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in reply to: Finally scheduled for OD surgery! #1183045

Having 2 eyes done at once, is pretty darned depended on how severe Ted is, and how many walls are done on each eye. I don’t think many docs do both at once. I remember when gatorgirly had this done, but need to ask her again the severity of her TED. I needed help and support for the first week with one eye but i live by myself. Shopping, cooking, bending over, laundry, were all things that I could not do.
Shirley

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in reply to: Graves and now period of a fib #1183032

To Stacy,
Yes, that is exactly what it sounded like to me. No big deal. But with your prior stated diagnosis of a fib, I was trying to address that.
Keep track of your pulse now and then. My description of a fib in my post is very dissimilar to PVT. That’s “just” a racing heart, that then reverts to NSR, normal sinus rhythm. Glad you saw him, glad he said that. He is probably right, based on a one minute episode of a fast heart rate.
Shirley

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in reply to: Graves and now period of a fib #1183028

Rate-one more thing…it can be like a clock going haywire, and beating REALLY REALLY FAST! Like 120-170 ticks (beats) per minute.

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in reply to: Graves and now period of a fib #1183027

Stacy, here is a quick review of what happens with afib.
The rate (# beats per minute) and the rhythm (regular or irregular) define and determine afib It can be intermittent, or all the time. Sometimes, it can bee seen on an EKG when the patient notices that their heart rate is different. Other times, since people go “in and out” of afib, cardiologists have us wear a Holter monitor or another kind of monitor to record everything about the heart for a couple days, or sometimes a week or 10days, to see any patterns emerging.

Atrial fibrillation occurs when the upper chambers of the heart, or atria, fibrillate. This means that they beat very rapidly and irregularly. Blood is not pumped efficiently to the rest of the body which may cause you to feel weak or tired, or to experience uncomfortable heart sensations like a racing or irregular heartbeat.

The risks happen, cause the blood may pool, or sit at the bottom of the ventricle, the lower chambers of the heart. If it sits there, it can have the possibility of clotting. Then, if there is a good strong beat of the ventricle, it can send a clot surging through the vascular system, and potentially “block” an artery, resulting in a stroke (depending nowhere the vessel is located)but that would be true if it were in the head, and that is where the vessels get smaller.

So, in summary, it is the RATE (how fast the heart beats) and as you know, it is usually pretty regular, like a clock ticking. and the RHYTHM, which is usually steady, also like the ticking of a clock. An irregular rhythm would be like:
beat, beat, beat, pause…..beatbeatbeatbeat (maybe super fast)…….then beat, beat……..pause pause, beat/beat/beat/beat all in a row, and maybe not very strong beats.

It needs to be treated. There are several ways. First step is usually to anti coagulate, so that no clots will form. Part of the treatment is to take drugs that controls the rate and rhythm. The old stand by anticoagulant for afib is warfarin (Coumadin) it has been around for over six decades, maybe more. It does what it says it is, an anticoagulant. Makes your blood “thinner” thus less likely to throw a clot. Labs are required with this med, for your labs need to be within a certain anti coagulate range. Yet not to high and not too low.
Just like the three little pigs!
The disadvantage of this drug is the vigilance of the labs required, along with the dose changes based on those labs, so you have to have blood draws. The biggest advantage is that there is a reversal agent for this drug, if you have a lot of bleeding somewhere that won’t stop (cause you are anti coagulated)
The reversal agent is vitamin K.

There are newer set of drugs for a fib, and they require no labs. They are all about 3-5 years old now. The trials look good, but they have not been on the market very long. The big downside is that there is no reversal agent if you have a big bleed. There is a reversal agent for warfarin (Coumadin)

In summary and simplicity, with a fib, the risk of a fib is clotting in a vessel, causing a thrombotic (clot) stroke. To keep us safe from that , our blood needs to be “thinner” or anti coagulated, more than folks who don’t have a fib (like I did not have all the rest of my life until last summer)

When we are treated, the other risk is bleeding, or possibly having a hemorrhagic stroke, or a big GI (stomach or somewhere else ) bleed. If that happens when on warfarin the docs can give Vitamin K which is a clotting agent-like drug.

I believe the studies are saying that there are more GI bleeds with the newer drugs, and they are also UBER more expensive. More and more docs are going to the new anticoagulants. I am sticking with warfarin, till there are more good studies, and the new drugs have been out for a long time It is entirely possible that your cardiologist will explain the pros and cons of both treatments.

But for sure, a fib needs to be treated, not ignored, and the incidence of stroke is much higher in untreated a fib.

Do write after your appt with the cardiologist, maybe even print my post.
And, the usual reminder, we are just folks with Graves’ and/or TED or both, not giving medical advice, just our own experiences. Hope to hear from you soon. YOU WILL BE FINE. I AM FINE!!!! (: AND I FEEL VERY SAFE AND CARED FOR. But you definitely need a cardiologist in your world now.
Shirley

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in reply to: Graves and now period of a fib #1183022

yep, I have afib, developed it last year. I am too tired to write tonight, but good you are seeing a cardiologist. can be treated, and there are things to think about in that arena. I’ll write tomorrow sometime.
Shirley

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in reply to: Severity of Graves’ disease #1182969

Agree with Kimberly. Symptoms plus labs. If you feel hyper, and your labs “say” you aren’t, that does not mean you are “wrong.”

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in reply to: Yikes! The OD is scheduled #1182946

My experience is that, when you notice there have not been further changes in your eyes, subjectively or by exam, you are good to go with surgical procedures. If they are changing, i.e., bulging more, hurting more, the measurements they take, especially for strabismus surgery will not be accurate. And if they do an OD, and the muscles continue to harden and enlarge, your eyes will again bulge, for that is the only way they have to go when things get crowded…is OUT!
Shirley

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in reply to: Anyone tried Rituxan(Rituximab)? #1182954

Yes. I did. No improvement, no change. I am aware that it is one of the treatments that docs hope might help severe TED. It is expensive, and you pretty much need to get in a study if that is any issue. And, of course, it has some concerning side effects.
I was willing to try most things, none really helped, except prednisone to relieve the pressure on my optic nerve until I could have an OD.
TED is hard.

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in reply to: Yikes! The OD is scheduled #1182943

I am wondering if the exams the nurse did, show the indications and changes that prompted the doc to decide to do the OD. I imagine that was reported to the surgeon, he pressed on your eyes, may have encountered more resistance than before,and decided it was time to do the OD. I know we have corresponded before, but I don’t recall the time frames. I know you have been super miserable. it is absolutely true, what the strabismus doc said, they need “room” to move the muscles. That room is made by making the orbit larger, so the eye goes back where it is supposed to be.

IT is not uncommon for the ENT surgeon to do the nasal side, I would be happy (and I was) about that, it is “their” territory, the oculo facial surgeons are leaning toward this more and more. And they do the superior, inferior, and lateral sides. But the make the decisions based on CT scans, and they are also doing a CT during the surgery. I was HAPPY to have the ENT surgeon do the nasal side.

Yes, it is kinda “like” sinus surgery, but I think much easier, cause for OD, you don’t have your nose packed, which always occurs during sinus surgery. People hate that.

Yes, of course it is a challenge to find a compatible date. Not a bit unusual, other than I am surprised they found a date so soon for you. Lucky you.
Just think of trying to find a time and day when 3 friends are available at the same time! O.R. schedules are planned waaaay out! People need to arrange work with their jobs, care for kids, blah blah. And, maybe not early because of staff and doc vacations, kids are back in school then.

I’d be precautionary, though with exercise, I’d wait more than a week. Lots of stuff done in there.

ENT did USED to be EENT, years ago,then the first “E” branched out!

The OD IS the signal procedure that means you can move ahead with strabismus surgery, which I have said before that gave me my “LIFE
back. You have to heal for one before you have the next one, the measurements need to be accurate. Then it takes a bit of time to get glasses (if you wear them) but you will notice the SINGLE VISION right away, at least most people do.

I think a realistic recovery time for an OD is at least 2 weeks to go back to work full time, and you need help for the first week, there are lots of posts, including mine, about how I handled post op are and what worked and my suggestions.

And, if you are really freaked about moving forward, and don’t want to do this, then postpone it until YOU are ready. I was so very ready, cause it was moving on to single vision.
Shirley

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in reply to: TED and treatments? #1182951

Hi, I may be telling you things you already know. especially regarding which doc is the right doc to evaluate your eyes.
1. I am assuming you got the diagnosis of Graves’ based on how you felt, and your labs. If you feel good, “like your old self, pretty much” it seems that you want to continue with your endo, having thyroid labs and liver function labs. That is on of the treatments for Graves’ and that is fine! If you become HYPER, and the ATD’s do not seem to help you, Kimberly has done a nice job of listing your three choices.

2. I am guessing that when you mention steroids, you are referring to your eye symptoms. There is a certain reason for using steroids for TED (thyroid eye disease) and it is usually this one reason. That your eyes and more precisely, the eye muscles, are pressing more and more on your optic nerve. This CAN result in being permanently blind. MOST people with TED do not have that problem (I did, but I had severe TED.) Most people have mild or moderate TED. *** The doctor who should be talking to you about your eyes, should be a good ophthalmologist (not optician ) or even more preferable, a neuro-ophthalmologist, if you have one in your area The ophthalmologist should have had experiences with TED and TED patient.
Oh yes, TED, is thyroid eye disease.

Endocrinologist are not the docs to diagnose it or treat it, or even talk much about it. They don’t “do” TED.

3. Either your eyes will, or will not, get worse. Who the heck knows? Generally, TED “lasts” between 1-2 years before your eyes are stable (stop changing.)

The size of the thyroid is not tiny. Here is a good reference to take a look. If you click “parathyroids” on the left hand side of the page, you will see where they are located. They ARE small, and sit on the thyroid gland.
http://www.innerbody.com/image/endo04.html

I suspect your long term doc is not a general surgeon who “does” at least 50 or more thyroidectomies a year. This is the surgeon whom you would want to do your thyroid surgery, if you ever had it done.

But, maybe you are thinking about eye surgery/probably so. The
“right” docs to several different procedures depending on your symptoms are:
a. For decreasing vision-an oculofacial surgeon and sometimes an ENT doc along with that doc. This is a more complex procedure
b. For double vision-usually a pediatric surgeon is best. They do a lot of this surgery on kids. This is a simple surgery.
c. eyelid surgery is usually done last, or it is a waste of time. your eyes need to be as “bulgy” as they are going to get, cause the bulging is what causes the lids to be UP and DOWN.

In my opinion, I cannot agree with the doc who said with surgery–are their eferring to thyroid surgery???that your immune system won’t continue it attacks. Graves’ is an autoimmune disease.

With the usual caveat, I am speaking from my own experience with Graves and TED, incidentally, you will see that I got thyroid eye disease almost 50 years after I had Graves. And my antibodies have always been elevated, and have never changed. Treatment is based on thyroid labs and liver labs.
ok..that is it for now.

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in reply to: RAI vs Surgery #1182901

To WWW12
It’s entirely up to you to decide what you want, unless there is a huge compelling medical reason guiding you one way or the other.
I don’t understand why your endo is so adamant. Maybe that is his/her comfort level. But they don’t do either RAI or TT. It is your thyroid, not theirs!!!

I had a sub total Thyroidectomy. They left a bit of thyroid gland, so no need for Sythroid for many years. Now I take it. . SO happy with it. That was done at the time, now they to a TT. I’d have no interest at all in RAI. I would not have had one. My surgery was so long ago, RAI was just a baby at that time, nobody knew much about it.

Sometimes, endos take a residency in internal medicine, but there might not have been surgeons who did TT’s. It’s my opinion that you should be presented with three options, you decide. Don’t do something because you feel a “should,” or an “ought.” You own the decision.
Shirley

Kimberly’s thoughts are very helpful to you, I think.
Shirley

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in reply to: Eyelid Surgery #1182911

I would LOVE to continue to stay in contact! I’ll be traveling, flying the next couple days. Will writ again on Monday.
Shirley

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in reply to: Eyelid Surgery #1182909

Hi, not sure which procedures you have had. Wanna take the time to list them?? You can see my lengthy list at the bottom of my post, and I think I omitted a couple. It has been my sad experience with eyelids, that the more they try to “fix” the problem, the more scar tissue there is. But the inability to close you eye may not be related to your eyelids AT ALL, but to your bulging (exopthalmus) eye. Has this been considered, discussed, etc. etc?

I have ordered the products Kimberly mentioned, ordered all of them, they did not help me. I got them from the Dry Eye Zone, located in Poulsbo, Washington. Ir returned them all, for the purpose of donating them to someone else. You might find the site, see if she has done that,save yourself $100+.

The ONLY thing I do that helps, is tape my right eye closed at night. Should be both of them, but the right eye is much worse. The ONLY tape I have found for this delicate job is Mepitape, I order it online.

The beginning corneal damage is a very real problem, and sets you up for a corneal transplant, which won’t help at all, because you can’t close your eye!!!

I also tried Saran, which seems to have worked for others, but definitely not for me.

Please do write again!
Shirley

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in reply to: One week post TT and overmedicated w/Synthroid #1182916

I imagine you have heard from a caregiver by now. I do wonder, if you did have a parathyroidectomy if you know how many parathyroids were removed. You need to be followed VERY closely for this situation as well, until you fully understand the surgical procedure, and what it means to you. Generally, they are not removed with a routine thyroidectomy, but carefully avoided, so can remain in place. Just wanted to mention this. I am sure you are on top of all this, but want to be sure!
Do write again, hope you do feel better when your Synthroid dose is regulated for special you! Your symptoms are hyper symptoms, and although there is not much thyroid hormone left to circulate after thyroid removal, there IS some for a few days, so that may have been what has been happening to you, and why you are having the experiences you are having.
Shirley

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in reply to: Question about Armour dosing #1182887

Hi, I am glad you are getting a second opinion. I am very glad you found an endo who is familiar with Graves’. So many of them are much more familiar with diabetes.

What IS your allergic reaction the acacia in Synthroid? Would you be willing to try it again? Seems you have done a lot of thinking and research about all of this. I am so sorry you are having these issues.

My endo at the Univ. of Washington in Seattle said that he’ll prescribe T3 and T4 if the patient really wants to try it. BUT he also said that to dose properly the T3 needs to be taken more than once a day. I don’t recall if it were twice or three times. This is because of its’ short half life. The reason I am saying this, is because this is an excellent question when you visit the endo at Mayo.

You have been on four different thyroid supplements since your RAI in December, so I encourage you to also discuss this with the new endo. I did not have RAI, but my understanding is that it takes quite a while (as opposed to a thyroidectomy) for the thyroid gland to “die.” Another thing to discuss is the possibility that the RAI dose was not enough?

It also occurred to me to wonder how long you wait before you get your labs after a dose or med change? It takes a long time for the lab to reflect the true story. And of course how you feel is paramount. Generally, my endo says 2-3 months, not before.

Your symptoms ARE kind of weird, for some really do not reflect a relationship with thyroid issues at all. Except for the brain fog, and be ready to describe exactly what you mean by that on your visit. I know you don’t want to waste this visit to Mayo. So be sure to have your records, and a chronological list of dos changes, when you had labs, and associated symptoms.

again, I sure am sorry you are not bak to your “old self,” and I hope you get there really fast. Also, our bodies are complicated, so I think if you have any other issues going on that you know of, be sure to report them, too.
Shirley

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