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in reply to: Levothyroxine in morning or before bed? #1176503

I don’t think it matters THAT much. Since you have your routine of vitamins, muscle meds, etc., in the morning, that seems a good reason for you to take the synthroid at night. The important thing is realize that vitamins, minerals, etc., interfere with the bioavailability of the thyroid hormone, and you already realize that. Then, you would not have to set the alarm, and you can eat breakfast whenever you darn please!
My two cents!
You know the important stuff. I think I heard something about this at the last conference, but I can’t recall the details. One of the facilitators will jump in on this, too.
Shirley, who takes Synthroid in the morning with water, then has coffee with cream around 20-30 minutes afterward. But I always do the exact same thing, every time.

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in reply to: Synthroid Recall #1176482

Yes, you are correct. But the new recall is now about 6 weeks old, and now a non-issue for consumers, I believe. I think now it is “old news” as far as relevance for today. The few bottles that went out were pulled back the first week in December, that is what got from reading about it.

http://www.nasdaq.com/article/former-abbott-drug-unit-issues-2nd-recall-of-synthroid-in-6-months-20130111-00437#.UPMtqKU4Q20
Shirley

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in reply to: Synthroid Recall #1176480

Yes, this was mentioned before on the forum. Thanks. It is a very small amount of pills, and most of them were not distributed to pharmacies. It is good that there are checks and balances. Recalls happen quite a lot. Not anything to be alarmed about, but aware of. It’s pretty much a total non-issue now. If anyone has a concern, there is a post here, or you can google, the lot numbers, contact your own pharmacy if you are taking 150mcg, and check out the lot numbers. Don’t be surprised if the pharmacy does not know what you are talking about.
Shirley

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in reply to: PTU effectiveness vs Methimazole #1176422

I am wondering if it is the (simplistic, I know) because since all of this is a guessing game re dosing and amount of ATD, that you are not receiving enough to counter the massive amount of extra thyroid hormone that is racing around your body, and causing the hyper symptoms. Are you o a beta blocker, too? Good thinking to have your labs drawn.
Believe me, those labs are known now. I look up labs on the computer ALL THE TIME, both as a professional, checking labs of patients, and also checking all my own labs, cause we have electronic access to that information as patients. If a thyroid panel is drawn in the morning, even in a super busy lab, they are certainly available to your doc now. I suggest calling the primary doc’s office, tell them (if you haven’t already) to fax them STAT to your endo, then call the endo, tell the office they are coming. The labs should help everyone decide what to do, along with your symptoms. It is a tricky business. You do want the ATD’s to help, but you don’t want to be plunged into hypo territory, either. All of this is so darned unpredictable. Hard for everyone!
Good luck, hope to hear from you again, glad you switched to PTU, I took it, too. So glad you are relieved of the unbearable side effects of MMI
Shirley

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in reply to: Memory Tips and Tricks… #1176360

I have an iphone. I missed two appointments. Which app is it? I am an iphone newbie.
Thanks a lot.
Shirley

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in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176378

As you know, we are all patients here, experiencing some phase of Graves’ or Hashimoto’s or TED.
But, my heart really goes out to you! You are quite a puzzle, and I am wondering if your primary care doc has the fund of knowledge to think carefully about your symptoms. And he might be the right person. From what your endo said, it does seem that he is not interested in caring for you, working with you, with your very real problems and symptoms. I wonder if Hashimoto’s has been a consideration? You definitely need good care, and someone to really care about you and your life. Seems like you are carrying a lot of weight, but if you have felt like a slug for 10 years, with feeling hyPO, everything is working against you!
I look forward to the facilitators seeing your post and responding.
Do you have a choice of finding a really good endo? Or begin with your primary doc, and be candid with him/her, and ask him to take a careful history, and think about a differential diagnosis, including mentioning Hashimoto’s.
If he is the one who referred to the endo you had, ask him for another referral of one who really cares about Graves’, not just diabetes.
Welcome to the site, it is the best.
Shirley

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in reply to: Could This Be True? #1176354

And. I am wondering why the doc did not examine your mom? But so glad she is OUT of the hospital!!
Shirley

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in reply to: Could This Be True? #1176353

It is my thought that the P.A. did not study endocrinology. He is so very wrong in his comment, in my opinion. ATD’s keep us safe, and in some instances, keep us from dying. Agree with the other comments. I think the standard of care for Graves’ is well documented by controlled studies. Many folks who have Graves’ hope that the ATD’s will “work.” And they do, to keep us safe.
The case of adnenur’s friend is pretty typical.

It is almost a ludicrous statement to say that the doctors are trying to save the insurance companies money. That is so the opposite of what could be the case.
Shirley

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in reply to: Suspecting Graves in Teenage Girl #1176327

Agree. Antibodies should also be ordered. As well as TSH, T3 and T4. Your endocrinologist should know this. If you find that the endocrinologist does not seem very familiar with Graves’, I suggest you consider finding the “right” endo, if, indeed, she does have Graves’.
Shirley

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in reply to: Suspecting Graves in Teenage Girl #1176326

Gosh! Sounds like it has been a tough road for your daughter and you! I am so sorry!
My first thought is that she has, and has had, many of the classic symptoms of hyperthyroidism, i.e., Graves. Sure does prompt me to wonder if, anytime in the past six years, if the docs have thought of Graves’, and ordered a thyroid panel lab. Incidentally, for your own knowledge, after the blood draw, most labs have the result in just a few hours, not days or weeks.
So I suggest you move forward now and get those labs. I am sure you have had multiple exposures with the health care system, and doctors, so I am hoping you have the existing relationships that will help you get this done soon. IF you have access to electronic medical records, you can look up the labs yourself, so you know when they are done and what they are. I say this, cause there is no reason at all for you to have to wait and wait and wait for these results. I am not sure from your comment if you have already done this, or not. The road of testing is very fast, with results very quickly.

I have read the PANDA studies, and articles on the NIH website, and as you inferred, there is not much that is known, and a lot of questions exist about its’ diagnosis and existence. And treatment. “further research is needed,” as they say. And with rare diseases, it is hard to conduct studies, becasue of the few number of people who have the rare disease.

Regarding your question about OCD behavior, and outbursts, this can certainly represent a very hyperactive person. You just feel totally crazy, out of control. If you read some of the posts in this forum, you will see this is a consistent theme. We hate to feel like that, and we are not ourselves. Plus, all the other symptoms you listed in your post. Add increased heart rate, and tremor when you hold your arm straight out in front of you.

I think it is time here for me to say that I am “just” another Graves’ person.
I have, however, worked in health care for the past five decades, so some things are more comfortable and familiar to me, having worked in this field all my life.

So, part of me is hoping that she has Graves’, and if she does, I feel sad about all the years that this has not been thought of in a differential diagnosis. But I am making assumptions that I really do not know, about how the path has been for you and your daughter.
Welcome to this site. IT is wonderful.
Shirley

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in reply to: Support Groups #1176314

The Graves’ foundation and Kimberly may be the most helpful resource.
Shirley

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in reply to: Happy New Year #1176319

To add to Bobbi’s thoughts, I know it seems super obvious, but….
Try to find an ophthalmologist who is familiar with TED, thyroid eye disease.
If you can’t find a couple names through referrals, maybe your endo has some knowledge, when you call the office, say that you are a new patient, that you have Graves’, and you would like a baseline exam, for you have a few symptoms of TED or thyroid eye disease.

Regarding the cytomel, it is good that you are seeing your endo tomorrow, and again, I suggest asking more questions about the Synthroid and the cytomel.
As Bobbi says, it is used very rarely. While synthoid is metablized through out the day, cytomel is kind of like a big “dump” and can rev yourbody up for a short period of time, then it is all gone.

So you are on a big learning curve right now.

By the way, is your dose being increased because of symptoms you are having, because of the labs, or both reasons? (or neither of these reasons)
We (folks who have Graves) get VERY impatient with the slow molasses progression of all things associated with this disease. It takes AT LEAST
six weeks to two months to evaluate the Synthroid amount we are taking, before a change in dose is recommended. Takes a while for it to kick in, and if labs are done too early, it can be misleading.
So, in question form for your endo…
1. How often do you order labs at the beginning of my treatment? How long do we wait to do labs after a dose change?
2. Can I get the labs done before the appointment, so we can discuss them at that time? May I have the labs slip now, so I can get the lab drawn a couple days before my next appointment? (or can he order electronically, so when you go there, the requisition will be there.)
3. I understand cytomel is not used very often. Can you explain why I am taking it, and how I should report back to you so you are sure to get the messages?
4. Can we email?

There is a lot that I don’t know from your post, like,
why was the synthroid increased, did he explain his/her thoughts on adding cytomel? How are you feeling, was the ATD increased because you felt hyPO, and so he upped the dose?
Good luck on your appointment, hope to hear from you again. Congratulations on being this far down the road to getting back to feeling like yourself.
Shirley

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in reply to: New To Graves’ Disease #1176296

Hi Terri,
For sure, insomnia was part of my world when hyper. I was always way too hot, and both of these are typical symptoms of early Graves’. Probably the ATD’s will help you more and more. I did have some night sweats, too. I was heat intolerant, kept my house at frigid levels for others.

Realizing that you are not seeing your original endo until March, I suggest that if your symptoms and how you feel do not progressively get better, based on how you feel, your heart rate, plus since you are new on ATD’s, the “standard of care” is to be in close contact with your doc, so he/she can adjust the dose of the ATD. The docs have no way of knowing exactly how much ATD or beta blocker you need. They begin with amounts that from experience and general knowledge, are a good “starting place.” But it certainly possible that, as time goes by, you may need a dose adjustment, more or less amount of these drugs.This is what you SHOULD have been told initially. But there is a lot to absorb, that is for sure.

The other thing, and I do suggest that you have labs. Most docs want to have labs done (thyroid panel and liver function, CBC (cell blood count) around 4ish to 6 weeks after first beginning your meds.

I’m just writing as a patient, as we all are, even thought it sounds like we know a lot of stuff! (:

As I write this I suggest you take the content of my post, and perhaps some of the others that prompt you to know and understand more, I suggest you make a list of questions for the Dallas doc.

I have to run to a dental appt. right now, but sometime today, I ‘ll send some suggestions to you to get you started.
Shirley

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in reply to: New To Graves’ Disease #1176293

Not with that particular antibody. There are lots and lots of autoimmune diseases, and many more probably not identified. Diabetes, Crohn’s, celiac disease to name some of the more well known ones. Different antibodies.
Much research is yet to be done @ autoimmune diseases and the process.
Shirley

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in reply to: New To Graves’ Disease #1176291

Welcome! Graves’=hyperthyoidism=Graves’! is pretty much what it amounts to.
Will you see your doc again soon?
Re eyes, Kimberly gave you the info about that. Don’t even bother thinking about it. If you have eye changes, tearing, sensitivity to light, double vision, then find a good eye doc who is familiar with thyroid eye disease (TED)
As she said, it is not an issue for most people.
Re labs,there are some really good references about what these labs mean and their relationship to each other. If you use the search engine on this site, and type “labs” or maybe “explanation of labs” I have no idea which phrase would pull up the great explanations of the meanings of each of those labs.
Also, there are reliable resources that explain the relationships-plus asking your doc the next time you see him/her. Your lab sheet should state the normal ranges by the results of your labs, does it?

I know that either Ski,Kimberly or Bobbi, gave a great and simple explanation of the relationship of the labs to each other, and what they mean.
SO GLAD you are reacting nicely to the ATD’s! This is super good news.
YOu will be well again. It is kind of a slug to get there sometimes, because it takes more time than any of us like!
Shirley

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