[snelsen]

in reply to: what to do & how will I feel after?? #1065586

Just a note to say that you will get lots of responses about this. Many people on this site have had RAI. Also, in the meantime, why don’t you search the topic at the search box at the top of the page? That might be helpful, and give you some instant gratification! (:
I have not had RAI, I had surgery, so cannot speak to it. But I can tell you it was hell to be hyper with a new baby, and I had only one1

[snelsen]

in reply to: PTU and Liver failure #1065621

Ski, thank you for telling me the standard of care for the present time regarding ablating the thyroid either by RAI or surgery. That is very interesting to me. And it prompts me to wonder if the incidence of TED is higher in "those of us" who did have the procedures, when the former thinking was to leave a little bit! Have you learned anything about this subject?

[snelsen]

in reply to: PTU and Liver failure #1065619

I think it reasonable to listen to the endocrinologist. And have him listen to you. We don’t know from your posts if you re extremely hyper right now, or much else about your labs or how you feel, before you go shopping for another endorinologist. If, in fact, he is pushing, pushing, pushing you to do RAI, might make sense to have an appt. to ask him his reasons and his concerns about your thyroid status. Have a conversation. I can’t see any particular reason for him to push you so hard without providing some reasons. Have you already decided not to have the surgery, and is it your own decision to try to take anti-thyroid drugs the rest of your life? Just not sure where you are with this. I am not that familiar with RAI, for this reason, I am not sure that an individual needs/has to be on thyroid the rest of his/her life. I presume they calculate a dose, and there are varying outcomes, if the goal is to completely obliterate they thyroid, I am not aware of that.
However, I am very familiar with my own experience with a sub total thyroidectomy. Initially, I was very toxic, very hyperthyroid. When I was extremely hyper, I was pretty darn hard to live with, work with, or reason with. Being hyper kinda does that to you. I took PTU, had regular liver labs. Then the PTU was withdrawn, and I reverted to being extremely hyper again. Tried this twice. I opted for the surgery, had a bit of thyroid left, and was euthyroid (totally normal labs, and felt super good) for almost 40 years. Then I became just a bit hypo, went on a small dose of Synthroid. Levothyroxin is about as harmless in terms of side effects, than a drug can get.

[snelsen]

in reply to: Just had OD all fine very happy :) #1065600

Hi, I am two months out from an OD. I had no problem with nausea. The drugs you are taking are the equivalent of an anti-inflammatory and Tylenol. I worked in England as Matron at a public school for a couple years, so I am familiar with your meds. I guess the only thing I can think of regarding nausea, are:
from the general anesthesia, but doubt it because you are several days out from your surgery.
or, if you have had experiences with anti-inflammatories in the past with stomach issues.

I am hoping, with the passing of a few more days, it will become a non-issue for you! Regarding the appearance of the eyes,
it takes more time for the eyes to settle down. There is still swelling, etc, so you will probably see more improvement as weeks go by. I just had my 2 month post op check today, and the measurements show that the eye protrusion has improved since a one month check. I think my eyes look equal now.

So, as you already know, TED is not fun, lasts too long, but I think you are on a downhill slope, with a wonderful experience behind you, and a lot of good stuff to look forward to!!!!
Cheers, Shirley

[snelsen]

in reply to: Watch Illinois Support Group mtg tonight at 6:30 CST #1065646

I tried it just now, it said "off air.’ Will try later

[snelsen]

in reply to: TAPING EYE @ NIGHT #1065604

Hi Ski, I will pursue your suggestions. It SEEMS like the upper eyelid needs to be tethered, somehow, that it would fall open if not. But perhaps enough pressure on the eye and eyelid will prevent it from doing that. I have not tried the goggles and/or sleep mask, will do that too.

[snelsen]

in reply to: Having a hard time dealing with Graves. #1065668

Yes it is hellish on some days. A lot of them. There are several men on this site with Graves, TED (thyroid eye disease) plus one facilitator. YOu will probably hear from them tomorrow and the days after.
I know you don’t feel like doing anything right now, but you do need care and monitering. Have you had a social worker involved in your care at any time? A social worker would know resources and options for you. I have the eye issues, too.
Generally, a neuro-ophthalmolgist is best for following Graves eyes. But I know you do not have insurance.
I know you said your uncle was no help, but would he refer you to a social worker, or might someone in his office be able to help you with options?
Your life WILL get better, you WILL revert back to your old self. And it WILL take a long time. It is hard, I and everyone else on this site shares this with you. YOU are not alone.

[snelsen]

in reply to: Having a hard time dealing with Graves. #1065666

Hi Lefty! This health insurance thing is crippling, I am sorry. I would like to think the health care would kick in and help you, but it is a big thing, and I don’t know the time line. I don’t have any idea what RAI costs, but you can bet it is more cost effective than surgery.
Regarding Reliv, there may be nothing wrong with it, but I looked at their website, and probably there is a better time than now in your life to begin using it, and spending the money that it costs to use it.
Ski is right on! It is so so so hard to deal with all of this. We understand. If you have a rapid heart rate, be sure to stay on the metoprolol for your rapid heart rate.
I don’t know if you live in a small town or big town, but I imagine there might be resources for you in a city that would not charge. We want you to move toward being well. YOu are with a whole lot of people who are so discouraged by this thyroid business, and so encouraged by this site. But hyperthyroidism is dangerous for you. I am sure after you get the right treatment, you will feel better, and the weight will begin to go away.
I have learned from this site, that there IS an end. IT is very hard for me to believe, but I keep clinging to this as a fact.
We are all with you, your new friends, keep writing.

[snelsen]

in reply to: Switched Endo’s- very new treament plan…OPINIONS NEEDED! #1065711

Well, after reading your latest email, it does sound like the new endo may not be the right person. If you had your list, and described your symptoms, and there was no back and forth discussion, maybe this is a poor fit. I have found, though, that it is THIS WEBSITE that has really helped me with my Graves and my TED. One thing about this darn disease is that it is so emotionally draining, at least it has been for me. For you, I think you re doing a good job of listening to your body. I guess this is the time to throw away the "should and oughts." If the thought of returning to her a second time, and it drains your energy to think about going back to her, follow your intuition. If you think it is worth one more appt to see how it goes, give it a whirl. It might be reassuring to begin to explore a third endo, asking around (I know it is not always that easy) for one who actually sees a lot of Graves pts. Do you live in a big enough area to have this choice? I hope so.
I think your symptoms are significant, and you deserve to have an endo who has knowledge, gives a crap, and does not have a cookbook agenda. Cookbook patients we are NOT!!

I have been going through hell with this disease. I know exactly how you feel. I did change endos, and the 2nd one is turning out to be good, but it took a couple visits for him to warm up to me, and my interest in having all notes and labs. I have my freakoid interests, and one of them is wanting all records and labs in my file. He is fine with that, and I am able to go online and read everything, so that fills my need for instant gratification with labs and his dictated notes. I ALMOST did not go back to him, cause in my case, he wanted to decrease my Synthroid, and I really did not want to do it. I liked the way I was!

I am so glad you are on this site, do write as things move forward for you.
shirley

[snelsen]

in reply to: Switched Endo’s- very new treament plan…OPINIONS NEEDED! #1065708

I have read your post, all the others. I guess I suggest that you consider making a list of questions, most of which you have in your post, and make another appointment with the 2nd endo. It is very very difficult to establish a good relationship after one visit. It is a lot of work to change docs, you just did it. This may work, it may not. But it is tough to have this relationship after one visit, and it seems you thought about this a lot after you went home, which makes perfect sense. Before throwing the whole thing away, it could be a good idea for you to see her again. SHE doesn’t know all the thoughts you have had after one visit with her, does she?
I am not defending the doc, but relationships do require more than one shot. She had never seen you before. She did say new things. After you make your list of questions, encompassing your concerns, see her again. I suggest making the appointment now. It ALWAYS takes a long time to get an appt, but now that you are an established patient, you will find it easier.

Just of interested, I did not become hyper at all after ATD’s most of the time. But I did not want to "live" on them for the rest of my life. Again, my choice. Maybe the facilitators know much more about long term ATD’s (long term meaning decades, or lifetime use) I am not sure there is the data to know that one way or the other. Maybe there ARE longitudinal studies which someone may have done a retrospective look. I doubt it though, for there have not be a population of folks who have been on ATD for decades and decades. I wanted a subtotal thyroidectomy after the ATD’s. then for 30 years I was euthyroid by the numbers and by how I felt. Then I became a little hypo, began Synthroid.

This has been addressed before, but sometimes people feel better in a hyper state. This is pretty much about my story. and experience. And I do think you can be a "little bit" hyper. I know someone has said that this is not possible. But I loved it. Lots of energy, generally felt good. Normal everything else, no other symptoms. But the impact on cardiac and other stuff can be a risk factor over the long run.
We are currently decreasing my synthroid, and I don’t like it much, for I am more tired, and COLD! But I am glad I am going it, cause it is better not to have my body running in high gear all the time. My pulse is not fast at all.

[snelsen]

in reply to: HIVES POST-OP #1065699

I am NOT giving advice as professional, but I can’t help myself, and add some thoughts to Ski’s very good response.

I have spent the past fifteen years working in a recovery room, pre and post op. It is very likely that you had a reaction to one of the pain meds, and if you stop taking it, switch to an OTC med you know you can take, the hives will go away. It is important to immediately get help if you have swelling in your throat, difficulty breathing, and it you are getting worse, not better. I am sure this all information you already know.

The other though is your experience with antibiotics, could be that.
SO, do call your doc today to notify him/her of this. If the hives are now a non-issue to him/here, you can remember to report this at your post op visit

If this is the case, you probably won’t be able to figure out which med it was. If you CAN figure it out, for the future, be sure to report that you got hives after you had: whatever you had.

Hives are a progression from an itchy rash, so good to be aware of this. Sounds like there were significant. What is the the progression or regressions of the hives at this time?

[snelsen]

in reply to: So… could I have had it as a child even though…. #1065753

I would like to preface my comments with the fact that I am with my own knowledge and experience, and encourage you to check with one of your health care providers to get further good information about vitiligo.

Hi, it might be reassuring to you to talk with an endocrinologist (begin there) or rheumatologist, or even the docs who diagnosed your child with celiac. What I am saying is, that, yes, some people who are hyperthyroid may have vitiligo.

But it does not mean your three children will have hyperthyroidism. Or any autoimmune disease.

Vitiligo can happen with hyper, but there are some other explanations, like heredity. After thinking about it, maybe a dermatologist might be the most efficient way to discuss it.

From my experience with my own family, it has been explained to me that most people who have vitiligo do not have an autoimmune disorder. And that some folks with certain autoimmune disorders, may have it. In my family, it is familial.

[snelsen]

in reply to: So… could I have had it as a child even though…. #1065750

My thought is that you begin with the present. There is really no way to determine what was happening when you were fifteen. I am assuming that you are willing to have a blood draw now. I have two suggestions on that subject.
Drink a lot of water (as opposed to being dehydrated, as you might be first thing in the morning) before your labs, and tell the person drawing the labs that you have a history of being needle phobic. There are a very few labs that require no food and water before the blood draw, but they not your everyday labs. This has been my experience from being an RN who drawn a lot of labs.

Not sure what you read @ childhood Graves. I had the following symptoms:
an extremely rapid heart rate, (130-160 or above) this would have been noticed by you and others, plus weight loss that cannot be explained, a voracious appetite, intolerance to heat, and much more.

I am not a professional qualified to offer factual advice. Mostly what I say is reflecting my own experience. Enjoy your new baby. All of the above symptoms did happen to me after I had a baby. But maybe it will be a non-issue for you. If you are concerned @ yourself, go to your doc, has for thyroid labs. Most doc will draw a TSH, T3 and T4.

[snelsen]

in reply to: Why arent their ever any resources in my area? #1065745

I am in Seattle. There is nothing here, either. If I had some energy, I would start one. But right now I don’t. Having found this site, I am not very interested in another meeting to attend.
I find this site probably preferable to a local support group. This site is the best of the best. Browse some topics, write with concerns.
shirley

[snelsen]

in reply to: Recommended Reading #1065769

I have been looking @ some sites, saw a reference to a book which did not impress me. There is a Mayo Clinic site. ARe you looking for a book? I will search back, ask others. You may stil hear from others who have Grave’s who have not see your post yet. I’ll continue to look. Will also check the archives of this site…..

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