Forum Replies Created
-
AuthorPosts
-
One thing about having graves and being on anti thyroid Meds and hospitals you most Likely will get a private room. You immunity is low with all of this.
I became allergic to the MMI Meds and ended up in the hospital because of them.
I wish this disease on no one. It sucks. Knowing that I was not alone by finding this site has helped me get through.
in reply to: Just dropping in after TED orbital Decompression #1170527Anyone experience a headache and sinus infection after OD? I ended up with a sinus infection after my OD. Currently on antibiotics the question I have is I do not know if the headache I have is from surgery 2 weeks ago or from the sinus infection.
Also the blood clots how long did it take for you to have them clear out?
in reply to: Just dropping in after TED orbital Decompression #1170526Anyone experience a headache and sinus infection after OD? I ended up with a sinus infection after my OD. Currently on antibiotics the question I have is I do not know if the headache I have is from surgery 2 weeks ago or from the sinus infection.
Also the blood clots how long did it take for you to have them clear out?
in reply to: Orbit Radiation or decompression #1169697OD surgery scheduled for feb 21st. Neuro states that I will be in the hospital for one night. He said that he is not doing the route from the nose but cutting under the eye lashes/lids. Ephemoid sinuses will be routed out as well as the top and bottom of the eye socket. Does this sound correct? Protrusion is at 25 the other eye right now is at 20.
Did anyone decide to by and ergo bed where the head raises up? I have tried raising the head of the bed with the bricks but that through my back out of sack never allowing the pressure to be relieved. I have always had back issues.
in reply to: Orbit Radiation or decompression #1169696The only reason he even offered radiation therapy was because of me not wanting to thave surgery. As I have tod him for months I want to keep my skull in tact . Just me not wanting surgery. However I’m now considering surgery. Knowing that I will have to have it sooner or later way hold out? I really don’t have time for surgery right now be ause of end of year close out and reading the biz for taxes will take up my next 8 weeks.
in reply to: Hypo 6 months and counting… #1169474Sorry for the long post but I just wanted to chim in here. I switched from synthyroid to armour a t4/t3 disected thyroid product because is was having the same issues trying to get my life back from the hypo he’ll I was in.
My story, diagnosed July 2010 RAI Nov 2010 extramme hypo Jan 2011 tsh 79.8 as well as t4 and t3 not being in range not even close. I came down with a bad case of TED thT started before the RAI but the Dr did not believe me. With in 3 days of RAI I started having the begining of my TED issues. But that is a whole different story.
I had issues with the synthyroid almost immediately and was told tough there is nothing else. They started me on 1/2 of the lowest dose and I was to increase a 1/2 tab every 1-2 weeks until I hit .75. My TSH was decreasing but I felt like dog pooh. Everytime they did an increase i had anxity and heart palps and feeling of hyper eventhough my blood was showing hypo. When they tried to increase me to .100 I had a disconnect from my eyes to my brain to my body. They all worked just not together. I went back down to the .75 and after a week I tried again. Same thing happened with in 2-3 days with the disconnect. I went to a different dr. And told him what was happening he said to stop the synthyroid and try the armour. 1 grain he wanted to go higher but I was too scared so I asked for the lower dose.
I was so scared to try it, because I did not like any dose change because of the racing pulse chest pain dizzy etc…
On the day that I started it I took 1/2 of the dose in the am with water and the other half at 2 pm. By the next ,owning I was feeling wonderful. I had no brain fog no racing pulse etc… I tok it for 4 weeks and it was time for a blood test with my regular doc. I did the blood work and then went into his office. He said wow this is the best test yet. You look like you feel better. I told him Yes I feel great however I have to tell you, I went to a different doc about a month ago because of the dose increase issues I was having on synthyroid. I explains the situation and said the dr switched me to armour and I felt better but I needed to increase which shocked my reg doc because I had always balked at his upping my doses. He increased it to 1 1/4 grains and sates that my endo will not be happy because I am on armour. I told the doc no worries about the endo I am firing him for keeping me from feeling better.
I can say that for the past 2 months I feel great like I am finally sliding In to my sweet spot on my thyroid replacement. I have also noticed that my eyes are doing a lot better now that my labs are with in range.
Keeping my fingers crossed that I stay this course of feeling better.
What I wanted to get across is that why the main stream medicine thinks that synthyroid is the only med out there for hypo they are missing the boat when a paitents comes in with near normal blood tsh bud is still complaining that they Re having hypo symptoms. Some of us just don’t convert t4 like others can. I am proof that there is hope of getting away from the hypo he’ll I was in. My headaches are now non existent, eyes are getting better, brain fog is totally gone, my energy is almost back to normal, i think after the next dose increase i will be right where i want to be to feel normal. I no longer take the anxiety pills and I am happy again
Good luck with finding a doctor that will treat you with the t4 AND t3.
Jules
Have you had to change your dose on the synthroid yet? Did you have any issues with the racing heart and palps etc? Just wondering why I have Duce a weird reaction to the increase you would think going from .88 to 100 would ne no big deal. Also with your eye surgery. How long were you out of commission in the hospital etc…
in reply to: New on here, just had RAI #1061396Hang in there victor I was told that with the graves we have hyper sensitive nerve endings and we feel our hear beat. If it gets bad call the endo and see what they say. I am 8 months post RAI and I still get the chest pains. They say it most likely is my stomach which makes since I do get GERD acid reflux. I was also told that once we get regulated it goes away. Still trying to climb back up to eurthoid from going hypo from the RAI but I am an unusual case.
in reply to: What is TED? #1061386Thyroid eye disease. It is where your system starts to attck your fat and muscles in the orbits (sockets) and your eyes can have symptoms, which one or more can be dry itchy watery Geary swollen eye balls, retracted eye lids, swollen bags under the eyes, double vision, blurry vision, wide eye stare. I have watery, Geary dry, swollen eyeball, swollen bags double vision, vision loss only 25% of graves gets the eye issue so don’t sweat it, not every one does. I was Dx last year ago 7/1/10 now that I know I actually was hyperthyroid 8 years ago with mild eye issues and did not know it. I had all of the symptoms but I pushed it off to moving and starting a new biz that was creating all of the weight loss and eye stuff back then. If I knew then what I know now…. But it’s all good. It’s better then the alternative.
” title=”Very Happy” />in reply to: EYE DROPS AND LUBRICANT #1062556I have not found that any are really better than the others. I know that on my monthly Eyey Dr appointment I ask for samples and they load me up with enough to get through the month. All have a great coupon in each one for about 2 – 4 dollars off your next purchase. Once I find one I fell is better than the rest I will pipe in again.
But I am on steriod drops 3 times a day, and steroid shots into the eye once a month so that might have something to do with the not being able to tell any difference.
in reply to: AFTER RAI who what am I now? Graves w/ Hypo? #1062869LOL your statement “I have Graves’ Disease and I received Radioactive Iodine Treatment to ablate my thyroid gland xx months ago. I went extremely hypothyroid with a TSH of 67+ and have just started thyroid hormone replacement.” is what I finally had to repeat a few times, that s when they said you are a mess. Oh I had to add in and I am going through Thyroid Eye Disease. dont use TED because the medical community look at you and say what is that!
I was just wondering if when you are dealing with medical personal should you tell them Grave disease no Hypothyroid or just leave out the graves all together? I mean I have heard you will always have graves even when hypo so I assumed that I needed to tell them Graves Disease.
Hi – Sorry to hear you are having to go through this disease.I want to for warn you I am having a bad week so Please do not take anything that I say as solid gold advise. When we have bad days we sometimes come across wrong angery etc, so I dont want to scare you.
Yea we all have good days and bad days it takes about 6-8 weeks on meds before you actually start feeling the difference. This is all are a part of my new norm. anytime I start something I say OK I can do the next 6 weeks to get better.
I was on the MMI for a few months never did feel actually right with them but that is just me I was allergic reaction to them. I’m the 1% on them, others on here had no issues and have felt really good on them even remission. I had RAI in Nov 5 2010 I felt really great in early to Mid Dec. I mean REALLY GREAT. Then I started to slip down into the hypo with symptoms but the blood lagged so far behind that I was REALLY HYPO when it finally did show on the routine blood work. So now I have a new norm for 6 – 8 weeks.
I have figure out that we are the ones dealing with this and we feel all of our changes way before Dr’s jump in. trust you instincts. They usually are correct.
in reply to: Tearing eyes #1062881a little off the subject however I have the same issues, has anyone else noticed that the tears streaming down the cheeks leave a crusty trail on the cheek and that they smell a little foul? I go to the neuro Optho for a follow up tomorrow but I just hate the smell and wanted to know if anyone else noticed this.
in reply to: I Choose RAI I-131 #1063433Thank you Shirley – Yes I had been on Prednisone I am one of the lucky ones who is allergic to the base that they use. The next step is for the Steroid shots into the eye foe the swelling. I had called for the eye drops because I was desperate and deduced that if they were going to do the shots I knew that there had to be an eye drop I could try until my appointment Dr. K was great at stating on 12/30 at 1pm call him if it got worse over the weekend and don’t worry about it if I had to make the call I was on his Please contact list which that in it self was reassuring that I was in good hands. The double vision goes away with in minutes of taking the drops and as long as i am faithful in taking them I seem to be in realitavely good condition. So I go to the neuro on 1/10/11 and then from there who know. Thank you for the med tips I love my creamy coffee in the morning. Dr said either Evening or morning as long it was on a empty stomach which ever is better for me. I an in a hurry to get started tonight but will take your suggestion and start in the morning.
Jin reply to: I Choose RAI I-131 #1063431Updating – I had my blood work done yesterday and the Dr called this AM all he did was ask so are you really tired? I said yes but the cold is worse than the tired. He said well everything has worked perfectly and said all blood TSH T3 T$ all in the hypo stage and is starting me on the replacement tonight. today is exactly 8 weeks since having the RAI . 20mCi. Any suggestions on the synthoid (SP) would be great.
I knew that I was not feeling well but I put it off to the flu that I had over Christmas. I could not get off the couch this weekend for New Years. Literally.
I am still having the eye issues it really got bad last week. I had called my eye Dr at Shiley and requested Streiod drops to get me through until I can get back into him or the new neuro opth.
I go to a neuro Opth on Monday and see what he says differently from the Shiley. I love the Shiley Eye Center however my insurance wants me to be seen in our group of Dr’s before I get referred to SEC. So that is my update. I will be checking in from time to time about what is happening with the Eyes and the journey of getting regulated on the synthoid (SP) .75 to start.
Happy new Year everyone. I truly wish all of you the best year ever. Last year sucked that I really this year is better in so many ways.
J -
AuthorPosts
