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in reply to: gluten-free diet for weight gain #1174411

Hi, I think if you use the search engine, you will find some conversation about gluten free diets. In summary, if there is not a compelling reason to do it, like cystic fibrosis, and/or a definitive gluten allergy, I think you are only subjecting yourself to fewer selections of good and nutritious food that do not taste as good. I don’t think you will find anyone who regards a gluten free diet as helpful to maintaining, not gaining or losing weight. Unless, of course, someone is eating an excess of bread and dairy anyway, and cuts them out, thus decreasing total food consumption.
I am sure some others who have had this experience will chime in to share their stories with you. One of the facilitators tried it, can’t recall who, but did not continue. It is tough to really follow and be compliant, if you don’t have to do it for other health reasons.

You are just beginning this whole deal of Graves’. There is a lot to learn. Having a good endo and really understand the disease takes you a long way. THere are MANY unreliable websites out there. Try to stay away from them. Most are not reliable at all, for accurate information.
Some people do have an issue with weight gain, others never do. I have no idea of the per centages. But, most of us are female, and have other issues that do contribute to our weight and distribution of weight. Estrogen is a factor,a nd when menopause happens, women have more trouble with weight, at least some of them do. And then, there are always individual eating habits, which are either healthy or not healthy. Plus activity.
I’d say that if you are fine with your weight now, begin to learn about your disease. There is a lot to learn. A lot.
Congratulations on your new job! Whee! All the more reason to get on a steep learning curve with this stuff.
Shirley

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in reply to: mini update & question #1170796

Laree, yes, that experience with your dentist sounds super weird, from start to finish. Plus, few dentists use radiation X-rays, cone on head (that is strange) anymore. Most take digital films now, not traditional X-rays, usually once a year. What she said sounds like complete hooey, in my opinion. None of what she said makes any physiological sense to me. I am not a professional, just relying on my common sense, and a relative high index of suspicion that not all providers are good folks out there. Might be interesting to know where she went to school.

Have you considered going to a dentist who has know you for years, and given you care over years, to check this out with?

I could not find out any reliable information about Natrum Muriaticum at all.
I am glad you are seeing a board certified neuro ophthalmologist who is checking your eyes. I have seen one for years, with my TED, but never have been counseled to take herbal supplements of any kind.

Sounds like you are doing well, I hope you continue on that path.
Shirley

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in reply to: Hypo activity post RAI #1174358

Sorry, in my post i omitted the most important phrase.
“Dosing of thyroid hormones BY WEIGHT OF THE PERSON. That is the point of my entire post.
Sorry again
Shirley

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in reply to: orbital decompression questions #1174380

Hi, I may have our blog someplace, gatorgirly, but I can’t find it. Will you sent it to me, too please?
tnapalu-
My experience, answers to your questions
4. A one, two or three wall OD is considered one surgery. It will be coded as orbital decompression, medically necessary (as poopsed to cosmetic) I had an ENT and an oculofacial surgeon, each did a side. All was covered by insurance.
3. Won’t improve your vision that I am aware of, it has never been mentioned as a plus factor. Our eyes have changed so much with TEd, that i assumed, and did to begin again with a new glasses RX.
2. The dryness was not helped in my case, but my lids are quite retracted, too. My eyes still tear, itch and are very dry after my one OD>
1. I think the odds of double vision are significant. I had double vision before my OD. It was hell, I hated it, I could not function. After my OD, about 2 months, I had strabismus surgery for the double ision, that was my best experience with TED.
Shirley

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in reply to: Hypo activity post RAI #1174355

Dosing of thyroid hormone is certainly not anything I am familiar with, except at the time it is time to first begin administering thyroid hormone. And my endo did not do it then, either. My endo always goes by how I am feeling, plus the labs. AND if decisions are being made about
to change the of Synthroid, in any time less that six weeks to three months, I have learned that is terribly wrong, and you and your doc will not be working with accurate decision tools, either by how you are feeling, and/or by the labs.
I look forward to the facilitators’s comments here, too. There have been some very good explanations of how it takes way longer than we want it to take to know “where we are” with our dosing of thyroid hormone, and as I said previously, it is determined by labs AT THE VERY LEAST six weeks apart, two months+ is preferable.
Kimberly, Ski and Bobbi, please chime in on this subject.
And, of course, ask your ends these issues I have raised, too.
Shirley

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in reply to: Dental Work #1174369

What kind of anesthesia? Local? Sedation? I am assuming you don’t mean a general. Check with the endo. Tell the dentist. I’d follow the suggestions of others, but I think it is a non issue.
Shirley

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in reply to: UPPER EYELID SURGERY TODAY #1174194

Hi Ski, nice to hear from you.
Pain for 8 days, like a suture scratching my cornea. Doc said ( I saw him every day, no it can’t be that!” Went yesterday, said look again, I can’t stand eh pain. Doc says, “hmm, looks like one of the sutures on the muscles of the eyelid came apart.” Well, duh. He removed it, threw in a new suture, I reminded him to make a good knot, like he was tying his shoes! Contact over eye to protect abraded cornea-but it does not stay in the the right place, then the contact is a foreign body itself. Whee.
Are you planning to go to San Diego? Is Bobbi?
Shirley

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in reply to: Depression Treatment ? St Johns Wart or Effexor or RAI #1174305

Lilly, I went back to read all your posts. It appears that you have diagnosed with Graves’ since at least last March, THat you have had quite a bit of resistance to treatment, either RAI or surgery, since that time. You have had some very nice posts from Kimberly, Bobbi and myself in the past, directly addressing your concerns, and reinforcing that you will not get better from Graves’ unless you do accept the fact that the choices for treatment are ATD’s, RAI or surgery. Since you have been reading the posts, I am sure you know that by now, plus this advice has been has been given to you by your endocrinologist.

THere are no other treatments. Not vitamin, anti depressants, or anything else you can think of. It seems to me that there is a lot of denial on your part, which is getting in the way of your road back to health. As has been mentioned in other posts by the facilitators, staying in a GRAVes’ state, being hyper, is dangerous. Even if you are hoping for a remission, it must be managed carefully by the endocrinologist, and here are guidelines for how long you are on ATD’s,(havlng labs along the way)

It is fine for you to see a psychiatric, a counselor, whatever, but they should have reliable information from the endocrinologist about your Graves’, and where you are with your treatment on non-treatment.
Shirley

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in reply to: Depression Treatment ? St Johns Wart or Effexor or RAI #1174304

Hi Lilly,
I have not checked all of your posts yet to see where you are on your Graves’ journey. But both the hyPER and the hyPO state, give us plenty of reasons to feel discouraged and depressed. I think the best person to give you advice on htis subject is the psychiatrist you are going to see next week. ANd I hope he/she is familiar with Graves’a and its’ symptoms.
IF you begin to take an anti-depressent, Effexor or any other one, you must be seen, and the dose managed carefully, but the psychiatrist. Thos docs are the ost familiar with all the varied anti depressants. *Like the ATD’s and thyroid replacement hormones, evaluating whether is is helping you or not helping you, takes a long time. To really know if the drug intervention has made any improvement in your depressive state, you’d have to be on it t least 2 months. BUt again, that is for you to learn all about from the psychiatrist.

Regarding St. John’s Wart, or any other herbal antidepressant, I’d steer very clear of all of them. St. Johns Wart, in particular, impacts the metabolism of MANY other drugs that people take. There are a lot of cons, and no pros for you to begin to take any supplement like that at this time on your own.

I would also be sure that you discuss any of this with the endocrinologist.

Having Graves’ ISa depressing and discouraging. BUt the best way to get past all of this, is to have a treatment plan, and try to get it all behind you and mov on with your life. That is what all of us want, of course.
Shirley

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in reply to: Constant glare in sight #1174262

HI S[ARERIB, I have TED, I live in Seattle. I had upper eyelid lowering surgery last Wednesday (9/5) I am having quite a bit of discomfort iwith an abraded cornea. How is your post op course going? He put a contact over the whole eye today to see if that will give me some relief. Says it will heal.
I’ll send you a PM.

Shirley

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in reply to: Pregnancy and PTU / 36 week update #1174280

Great news! I look forward to your future posts!
Shirley

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in reply to: First Normal Labs Since RAI #1174251

in my experience, the OD was not painful, I took a couple pain pills. Hate them. I am convinced that I did not have any appreciable pain because I used cool packs on my eye almost continuously, AND I had my HOB elevated for almost a week. Makes for lousy sleeps, but you don’t sleep well, anyway. If the swelling gets away from you, I think that is when the pain is significant.
You’re right. You have several surgeries coming up on your dance card. As I have said many tmes on this forum, the strabismus surgery was marvelous.
I had some kind of complication with all the rest of’em. Including the upper eyelid surgeries, I am on post op day 6 now.

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in reply to: First Normal Labs Since RAI #1174248

Gosh, gatogirly, what a bad break, but literally and figuratively! I am SO sorry.
As I recall, there is not much that can be done for that, is there? Except wait for time to pass? I imagine it is very uncomfortable to sit. You just never know when our life and health can be impacted.

I just had a “simple piece of cake surgery with the plan of lowering my upper eyelids. I am on post op day 7, totally uncomfortable and miserable with corneal abrasions in both eye, which are constantly irritated by the incisions (and maybe the sutures) on the inside of th eyelid. Lids are swollen, and I a miserable.

I hope all of us can meet some day. I am going to San Diego for the conference.
Shirley

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in reply to: Constant glare in sight #1174259

That’s familiar to me. I have had TED for 3 years. As Kimberly said, I suggest you find an ophthalmologist who is familiar with TED. Ask around first.
Shirley

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in reply to: UPPER EYELID SURGERY TODAY #1174191

Corneal abrasions related to surgery. The part of the eyelid that touches the eye is rough, thus causing continual irritation. Of course, this is not a “common occurrence” I continue to have nothing but complications with any procedure I have, not to mention daily living, with TED.
Shirley

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