[snelsen]

in reply to: We’ll see update 5/24 Thyroid concern… #1061882

I understand! It is frustrating to feel crappy when you can’t find a cause that can be "fixed." Am having some of the same experiences. No appetite, not a happy GI system. Endocrine,cardiac seem ok, they are the first things to blame for big time fatigue. And then there’s TED! I just cancelled a huge eye surgery, two procedures on both eyes. Just seemed wrong. 5 hours of a general? I don’t THINk SO! Still considering, the palatal graft for lower lids, but still wanting to hear from more people and their experiences-past the usual post op visit, and how food tastes when the palate heals. Got a retainer just to try, and gagged every time I tried to remove it.
What does ds16 mean? That must be a child.
Shirley

[snelsen]

in reply to: Young Woman with Graves’ (Getting Worse?) #1061920

As has been suggested in another couple posts, perhaps you are becoming hyPER again since your some of the symptoms are back. I am thinking that as your carbamazole was reduced, that you slowly (or rapidly!) became hyper again. I hope your labs reflect that during your visit to your doctor today. And even if they don’t she may increase the dose again.
My own experience is that when I was on ADT’s after first being diagnosed with Graves’, every time they reduced the dose at all, I flipped right back into being hyper.

I am so so sorry for the stress you have experienced with the earthquake. Nobody can understand that unless they have been through it. That is super stress. How did your appointment go today?

Re antibodies-from what I know, the antibody level can be helpful in determining the cause of hyperthyroidism, in some cases. But the antibody level is not used by the endocrinologists to determine treatment dose at any stage. I think Kimberly addressed this topic.
It’s the thyroid labs plus your own report of symptoms, plus heart rate and blood pressure.
Shirley

[snelsen]

in reply to: Alternative options? #1061934

Hi, will you clarify who "he" meaning the doctor, when you wrote,"should I try and find a different doctor if he won’t even consider surgery for me. He told me he only does surgeries if they don’t respond to ATD or RAI or if i’m pregnant or dieing.

Are you referring to the endocrinologist (who, of course, is not a surgeon, and also does not "do" the RAI. The only thing the endocrinologist would manage, are ATD’s.

Regarding surgery. The surgeon is the one who would evaluate you for doing the thyroidectomy. He is the only one.
It is the job of the endocrinologist to mention all three options. In my opinion, there is no way the endocrinologist can evaluate you in any way for a thyroidectomy. So I have another view on that. His job is to present the options. By all means, if you have not asked him before now, tell him that you prefer surgery, and you would like the names of a surgeon or two for you to see. Is he resistant to even discussing it? Ask him why. I know how you feel, when you say you want surgery. That is the way I felt. I asked my endo and my family practice doc to check out surgeons who "did" this surgery, were familiar with it, were familiar with Graves’, and did a lot of them (50+) each year.
As I mentioned in my longer email, there are plenty of people on this site who have already shared their experiences with their choice of surgery, from the beginning list of pros and cons, through the surgery and post op period, through beginning to take their thyroid replacement hormone. Check it out in the search box.

As I mentioned in a prior email, "Logistical choices could include distance from the treatment area, no access to RAI where you live, no reasonable access to surgeons who have at least 50+ thyroidectomies in their practice, just to mention a few. Generally, personal preference can rule."
Regarding surgery, Kimberly also emphasized it in her recent post," Once concern with thyroid surgery is to make sure you use a “high-volume” center with a surgeon who does at least 50+ thyroidectomies per year. Having an experienced surgeon is important in order to minimize the risk of complications."
Shirley

[snelsen]

in reply to: TED post RAI #1061894

I am delighted that you can see a neuro-ophthamologist on Wednesday! That is wonderful. Do write to tell us about your appointment. A helpful suggestion!!! When you register at the desk, ask for a Medical Release of Information form, or their equivalent. Complete the form, asking for all dictated reports, lab results and other test results, sent to your home.
Then begin your own file of your medical information. And, if they do the visual fields, tomorrow, I think it is worth asking the doc to print an extra copy so you can take it home with you.
Good job getting that appointment!!
Shirley

[snelsen]

in reply to: TED post RAI #1061891

Hi, regardless of the reason for the eye symptoms, I suggest you get an earlier appointment with the ophthamologist, and/or also go to a neuro-ophthamologist. Because you have significant visual changes (looking through a small lens)
I think this is very very important for you to do, the neuro-eye doc, get established, get a good baseline evaluation, including visual fields (by the machine, not simply wiggling fingers) so you are sure your eyes are ok, and the optic nerves are intact with no pressure on them. Can you do this?
Hard to get into the neuro-eye doc, but if you say that you have significant visual changes, that will get a early appointment for you.
Shirley

[snelsen]

in reply to: RAI #1061898

I am writing to expand on Bobbi’s good information,and to make some suggestions.
1. *If you heart rate is still rapid, not "ok" this should be reported to your endo. The problem may be that you are undertreated, not over treated. When you are at the beginning of Graves’, there is no way to know which doses of ATD and beta blockers will help you to get your symptoms improved or resolved, and your labs representative of how you are feeling. Both labs, heart rate and BP, and your hyper symptoms all need to be reported so that your meds can be adjusted. At this period of your newly diagnosed Graves’, frequent communication (and empathic communication, I hope) is very important.

2. There are tons of people on this site who have had RAI. Try using the search box in the upper right hand corner, type in RAI, and you will find them.

3. When there is a new diagnosis of Graves’, with all the typical (and awful and potentially dangerous) symptoms we have,
the healthiest and safe measures to take are to begin on an ATD and a beta blocker (if cardiac issues, fast heart rate, palpitations, etc.) That is step 1. When you feel less hyper, and you are less hyper, there ARE three choices for treatment, as Bobbi briefly mentioned. She told you a lot about RAI, and mentioned the other two which are surgery and continuing on ADT’s. All three treatments are represented by people on this site, and usually we are able to make a personal choice about which way we want to go. In your list of pros and cons, of course the geographic area and availability of experienced and qualified surgeons, and the same for RAI, are considerations. Every choice has pros and cons. I chose surgery, was happy with my choice. Use the search box for the other two options.

It has already been suggested to you that you ask your doctor why he recommends RAI only, and you would like more information about the other two options.
Shirley

[snelsen]

in reply to: Alternative options? #1061931

hi, I want to respond to your email tonight, but I am too tired! Will do tomorrow!
Shirley

[snelsen]

in reply to: Thyroid Eye Disease #1061965

I have TED, feel free to ask any questions you want. The hardest part (other than all of it being hard!) was the double vision, and waiting to have it corrected until I was out of the "hot phase" or active phase. The eye muscle (strabismus) surgery was wonderful. Hope you don’t get double vision, lots of people don’t. I am in the "cold phase" or inactive phase, finally, and have had three surgeries. I still take eye drops, lubricant at night, and sunlight or even ambient light bothers my eyes a lot.
Shirley

[snelsen]

in reply to: Alternative options? #1061929

No, there really isn’t. Other then the three choices you know about. 1. ATD’s 2. RAI 3. Surgery, thyroidectomy.
It really is the safest way for us to go. Bobbi’s post to you gave a wonderful and factual explanation of the reasons why.
I have regarded these three choices as wonderful lifelines to a life of full health, and with time, getting back to you were before you ever heard of Graves’.

As you have learned if you have read many of the posts, or used the search box to explore more posts, each of us choses the treatment that feels "right" for us. Sometimes we make a list of pros and cons for our particular situation, sometimes a person will feel very strongly against one or two of the choices. And that leaves the other one!
I chose surgery, have always been glad, and I think you will find that most of us are happy with our choices, because they were "OUR choices, and we did not feel pushed into a specific treatment by doctors, family or friends. Having said that, there are variables that should be included on the list of pros and cons that do not have to do with personal preference, and they are pretty much logistical or occasionally a medical choice. There are rare times when the surgery option is really indicated.
Logistical choices could include distance from the treatment area, no access to RAI where you live, no reasonable access to surgeons who have at least 50+ thyroidectomies in their practice, just to mention a few. Generally, personal preference can rule.
Best luck with your research and your "process." We have all been there. To address your questions in your last post…..
No, diet won’t make it better.
No, it does not go away. We will always have Graves’. And you have pretty much learned this by your own personal experience with getting hyper again. To repeat Bobbi’s email, hyperthyroidism untreated can be dangerous and fatal.
I am sure if you search enough, you will find anecdotal stories of people who have tried other things. But there is no science behind it,and the testimonies are just a snapshot of one day, not of how the individual continued to do. There are no evidence based, longtitudinal (over a long period of time) studies of any other treatments.

My personal opinion is that taking a thyroid supplement is not a harmful drug. It is taking a critical, necessary for life, hormone that we need. Our bodies used to produce the right amount for us, then we got Graves’ and it is a whole different story. I imagine when you refer to harmful drugs, you are not referring to thyroid replacement, but rather to ADT’s (re harmful drugs) but wanted to address your question.
Then, again, review Bobbi’s and Kimberly’s posts addressing these concerns.
Shirley

[snelsen]

in reply to: New and have many questions #1062171

Susan!
How empowering! Once you do something like that, it is "money in the (psychological, physical emotional) bank," thus it will be easier for you next time! And what a marvelous payback! I am so happy for you!
Shirley

[snelsen]

in reply to: Has anyone ever done Reclast IV? #1061993

Hi, you caused NOTHING! The subject was presented, and a couple of us chose to address it, for that was the subject of her email. I think we are done with that.

So glad you see some improvement, even if just a little bit. I really do think you are headed in the right direction, and I am so darn sorry that your reactions were so significant. But I think you called it right, re not going to Urgent Care. They would have no clue of your history, and in this case, you would simply end up spending a lot of time expaining how you feel to them, and it could be a circular event, where they referred you back to your doctor! Having said that, if you feel you have an emergent situation, or simply want to be seen, use your own good judgment, and get seen! ” title=”Cool” />

I am guessing there would be a lot of people on this site who WISH they could email with their doctor. I can, and I love it, for information does not need to go through one or more people, along with the accompanying misinterpretations that can happen. I really like it, being able to explain things in my own words, to the person I am trying to get the information to!

You’ve got it right! GD DOES affect our entire lives. It has been very discouraging to me over the past 2+ years. THis site has really helped me for support.
I’m off to the dentist to get a crown. I see $ signs!
Shirley

[snelsen]

in reply to: Has anyone ever done Reclast IV? #1061991

Erica, I think further discussion of litigation, and a profession for any of us to speak with authority about a field we do not kno at all, is not in the best interest of anyone. This is a subject initiated by you, and it is time to have closure. There has been enough dialog about a subject that Lilsispatrick did not ask about. And if she did, not one of us on the forum is qualified to state knowledge in this area. With that in mind, I will not address any of your proclamations. We’re done.
Lilsispatrick can explore this further if she is interested.
Shirley

[snelsen]

in reply to: Has anyone ever done Reclast IV? #1061990

Hi lilsispatrick,
I am wondering how you are feeling today? I sure hope your discomfort after the Reclast is resolving. Did you try ibuprofen?
Did it help? Did you check in with the doctor’s office? I realize that he already said that it would get better in a few days, and I am hoping you are seeing improvement and getting more comfortable each day. Do write to give an update on how you are feeling. I sure am sorry you got pounded with discomfort after the med. The good news is, that you do not need to think about it all for two years. And at that time, you can get a DEXA, see if your osteopenia has improved, and go from there, either decide to give it another go, or decide not to. My heart goes out to you relating to all the steroids you have had. I HAVE that drug, and how it made me feel. ANd it is not a friend of bones, that is for sure. But sometimes worth trying, and sometimes it is a life saving drug in certain situations, like extreme allergic respiratory events.

How much is your pretibial myxedema contributing to your leg pain now? I know it can really hurt. Are you in the beginning stag stages of that, and/or did the steroids help it? My understanding is that topical steroids help a lot, and if there is a lot of edema, support stockings help. So, not sure where you are with all that, but if you are interested in a very nice review from a reliable source, the Journal of Clinical Endocrinology and Metabolism, just let me know. I’ll send the link
Do write again.
Shirley

[snelsen]

in reply to: Symptoms back after 2 years in remission :( #1063948

Go the the board index (before you see the messages. NEW TOPIC is in red, right below where it says board index on the left. That should do it.

[snelsen]

in reply to: Symptoms back after 2 years in remission :( #1063947

You will really enjoy having the support group in Phoenix.
I think you click "NEW TOPIC" on the board, but as I write this, I don’t see it!!!
Maybe Kimberly, Bobbi, Ski can help with this. Or maybe I am on the wrong screen!
Shirley

[Author]

Posts