[snelsen]

in reply to: Decrease in the medicine dose #1062276

Hi, just want to be sure we have the same understanding regarding hyPER and hyPO. Presume you do, but if so, it is a good review for me!
Hypo=sluggish, tired, hair changes, want to sleep a lot very cold, constipated, weight gain, which is compounded by no activity. TSH is HIGH, which means HYPO. THat is the part that can be confusing.

Hyper=hyper, tremors in hand/arms, very hot, fast pulse rate, voracious appetite with frequent weight loss (from having all body systems operating at warp and unhealthy speed,) anxious, unable to sleep, tends to never stop.
TSH is LOW, which means HYPER! So, it does not mean that you don’t feel tired when you are hyper, but that is not usually typical of hyper, in my experience. Although, after so many sleepless nights,I did feel tired, so that may be your situation.

If you have been on Synthroid (or some other brand) for 15 years, have you been having your labs checked now and then?
So because you felt good most of that time, I am assuming you were euthroid. THat makes wonder why your treatment recently has been an ATD? Did you become hyper because you were taking too much hormone? Could that be the answer to everything? Clearly, I am just thinking (or writing) out loud. But usually, the trajectory is not to be on Synthroid for a number of years, then consider RAI or surgery. Generally, it is take ADT’s to get out of the dangerous hyper state, then decide whether to do ADT’s, RAI or surgery. And after that, taking the right amount of Synthroid.

(I think it is a good idea to increase the Miralax. Glad you are seeing the GI doc. Most of my friends with IBS do manage their stuff with Miralax, and some add a fiber. Constipation can make you feel terrible. ie, sluggish, discouraged and no appetite (no room for any more food!)
shirley

[snelsen]

in reply to: Decrease in the medicine dose #1062273

I am writing to ask if constipation is still a problem for you. People can feel terrible when they are constipated. If it has not been resolved, I suggest taking some action on that issue with a Fleets’ enema, and consider taking some Miralax (over the counter) on a short term basis. It helps retain fluid in the bowel. I am writing from my own experience, which worked for me. Shirley

[snelsen]

in reply to: question about rai/surgery and weight gain #1062281

Good processing! You will be fine. I strongly suggest that you put both RAI and "surgery" or "thyroidectomy" in the search box.
As you read the decision process of others, i think you will feel very reassured that once you make a choice, much anxiety will be relieved, and you will begin to look happily forward to healing and getting your life back. Unfortunately, everything Graves’ moves much more slowly that we like!

I had surgery, there are many recent posts on surgery. I think several of my posts are there. You might also put "anesthesia" in the search box. In my job world, as well as my personal experience with anesthesia, I can assure you that anesthesia is pretty wonderful. It is very routine to medicate pre-op and intra-op for nausea, which, for this surgery, is a non-issue in any case. It is a short surgery, usually less than an hour. If you feel apprehensive on the day of surgery, you can be medicated for that. Tell the anesthesiologist what you are concerned about, so they know. There is a wonderful drug called Versed, which is generally know as the "forgetting medicine." It helps you relax. Ask anyone who has had a colonoscopy, who did not even realize the procedure was completed! They have no memory of it at all. I think I told you in my last post that surgery seemed more fast, regarding the path of getting on a replacement thyroid dose, and back to normal.

You will find that most of us are very happy with what we chose, whatever it was. Take a look at posts from lhc11. She has had recent surgery, and describes her decision process and experience very well, and it is current.
Shirley

[snelsen]

in reply to: question about rai/surgery and weight gain #1062279

I don’t think it makes a lot of difference. Kimberly covered this subject very well. I think there probably are many of us who have never had an issue with weight and Graves’, and you don’t hear about us because it is not an issue. I am one of them. I had a thyroidectomy. Everything seemed more definitive and quicker, and that is what I wanted. Just to be back to "being me," And when we are on the right dose of replacement, that is what happens.
I guess I think that with surgery, the progression to the "sweet spot," ie, is faster than with RAI. And more definitive.

Of course the choice is yours, and there are plenty of people on this board to represent both RAI and surgery. And the usual caveats go with both choices. Choose a surgeon who does at least 50 thyroidectomies a year, preferably at a major medical center. And the same is true for the radiologists who calculate your RAI dose.

It doesn’t sound like being on an methimazole has been a great experience for you. Is it during this time that you gained the weight? I know some of the facilitators on this site, plus others, have chosen ATD’s to manage Graves’, and they are happy with it. But I don’t know if weight gain is more of an issue with ATD’s. i would think not, unless the dose is not right for the person.

I do appreciate the fact that you are working hard to lose weight. The Atkins diet is known as a method of losing weight in a short period of time, as you have done. There is a ton of research, and numerous studies about this method. So it seems like it is a good kick start for you. No matter what your choice, a healthy diet and exercise is the right way to manage weight.
After Atkins, you have lost a lot of muscle, and are in a state of ketosis, so when you begin to eat your regular diet, it will take a bit of gradual getting into shape as you regain muscle strength. But when you add exercise, walking running, etc., I suspect that weight won’t be a problem for you after you choose your treatment, and as Kimberly says, work closely with your endo when your residual circulating thyroid hormone is gone, for then you will be hypo. It is good to catch that right away, as Kimberly says. For hypo and weight gain go together for most people, I think. Again, it was not my experience, for when I was hypo I completely lost my appetite.

I actually did not realize that weight gain was a significant issue, after people got to a euthyroid state. Unless weight was always an issue. I’d say that if you were a small person in frame and weight before you got Graves’, you can get back to that state when you begin your thyroid replacement, for the whole goal of that is to make us "like we were" before Graves’.

I hope more people respond to your post who have had more experience with weight gain. And I hope when you choose your treatment plan, and get the right thyroid replacement, it will be a total non-issue.
Shirley

[snelsen]

in reply to: Over 60 years old and Cytomel #1062475

Hi Ann, I think your reasoning makes perfect sense!
Shirley

[snelsen]

in reply to: TSI Reading #1062305

Hi, that is great news! A sign of real progress. I was so happy when i was through with the active phase, ’cause it meant surgical corrections could begin.
Shirley

[snelsen]

in reply to: TSI Reading #1062303

Yes, perhaps, but to me, it seems pretty academic,and the real parameters for TED in active phase and passive phase are pretty much when the eyes stop changing, and/or getting worse, and seem to be stable. i guess if these factors are present,and it is clear I was in the cold phase, I would not care if my TSI was in the sky. I would not let it be a reason for my surgeries, especially the strabismus surgery. It was so wonderful to have that procedure.
Good to point out, though.
Shirley

[snelsen]

in reply to: First day on thyroid medication…any advice? #1062295

Hooray!!!!!
It sounds like you are getting excellent care! You may know all this already, but…
-take it on an empty stomach with a glass of water first thing in the morning.
-you can eat in 1/2 hour.
-do not take supplements or vitamins for four hours.

Then your labs will reflect what is really going on physiologically.
I think you endo is doing everything just right! Be sure to report how you are feeling to him when you have concerns. And, all of this still takes a LOT OF PATIENCE! But you are sure headed in the right direction.
Shirley

[snelsen]

in reply to: When to make the decision re RAI or more ATD #1062320

Hi Mary,
I echo Bobbi’s comments.

Glad you wrote. I have a few questions for you to add to your questions. And a comment or two.
1. What is your heart rate? This should be reported, I am wondering if you should be on a beta blocker (decreased the heart rate.) A rapid heart rate can be very concerning. And it sounds like you are on an ATD, but not anything to help you with tremors and heart rate.
2. Do you get copies of your labs and reports from your doctors?
It’s a super good idea, and you can learn what they indicate. Labs, plus how you feel, will be part of your life for the rest of your life.
3. Labs. THere is no reason why you cannot have them done locally. At certain times you need labs pretty frequently, to regulate your ATD dose. And you will always need labs, but at the end of the road of all of this, it will not be very frequently.

5 hours is a long way! But I am assuming that you live in a small community? At some point, when you decide whether to manage Graves’ with ATD’s, surgery or RAI, you probably will need to be at a major medical center for surgery or ATD’s.
If you find a good endo who is engaged, informed and cares, you can do most of it long distance, as long as you have good email or phone communication with him/her. At this point, you certainly should be much better than you are. No, this is NOT as good as it gets! Keep writing! Keep us posted, and continue to read posts.
Shirley

[snelsen]

in reply to: TSI Reading #1062300

Hi John,
From my experience with TED. Graves’ and labs, the TSI lab simply says that you’ve got autoimmune issues. The eye docs do not rely on labs at all in the treatment of TED. My docs did not make any treatment decisions based on TSI.

As you probably know, TED progressions involves and active or hot phase,and a cold phase. Surgical interventions are usually not done in the hot phase, ’cause the eyes are always changing-with the exception of when the optic nerve is being compressed,and vision is threatened (optic neuropathy.) THen and OD (orbital decompression) is done to relieve pressure on the optic nerve.

So the progression of surgeries are:
OD (if needed) strabismus surgery (moving the eye muscles to improve or eliminated double vision and resume near normal euye movements) and eyelid surgery (if needed or desired.) All my TED decisions were made by objective exams, including visual fields,and my my own subjective statements about my eyes and how they were doing (changing or not changing.)

Having said all that, I think you are referring to strabismus surgery. I was so happy to have that surgery, and I think you will be very pleased! It will probably correct your permanent downward stare. It takes 2-3 months for the muscle to heal, so like everything else with TED and graves’, instant gratification is not happening. Mine result was great the first time. It is an easy surgery and recovery. I think you will be extremely happy with the results of this surgery.

Shirley

[snelsen]

in reply to: Diagnosed 3 weeks ago…sudden vomiting and fast heart HELP #1062312

I agree with Bobbi. And the endo nurse. There is a LOT OF THIS going around. If you can find someone to write an RX for ondansetron, (Zofran is brand name) that is a great drug for nausea. I think it is also available in generic form now. THere is also a wonderful soluble (under the tongue) form for active vomiting.
You do need to watch for getting dehydrated, especially if you continue to vomit and have diarrhea Otherwise, ginger ale, Gator Aid or similar products with electrolytes, then graduate to chicken broth, rice, and take it easy. WHEN you feel you can tolerate your Graves’ meds, take’em again. I hope you can get someone else to go out and get these things for you. Your fast pulse in this instance could be from all the barfing and being volume depleted and a little bit dehydrated.

An ER trip would be indicated if your urine gets very concentrated and dark, and if you continue to be unable to keep fluids down. How are you doing now? I am in the Pacific time zone, not sure where you are, but it is 1600 here.
Shirley

[snelsen]

in reply to: Anyone had the surgery out there? #1062333

Hi Julie, look up my posts under snelsen in the search engine. Also put surgery, and/or thyroidectomy in the search engine.
Also, lhc11 (or lch11, I can never remember which it is, has some great posts.
I will write a more extensive post later on. House is full of company, so busy day.
Welcome to the boards, you will love it.
Shirley

[snelsen]

in reply to: Woke up gasping for air today…very scared! #1062421

Hi Michelle, I feel the same way. It has been such a lifesaver for me. And we will be able to help others, simply by understanding! It makes such a difference!
Shirley

[snelsen]

in reply to: Woke up gasping for air today…very scared! #1062417

Michelle, I am so so glad you called your doc and she will see you. I really do think you will get some action on this situation! And, I have had the surgery, as many others on the board, so if that is what ends up being planned for you, be grateful, and we will support you with information and our experiences.
look forward to hearing from you again soon.
Shirley

[snelsen]

in reply to: New to the Graves’ Disease Foundation #1062435

Hi Renee,
I have TED, and written a lot of posts about it. Look up my name, snelsen. Also, as Ski said, put TED in the search box. You’ll have a lot to read! My TED happened many decades after Graves’.

It sounds like you are being followed by docs who know what they are doing, both endo and neuro-opth doc. Both TEd and Graves’ are terrible stressful, and both take a long time to see the light at the end of the tunnel. But all will get better.
TED is still ruling my world, and that is why this email will be short. i just had a surgical procedure today, and I am SO ready to go to bed, even though anesthesia was only local this time.

Happy to write more some other time. You will find this site is absolutely a lifesaver, as you are having these experiences.
And it has marvelous facilitators and reliable references. I am sorry that you ended up with Graves’ and TED, sorry that I did too! The good thing is that it does sound like you have excellent docs. A must.

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