[snelsen]

in reply to: Tomorrow’s the Big Day! #1172477

Pump and dump for 24 hours after anesthesia sounds very conservative.
Try asking again, ask YOUR anesthesiologist, whom you will meet before you go to before you go in the OR. I imagine you will be asked if you have any questions. You do, so ask how long the surgery usually is (I’d expect you’ll be told around 2 hours.) Then ask if you can feed your baby when you get home, when you feel like it. Get another opinion, maybe it will be more to your liking.
Either way, you will soon be connected with that baby soon! The waiting is almost over.
How did he do, taking a supplement? There was NO WAY I could be the person giving the bottle. They are way too smart for that!
Best of everything to you!
Shirley

[snelsen]

in reply to: Fetal graves disease? #1172465

I’d try go get more information from the neonatologist, so you know the whole scenario a little better. It sounds like a good precautionary measure, going to the NICU. It is my understanding that, in this country, all babies are tested for neonatal hypothyroidism. The medline reference says it is determined by each state. That was a surprise to me.

http://www.nlm.nih.gov/medlineplus/ency/article/001193.htm

It sounds like you are having very good care, and your sweet baby will have all the right tests.
Here’s another discussion of the new guidelines for this subject from the American Academy of Pediatrics.

http://pediatrics.aappublications.org/content/117/6/2290.abstract

I encourage you to get a really good understanding, so you feel secure and reassured, not worried It sounds like you and your baby are getting very good care.
shirley

[snelsen]

in reply to: Surgery or RAI #1172440

Regarding pros and cons of the three choices.
I think it is best, when considering them, to try to find as much information as you can about all options. Everyone agrees on that idea.
But getting the information is challenging sometimes.

I do stand my my statement that sometimes endos include in their recommendations for treatment, the option that they are most familiar with, and discourage another option. Geography and training can make a difference. It’s easy to find out. Just ask your endo.

Other, unrelated examples are in the literature.
Examples are abound in the prevalance of mastectomies vs. lumpectomies in breast cancer. Also the number of hysterectomies performed varies widely in geographic regions. And the number of laparoscopic procedures vs. open procedures. Depends on their training, some depends on the medical culture of the area, or can depend on the services they have available, and the equipment they have in their hospital.

But what we really care about is ourselves, and our situations and our available options. Sometimes it is because they are looking at our health picture, and suggesting what they consider best for us, as an individual.
One person with Graves’ may have a cardiac history that discourages surgery unless absolutely necessary. Another person may have had a boatload of radiation over their lifetime, or been told they have had their lifetime radiation dose, so RAI is not desired, either by the endo or the patient. There certainly are situations where one treatment is preferable over the others, even if it conflicts with what we think we wanted.

Sometimes, they are more familiar with the referral docs they usually use. I would encourage anyone who is trying to make this decision, to state their own preferences, if they have them, for the treatment they want. Ask a lot of questions.
Another thought is the best sources for information about RAI and surgery, are the nuclear med department and docs, and the surgeons themselves.
They are the best resources, for that is what they “do.”
If another option has been suggested that you do not want, be sure to tell them that.
I suggest we ask them why they suggest only one treatment over the other two choices. There may be a very good medical reason for it, and there may not. Generally, the three options of RAI, surgery or ATD’s do depend on the combination of what we want, what the endo recommends and why, the area where we live, which country, and if we have access to a major medical center.
I am not citing the NIH and medline references for the following in this post, but they exist and I can pull them up again.

Regarding calcium:

1. In almost all cases, if calcium levels are low, and it is rare, after a thyroidectomy, we take calcium for a few days, have labs again, and usually the problem is resolved.
2. With RAI- It occurs, though rarely, that the same parathyroid situation and the need for supplemental calcium happens due to low calcium levels.

3. It is also true that a very small % have other involvements with vocal chords, usually a hoarse voice for a week or so, and/or it is also possible that there would be a need to take calcium forever due to a complication of the surgery. And it is a complication. It is extremely rare, but has happened. Then we would need to take two meds over our lifetime, thyroid hormone and calcium.

Bobbi is so right about the lists of side effects that are stated for almost anything involved with medical procedures. They list everything.
When I had my orbital decompression, the op permit, said, among many, many other risks,
“too much surgery, too little surgery, need for more surgery, blindness, numbness, decreased vision, double vision and death.”
It kinda makes you want to walk right out the door! But we need them, too.

As the facilitators have emphasized many times, and in this thread, that if we choose surgery, we should have a surgeon who does many, at least 50, thyroidectomies a year. Since both Graves’ and other thyroid conditions needing thyroid surgery are relatively uncommon, these surgeons usually draw from a larger population base.

Shirley

[snelsen]

in reply to: OTC meds and diet effects on Graves’ symptoms #1172458

and, another possibility. if you took pseudophedrine, it is a decongestant, but also a stimulant. It is a vasoconstrictor, and can make your heart rate increase, sometimes race, increase your blood pressure. That is why they have it behind the counter now. You can buy it without an RX, but it has been misused, so now they have some restrictions on it.
Good reliable reference if you would like to know more.
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682619.html
Shirley

[snelsen]

in reply to: Surgery or RAI #1172437

hi, too tired to write tonight. i chose surgery. alexis, adenure on the post, has a small baby and is having surgery soon. Check out posts by lhc11 or lch 11 i can never remember for sure.
Surgery is faster. some docs do not recommend it cause they are not familiar with it, or were trained to think RAI first. You do have a choice, people chose each for their own reasons; I loved me choice, all went well, there are risks, though small, with all of this.
Sorry, so tired I am done writing tonight, but wanted you to have a response!!!
Shirley

[snelsen]

in reply to: Thyroidectomy recovery #1172452

I have written a lot about this and so has lch11..or lhc11, use the search box.
But tonight I am bone tired, going to bed.
Summary? Easy. Went back to full time work in 2 weeks. I would take 3 weeks off, use the 3rd week to have fun. More tired than usual for about 3-4 weeks, not a biggie though. I had a baby so hard to differentiate reasons for being tired!
Shirley

[snelsen]

in reply to: Employment #1172419

Nice to know. And always good to check!
shirley

[snelsen]

in reply to: Tapazole reaction??-now what?? #1172366

Well, I do not take supplements, except for Vitamin D, cause I live in a state “where the sun don’t shine” for around nine months a year.

I was a bit concerned that that almost all of the sites that popped up for alpha lipoic acid, were selling it.
Like all herbal supplements, there is no control over the quality, and even sometimes the consistency of the dose that is stated on the package.
From what I could read, it looks like it won’t hurt you seriously.
Here’s one informative site:
http://www.drugs.com/mtm/alpha-lipoic.html

Regarding carnitine, here is a good reference. Generally, there are only specific situations when a person is deficient in carnitine. THere are some studies listed at this website. Some are very small, some measure PERCEIVED improvements from taking it. And there is nothing really wrong with that. It looks like it won’t hurt you, except for buying it.
Anyway, here is a very interesting article from NIH about it.
http://ods.od.nih.gov/factsheets/Carnitine-HealthProfessional/

I am so glad you are feeling better, and reacting well to the methimazole. Best wishes to you for continuing to move toward feeling great!

Shirley

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in reply to: Employment #1172417

Hi, I think you got some helpful advice from Laurel regarding disability. There may be some financial help because you have children.
Generally speaking, Graves’ is regarded as a treatable disease, which we recover from, so getting disability is tough and time consuming.
Disability attorneys, like all attorneys, are very expensive.

It does seem that the ATD’s are really helping you. How long have you been on them? Generally, people feel better and better as they take the ATD’s.
So perhaps that will help your job situation.

I am sure it is very disturbing to be told not to work. I understand why you will continue to look for employment. You need the income. Any chance you can find a job less than 100%,but does have health insurance?

Are there any other programs for your children that would help relieve your financial burden? This seems like a good thing to explore.

i hope you feel better. Once you feel better, it might be easier to work. When you can work, and can explore any benefits that you can find to manage your Graves’ with further treatment, life will be better and easier for you.
I sure am sorry for your situation. It is tough to have three little ones, plus not feeling well and worrying about finances.
Shirley

[snelsen]

in reply to: Question about Selenium&Remission #1172192

Hi, as I read your first post, it seemed that you are referring to Graves’ disease. All the following posts provide other thoughts re selenium.
In my own experience with Graves’ and later TED, I did not take selenium for my eyes.
You mentioned selenium, which indicates to me that you have some eye involvement, can’t tell from your post for sure. But if you do, realize that Graves’ and TED are different autoimmune processes.

” Besides if you have TED that right there confirm graves, right?”

Well, no, I do not believe that is correct. Check with your docs about that thought.
To put it another way, you do not take ATD’s to treat TED, and a person can have TED without having Graves’. Having said that, more people have TED who have had Graves’. If you have eye involvement that seems to be getting worse, I suggest you see an eye doctor who is familiar with TED. But it does not seem that is the case.

The one study Kimberly mentioned, in reference to TED and mild eye involvement, is not at all conclusive, for it was conducted in a part of the world which is selenium DEFICIENT. She pointed this out in her post, plus all the other information that you might need about selenium. I think the most important thing to know is that there are varying views, as The study was not done as a treatment for Graves’.

But as I read the rest of the posts, concluding with your last post, I would like to offer one piece of information or thought that you may have misunderstood. Please check with one of your doctors about this.
TED is NOT diagnostic for Graves’.
So I am assuming you are taking the ATD for Graves’.
And I guess some doc has said you have mild TED, and suggested selenium??

If it were me, I would like to know if I have thyroiditis or Graves’. The scan could give another piece of information for an accurate diagnosis.

Regarding what to do and how to take your ATD’s, I suggest whatever you do, that you continue to be in contact with some doctor so they know what you are doing with meds, in the event that you have further issues.
Shirley

[snelsen]

in reply to: Save the Date – San Diego Conference & San Francisco Patient Education Event #1172428

Hooray!! I am saving the date!To all in the forum, this is a maevelous conference. Well worth the time and expense if you can do it. Plus, meeting people who have become new and close friends on this forum.
Shirley

[snelsen]

in reply to: thyroid and eye disease #1172290

I am happy to hear this information! I certainly was open to knowing more!
Yes, you are so right, different parts of this countries, and different countries, have their own parameters for practice.
My main motivation is for everyone to know that optic neuropathy CAN happen, as it did for me. So good to have visual field testing by someone who is familiar with the whole tED world
Shirley

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in reply to: Scared and panicky #1172406

Good plan, Alexis. Sounds like your own diagnosis is accurate!
Shirley

[snelsen]

in reply to: thyroid and eye disease #1172287

I second the suggestion from Bobbi regarding the doctor who suggested that you ask for evidence based, academic studies from respected journals, that support his statement of removing the throid because it was attacking the eye muscles.
Bobbi, for my own interest and that of others who are beginning with, or have TED, my question is, in your personal experience, did the oculofacial surgeon
do all the visual field testing for signs of optic neuropathy? There are several finite tests for that specific problem. The Humphrey Visual Field machine is the current one used, along with looking at pages of colored dots, to identify the numbers, plus a couple others. My oculofacial surgeon was in my life to plan and do surgery. I was referred to him for an emergency orbital decompression AFTER optic neuropathy was diagnosed by the neuro opthalamologist. When I first had TED diagnosed, it was emphasized to me that I definitely needed to be followed by a neuro/eye doc. Maybe other eye docs do these tests. but the reason I was referred at the beginning of TED, is because the initial eye doc told me that only the neuro/eye docs did them.
Perhaps this is not correct in all instances.
Shirley

[snelsen]

in reply to: Scared and panicky #1172403

You will be fine with the beta blocker. It will probably help you.
ANd..of course you are experiencing some stress about the unknown. But remember, this is a TREATMENT, the path back to being YOU again!

I think you would feel much more anxious and worried if you were still in the limbo you have been experiencing for the past few months. YOu are doing the right thing for you!
Shirley

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