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in reply to: Diagnosed @ 49 y/o #1179180

Boomer.
I can’t play this RAI game with you, cause I had a TT. I am the kid standing at the edge of the playground, watching all the RAI’s on the merry go round.
BUT WAIT!!! There are a whole BUNCH of kids over by the kickball field, all with cool scarves around their necks!!! JUST LIKE MINE!!!

How wonderful that TT/ers, RAI’ers and ATD’ers, are all such good friends, sharing this very questionable honor of being Graves’ers!

Karen.
I honor your thoughts about weight, because it clearly is important to you. But it is a thing that your doctor said, “you don’t realize how sick you were.”
That is important to remember and understand, and I am sure that you do and will.

As you know, there are some very dishonorable sites on the net that appeal to people who want to lose weight, and taking thyroid hormone is what they pitch and sell. It is a horrible thing to do, and people have DIED from doing this.

Karen, You are NOT asking, but just to review, because this is really important to you. And it is a good reminder to myself, and to others who are reading the thread. I know you know the other variables that continue to weight gain, and wait maintenance. Move more, eat less, eat properly, no nighttime eating, watch the empty filled alcohol calories.
Our whole society of sitting our respective national butts, not always our choice at all, with sedentary jobs at computers, decreased chances to have to walk as a means of transportation….TV, Games on phone and phone, all of this contributes to our national endemic and epidemic weight gain in our population. Oh. I forgot. Being female, and approaching menopause, and afterward, is another variable. My daughter, who is 48, found 4-8 pounds of added weight just HAPPENED at that time. She had done two things to make it go away. Stop nighttime eating (definitely seemed to be a factor, for usually carbs) and she started jog/running most mornings for about 15 minutes. she lives in So Calf. near Pasadena, so her weather almost always works for this. When she started, she was terribly out of shape, could not even run at all. So that is what she does to maintain.

Of note, I am remembering when you told us your heart rate was 180!!!!
In the hospital, this would be a medical emergency, and we would be concerned about your life! SO GLAD you got the good management for that, the good diagnosis of Graves’, and that you are moving toward OK now!!!
Shirley

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in reply to: Brief check-in #1180130

Amy. I am so sorry. It is a terrible feeling. Have had it.
Gonna be NOT when get back to Seattle.
Find a cool place, watch some SNL, get your labs checked, then you will be “back.” It does sound like a hypo feeling. Although, After all the crap we go through, I think sometimes, when we are supposed to see the light at the end of the tunnel, we really don’t believe it! It’s still shining, just right around that corner!!!
Shirley

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in reply to: normal to have depression after TT? #1180121

I had a TT, and I had so much to do, and I did it all too soon after TT, that my experience is not very helpful, too much other stuff going on. (Back to work too soon, new baby, post TT, breast feeding, disinterested husband, to mention a few!~) I did not feel depressed, I don’t think, but I did feel a bit of a letdown. Being hyper had been SO STRESSFUL! And I had a hard time believing that I might actually be a normal person again soon. I had a short time of dipping into hyPO, and found that was (really!) just as bad as being hyper, just different. Felt like a slug, hard to get out of bed, constipated, and all the other hyPO symptoms. So I think I did find the post TT period both stressful and depressing. But not an acute depression. Just kind of sad, that all of this was happening to me at the age of 24. I felt it was not fair.
Not sure this helps!
Shirley

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in reply to: Break-neck speed? #1180091

Hi Barbra,
Your recent post is reassuring. I think most of the comments from your initial post were based on concern that things were moving very fast, and we wanted to be sure you felt content about the decision for treatment. It sounds you are fine with it. That is what matters.

Welcome (soon) to the decade I’m already in! It’s ok to fine, depending on the day!
Just like most other decades! (:

I suggest to you that you may find that the dosage of meds after RAI, may not easier, because you have had an RAI. As a matter of fact, it may take longer, for RAI simply takes longer, several months, post RAI for your thyroid gland to “shut down” so the thyroid hormone dose can be regulated for you. After a TT, the gland is gone-right then, and managing meds after TT really is much faster. That is why women who want to conceive, may choose TT over RAI for this reason.

I hate to have you have unrealistic expectations in this area, so this is a good conversation for you to have with your endo.

Getting to that “sweet spot” with thyroid replacement hormone, can take more time than you might expect.
And soon, you will have your own experience that you can share.

I am sorry you and your husband had the prolonged time with stomach cancer. It is terrible, as most cancers are. And I am sorry for your loss.
As someone who has worked in health care for over five decades, much of it in oncology, I have an idea of what it was like for both of you. Plus, I have have had five malignant cancers, with tons and tons and tons of chemo and radiation. So I really do “get it.”

The BEST of luck with the next week. Soon you can have bacon again! ANd it will be time for a BLT, one of my favorite Iowa midwest memories!
Do write as you march through you Graves’ world, all of your new friends on this forum are right there with you, cheering you on.
Shirley

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in reply to: Diagnosed @ 49 y/o #1179168

Hi Boomer! From a TT’er, to an RAI’er, welcome to the next phase of Graves’ fun. It was so thorough of your doc to remind you not to breastfeed! I like your endo, too, because you like him. I am sure he looks forward to your visits!!!

Glad you are progressing post RAI. I suggest if you really begin to feel “wonky” between now and when you have your labs, do call, report it, and try to get through the delightful cadre’ of employees, to get your report to the endo!

i’m thinking the endo would really LIKE to know what is going on in his office.
Especially from you, for you now have a relationship with him, and I think he would respect what you told him. If this were in a hospital, an “incident report” or similar phrase, would be submitted to risk management, and the employee would be counseled and warned, or possibly terminated, depending on the rest of her/his work record. The attitude and F bomb are really unacceptable. there are plenty of people looking for work who would not have this behavior, and represent this nice endo the way he would like his office (and him) to be represented. Relationships matter, so I know your Boomer-self will give him enough time to fact find, and remediate office issues. Believe me, an endo who cares, who actually “takes” Graves’ patients, and is interested in us, is hard to find. so don’t toss him out too quickly!!
YOur comment (following) is “money in the bank,” regarding your Graves’ health care! Some of us have gone to MANY endos, trying to find what you found with the first endo!
Boomer
“I feel like I got lucky with my Endo- he was attentive, interested in me, communicated great, and respected my input.”

Re the wrong RX. Several things wrong there! When you called for a refill of the RX, the next step is for her to look at your CHART! duh. Of course, to swear, show the attitude she exhibited, and certainly dropping the F bomb, is unforgivable. I do have a couple questions, simply because I have worked in this health care arena for multiple decades. 1. Was the bottle labeled correctly? 2. Do you know what drug WAS in the bottle?
I am asking this, for if the bottle were labeled correctly, with with correct name and dose, it is possible the error was in the pharmacy.
But it does not sound like this is the case.

The lab work situation. I do what you tried to do. I ask for the hard copy at the time, and if they say they will call it in or send it electronically, if I am right there, I ask for a hard copy. You were already anticipating trouble,and that is what happened. So when you have your chat with your endo, prepare him for you interest in having a hard copy for the reason you explained.
Of interested, I now see my endo every 3-6 months. When I see him, I always ask for the hard copy, it is easy for him to do, then I HAVE IT! Perhaps, in several decades, all will go well electronically. But we are in the baby stage of paper records,electronic records, I want my paperwork!! Nothing wrong with that.

Continuing on the telephone/electronic/subject, the name misspelling is just silly, the way it escalated. AGain, I am not sure if the uptake person was trying to find you, and could not, either electronically or any other way, but it is a bit of a puzzle that such a simple call from one health provider to another, can get so screwed up, when asking for a spelling clarification. Wow.

YOu may get some further advice for others in this thread on this forum.
Shirley

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in reply to: Break-neck speed? #1180087

Agree with Sue. YOu have time. This is not an emergency. Everything she said is right on, and well said.
Shirley

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in reply to: Tapazole allergy #1180064

Kimberly is correct, of course. I was thinking of PTU. Typing too fast, thinking too slowly! Sorry.
Shirley

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in reply to: Tapazole allergy #1180062

Good question to ask a pharmacist. How do they differ?

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in reply to: Tapazole allergy #1180061

Nope. Both ATD’s but chemically a bit different. I am guessing possibly some ingredient in one, is not in the other, and the rash is related.
But did not bother to look it up chemically before I wrote this.
Shirley

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in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179642

Karen!
Nice to know! That YOU know! Reassuring.

Sue/Zoo. I think I am safe in saying that TT is not related to “getting” TED.
Karen is “just” getting everything over ALL AT ONCE! Ha.Instead of waiting 50 years, never thinking for a MINUTE about TED, and having it hit me big time.
Shirley

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in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179639

Hi Karen,
Glad you went re eyes.
I suggest that you tell them to wait to grind the prisms in your glasses. It will save you a ton of money, if the temporary ones don’t work. Or, you will spend a ton of money to find that the prisms in the glasses don’t help your double vision.
I am telling you several things I believe you should have been.
1. In addition to the above, the temporary prisms are kind of blurry. You should expect that.

2. Also, I think it should have been explained to you that your brains is the one who will get used to the prisms, and it takes at least 6 weeks minimum for you to know if they are helping.

3. I think I mentioned this before, but if your eyes are still changing, and not “stable” the strabismus surgery may help you at that moment for a short time, but if the muscles fibrose and change again, you most likely will have double vision again.

Gee. I wish someone had told me all these things.
I encourage you to check with your eye doc on all these thing!!
Shirley

Re your thyroid, I suggest that if you begin to feel more hyPO or more hyped symptoms, you call the endo and report it. You are pretty unstable right now, and six weeks is a long time for labs, I’m thinkin’

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in reply to: Break-neck speed? #1180083

Welcome to this wonderful forum.

WOW! YOu are moving right along!
Sounds like everything is pretty squared away. If you are comfortable with the decisions and procedure, and it sounds like you are, that is great.

I am suggesting that you begin to keep track of your labs, begin to understand them. You did not say how you were feeling, or are feeling now. Must be better?

Everyone here has chosen one of the three choices for treatment, RAI (radioactive iodine, continuing on ATD’s (antithyroid drugs) or surgery TT (total thyroidectomy.

Absolutely, do continue to write. We will all be your new best friends!
Sooner or later, you will have some questions, and/or be able to help someone else!

I wish for you that the next few days go fast! Bet they will! You sound very prepared and informed.
Best,
Shirley

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in reply to: Surgery vs. Iodine #1180002

Hi Tina,
As you have read on this thread, opinions about everything are all over the map. In almost all people, all the choices mentioned by Kimberly, and experienced by the rest of us, are good choices.

I think the most important thing is that this deadline of a month is not sealed in cement. There are rare instances when a deadline and urgency is really required in health care. Take the time you need to feel very content about the decision YOU make.

I encourage you to continue to express your choice of continuing on ATD’s.
This includes a consideration of getting a second opinion. If you read “old” studies, they will say what your doctor said. However, this is changing, as evidenced by Kimberly being on ATD’s for over 6 years, and by others. I am not sure, but I think Kimberly can reference some data for you that shows that the longer you are on ATD’s, the incidence of remission increases.

The most important thing is, the choice really is yours, given all other factors being equal. I suggest your read the recent posts of people who have had TT, to get a balanced views, plus the references on this site. I chose a TT.
There are advantages and disadvantages, mostly from a personal preference, to each treatment. Including you own feelings, and the availability an experience surgeon for a TT, plus the relevance if a woman is wanting to get pregnant. For the waiting time is a lot longer with RAI.

Another question I would explore more, is the fact that your gland is enlarged. Maybe that is a good reason to consider TT, if you really do go off ATD’s.
Welcome to the forum. It is great.
Shirley

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in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179637

Talley,

I like your idea of waiting until you go home, and go to Kellogg.
You’ll need to do the best you can to try to differentiate the dry eyes and hurting, related to the altitude and humidity. But I think I understand that you have been living there, and this is a change. Corneas hate to be dry, so I encourage you to use preservative free eye drops.

I hope the double visions clears, too!!!!!!!!
Shirley
I don’t think people with mild TED write much. They have dry eyes, a little light sensitivity, and that is it. Not sure how much or if any of those symptoms resolve, or they just get used to the “new normal” (not funny) and buy eye drops and sun glasses.

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in reply to: question – post TT & hot flashes, nausea #1180068

I have to think the nausea is anesthesia related? You might ask the surgeon if the location of the tumor, and subsequent removal, could have any relationship to your nausea.

Generally, I have my hand wrapped around a cup of coffee about 20 minutes after I take my Synthroid. sometimes longer, but not much. I have never waited an hour. But I have been consistent over time for years and years, so it is pretty much comparing apples to apples.

I have not heard of Synthroid causing nausea.

I am SO GLAD you have an appointment on Wednesday. This nausea feeling is terrible! I sure am sorry.
Shirley

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