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in reply to: NY Times piece on thyroid disease #1065501
Thank all of you who contributed to this piece. Really great teaching moment! Wish they would have a similar feature on TED! This is a marvelous gesture, Ski and James, and the others, again, thank you so much!
Shirleyin reply to: update from 7 weeks post rad iodine #1065531Sorry, Waitman, I got my response mixed up! I was trying to respond to YOUR response about my post! I really did appreciated hearing from you..
I am sure that you will revert to a normal person, neither hyper, or hypo. I take Synthroid 1/2 hour before food c a glass of water, then have COFFEE with cream. I have learned, over the many years, if I am consistent in what I do, that is the most important thing, and one hour vs 1/2 hours does not make any difference!
I hope the Synthroid kicks in, and you will begin to notice a change. You already know for all who post here, theat everything takes way too long when all we want is to be back to our normail self, neither hypo or hyper. ITI WILL HAPPEN.
Best wishes to you, and this site is a lifesaver, isn’t it?
Shirleyin reply to: update from 7 weeks post rad iodine #1065530HI WAITMAN, THANK YOU FOR THE RESPONSE, WHICH IS MOST APPRECIATED.
I have worked in health care for 50 years (only retired as per diem in the recovery room, cause my diplopia was so severe with the upward gaze when I looked at the moniter), so the more medicalese the better!
I don’t have an endocrinologist who is indifferent to how I feel. He’s fine. He does have concrerns @ the cardiac implications of maintaining a very low TSH. As people age, maintaining a hyper state does increase the incidence of a-fib. Also osteoporosis. To expand on that, I have had a BOATLOAD of chemo and radiation, r/t a very aggressive breast cancer 10 years ago.
LABS
May-TSH .036(free thyroxine is 1.1,( range .6-1.2) Last TSH .036(.4-5)
January, TSH .036, free thyroxine 1.0
IF say I am done with reducing, he is fine with that. I want to give it a good chance first, and when/if I get tired of being cold, I will say I have had enough. I actually am gaining energy now. (Remember I love in Seattle, where the sun has been gone since October, and now it is BACK!)
I wish you luck with your med management, I am sure it will get better, but as with this darn disease, everything is so so slow!
I think I am ready for strabismus surgery next month. Then I will not have to hyperextend my head and neck, I hope, and will be able to look straight ahead, and maybe even up a little bit. I have constant spasms in my scalp, neck and shoulders because of this.
and yep, I know that increasing age can be another darn variable with this disease……
Shirleyin reply to: Kidney Stone… update 5/27 #1065533I know the planning logistics can be a nightmare, but you will feel SOO MUCH BETTER when it is all gone!!!!
shirleyin reply to: Treatment options if want I to become pregnant #1065578Hi Susanne,
I don’t think I mentioned that we decided to have our second a few month after my TT. Remember i had a newborn, then TT when he was 3 months old! (grin)
It was wonderful to KNOW that I would not be the crazy hyper that I was post baby and pre surgery. That was a very important piece of knowledge that I held on a high pedestal! I never felt hyper again. I detested being hyper.I know that one belief is that you cannot be a little bit hyper. I don’t think I completely agree with that. First, we have to decide if we mean hyper by symptoms or hyper by labs. I have NEVER been hyper again in the way I feel after my surgery, and it has been over 40 years. But, for a reason nobody can understand, I was maintained a "little bit hyper" by labs, (tSH@.002-.006) but it was because my Synthroid dose was too high. No good explanation for that, and I have always felt perfectly fine. But having too much thyroid is not a good idea for bones and hearts, so I am still puzzled by why she kept me at a higher dose. I have been reducing the dose for the past year.
I wish you the best with your appt. today. it is such a gooooood feeling to have a good team, so glad you have one.in reply to: Treatment options if want I to become pregnant #1065576I can understand completely why you would like to move along with things so you can get pregnant. Makes perfect sense to me. My view is that you are doing a very careful consideration of your options. I have had a thryoidecomy, it is not a terrible horrible thing. My recovery was rapid, and I had a three month old baby, was working full time and breast feeding.
Sometimes you do not want wait, ya wanna work on getting a baby!
So, I am pretty much reflecting Ski’s thoughts. You can check with your docs, but it is very logical that you will not become hyperthyroid if you have had a TT. You may be euthyroid, you may need a little bit. But either way, having your docs, and it sounds like you have AN EXCELLENT team, working with you, you and your husband can make a good decision that fits with your personal goals.
Shirleyin reply to: Having a hard time dealing with Graves. #1065674Agree with Ski and Bobbi. My suggestions:
-do NOT take any thyroid meds on your own. It is tricky enough with medical management.
-I am glad you other labs are fine, and not surprised.
-If you do not have a copy of your labs, I encourage you to have the private hospital where you went, print out your own copy. You will probably need to sign your name to a release of information form, that is fine, if they don’t offer it to you, ask for one. That is how you get your records.
-University hospitals are great, in my opinion. That is where I go for my care, to the department of endoctinology.
Most medical specialties want a referral to see you. This is a long shot, but when you pick up your labs at the hospital where you went, ask for (plead?) for a note from the ER (they can look at your chart) and write a note that they state that you need to see an endocrinologist for your thyroid disease. Hope it works.
-If you have noone to send a referral to the univ hospital endocinology dept., take your labs, GO there, find out where it is at the information desk. Go there, say you do not have a referral, that you do not have insurance, but you need to be seen in this department for management of your thyroid disease.
See if that works.Now, I have no idea if you have explored options for yourself for medical care. In my state, people have Medicare coupons, probably called different things in different states. Have you explored what is available to you< I am guessing there are provisions for you to get care.
If you are still buying the soy product, I would stop it, save your money for prescription drugs. It will not solve your problems.
I am trying to give you a sort of a map to follow, hoping to eliminate some of the barriers you might face.
ShirleyI went to the site, I know all docs mentioned there, but none are pediatric ophthamologists, and I am pretty sure none of them do strabismus surgery. There are six listed, and I know four of them don’t, for I am going to two of them, and they re the ones who recommended me to the strabismus peds eye doc. Interesting!
in reply to: review TSH, T3, Free thyroxine #1065559That is a really good point about "symptoms." In both hyper and hypo, there are certainly many variables which can be contributed to other than thyroid.
Ski, yes, I have been maintained in a hyperthyroid state for over 12 years!!!! By labs, but not by symptoms, I had no symptoms,
Pulse rate in the 50’s, weight stable, did not feel hyper, anxious, etc. About the only think I could say is that I was always warm, kept a cool house. Not that I have gone from 150 mcg down to (beginning today) 75 mcg, I am ALWAYS COLD!
I cannot explain why the endocrinologist at the University of washington was content to have the low TSH levels. I was taking 150 mcg, felt really good. She has since left. I have often wondered if being maintained with the low TSH ultimately contributed to the onset of TED in the past two years.
I know I had a sub total thyroidectomy. Was euthyroid for almost 35 years, then began Synthroid.
I have a different endo now, and I made an appt to see him Friday. Thanks so much for the T4/TSH comment, and the pituitary function aspect. I will mention both to him.
ShirleyThank you, Bobbi, for your response. The background for my question is that the surgeon who probably will do this surgery wants a general. The surgeons who do this surgery are always pediatric surgeons, and I can understand why they usually prefer a general for kids, along with parents. There is no possibility that a person can be conscious at a certain point if they have a general anesthesia, for that means a patient is intubated. But it certainly is possible if you are asleep with IV sedation, for that would enable the pt. to wake up enough to assess their eyes. To date, i have not found anyone who has had anything bot a general, and have not found a surgeon who does not want a general.
I hope to hear more from someone who has "walked the walk!" I think I read Jake’s old email, I will searcht he archives again.
Seems to me he had seven surgeries? I am sure he will write pretty soon…
Shirleyin reply to: review TSH, T3, Free thyroxine #1065556sorry, i have NO IDEA why this loaded three times. I saved it as a draft, because I thought did not load at all!
Hi Snapshot!
Just a thought, I think you will have a better idea of the pros and cons after you talk with the surgeon. You will probably get a better idea of the post op recovery period at home from this marvelous bulletin board! One question you can ask is if he removed all of the thyroid, or if he leaves some of the thyroid. A couple recent posts have let me to think that both options are still done, but perhaps they are doing only total thyroidectomies now. I am not entirely sure of my info on this. The webside of ngdf says either or are done, but one of the faciltators mentioned that the current practice was total thyroidectomy. At any rate, that can be a question. It will be the endocrinologist you will have a long term relationship with to manage thyroid supplement if you need it.
My feelings of panic an anxiety went away after my surgery. Could not believe it.
Shirleyin reply to: Having a hard time dealing with Graves. #1065670HI lefty, how are you doing? Have you had any luck with getting care and feeling better?
Shirleyin reply to: Confirming that posts have been restored #1065582It seems the posts between 4/15 and 4/23 (except for one early morning post on the 23rd by Ski) are still missing.
I tried to see if they were out of chronological order, but could not find them.in reply to: RITUXIN RITUXIMAB-ANYONE TAKEN IT? #1065606I have decided not to take it, for lo and behold, one doc thinks I am not in the active inflammatory stage anymore, and that is when it is given. The studies are small. If you want to read about it, look at the last newletter, there is afeature article about it, and some docs in Michigan @ Ann Arbor. It is a big drug, with big things to weight, for it knocks out the B cells.
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