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in reply to: Just diagnosed today #1182316
Hi, welcome!
You have time to think this through.Just for clarity, I suggest you speak to a couple pharmacists in different pharmacies, and ask if methimazole is contraindicated if you have a sulfa allergy. I have met several DOCTORS who were confused by SULFA and SULFER!
And, is your sulfa reaction a significant one?
No. We are not doc, and just people like yourself.
Of course you want to listen to your doc, but always good to ask lots of questions.I chose the surgical route, for it was far, far more comfortable with me to have the procedure, have it ALL DONE right away, and go on with my life. Lots of people here have described their thought process, and their experience with a thyroidectomy extremely.
And, as you know, Ski chose RAI. It was not a choice for me cause I did not want it. That simple. Sometimes that is why we chose a treatment. Because we don’t want the other one! There’s no real answer, or right answer, except YOUR decision.
You will feel better on the beta blocker, and of course, your heart rate needs to come down, and it will.Keep writing with your worries and questions.
Again, welcome! Sorry you have to join our club. Greatest thing is that you will have many new and wonderful friends who understand and “get it.”
Shirleyin reply to: Eye symptoms #1182307I mean…scanners!!
in reply to: Eye symptoms #1182306worth a try, scanners! i know exactly what you are talking about.
I also purchased stuff from the Dry Eye Zone website, some goggles and things. they were to help eyes stay closed. Other people said they helped a lot. If you PM me, give me your email address, I will take a pic of what I am talking about.Yep! Got it, and thank you, Alexis! I decided to post it on the forum, too, so it might be a subject someone else was interested in. Coincidentally, I decided on the same days you have chosen. Although, as Kimberly et al mentioned, I don’t think it makes that much difference.
We have both been through a lot (though I have raised my kids, and had one less than you!) I am so glad you are feeling relatively right side up now. About time!
Shirleyin reply to: Eye symptoms #1182304Hi Christy!!
I think we have had an equivalent experience with TED. I know I have written before about this,but do order some Mepitac and try taping that one eye closed. I think it will really help you with the comfort of that eye, and you are at less risk for a corneal abrasion…which is the last darn thing we need. i think that I will be needing to do this the rest of my life. At least this tape makes it pain free to remove it.
Shirleyin reply to: orbital decompression surgery #1182246Agree with gatorgirly! MUCH better to be in your OWN home in your OWN bed.
It could be more complex to get the head of bed elevation you need at the the hotel. But that can be done, somehow, another thing to plan logistically.I am not sure if hotels are cleaner than hospitals, many variables to consider. They most likely have a higher rate of bedbug infestation than hospitals.
At least hotels are not full of sick people, with the existing potential of a nosocomial (hospital acquired) infection. In addition, I am about 100% sure you do not have the choice of staying in the hospital an additional two days. That decision is not made lightly by the staff.When in a hospital, my goal is to get out of there as fast as possible! All the things about your life which you usually have total control over, you don’t have, when you are there.
I would not want to be in a hotel. A couple hours ride home is nothing, in my opinion. My overriding thought was go to HOME to my OWN BEd which was all ready for me to crawl into. Home is always better.
Well, those are my thoughts! I vote for home.
As gatorgirly said, to each his own, so if you decide on the hotel route, you will feel good about that decision because it will be yours. But do weight the pros and cons. Your friends may not really know your situation.
Shirleyin reply to: Pain,part of Graves? #1182263Hi Connie, I suggest take this step by step.
1. Ask your primary-or find a new endo, and tell them you have Graves’,the amount of time you have had it, and that you have not had regular labs over the years, and that you have the symptoms you described. Say that you feel so crappy, that you know something is wrong, would they do some labs, including a thyroid panel, and give you a general exam.
YOu also NEED to understand reports, and you must learn to have a basic understanding of your labs. It’s not hard. Generally, at the end of any written report, lil your CT scan, there will be a summary and impression. That is where you can get a quick idea of if it were normal (i imagine it was, or you have been referred to a neurologist, if they saw something concerning with the head CT.)
Lots of learning for you to do. Plus finding a doctor who will look at you as a total person. And part of that is YOU giving a good and complete history to them.
Part of learning labs, is looking at the normal range on the lab report. Most reports have them. THIS IS A FOR INSTANCE, ONLY, you do need to get info from your doctor. But you need to know that many people have a general understanding of labs.
For instance:
1. If there is a super low number for hemoglobin and hematocrit, a person could be anemic, and/or the reason should be explored.
2. If the number for WBC is high, white blood cells (fighting infection is ONE reason it could be high, the normal is generally 5000-10000, there are many reasons for this. Some easily explained, some not.
3. I think you have the impression that the number you mentioned, 12.8, means HYPER, BUT IN FACT, IF IT IS TSH, the higher the number the more HYPO you are.2. First, if you have not had a DEXA scan, I suggest you get one. Ask your primary care doc, or any of your docs. It is possible that you have a degree of osteopenia or osteoarthritis. This is what it is:
The Dexa scan measures the bone-mineral density in the patient’s body. Multiple X-rays will be taken of your body to measure the amount of calcium and bone minerals in the makeup of your bones. The test will focus on areas of the body that are at risk for fractures, including the spine and hips. You will lie down on a soft surface while a mechanical device swings over parts of your body to provide bone-density images.
Read more: http://www.ehow.com/about_5042767_dexa-scan-show.html#ixzz2v6eptmqA
4. Also, a simple X-ray of your knees, wrists and shoulders will tell if you have a lot of arthritis which causes this pain. (I do.)
We are not doctors, as you know, but fellow patients, and my suggestions are from my own experience and what i have learned for my docs over the years.
**one further comment. We have Graves’ for the rest of our lives. The need for levothyroxine does NOT stay the same. You should have a good endo in your life, have at least a yearly appointment and labs, and/or call with changes in how you feel, so they can order labs to see if Graves’ might be the issue.
Most of the things I’ve said here come under the phrase “differential diagnosis” considering possibilities,t hen ruling the in our out, based on your symptoms.
Hope this helps a bit, I am so sorry you feel so terrible right now.,
Shirleyin reply to: Graves’ Opthalmopathy #1182203Hi De,
I am so very sorry of your rough experience. I encourage everyone to go to an ophthalmologist who KNOWS TED very well, and much preferable to find a neuro-opthalmologist. I am so sorry for this hell you have been through.There is no excuse for “missing” optic neuropathy. The tests are simple to do, along with your changing vision. i cannot imagine THREE decompressions! One took care of my optic neuropathy, and I refused to have any more. I’ve had enough other crap, as you can see from my history.
Many ends are “into” diabetes. If anyone can possibly do it, they should find an endo who “Gets” Graves, and has plenty of compassion for this devilish autoimmune disease.
gotta say, thought that TED was more life changing in a bad way, than Graves’
Shirleyin reply to: orbital decompression surgery #1182230Look me (nelson) up in the Search Posts section. Also look up orbital decompression
Here are my thought on what you need….
1. Help for a week, someone there with you all the time for the first 3-4 days.
To prepare your meals, to change cool/cold pack applications (I used 2×2 and 4×4 gauze sponges, sitting in ice water. Cool packs on YOU, not ice packs.
To field phone calls and/or visitors.**2. ****Head of bed elevated at least 45 degrees. I found it much better to put blankets, pillows, anything like that UNDER THE MATTRESS, all the way across the bed. Then use whatever you re used to under your head.
Having your head elevated will reduce any potential swelling. Having your head flat, will probably result in quite a bit of swelling.3. I went for a walk around the block the 3rd day. On the 2nd day, I felt like doing that, but after getting dressed, I changed my mind.
4. I did not have pain at all, just general discomfort. Be prepared for not getting a good sleep. It is hard to maintain the 45 degree+ head position all the time, but well worth it.
Maybe this will give you some fodder to follow up with questions you may have.
Shirley
in reply to: Graves’ Opthalmopathy #1182201Hi, I suggest you do a bit of reading before your appointment. Here’s a pretty good article:
http://www.patient.co.uk/doctor/thyroid-eye-disease
in the ideal world, your doc should take some time and explain the pathway of TED, some helpful things to do to be more comfortable. But judging from your first visit, it seems that sure did not happen at that time.
TED is NOT a self resolving disease, as he said.
And, though I am not a doctor, I am puzzled why steroids were prescribed for you. Unless, of course you had documented signs that may have indicated optic neuropathy. Yes, steroids are used, but not indiscriminately. Sometimes, they can be given for a bit of relief from the utter discomfort that is associated with severe TED. But steroids are very big guns, and should not be used lightly, that is for sure.It really bothers me that you were told to sit it out for 2-3 years There are a ton of questions you will have, an there are measures to do to be more comfortable.
1. Non preservative eye drops
2. Sun glasses if you are light sensitive, also called photophobic, same thing.
3. If you eye/eyes do not close at night, you should tape them closed. I have found the BEST TAPE in the whole world is Mepitac. I hope this is not an issue for you.YOu should also have been told that there are MANY things that can be done to help you with appearance, double vision and general comfort, when you get to the inactive, or cold phase. This gives much hope, it sure did for me.
Especially with double vision, which had a lot of.YOu can
Your endocrinologist should be nice, understanding, knowledgeable and supportive. You deserve it. Many of them are all about diabetes, and not that interested in tEd, and some really don’t know much about it, except the page in Cecil’s medicine they read many years ago.
I am simply trying to say that with an endo, especially, sometimes you have to go to more than one to get the right fit for you. Grave’s is HARD, and TED is as hard or harder to deal with. So the eye doc needs to be sympathetic as well as knowledgeable.
YOU WILL get better, you may need surgery, and you have also been in the active phase for a while, so i imagine you will stabilize pretty soon!
I would ask a lot of questions about the study, and ask to have all the material, and take it home and read it. Ask for the cons as well as the pros. I am not against studies, but good to really know and understand what is planned and what they hope to find out. Basically, it is a better treatment of TED symptoms, I believe, from what I read. Ask if you still are a candidate since you have already had steroids several times. Just a thought.
Seattle was 56 degrees today! Ha. Iowa City was 7!
Shirleyin reply to: Graves’ Opthalmopathy #1182196WEll, there is a lot to read about varied experience on the forum, and the website itself.
For starters, I think it is imperative that you see a neuro-ophthalmogist, get a good exam as a baseline, so changes can be documented. Not sure which doctor you saw, but you need one who is very familiar with TED, and does the appropriate tests to monitor your vision. AND is empathic and understanding. They DO exist!
TED does have a progression, the active and then passive or inactive phase.
In the active phase, eyes are changing all the time. Surgical procedures are not recommended in the active phase, for the procedures are based on eye measurements.HOWEVER, there is one exception, which is why you should have continuing care and observation. If the eye muscles get so big that they are pressing on your optic nerve, that is an emergent situation, for which and orbital decompression IS done in the active phase, for the optic nerve could be permanently damaged, resulting in permanent blindness.
Generally, steroids do help, but not always. As you may have learned, they have their pros and cons. Generally they are a temporary measure to relieve pressure on the optic nerve (called optic neuropathy.)
I’m running out the door right now, but will try to write more later today or tomorrow. You will find this site very helpful and valuable and supportive!
Shirley (Midwesterner from Iowa who lives in Seattle!_in reply to: Hi all, back in touch #1182175good grief, Robboford!
What a stressful and traumatic experience! I am so glad you are on the other end of it now, and about darn time. Did the pathology tell you if the other two parathyroids were removed?It must have been a huge shock to hear that you were going to have another surgeon minutes before your surgery.
Just wondering. Did you take KI (potassium iodine) drops 7-10 days before the procedure? I believe that is part of the STandard of Care here, and as I recall, you are in Great Britain? The purpose is to reduce the vascularity of the thyroid gland.
Thinking of you, I have had lots of experience with TED and the procedures I think double vision was the worst thing that I experiences. I am used to being light sensitive, having dry eyes, and much more. But I can SEE and I can DRIVE.
The very best to you, so good to hear from you.
Welcome back
Shirleyin reply to: Natural Alternative for Synthroid #1182170Nope, I don’t think so! Unlike many supplements, which are found in foods, levothyroxine is produced and distributed in a very complicated that our wonderful bodies do, involving the pituitary, and a feedback mechanism that is quite complex.
I don’t think a naturopath, or any other alternative health care provider would suggest this.
It is possible that some one who is selling something might claim this.
Also depends on how you yourself define the word “natural.” i don’t this this is possible.
I will be interested in knowing if you were just wondering this, or if someone has told you that you should take something that is not levothyroxine. That could be a danger for you. Try to check into it some more. Probably you will get a much better answer from Kimberly.
Shirleyin reply to: TED treatment? #1182166Hi scanders!
A brief post to you tonight! If you use the search engine, look for my name and TED, you will find a lot! I had (have) severe TED, understand all that you are experiencing with the dumb disease. Hated it.You have a very good understanding of a difficult part of TED and surgery. Yes, the right thing to do is wait until the cold phase (vision not changing every friggin’ day!) before doing corrective surgery, the first one being strabismus for double vision. This was, by far, the most best wonderful marvelous procedure!
I immediately had mono vision, even while still in the OR!I am tired tonight, so will be brief (before I go to bed, tape my eye closed cause it won’t stay closed unless I DO! GRR!)
I think your doc is doing the right thing. IOC is not a happy experience for eyes, so reducing the pressure is very important. Regardless of the cause.
And of course, he is checking visual acuity, which is critical. Be sure to report pronto if you observe changes in the color red, and/or things are not as sharp as you thing they should be. I did have optic neuropathy, and did have and OD in the active phase for this reason.Like PattiMeg, I have had multiple (10 or 11) surgeries on my eyes/eyelids cause of TED. Some were a disaster for me, big time. Will save that for another day.
Welcome (smelcome!) to the forum you wish you’d never heard of! But it saved my life and skin and sanity many times with Graves’ and TED so so glad you found it!!!
Shirleyin reply to: Aye caramba! #1182116I’m your cheerleader! Go for it! It is a definitive solution. Easier to manage, you will know “where you are.” Plans are made, you made your decision, sounds like you own it and it is a good one. When the darn thing is out, it is easier to manage and regulate…though not without a bit of trial and error till you get to that”sweet spot” for you.
Much love and caring,
Shirley -
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