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in reply to: Flu and Pneumonia Vaccines #1173977

I have had flu, shingles and the pneumonia and shingles. All my doctors agree on this, the endo, the internist, my oncologist and infections disease docs. All stated they could think of no reason not to have them, and very compelling reasons to have them, that Graves’ was irrelevant to these decisions. I am relieved to have them, and will continue to get the flu shots every year.

As gatorgirly said, sometimes immunizations of any kind are rejected by some people. It is a hotly debated topic. Of interest, at this time we have had a whooping cough epidemic on one of the islands in my area, where many parents do not immunize their children. As a result of this, pharmacies are offering free pertussis shots. Also various Chicago areas, and some places in North Carolina. But this is unrelated to Graves’, just interesting.

Of course, in completely unrelated situations, like chemo, bone marrow transplants, and anyone who is seriously immunosuppressed, it is a different situation.

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in reply to: methimazole dose #1173919

I sure do agree with Kimberly. I’d try the cancellation route as she suggested.
Your weight loss is significant. What is your pulse rate? I’m thinking if you call, state the 40lb weight loss in this short time, and any other symptom you have, tremor, heat intolerance, etc. and especially your heart rate, you MIGHT get an earlier appointment if the right persons hears these symptoms. Another reason you have to wait so long is that you have a “new patient” slot, which allows more time than regular appointments, and there are many fewer of those in their schedule. And I think your post reflected that when you mentioned referral appointments.
Well, Oct 29 is better than late December, but somebody should be able to treat you before that. Perhaps another doctor who is more familiar with graves’ that the doc your mentioned is. I hate to have you go without any treatment for that long period of time. ESpecially, if your symptoms and weight loss become more pronounced.
I am wondering if your doc is that familiar with Graves’, thinking that a 3 month wait is ok?
Shirley

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in reply to: ~ Liver/Graves Disease relation ~ #1173861

No I have not ever heard of the relationship.

I do know that they can be elevated for a few reasons then revert to normal. Unrelated to anything sometimes. Next strp is to wait a small period of time and drs
Aw another lab, look at the trend.
Shirley

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in reply to: methimazole and selenium #1173877

Welcome! Please check withe your doctor because stopping the methimazole is not a good thing to do. Selenium will not take its’ place. I am thinking that you mean this is the doctor’s plan though. which is ok.

Gosh you have been dealing with this for a LONG TIME.
WELCOME to this site, it is wonderful.

So is your country! And your food!
Shirley

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in reply to: Hypo Might Raise TED Risk? #1173895

Gator girls, I love this forum too!,, any chance you will plan to attend the big conference sometime? I could not go last time to Boston cause I had just had grafts from my hard palate to my lower eyelids. But I am going this year

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in reply to: Crazy Journey #1173178

Katie, I know three people who have had the same situation. Thyroid cancer is slow growing and usually contained. It is a NON ISSUE in their lives 8, 16. And 30 years later. Excellent prognosis.
Graves will be part of your world forever. But thyroid cancer will not.
Shirley

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in reply to: Hypo Might Raise TED Risk? #1173890

Gatorgirly, I was simply trying to understand as much as I could. No confrontation, no nothing, intended.

I write about my experience, too, am not a medical expert. Just sharing my perceptions and trying to “get it.

I genuinely was trying to learn. It certainly is true in all of our health care worlds, that we can get 2nd opinions from different doctors. Not too mention third and fourth.

I developed severe, super TED 50 years after I had super severe Graves.
I hope this does not happen to anyone else. IT is ruling my life, and making me miserable every hour of every day.

I am writing a brief not now, for my old computer and my new computer (i am at the Mac store now) will both be gone for 1-2 days. I did not want to wait to write a short note.

If apologies are needed, the are certainly given.
Bye
Shirley

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in reply to: Hypo Might Raise TED Risk? #1173885

Hi gatorgirly, a couple of questions and clarifications for you regarding Graves’ and RAI and TED that came up in your last post.
I will say at the beginning that this may be entirely a communication issue,and the points I raise below are based on what I read in your post.

I am hoping Kimberly will see the post, and send the very recent studies and references on this subject of TED and RAI. This,in my recollection, contradicts to what you attributed to her in the reference in your last post. That was seven years ago.

To begin with, I do not think there is a final recommendation AT THIS TIME on the standard of care for a person with TED, whether or not to proceed with RAI, and what treatment to give before RAI if it is done. As I recall, a round of prednisone has been suggested pre RAI if that route is taken. But in the past 2-3 years, much more caution has been raised with deciding to proceed with RAI if TED is present prior to treatment. I really don’t know one way or the other, but I believe she has referenced some valid studies, and recent information, that definitely have shown that if a person has existing TED, especially any degree except very mold TED, that there should be a lot of reservation about administering RAI.

In another area, it is my impression, despited some of the posts which infer otherwise, that other than anecdotal reports, there is no evidence that being hyper or hypo great impact the severity, or degree of TED. My information is also anecdotal, for I have simply asked the endocrinologists who tread Graves’, and the members of a couple groups of ophthalmologists who treat TED, and the conclusion from both groups was that (other than having reservations about moving forward with RAI when a patient has significant TED) neither specialty pays much attention to this relationship. It has certainly been my experience, which is, of course, just my experience.

I also checked with the nuclear medicine department. Maybe they are wrong, but they basically said the it would be a cold day in hell when I131, ie RAI, was managed and administered in the endocrinologists’ office. They said they were not trained or legally allowed to do it,not did they have the equipment and resources to do it. That they were not nuclear med docs.
THat it was a Nuc Med procedure. So all of this puzzles me.

So, in summary, I raise these points to try to clarify them, if this is possible.
One other point. When a patient does have a thyroid SCAN, they also go to Nuclear Medicine for that. It is not done in the endo’s office. Unless, of course, there is a nuclear medicine department, with the proper machines, and nuc med docs who are radiologists trained in nuc med, in the same office. But I would posit that is highly unlikely. Endocrinology and nuc med are different departments.

Regarding dose-it is my understanding that the endo suggests the dose to nuc med, based on scan results, and frequently there is disagreement from nuc med regarding the dose, and the come to some happy compromise about it.

I have not taken the time necessary to explore either of these topics thoroughly.
Shirley

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in reply to: new to forum…thyroidectomy pre-op tomorow #1173835

Wendy! You are going to have SO MUCH SUPPORT on this forum. From marvelous people who will be your new friends! REally. Follow Kimberly’s suggestions, and also I have a couple names for you to use in the search engine.
Adenure (on the forum, her name is Alexis) She is a young mother, like you, and if you read her thread from the beginning, I think you will get a smile on your face, knowing that you have made the right decision for you, and you will march toward health, probably faster than with an RAI in your situation with having kids, etc. You will ready exactly what the post op experience is like (easy.) AND she also had sky high liver enzymes, had to change her ATD.
Also, I have a degree of concern about your eyes, and since you have symptoms now, there is literature out there to give you pause about RAI. But that is not an issue now. Cause you made your decision to have surgery.

I had the surgery, I have written about my experiences, too. I was 24 with a 6 or 7 month old baby boy with colic, and I continued to breast feed. I was a MESS! In every way possible, including your experience of being thin, and not diagnosed right away. It was hell. I took methimazole (Tapezole, I think is the brand name, you can check it but does not make much difference.) I had (and needed help for a week, and two weeks is better. My husband was a med student, and pretty much out of the picture for helping. My student neighbors and my mom helped a lot, cooking, taking the baby between feeds, etc.

Also lhc11 or lch11, has posted a lot about her experience with her thyroidectomy, it is another helpful post. Several people in the recent past have had the surgery, but these two come to my mind first.

You will do well. You will be fine. Graves’ sucks, there is no other way to describe it. Alexis has written recent posts about how she feels now, and finding the right dose of thyroid hormone. But the really big thing is that
you are on the path to recovery. And there is no other way to get there except with following the treatment path.

all for now, welcome welcome welcome again to the forum!
Shirley

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in reply to: Methimazole Side Effects? #1173810

Suzanne, just a quick thought. Beer is ALSO made from rice or corn. I looked up a pretty good government reference, maybe you could try one of those! (:
A cold beer on a hot summer day, really tastes good. It is the only time I like it. Otherwise, I prefer red wine (for my heart, ya know! (:

I am assuming you are taking the typical Lyme steps for prevention (not supplements….) You will know a lot more about that than I do, but I did read the CDC recommendations for Lyme disease prevention after I read your post, and it probably says all you already know, but here it is.
http://www.cdc.gov/Features/LymeDisease/

I am SO GLAD you have a family doc you like, and who listens. Tell her you want an endo just like her!
Re the paperwork stuff,you need to do that with each doctor office, hospital, etc etc.

Off to dinner and have one cold beer (it is HOT for Seattle, almost 90, very unusual.)
I love this forum, too, for all the reasons you have mentioned.
Shirley

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in reply to: Methimazole Side Effects? #1173807

Hi Suzzane, so nice to hear from you.
I do have a lot of respect for gut feelings. And you might be absolutely right about all this that you feel, related to your ATD.

Graves’ is a tough thing to have, in every aspect of our lives. BUt we are stuck with it, and pretty lucky to have as many choices to have a lot of hope of gaining “ourselves” back to when we had never heard of it. Of course you want to feel well, not have all these aches and temperature changes, not to mention the anxiety and other crap that goes with being hyper. It’s hard.

To further complicate the issue, we bump along in life with a lot of other “parts” of our body, and sometimes we get normal stuff, and attribute it to Graves’ or the meds we take, and other times it is a completely different problem with our health.

Now, having said all that, I sure hope you can find a doctor who is caring, concerned, and REALLY listens. In this world, with all the pressures of health care providers to limit their appointments to 20 minutes, this is hard to do. But they are out there. Especially, with something like Graves’ (which we actually DO have the rest of out lives, have the continuity of the same doc over times, who begins to really knows you, and realizes that when you call or email (can you do that where you live?) that you are an informed patient about yourself. Is this possible, in your health care plan, to find one doc who is YOUR endo?(after you find the right one.)

Of course, our responsibility in all this, is to give accurate information about how we are feeling, and definitely provide the objective knowledge that they cannot possible know (pulse rate, blood pressure, etc. when you feel symptoms of hyPER and hyPO.) For that can help them help you with a change of dose of medication, and sometimes is very important to know. In other words, docs can help us more when we are good reporters (:
So, having said all that I have a couple suggestions for you for the future, with any doc and office, anywhere.
1. At every office, ask for a medical release of information permission form (or words to that effect.) Fill it out so that records of all visits (what the doc has written after you have left) all labs and other tests, sent to YOU for your personal medical file. This is helpful for you won’t feel so disempowered, and you will know what they are thinking about-AND what misunderstandings might have been written down by them that you can clarify in the next appointment. It is your right to do this, and no office should question it. But they can’t give you copies of your medical records unless you DO give them permission.

2. Now, the labs. It is a good idea to have them in your file. We don’t really have to study them a lot, and we can make our own decisions by ourselves about our treatment based on them. Still, it is helpful to know. Most lab results have the result, plus the “range,” or the general standard normal range stated right next to it. So when they flip the computer over for you to look at, ask for a copy. they might give it to you on the spot.

Lastly, all of us are complex people, so your (or my) symptoms can be totally unrelated to Graves’. When we are in the beginning of Graves’, especially, we tend to assume that anything that happens to us is related to Graves.
Or, again, it may be your ATD. IT’s all a mystery. I sure hope you have some success with good communication and good treatment.

Shirley

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in reply to: Methimazole Side Effects? #1173805

Hi. I have no idea. But the nurse may not know. (I am an RN.) Seems to me a set of labs is indicated, especially a CBC (cell blood count) to know your white blood count (WBC.) That would give information that can help rule out a very rare reaction, and a serious one, to methimazole. Agranulocytosis can happen, but I have no idea if it is a a possibility after you have been on the ATD for as long as you have been taking it.

As you already realize, that is a pretty big knee jerk reaction to stop taking your methimazole cold turkey. I certainly do not recommend that. But I understand your frustration, as well. And as you have learned from how you feel regarding hyper symptoms, one can hypothesize that you are still hyper without the anti thyroid drug.
*Do you have a fever? ARe you continuing to feel fine?
I think if you get really sick this weekend, and I mean REALLY sick, fever, etc., so that you are worried about yourself, you can consider going to an ER, but otherwise, I would call the docs office first thing Monday morning. How long has it been since you have had labs? Do you have a copy of them?

And, of course, it is possible, that it is unrelated to Graves’, or that you had something whacky that is over now.
Another consideration, depending on how your doc’s office works, is that you can call the on-call, describe your problems AND your meds, (be SURE to take your temp) maybe even mention agranulocytosis as a rare side effect, ask if you can get some labs drawn this weekend.

Of course, I am just thinking as I am typing, and definitely not a doc, as you know. But some things to think about.
Shirley

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in reply to: About to get results…nurse pulled my chart but hesitated and said…ahhh let the doc read and call you back #1173751

I’ll need to go back to read your other posts. Not sure why you need this info to decide. SO SORRY that happened. Can you look up results online, probably not, or you would have done so. Since you are at work, can you tell a coworker to answer the phone, say you are on your way back to your desk, so not to loose the call when you pee???
Look forward to your next post.

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in reply to: Went to Blood Analysis Today #1173463

Hi VanIslegirl,

I agree with Kimberly completely on all her comments. I’d definitely check with your endo, or some doc about some of the things you mentioned.
From my own knowledge, I KNOW that manipulating your thyroid gland is not a good idea. Certainly not safe when you are hyper. As a matter of fact, it is very important NOT to massage or manipulate an enlarged thyroid gland. It really can promote a thyroid storm, which is a life threatening emergency.
The incident I saw, was when the gland was quite large, and the patient was very hyperthyroid. I am not going to take the time right now, but maybe later I can find some evidence based, document studies or information about this You should also explore it yourself.

I did try to find out the training of a blood analyst, which I have never, ever heard of, but had no success. I have worked in health care forever.
The only thing I saw was a forensic blood splatter analyst, which is used in crime cases. That requires a four year program at an accredited university, then an application to be a forensic analyst.

Do read the reference that Kimberly provided. Perhaps you can find a similar reference at a Canadian medical center, too.

I suggest, too, that you ask for the lab report on your iron and Vitamin B status. You need to see it yourself, and if it is from an approved Canadian lab.

I don’t mean to discount your plan, but it is always good to check things out with your endo, and question things yourself as well. It is possible that not all you have been advised has sound medical background.
Shirley

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in reply to: Thyroidectomy #1173439

Hi, lilstorm,
I am getting on a plane in a few minutes so not much time.
Briefly, minimal pain to none, but sore neck (primarily from the position on the table) able to eat,but stayed away from steak and lots of chewing stuff till neck less sore. The K Iodide drops taste awful that we take pre-op I found orange juice and grape juice helpful in cutting the taste of metal. Weird.
No nausea at all, the surgery is short, and i think that is very uncommon.

I suggest at least two weeks off if you work, that is the minimum. For sure have help for one week, some help the 2nd week is a good idea. If you have kids, I suggest having help with them. You re more tired that you think you are, and energy to get up and go, is declined for at least 3-4 weeks. But you can do anything you like by week three.
Loved my surgery, would do it again.
Use the search engine for:
adenure (she recently had one and documented it very nicely)
also, lch11 (or lhc11, I can never remember which it is) Another nice documentation and helpful hints for you.
Shirley

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