[snelsen]

in reply to: Curious about Muscle and Joint Aches After Treatment #1063138

I have not heard of that, not did I experience it. I am wondering how you know that there is no other situation that might contribute to your aches and pains of muscles and bones? If it continues, I suggest you check in with a rheumatologist, or have your primary care doc do some basic labs associated with those symptoms. I hope this whole situation resolves, goes away, so you do not have to pursue it at all!
Shirley

[snelsen]

in reply to: One month till RAI #1063170

And maybe I did not read carefully enough! So glad you wrote, and delighted you are proceeding with your plans and your excellent health care. Sounds like you have chosen good docs, and moving toward to getting this TED/HYPER part of your (and my world!) to recede in your life! Look foward to hearing from you! Glad you are supplementing the hard candy with food! (: Equally glad you hare taking pred. I have had it several times, surely not my favorite drug, but I sure had a lot of energy when I took it, but not fond of the feeling I had of feeling kind of antsy ( if that is a word.) I was on high dose of 60 mgm for a month several different times.
always helped my double vision and general vision when I was on it. I have graduated from that part of TED, though!
Shirley

[snelsen]

in reply to: SSI #1063152

I agree with all that has been said. I would like to think that the OD, and other surgeries that might follow, will result in a quality of life with TED that does not require you to walk down this complex path. I hope your TED gets much, much better!
My two years with TED has been miserable, but I do see a light at the end of the tunnel, and I can see so much better now, especially after my eye muscle surgery. Two more surgeries in 2011, and I hope to put TED, TO BED!!!
Best of luck to you.

[snelsen]

in reply to: Kidney Infection Post RAI? #1063144

Agree with Bobbi. Probably a coincidence. You can check with your regular doc about this, but I am sure they are unrelated. Be sure to take the full course of cipro, even though you feel better after you have begun the medication.
Shriey

[snelsen]

in reply to: SSI #1063149

I think I recall a few posts about Social Security on this website. You might try to put it in the search engine. I am not sure what you mean. Do you mean disability? If you have tried for a year, you have probably learned a lot about it. I don’t know much, except that I assume that it requires your doctor to agree to complete application forms. I think I know that it is more difficult to get help for a diagnosis that, according to statistics, has a good chance of getting better with a functional person, after treatment. Maybe others will write with their experience.

Pay a lot of attention to your appointment for your visual fields tomorrow. Get a copy of your last visual fields, then a copy of tomorrow. You will need to sign a form in the office, called a medical release of information, so you can have copies of your records. I am not entirely sure what you mean when you say you cannot SEE, but after reading your post several times, i think you do not mean that you are blind, but that your vision is very blurry in the operated eye? Can you see better in your other eye? Are you having one or two ODs. Ask the doc what you can expect in improvement of vision, and when?
I had an OD this year, it took a long time for the swelling to go down. That may be the reason for your problems. When they say sleep with the head of your bed up, they really mean it! It greatly reduces the swelling. I slept with my head elevated almost two months, for when i did not, my eyes were much worse. Do you have double vision?
Hope to hear from you after your appointment.
Shirley

[snelsen]

in reply to: Surgery-medicine #1063146

Hi Justine, your surgeon is doing the right thing, and practicing good medicine. The purpose of the use of Lugols’ Solution given several days before a thyroidectomy, are:
-to reduce the vascularity, which means decrease the over-blood supply of the thyroid
-it firms the thyroid tissues, makes it less boggy
-it shrinks the size of individual cells
-and some other things that advantageous to the surgery.
All of the listed things above result in having a thyroid that is in optimal condition before the thyroidectomy for the surgeon. Basically, it decreases blood loss.
So that is what Lugol’s solution does.

It should be used in the dose and for the time prescribed only. I don’t know anyone who has experienced side effects from taking these drops as prescribed. It is definitely not a drug to mess with, or for a person to decide to take on their own. It is by prescription only. If you would like more information about the drug, go to a drug store and ask to speak to a pharmacist about it.

Since I have had a thyroidectomy, I can tell you that it was a great experience. I was eating the day after the surgery. If you aren’t very hungry, don’t eat much until you are. I did make some soups ahead of time, and they were very welcome. Foods that require a ton of chewing just required the muscles to work more than i wanted them to work1 My throat was sore and tender, mostly the muscles, and that went away in a week or so. My incision is not detectable. When I show it to people, I have to point it out to them, or they don’t see it. It was a great experience.
Keep writing and tell us of your progress and concerns
Shirley
If you go to the search engine above, and type "surgery" or "thyroidectomy" you will hear some more experiences of others on the board.

[snelsen]

in reply to: kiwi just diagnosed #1063160

Makes sense to ME! Keep track of your pulse rate. Glad your wife is a nurse. I am also, but believe me, the world of Graves’ was totally foreign to me. Studying the endocrine system does not address what it is LIKE to experience this crazy disease.
This site tends to tell the stuff that you simply do not hear in a docs’ office, even though they are good docs.
Shirley

[snelsen]

in reply to: RI treatment in Men #1063165

Hi, welcome to the boards. Just want to say that people choose different paths of treatment mostly for their own personal feelings or reasons. If you go to the search engine, type in the different treatments, you can read the thoughts of others on the board as they decided what they wanted to do. All choices are represented by people on this board. There is no absolutely right or wrong answer.
Shirley Nelsen, snelsen

[snelsen]

in reply to: kiwi just diagnosed #1063158

Hi Mike, you will find lots of friends here, with a wealth of experience to share.
I am wondering if you should call your GP doc, asking if you should be taking any medication for your fast pulse rate. Hearts don’t like to beat that fast. Same with high blood pressure. Usually people at your stage are put on a beta-blocker, which is a drug (different than the anti-thyroid drug) to slow the pulse rate. I am reflecting my own experience, and that of everyone who has an initial diagnosis of hyperthyroidism. I think it is worth calling your doc on Monday and asking this question. It is possible to end up in an ER with a very very fast pulse rate, and it can be dangerous. Yours is fast, but it can get faster at this stage.

You will have plenty of time to read, hear the experiences of others, and make a decision on further treatment. People on this board have pretty much chosen their treatment based on their personal preferences. Some are concerned about radiation, some are concerned about surgery, and some are concerned about the unpredictability of taking ATDs, and do not want to ever be hyper again. All choices are represented on this board.

It is good that you are going to the endo. A suggestion is that you call the office and ask them to notify you of any cancellations they might have. At this time of year, it is a pretty good possibility that this could occur. The office allows a longer period of time for the first appointment. Be sure to take your labs.

You WILL feel better. I know this is very discouraging. I grew up on a farm in Iowa. Chores don’t wait. As Bobbi said, the ATD will kick in pretty soon.
Shirley, snelsen

[snelsen]

in reply to: Newly Diagnosed with No Insurance #1063293

This is to melisB57.
Hi, how are you doing with your search for medical care? Any luck? How do you feel? Have you succeeded in getting the appropriate meds for being hyper? Give us an update!
Shirley/snelsen

[snelsen]

in reply to: Do any natural/alternative treatments work? #1063328

Hi, I posted a response, but it seems to have gone into the ether. It just disappeared.
Wanted to clarify that TSH levels that are low, indicate hyperthyroidism. So goal is to increase the number. The general range is close to 0.4-4, depending on the lab. So you are working to increase the TSH, correct?

[snelsen]

in reply to: problems after OD surgery #1063184

Hi Marit,
I was much happier raising the mattress the entire width of the bed. I tend to move all over the bed, so my head was always elevated. I would guess about 30 degrees or so. If you can get a good sleep sitting in a recliner, that is another idea.
Is the fluid accumulation under your eye getting any smaller, or better?
Shirley

[snelsen]

in reply to: One month till RAI #1063168

Hi, congratulations to you on making your decision for your own reasons. Enjoy the Christmas season in New England! It is a very empowering feeling, giving a sense of relief, plus knowing there is treatment action being taken for the very potentially dangerous physical side effects of hyperthyroidism.

I am sure the RAI folks will chime in on their thoughts and experiences. I chose the surgical route, so I can’t say much, except that I wonder if you are not going to be very hungry if you limit yourself to only hard candies???? From my surgical experience, I had a spaghetti dinner with salad the day after surgery! I was so hungry! But that is a little non-issue that you can check out or figure out.

However, I am concerned about your plan for you eyes. I strongly suggest that you DO take the prednisone to reduce the swelling in your eye. It sounds like you have not seen a neuro-ophthamologist yet, and perhaps TED (thyroid eye disease)has not been mentioned to you. But-if you eye is wider now, another way to look at that is that it is pushed forward a little bit out of the orbit, or eye socket. That may be happening because the eye muscles are being attacked by antibodies, causing swelling, or fibrosis, in one or more of the eye muscles. BUT-for whatever reason, when it gets crowded in the orbit, there is more pressure on the cranial nerves in that area, most specifically the optic nerve. And that is not good. But I am not really speaking as a medical person, I am speaking from my experience from the past two years with TED.
I have learned from the recent conference, that the incidence of TED is a bit higher after RAI, so that is another consideration. This is a good thing to further discuss with your endo, perhaps get a referral, or ask around, or use the references for finding eye docs who are familiar with TED in your area-get a baseline exam. They will do a sensory-motor
exam, visual fields (by a machine, not the wiggly finger exam) and some color recognition, plus a bunch of measurements.
I think the fact that your right eye is 4mm "larger" that your left eye, deserves further discussion.
Look forward to hearing from you about this…
Shirley

[snelsen]

in reply to: RAI–2 months later update #1063207

Hi Pinky, thanks for the nice post! It is always so reassuring to hear the experiences of someone who is trying to make decisions about treatments. I can certainly relate to the cognitive dissonance of being away from your two year old….yet enjoying the break! Everyone survived just fine. Best wishes to you. So glad you are nearing the end, realizing that we always have Graves’.
there is a progression to a steady state where it is not ruling our lives.
Shirley

[snelsen]

in reply to: Do any natural/alternative treatments work? #1063323

Nice! Really nice! What an excellent post. Thank you for taking the time to share your knowledge and experience. It is relevant and helpful. I especially liked your comment about alternative medicine, its’ history and "proven effectiveness." it bears repeating. So here it is again.

"With respect to Ewenme’s comment about acupuncture… it must be remembered that "alternative" medical treatments are only alternative HERE. These treatments (acupuncture, Ayurvedic, homepathy, etc.) have been in existence for centuries, even millenia, in other countries and have always been highly individualized. So the "proven effectiveness" theory doesn’t really hold water for a number of these treatments since it is impossible to apply research study standards to patient-specific therapies. Incidentally, the biomedical engineering and pharmaceutical fields are facing that same dilemma as more and more of our cutting-edge therapies have improved by becoming patient-specific."

Re eyes! I am not checking all your posts before I send this, but wanted to say I sure do understand! Mine are dribbling tears on the keyboard right now. The photophobia, diplopia and excessive tearing are very stressful to experience. As you note below, I have had two surgeries, will be exploring eyelid surgery, including a complex lower lid procedure with a skin graft from the soft palate. I have a lot of reservations about the graft.
Shirley

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