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in reply to: My decision #1172328

I am quite confident there is no genetic test for Graves’ or any other autoimmune disease. The statements about Graves’ result from gathering existing information gathered from family histories, plus from researchers who review medical reports from clinics, doctors and hospitals.

I suggest that you contact the office of a geneticist, as your question, leave a message.
There is a ton of junk on the internet that leads a person to think that this exists, but the research is not behind it.

In the field of genetics and genomics, a field which is in its’ infancy, I am aware that BRACA 1 and BRACA 2 can be tested. The test is done by one lab in the US, the cost is approximately $1500.
As this field grows, I imagine the motivation for genetic testing will be guided by so many factors which are not defined at this time, but the impetus and interested, followed by the funding, will likely be in cancer, cardiac disease and other potentially fatal diseases.

There was a promising genome company in Iceland, which had funding difficulties, but this is a promising area of interest which is still receiving a lot of attention and funding from the private sector.
Shirley

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in reply to: Ahhhhhh! #1172382

Hi, I second Ski’s post in all her comments. I just wrote a very long post which got lost because my server decided to go down just as it was sent.
A summary of what I wrote follows:

-you health insurance and financial dilemma are very real. Here is a suggestion with that in mind. You must be medicated with ATD pretty soon, or you really are in danger with your health, short term and long term.
I suggest a free clinic, low income clinic visit, explaining your situation. Any doc can order thyroid labs, learn where you were with your dose, how long you have been off it, and write an RX for you. That is a START.

-the symptoms you mentioned certainly reflect being hyper. You did not mention your BP and heart rate. What is your heart rate? If it is above 110, 120, resting, I suggest you go to an ER today, tell them you have untreated hyperthyroidism. If your heart rate is racing, you might truly end up being an emergency. You don’t want that, but it at least would get you in the health care system.

-I suggest your husband, and if applicable other relatives and parents, read these posts, so they can begin their learning curve about Graves’, and the potential serious health issues that exist for you. And they will learn that the tremors, irritabliity, nervousness, inability to sleep, being hot all the time, are PHYSIOLOGICAL symptoms you cannot control because you are SICK.

-IT does not matter for your current problem right now,but sometimes the phrase “thyroid storm” is misunderstood. If you did have a thyroid storm after each of your pregnancies, you would have been a medical emergency, wiht the possibility of death, and most likely been in an ICU each time. So I am guessing that, although you had an episode of recurrent hyper symptoms after each baby, that you probably did not have the situation I described in the previous sentence.
IF you did, I suggest you go to an ER right now with that history.

-I also suggest if your resting heart rate is above 110-120, you go to an ER to be evaluated. That is a serious warning sign. Along with a higher blood pressure. If your pressures are above 140/90, you should be seen.

-My city has low income clinics and free medical clinics. Is this an option for you?

It is easy to understand why you cannot work. You are super sick until you get treatment. You can’t help it, you hate it and so does everyone around you. Been there, did that. It is very hard.

Do write again with some responses to what I wrote.
Shirley

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in reply to: Thyroid Surgery #1172348

To polishTym,
Agree completely. Some people are more familiar with info, all of us are at different stages of learning about our new Graves’ world.
I know you realize this. Because of the continuum of familiarity and learning and terminology, that is the only reason I wrote my post.
Shirley

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in reply to: Kidney Surgery Monday & Now Wondering… #1172386

Hi Kari,
Other than providing this information in your history, and I presume you may have received a phone call pre op asking what meds you are taking, I don’t believe that it makes a difference in your care, or that they would do anything different. With that surgery, I am assuming you are going home the same day. If you weren’t, then your thyroid med, dose, and time and method you take it, would need to be in the admission orders, so you would receive it in the hospital. I am not sure what you have been told, but I would take your thyroid with a little water before you go to the hospital. If you are not comfortable doing that, wait until you get home to take it.

It is a puzzle to me that you had swallowing issues with your C-sections, because it seems that you did not have a general anesthesia with your sections
(tube down your throat) so I cannot imagine why you had swallowing issues. But it doesn’t matter.

Since you are being “put out”have a general this time, some people do complain of a mild sore throat after the surgery Others don’t.

In summary, if they know the information you have written in your post, and the summary I covered in this post, they have what they need to know. They probably won’t do your thyroid labs, they won’t be interested, and they would not come back before your surgery, anyway.

The best to you with your surgery, you should do very well with that.
Shirley

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in reply to: Tapazole reaction??-now what?? #1172364

A brief comment. i don’t believe thyroid supplement has any side effects at all. It really is essential for us to be alive. Can’t live without our thyroid hormone. Having said that, when humans are getting to that “sweet spot” and right dose, it can be frustrating for the time it can take.

If we were in the normal people group, our loopback endocrine system does that very nicely, when the pituitary and thyroid have little conversations with each other if our needs to change over them. They just take care of it.
Just like our pancreas does a great job or regulating our blood sugars. But, as you know that goes wonky, too, probably even more than the thyroid home, it can be influenced by outside factors, which we can read about.

Shirley

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in reply to: Thyroid Surgery #1172341

Hi PolishTym, my post is mostly about semantics and clarity.

I have worked with a lot of surgeons. They tend to like to do the procedures they like to do. I imagine your surgeon is a general surgeon, who decided to call himself (or others call him) an endocrine surgeon. Not sure what all that entails, but I do think a surgeon who does 50 thyroidectomies a year or more, may or may not call themselves an endocrine surgeon. But it covers a lot of territory in the body.
A Whipple, or a pancreaticoduendonectomy, which is done for pancreatic cancer, could be called an endocrine surgery. But in my experience, docs who do this procedure do a lot of them, prefer the belly, and probably would not be a good choice for a TT. I have not seen TT’s listed for these docs on the OR schedule. The only reason I am mentioning this, is so that any reader does not misunderstand your post, if they are referred to a general surgeon who does TT’s. I would not them to have any anxiety if the doc they were referred to is NOT referred to as an endocrine surgeon. I know general surgeons who are the “go to”surgeons for TT, but they are not referred to as endocrine surgeons. If the referral is made, it is likely that he/she does a lot of them because it is a surgery they like to do. The more significant thing is that they do a lot of them. The same docs probably do not do Whipples. A Whipple, a very major belly surgery involving the pancreas, gall bladder, duodenum, small bowel, gall bladder and more. All of them are general surgeons.
Shirley (had a thyroidectomy from a general surgeon who is known for doing them and liking that part of the body.)

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in reply to: thyroid and eye disease #1172280

To jageinquotation and vickrn,

I am writing to address the best way for you to get good care if you are diagnosed with TED, thyroid eye disease.

A small introduction. TED has two phases. An active, or “Hot” phase, which lasts around 9 months to 18 months. After that, there is the inactive, or “cold” phase. All surgical correction is generally done in the cold phase, with the exception of optic neuropathy, which is pressure on the optic nerve. If that happens in the active phase, blindness can result, so and OD most be done to relieve pressure on the optic nerve.

It also can be mild, moderate or severe. I looked at about 20 articles before I began to write this post, and the following one is the one I think is the most helpful for someone who is just beginning to learn about their TED. I was going to write all it myself, but the post would be too long.
This is pretty good.
http://www.bopss.org/page.php?edi_id=534

In summary, there are three degrees of the severity of TED. Mild, moderate and severe.
From what I have learned from having TED many, many decades after i had Graves, it is critical for you both to go to doctors who are ophthalmologist to manage this very long, and very frustrating and painful disease, depending on the degree that you have. TED can occur anytime, with any degree of involvement. You can see from all the stuff that I have listed at the end of my post that it has been hellish for me, and I had severe TED. My active phase lasted almost a year. But I did have to have emergency surgery for optic neuropathy in the active phase, for I was losing vision.

In my TED experience:
Endocrinologists do not manage TED.
Oculoplastic surgeons do not manage either Graves’ or TED.

After TED has run its’ active phase, surgeries can be done to help double , vision (strabismus surgery, usually done by a pediatric eye surgeon) proptosis, or bulging eyes (done by oculofacial surgeons who are familiar with TED, and do orbital decompressions, OD for short. They also do eyelid surgery, for our retracted upper and lower eyelids.

Vickirn, I really cannot imagine your oculoplastic eye surgeon telling you to have a thyroidectomy. That sounds very very strange. Can you get a 2nd opinion of this? It isn’t even their field. Maybe it is not his field SO MUCH, that he does not realize that people can have TED with or without Graves’. Of course, most TED does occur to patients who have had GRaves’. I have been dealing with TED for almost 3 years now.
My endocrinologist manages my Graves’ and thyroid supplement. But certainly not TED. My eye docs managed TED, varied eye surgeons did the surgeries, but other than ordering antibodies at the very beginning of TED (which really does not contribute all to the treatment of tED) I never had lab work.

Of course it makes perfect sense to be euthryoid, not hyper and hypo, for that is the goal of treatment of Graves’.
There still is a lot of confusion of the pathophysiology of TED. At this time, most scholarly articles conclude with the statement that much more research needs to be done regarding the proteins that antibodies may attack, and also the treatment. Some researchers hypothesize that the antibodies may be the same for Graves’ and TED, but the proteins may be different. We really don’t know and they don’t either.

1. It is essential that you go to an eye doctor that is familiar with TED. My strong suggestion is that you see a neuro opthalmologist, and continue to be followed by this doc over the course of the active phase of the disease.
2. Two important points to remember, is that corrective surgery of any kind needs to be done in the INACTIVE, or cold phase. Except for optic neuropathy. The doc mentioned in #1 is the doc who tests for this.
3. Sometimes, in the active phase, you can see the strabismus surgeon, who may want to try prisms for your double vision. I know they have helped others, but they did not help me. They will give you temporary ones to put on your glasses (after testing your double vision) to see if they help.

The big reason surgery cannot be done in the active phase, is that all these surgeries depend on constant measurements, so the surgeons know how to correct all these things, double vision, bulging eyes, retracted eyelids. , During the active phase, measurements, and your eyes, are constantly changing.

I had it all, and it has been very very difficult. Extreme sensitivity to light, dry eyes, eyes that won’t close at night cause of proptosis and retracted eyelids, double vision that made me crazy, optic neuropathy, painful to move eyes, blah blah and blah.

I am sorry you both have the diagnosis of TED. Treat the symptoms with drops and lubricant, and have continuing care from eye docs who understand TED very well. My main guy was the neuro-opthalmologist.

As you know, I am “just” another patient. But I sure remember how I felt at the beginning of TED.
Shirley

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in reply to: Thyroid Surgery #1172335

Hi, Stephanie, welcome to this great forum.
in the meantime, use the search engine on the forum, write
“surgery” or thyroidectomy. There are some great discussions what it is like, from pre op to post op. I have recently written about my experience, covering how I felt, when I went back to work, pain,(very little) etc etc. No complications. Also, lhc11, or lch11, I can never remember which one it is, but I think it is the first one, wrote great posts about her recent experience with her surgery. Then you will have something to read and ask questions about before June 15 when Alexis has hers!
Shirley

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in reply to: Not Stabilizing on Tapazole #1172269

Yep. That is hyper world! You are on some beta blockers now, aren’t you? Just want to be sure that you are, and be equally sure that you are not marching around your world with a heart rate that fast! (:
Shirley

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in reply to: Not Stabilizing on Tapazole #1172267

I forgot to say that I am a fellow patient, not a medical type person. This is what I have learned from my docs (plus working in an OR in a hospital for many years…)

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in reply to: Not Stabilizing on Tapazole #1172266

With uncontrolled hyperthyroidism with all the serious symptoms, and/or thyroid storm, the symptoms are treated. Surgery is not done. It is not indicated. Metabolic systems, electrolytes, cardiac management, O2, plus a careful administration of ATD with the proper timing, and sometimes Lugol’s (KI or potassium Iodide)
So, TT is not the reason for emergent situations. Generally, TT’s can be planned, with the proper prep of Lugol’s solution 7-10 days pre-op.
A TT can be done when if labs show you are hyper, but if you cardiac status and BP are ok, plus a surgeon’s careful evaluation.
Of course it is optimal to take ATD’s before surgery OR RAI that is the goal to decrease the amount of thyroid hormone racing around. This is what is usually done.
Good question to check out with your surgeon.
VanIslegal, what are your symptoms?
Shirley

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in reply to: Okay. What would you do? #1172224

whee!!! Good plan. So glad it has been born. All your decisions sound like the very best ones.
Shirley

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in reply to: radioactive iodine or not help please #1172249

Hi stacylee,
your post is not long! (:
Alexis gave you some things to think about. If you use the search engine on this site, you will see that when we have a choice, and we usually do, we make a decision sooner or later. Clearly, ATD’s are not your option. Sounds like you have chosen RAI. And also seems that you may have read some unreliable websites for your other concerns. I think your concerns for developing cancer or leukemia are not justified. I suggest if you want to research it yourself, put the words “evidenced based studies, RAI and cancer, and RAI and leukemia. I do not think you find valid evidence for either one of your concerns. Although I chose surgery, RAI is done all the time in the US, very successfully.

Basically, RAI is a TREATMENT for thyroid cancer, not a cause.
Kimberly will probably read this, and may have some ready references for you.
I also suggest making an appointment with the nuclear med department, and/or a radiology doc who is the doc who administers RAI.
Shirley

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in reply to: shoulder post op and graves #1172182

RSD is something that is quite disturbing to read about, think about or have.
i think you realize that this is not a syndrome you or anyone else will consider with you, but I would hate to have you use any energy thinking about it. It is very rare, with no treatment and intractable pain.
Shirley

Nerves do get pushed and bumped during surgery sometimes. I hope the “tincture of time” plus careful PT and medical attention will make this a non issue for you!
Shirley

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in reply to: Okay. What would you do? #1172221

Hi Alexis
I am pretty sure that the dose of thyroid replacement is not related to height and weight. Or at least I have never heard of that being considered when deciding the replacement hormone amount. It is determined by your labs, TSH, T3 and T4, plus how you feel and your symptoms. Probably the normal dose is dependent on that, plus I think most docs prefer to begin with a lower dose to see what your body requires.
I have heard of some docs who begin replacement within a week of the surgery.
One important thing to remember, is that an endo , internist or sometimes a family practice doc, manage your thyroid hormone dose going forward. Not the surgeon. They pretty much disappear out of your life after post op checks.
I think the most important thing for you to know, is which doc is doing the labs and deciding on replacement hormone, after your surgery. The surgeon is most interested in the surgical post op part of you. I am guessing your endo may be the person.

Re the decision of which thyroid hormone replacement to take, i think it is your choice. I chose Synthroid. It is definitely the most expensive for me, for my insurance prefers that I take the generic. I am sure it is fine, too. Consistency over time is the most important thing. That means taking it with a glass of water first thing in the morning, waiting 1/2 hour to eat, not taking supplements and vitamins (if you take them) for four hours after, and being patient about having labs. When replacement is started, it takes a while for the labs to reflect what is going on. From that time on, until you are regulated and back to your normal world, labs should be done at least 6 weeks (a little early) to 3 months.
Things need to be consistent to make good decisions.

I’d go with the surgeon you feel comfortable with, combined with how many thyroidectomies they routinely do. Then go for it!
Shirley

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