[Anonymous]

#1095160

Your dilemma is understandable, but truly, you are accepting to stay in the WORST of all possible places by not doing any treatment for your hyperthyroidism. Remaining hyperthyroid is the most dangerous of all your choices. Please get those books quickly and try to read with an open mind about our treatment options.

And try to understand that we are not hypothyroid if our replacement hormone is adequate. While it would be best to have normal thyroid function, there is no way to get back to that, and second best is being healthy even if it means taking a supplemental dose of thyroid hormone or taking antithyroid meds.

I hope you are feeling better soon.
Bobbi — NGDF Online Facilitator

[Anonymous]

#1026741

Hi……I know how you feel cause I didn’t want to make any hasty decisions about RAI or Surgery a year ago…….but I did take the meds and didn’t have any problems except feeling better. Think twice about taking your medication (s). I took Methimazole and Atenolol.

I read this BB and I read some books and because of the eye disease that I also have, I chose not to do RAI and just had a total thyroidectomy May 23rd. I do notice a change in me from being hyper and I am not hypo. I am on Synthroid and see the surgeon again in about two weeks and will have blood work prior to this visit. I still am going through the eye disease, but am seeing a great doctor for this.

I wish you luck and don’t be scared……..just smart!!!

[Anonymous]

#1095161

Hello to all my name is Diane and I wanted to thank you all for the wonderful advise on how to deal with this horrible ordeal. I have been off work since May of last year and am struggling with trying to get SSD and SSI. I’ve finally hired an attorney to help so I am hopeful that this will speed things along. Right now my current conditions are Hyper/Hypo Thyroid, A Goiter three times the normal size, Graves Disease, TED, Acute Depression and Cushing’s Syndrome. I am currently taking Prednison 40 mg (since June) (because of my eyes) 200mg of Toprol XL since June, PTU is reduced to 150mg now since I just went Hypo again, 1 mg Xanax nightly for my tremors, Klonopin 1.50 mg daily for tremors, Trazodone 150 mg nightly to sleep aide, Lexapro 10 for depression Actonel 35 mg once a week for my bones, Nexium 40 mg a day for heart burn and Cosopt twice daily for my eyes. I’ve already had orbital radiation and my vision hasn’t improved at all and that was done in November. The doctor has discussed surgery but I was wondering if anyone has had any success with Chemo for their eyes. Basically my life right now is a mess and all I do is sit at home. Can’t drive, barely can walk, can’t see well to be writing this post. I’m so sorry it’s such a long post, but I wanted to give you my scoop. If anyone has any suggestions on how to deal with the cushing’s syndrome I would greatly appreciate it. I’ve gaine over 85 pounds since this whole thing started. You all are so wonderful and I read the post on a daily basis. I get some of my best questions for all my doctors from things that are said here. Thank goodness for you all and God Bless. Diane

[Anonymous]

#1095162

From my brief review of literature on Cushings syndrome, it appears that one of the possible causes is taking steroids — like whatever you have been put on to treat your eyes. If that is what is going on, then you are enduring one of the side effects of medication.

None of us here are medical experts. We are just patients (or recovered patients) like you. So your doctor’s advice on this issue is going to be of paramount importance. If possible, you could get your various doctors (endocrinologyst, opthamologist) talking among themselves to determine what they think is the wisest course of action for you at this point in time. It might be that they feel it is safest to gradually wean you from the steroids and try something else for your eyes.

I know of nothing like “chemo” for the TED, so I’m not sure what you mean. As for surgery possibilities, Jake long ago wrote a long post about the various possible eye surgeries. I believe it was called “Surgery 101” or something like that. YOu might want to use the site’s Search function to look for it.

I know this is a truly miserable time for you. It’s bad enough to be ill, but to feel isolated and not be able to drive and get about is truly horrible. I hope you and your doctors start seeing improvement very very soon.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1095163

Thank You Bobbi for caring and for the information about the different types of surgeries for my eyes. I know my sight is getting worse, but am waiting to have my goiter removed before we do anything else. I understand how cushing’s come about, I was just wondering if anyone else has dealt with it and do they know any tricks on how NOT to gain any more weight in my stomach or face. I know that I will be on prednisone for awhile since everytime they try to reduce it my eyes get so swollen I can’t see out of them. I thank you for all your knowledge and understanding. In times like these it’s nice to know I have people I can communicate with. Diane

[Anonymous]

#1095164

I honestly do not know whether there is much you can do to avoid the weight gain, etc. with Cushings. At this point in time in your life, especially, you do not want to put your body under the additional stress of any type of severe diet. You need good nutrition, in appropriate amounts (whatever that is — I know, it’s way too vague, but….). You might consider consulting a nutritionist/dietician. If you are eating appropriately and still putting on the upper body weight, it might just be something that you must endure. But make sure that you are, in fact, eating properly. Keep a log for a while, to figure that out. (It’s easy to “forget” the morning cookie when the temptation of dinner dessert arrives, unless you’ve written it down.) If craviings are an issue, due to the drugs, you might want to figure out small meals that you can take multiple times a day without increasing your overall calorie intake. That way, you will have a “plan” for the cravings that involves something well within a normal diet. These steps would eliminate the possibility that diet is playing into the weight gain. Also be sure to drink the recommended daily intake of water (which most of us do not do). Water helps to eliminate toxins from the body, especially the toxins that are a by-product of drug metabolization, and sometimes, we can reduce side effects a bit by taking in the right quantities of water so that the body can get rid of these substances more easily.

Others might have some other thoughts based on experience, but I do not think we’ve had many posts here on the board about Cushings, so there may be no good help available from our archives and members.

Bobbi — NGDF Online Facilitator

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