comment about second guessing a choice, I am sure that is a natural feeling to have.
But not for me. I was SO relieved when I made a decision, which was surgery, I really felt good about it. My personal feelings,were simply that I did not WANT RAI. and I sure did not want to continue with ADT’s, and all the uncertainty that I felt would exist, if I chose the ADT route.
So it still amounts to what feels the most right for you, and not necessary to justify anything to anyone. I felt a great peace of mind with choosing surgery. I think you will hear from people on this board about their different choices, and what it was "like" after RAI or surgery, but I don’ t think you will ever hear someone telling you what to do.
So basically, I am reflecting what Bobbi and Kimberly have already said!’
Shirley

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in reply to: Question about Doctor #1063892

agree wholeheartedly with last response..fj122876
All relationships take time to develop. I do not find your first experience with the office outrageous,but certainly at this time you needed more information and a framework to understand it. You are entering a new world, it is frightening. I think knowledge is very reassuring. Both Kimberly or Bobbi gave great answers. Unfortunately, EVERYTHING about Graves’ takes time, and labs that are done too soon do not reflect a true picture of where you really are. Your questions to this site are well thought out. It seems a bit early to burn the endo bridge. Not sure how the office works, but usually I simply call, make an appointment to see the doc. Endos are super busy, so expect it to be a few weeks. For the future, generally, when I do have an endo appt, I make the next one on the way out.
I do not know if you email, or if he does. docs vary on that. But I handle a lot by email, too .
Another important suggestion. Either:
1. Call office, ask them to mail a medical release of information form, fill it out, and have all dictatated records, office visit, etc, labs, sent to you. Then you can review his conclusions of the visit. I have ALL records, could not possibly remember everything if I did not have them. I can go to a visit, have the doc very patient, very nice, answering my quesitons, and go home and think ‘WHAT DID HE SAY?". Or ask for the form at the desk when you check in next time you go.
Also-be sure you learned from the pharmacist side effects of the drug, and what to be aware of.
I am sleepy, good night.
Shirley

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in reply to: Allergy to Iodine #1063899

I think any question you have about iodine and amitriptyline can be easily answered by a pharmacist at the drug store. It is not necessary to have purchased medications there. Just stand in the line, ask to speak to pharmacist. Have your questions ready.

Regarding you and iodine. Based on your post, it seems that you have a true allergy to iodine, based on your last CT. I do not think that you will ever encounter any problems with stating your iodine allergy, should you need a CT again. When you register in radiology, generally you fill out a current information sheet, and there is a place where you are to list allergies.
So you should list iodine. THere are two kinds of CT’s(cat scans.) a CT "with" which means with contrast, which contains iodine, and a CT "without" which doesn’t have the injection of contrast. If you tell them of your iodine allergy, they will not use it, so that should be very simple. I cannot imaging any doctor or health care provider giving you a blank look about that, so I am assuming the blank look you are referring to is for some other subject?

Please check with the pharmacist, but using iodized salt is not relevant to any concern or worry at all. You have seen Kimberly’s answer to that.
I do not know why you are taking amitriptyline. It is a long time standard drug for depression, but so many newer classes of drugs, including a class called "SSRI’S" have appeared, that if you are having side effects that you don’t like from this drug, there are certainly alternatives. All of this is more complicated because of your lack of access to the health care system.
There are some other reasons people have discovered by accident, that amitriptyline has helped. But when you talk to the pharmacist, tell them why it was prescribed for you.
And..if you get medication for one month in a plastic bag with hand written directions, does it mean that you are not able to continue to take anything that was prescribed for more than a month?
I hope you continue to pursue some kind of health care through the programs that exist for people with limited income.

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in reply to: RAI vs Surgery vs Meds #1063972

Agree with Laurel and some of the other posts on this subject. I chose surgery. Liked it. Glad. Felt very in control because I chose the treatment. I think that is the most important thing. Regarding recovery, I think I have written on this before, and there have been several people who had surgery this summer. Neck muscles are sore, like after going skiing all day when those muscle do stretching that they don’t usually do. Slight sore throat, but probably more due to the the intubation than the surgery. If I think of anything more, I will write later next week. I just had eye surgery, and have used my eyes a lot today, and they want a rest.
Shilrey

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in reply to: scarred #1064287

Hi, I am with you all the way with eye issues. I hope the prednisone helps. I hate the drug, but it did help some.
I go for eye surgery tomorrow, which I am also scared about. All of it is overwhelming. It is nice to hear from the facilitators that it does get better. As they said, we don’t hear from them much anymore, because they are moving ahead with their lives, just like you will be doing, and all of us who are posting now can continue to believe things will be better. IT is a very stressful disease.

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in reply to: Applying for Disability+ Trying to Survive= Possible Denial? #1063999

The ACLU is a good suggestion. So sorry about the blow you got today. More bad news is not what you need. Huntwork had some good suggestions, and sounds like she has been where you are at one time.
More hugs, but I know that is not very helpful,
shirley

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in reply to: methimazole side effects #1064751

Just for clarity regarding a drug.
Regarding the 9/14 post. The drug is ATIVAN. (not Atavan) The generic name is lorazapam.
In reference to today’s post. Same comment. Misunderstanding about name of drug. Ataman not a drug.
Ativan is an anti-anxiety drug. There are quite a few recent posts on this drug.
Thanks, Shirley

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in reply to: Endo dropped me :( #1064563

Have you seen a cardiologist? Probably a good idea to have a baseline cardiology work-up.

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in reply to: No way to get treatment #1064013

Angel, I am in SEattle! Graves’ and TED. I have posted a lot on this site. This will be hard week for me to try to be helpful to you, for I am having surgery on both of my eyes this WEdesday (TED.)
But here is one beginning suggestion. Have you contacted Country Doctor? It is a marvelous place for health care. Not sure of the implications of you living in Everett. Have you explored Basic Health? ARE there some free medical clinics in Everett?
I am sorry you are caught in this circumstance.
If you feel like it, write some more about why walking is difficult for you. Do you legs hurt? When you got insurance, did you go to a doctor to follow up on your thyroid problems to see where you are? Do you mean that you gained 80 pounds? Or just a few? I guess the biggest thing you need right now is to be seen by a doctor, and you have explained how difficult that is.
When you said you checked with the state, do you mean you applied for Basic Health? I am pretty darn sure that unemployment funds do prevent you from having Basic Health. ARe there community free clinics in Everett? I am sure it is discourage and depressing to not leave the house for four months.

I wanted to write because we are in the same area. Harpy’s suggestion was a very good one. I will try to explore some options for you in the next couple of days, but not sure that I have enough information to really do that. Be sure to keep writing. Glad you joined the site. It has been such a big support for me with Graves’ and TED. Both have been running my life for a couple years now.
Shirley

AND congratulations on accomplishing a most difficult and challenging goal of stopping smoking. Anyone who has had the habit and quit, will surely understand how hard that is.

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in reply to: antianxiety drugs #1064044

Hi lhc11!
Are you, by ANY chance, going to the conference? Presume school precludes your attendance. I do know of people who took anti-depressants while pregnant. Xanax is a category D drug, which I believe is a reason not to take the drug while pregnant because of risks to baby? Wonder if there are equivalent benzodiazapines? Reflecting what you have already said, this discussion is, by extension, relevant to Graves’ b/c of the number of people who are trying to get pregnant or waiting to get pregnant while dealing with this delightful (NOT!) disease.
shirley

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in reply to: Odd Symptom #1064031

You sure said that very well! Things get lost in translation. I am sorry that you cannot speak or email directly with your end. I can, and it has never occurred to him to do it any other way. It makes a huge difference. I am trying to communicate with the surgeon who is doing my surgery next week, and it is IMPOSSIBLE! Whatever I say goes through at least three people, beginning with the voice at the desk who has no familiarity with what I am trying to say, cause it is not her background. But I can’t get past the telephone voice. Will be interested in your experience at Mayo with your second oopinion. Always a good idea to have a pair of fresh eyes and ears. I am a firm believer in 2nd opinions, and 3rd and 4th if issue is a real conundrum.
shirley

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in reply to: antianxiety drugs #1064041

Excellent, marvelous, well expressed, helpful wonderful email! Thank you so much for taking the time to write it. It is so darn good. Thank you so so so very much!
Shirley

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