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in reply to: EYELID SURGERY, ANYONE???? #1063205

To RobinMarie, then to Jake,
Hi RobinMarie,
I have thought long and hard about whether to do a graft from the mouth (separate grafts and surgery for each eye) or do the implants. i cannot disagree that the graft from the hard palate sounds terrible! From what I can learn, the chance of an artificial material being rejected by the body, is higher. Also, my understanding is that they frequently fail, with the eyelid ending up being retracted again. But I am very scared of the graft surgery, and although it is scheduled, I am really worried about having it, and the pain associated with the graft site. That is why I am hoping to hear from people who are actually glad they did it.
To Jake, more questions
1. How long did you wait between your surgeries? Did you have both eyes done? I am supposed to wait 3 months, but spoke with someone who had her 2nd eye done in one week with a graft from the other side of her palate. My inclination is to have all the pain close together, and get the six months behind me. I love to cook and eat good food.
2. Are you glad you made this choice?
3. Are you happy about the outcome?
4. How long did you eat liquids and soft food?
5. Did you consider artificial implants?
I did get a retainer, which I guess might be the same as a stint. But the only other person I spoke with who had the surgery, said the food got stuck under the retainer, and hurt even more. So she ended up not using it.
Shirley

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in reply to: Just Been Diagnosed #1169418

Sylinda, just a quick note. I think you feel a LOT better after you get on the medicine (anti thyroid drug) that you need. Having too much thyroid hormone running around is like trying to be efficient, driving 80mph in 1st gear.
I was really an anxious, pretty irritable and crazy person before and when I was diagnosed. When I had no idea, co-workers would say, "What is wrong with you. YOu didn’t used to be like this," and I would snap back, "Nothing." Bit it was obvious because of my behavior and weight loss, intolerance to heat, and all the rest of it, that was not myself.

So, do what works for you, but I found the diagnosis a huge relief. I told everyone at work that I knew I had not been myself at all, and finally, you had labs drawn that showed you had a thyroid imbalance, or Graves’. I would be surprised of some of these folks know someone in their family or a friend, who had it. As Kimberly said, everything takes energy right now, especially we are not patient with ANYTHING or anybody.
Do keep writing to us. Everyone on this board "gets it."
Shirley in Seattle

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in reply to: Just Been Diagnosed #1169415

Sylinda,
I am writing to echo Kimberly’s post. You WILL have a normal life again. You will be you again. One of the many things we experience with Graves’, is that we want to feel better NOW!!! I understand 100%. When I was hyper, I lost around 22 lbs, down to 92. When I was hyper, it was hell.
But Sylinda, you will be back to your normal self, complete with the "girls!" Really. You are just beginning the path to getting better. YOu didn’t say, but I am assuming you are on ATD’s (antithyroid drugs) now? And maybe a beta blocker?
To answer the question about feeling better, i recall feeling better about two weeks. That is when I started saving some of my clothes rather than donating them. Plus, I knew I had a PLAN! I think the biggest feeling I had when I got a diagnosis, was vast relief. That I had something with a name, that had treatment choices. The other thing that helped the most was talking to people who had walked this walk, and felt absolutely fine, back to their old self.
YOu will too!
Shirley

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in reply to: Smoking and Graves Disease #1169346

Maria, I am writing to compliment you on your wonderful post. For people who are struggling with trying to stop smoking, your experience is so supportive. It is empowering for anyone. It is beautifully written, and so informative. It is a classic, and I am sure it will be a stellar and supportive reference for years to come. Thank you so much for taking the time to write.
Your English is perfect! Probably better than some native English speakers!!!
Shirley

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in reply to: Story and Looking for Input #1169329

First of all, I would like to commend you for managing to remain married during all of this. That is a LONG time for both of you to experience all the behavioral, psychological and physical stuff of being hyper. It is hell. I do think our marriage was permanently damaged by this time, and many years later we did divorce. I was dismissed by many doc with my symptoms (you are working too hard, you just had a baby, you are breast feeding, you just need to relax. etc)
The first time anyone paid attention to me was when I collapsed at work (student nurse) and had a thyroid storm with a heart rate at that time of 160. Not sure why I survived. This was a long time ago, and the term ICU was not coined for another few decades. But enough about me ” title=”Smile” />

I also understand from your post that you are on a beta blocker only. I do realize that you are not interested in ATD, but I suggest you do reconsider them, for the reasons Bobbi said. My own thinking is, if we have Graves’, we have it. I had no interest in waiting for a remission, and that thought was never mentioned to me. I am sure you know more about the studies on remission than I do. I am not sure there is really such a thing as mild hyper according to numbers.

The anti thyroid drugs get you to safer place with the amount of circulating hormone.
Going back to my own experience, and the thinking of today, unless there is compelling reason, you have the choice of the three options, ATD’s, RAI or surgery. To me, it was a no-brainer. I am an "take action now" person, and it seemed the fastest way to move on, get my thyroid dose, and that is that! I had surgery, was so happy with it,I never looked back except with firm conviction that surgery was the right option for me. It seemed the quickest road to just find my thyroid dose, see how I feel, do the labs, and MOVE ON! And, of course, other people on this site made other choices, and I think they are happy with their choice.
I do disagree with on one comment. You can check this out, but I think you find that there is no relationship of labs levels indicating or not whether to have surgery. It is simply a choice. You don’t have to have a certain set of labs to "mean" surgery. I think this might be a misunderstanding. It does not make RAI a better choice.
Denise and Bobbi pretty much said what i think, it is not a good choice to wait it out.
Denise, I sure hope your world is better now on all fronts. How are you feeling now?
Shirley

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in reply to: Cousin’s have Grave’s Disease #1062116

Agree with Ski on all her comments. And, I think someone needs to ask more questions about the relationship between ATD’s and RAI. It is a little worrisome that she was told that, makes no sense.
I suggest your cousin Heather go to an endocrinologist who is familiar with Graves’. With this disease, we have a long relationship with our docs pretty much forever.
She needs to report her allergy symptoms to her doctor. There all degrees of the word "allergy," and some need attention right away. If it is mild itching, he/she might suggest to her to take benedryl. But she should definitely report it. There is also an alternative drug which is an ATD. Sometimes, a person really cannot tolerate one of the ATD’s but does fine with the other one. She needs to be pretty involved with a good doctor while she learns a lot more about Graves’. I hope this is possible for her. Your cousin should have been told to have thyroid labs and liver function labs done as she began taking the ATD. Did this happen?

The following comment is just for general interest. Not applicable to your post about your cousin.
Having said that about allergy, it has been my experience that the general public gets the word "allergy" confused with "side effects." I have worked in a hospital for many years, and heard people tell me that they have an allergy to narcotics. On further questioning, they had decided that being constipated was an allergy, but that is not correct.

I think she would profit a lot by joining this bulletin board.
shirley

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in reply to: TED and euthyroid #1061282

Hi Marian,
Well, it has been two months, and I am wondering how your eyes are doing? Are they better or worse? I sure hope they are better. I have pretty severe TED, and the Brazil nuts did not seem to make any difference in my experience. But I hope they have helped you!
Shirley

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in reply to: History of cancer then GD #1169522

Hi Lina, I am pretty sure they are unrelated. But maybe your oncologist has a better read on that. There sure are a boatload of people who have cancer who never have Graves’.
I am wondering if a radiologist has a better idea of repeating radiation to the same area where you had radiation for Hodgkin’s?
Of course, it all can be a non-issue if you had surgery, I’d think. But, as we have said many times on this board, it is a personal decision. I did select the surgical option, and was so very happy with it. I suppose that perhaps a consideration for you, is that it is possible you might need radiation again for Hodgkin’s, and the rads can pile up.
So it sees that you are weighing the pros and cons of doing another option rather than ADT’s, just in case. Another thought for you is that getting the dose "right" is still challenging, if you have thyroid replacement after either RAI or thyroidectomy.
My impression is that it takes longer, after RAI, and another consideration as a con is if you want to get pregnant. You have to wait longer after RAI, gotta go, more later

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in reply to: 18 +years with graves #1169437

Hi. As you know, I think Tenormin and atenelol are the same drug. As you know, they are beta blockers, and the purpose is to decrease high blood pressure by relaxing the vessels. But there is quite a bit for you think about.
Here a few of them.
1. Graves’ won’t go away. We have it for our lifetime.
2. It needs to be treated, and we do need to be seen by a physician, to discuss lab results, how we are feeling.
3. There are standard, evidence-based (meaning very reliable,controlled studies on how to treat Graves."
The latest information for this is on the front page of this website. It is a complex disease, and the endocrine system is ver complex as well.
4. It is dangerous to remain in a hyperthyroid state for a long period of time. Kimberly summarized that nicely.
5. I am not sure that you are clear on the definition of thyroid storm. Briefly, people who actually have it are in the ICU, and sometimes die. It is related to an excess of thyroid hormone racing around our body, which affected the cardiovascular system so much that the heart rate can be in the 200,s and BP completely out of control.
6. When you are on a beta blocker of any kind, you should be checking your blood pressure.
7. Since you have said you cannot take an anti-thyroid drug, talk with you doctor about RAI or surgery.
8. Despite your disinterest in having consistent medical care, and going to doctors, that is exactly what you should doing, going to a good endocrinologist. But, they are not magicians. They prescribe and advise on what you have told them, combined with the labs, then you need to be consistent and compliant with the drugs, so they can be evaluated to see if they are helping you.
Again, read what Kimberly said. Graves’ is a real health issue for you if it is untreated. And we DO have it for the rest of our lives.
Shirley

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in reply to: New to Graves Disease #1169398

I suggest you read the guidelines for Graves’ thAt on the main webpage of this site. i can pretty much tell you that you can’t really prevent it. But if you do have Graves’, with treatment, which can take a while, you will feel much better.
It certainly can be dangerous if left untreated. It is like trying to drive 80mph in first gear. Many people with untreated Graves’, right at diagnosis, have dangerous heart rates of 120 or more. Too much circulating thyroid hormone is not good.
As Kimberly says, it would be helpful to know more of you situation.
In the meantime, you have found a good and reliable website, and you will learn that you are not alone!
Shirley

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in reply to: What Products Make Life With Graves’ a Little Easier? #1061102

I love Soothe eyedrops and ointment. And I love my lists!
Shirley

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in reply to: Is there a cure for Grave’s Disease? #1169401

Hi Roxanne, no there is not a cure for Graves’. But there is a path of treatments, that will get her back to feeling good.
It is not safe, and potentially dangerous, not to treat Graves’. Is she under someone’s care? There are evidence based methods of helping her. She should be under a doctor’s care, preferably an endocrinologist, and also educate herself about the path of Graves. She can learn a lot by posting on this bulletin board, and by reading some of the articles referenced on the main page of the ngdf. website.
Shirley

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in reply to: hyper again #1169393

To continue my post written a minute ago. What is your Graves’ "story?"Might be a good idea to write more info-ie, did you have RAI, surgery, were you on ATD’s? I am guessing that your post is about a lab?
Shirley

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in reply to: hyper again #1169392

I think the most obvious answer is that the dose of levothyroxine is too high. what are your labs? Do you mean that your labs say that your TSH number was low? That could mean you are taking a higher dose than you need. (What is the course of your Graves’? How do you feel? Do you FEEL hyper? What was the doc’s advice after your visit?
Shirley

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in reply to: Just Stopped Methamazole, Feel Exhausted, Have Insomnia… #1169486

To DeaKai,
The information in your post is not very applicable to this site. I do believe that the purpose of this website is to address hyperthyroidism and hypothyroidism, and thyroid eye disease.
Having said that, it seems that your multiple health problems are other than the ones mentioned above. I certainly wish you the best with you complex health situation. I hope you get some of your long standing health issues addressed.
Your remarks and references are not applicable to Graves’ disease,and it does not seem that you have that diagnosis.
If you do end up with Graves’ sometime in your life (and a thyroid nodule is a different subject) but if you have Graves’, there are evidence based standard treatments which you should consider. An endocrinologist, along with the proper lab work, is essential for you to consider.
Shirley

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