Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
I had my Doctors appointment today with the doctor that I intend to switch. I am still currently waiting for my appointment at the Hospital of the University of Penn. They have doctors that specialize in graves. While waiting, you guys are helping me though. I thank you SO much for all of your help!
When I last left off with my doctor she wanted to dose me according to my TSH. I didn't listen to her and cut my dosage from 5mg to 1/2 of that pill and eventually 1/4 of the 5mg pill. While being on the 1/2 pill these were my lab results
March 14, 2014
TSH 0.50 in range ( reference 0.40 -4.50)
T4 free 0.9 (reference 0.8 - 1.8ng/dl)
T3 free 3.1 (reference 2.3 - 4.2pg/ml)
At todays visit, she asked me what I wanted to do. (She added that I could be in remission, but I already knew this because that what you guys had said. ) I asked her if there was a test to see if I was in remission. She said No. She said that she can take me off and check my bloodwork in 6 weeks and then see me in 2 months. So that is the plan...
Until I can get down to my July appointment in the city. I will have my bloodwork done a couple weeks before I go.
Does this sound right to you guys?
I have been trying to post info for Elaine Moore, but I was having trouble posting on her site. I think she's doing maintenance on her site.
Thank you for and Input !!! I truly appreciate you guys helping me through this!!
When I last left off with my doctor she wanted to dose me according to my TSH. I didn't listen to her and cut my dosage from 5mg to 1/2 of that pill and eventually 1/4 of the 5mg pill. While being on the 1/2 pill these were my lab results
March 14, 2014
TSH 0.50 in range ( reference 0.40 -4.50)
T4 free 0.9 (reference 0.8 - 1.8ng/dl)
T3 free 3.1 (reference 2.3 - 4.2pg/ml)
At todays visit, she asked me what I wanted to do. (She added that I could be in remission, but I already knew this because that what you guys had said. ) I asked her if there was a test to see if I was in remission. She said No. She said that she can take me off and check my bloodwork in 6 weeks and then see me in 2 months. So that is the plan...
Until I can get down to my July appointment in the city. I will have my bloodwork done a couple weeks before I go.
Does this sound right to you guys?
I have been trying to post info for Elaine Moore, but I was having trouble posting on her site. I think she's doing maintenance on her site.
Thank you for and Input !!! I truly appreciate you guys helping me through this!!
To check to see if you are in remission would be getting these thyroid antibodies labs done:
TSI
TRAb
You should get more labs done since March is now getting too old and see how you are doing with the 1/4 of the pill (1.25 mg) per day.
{{{hugs}}}
You are on a very small dose of MMI but your FT4 is still low? I am in a similar situation. How are you feeling? I would feel really bad with your numbers!
I am certainly no expert, but I can tell you a piece of my story to see what parallels there are.
I got a TSI (mine was 4.9 so still way too high) and I was taking 1/4 of 5 mg MMl 1x/day. My TSH was 2.0 and FT4 1.1 and Elaine recommended 1. block and replace or 2. going off my meds. Elaine said that ideally you can reasonably test remission when your TSH is over 2.
Now my Endo doesn't "believe" in B&R so I went off my meds. I am doing OK but B&R was my first choice! I am taking Milk Thistle to help with the mild palts and a bit of anxiety. I am also doing another cleanse to try and get rid of those antibodies. So I am managing.
So once Elaine's site is back up, I would be curious to hear what she has to say! But I would aim to get the FT4 in a better place!
Hopefully your new Dr. will support all of your hardwork addressing your Graves! Keep us posted!
Kim
Can you test for remission if you are stil on the 1.25mg pill? Would that show up? Or do you have to be off medication?
Kim, I feel so bad. I told my doctor I have no energy just feel terrible. She said it was the Methamazole doing that to me ( I was like yeah right) I definitely agree about getting those T4's up, that's why I kept decreasing and I thought by coming off maybe they would rise.
Thank You both for your support and Input I appreciate. I will keep you updated, Hopefully the new doctor will be better.
The secretary called back and said that the doctor said those tests are "unnecessary". Very Lame...
{{{hugs}}}
In the meantime:
I was going to stop taking the methamazole and get my blood work done in 6 weeks see what my levels were like and bring the blood work to the HUP doctor a couple weeks after.( In July) Meanwhile I realize my body could suffer.
--Or I was going to play it safe and keep with the 1/4 pill and re check blood before I go and then ask the Graves specialist for the TSI and TRAb...
I feel like finding another endo around here would be a waste of time.
If it were me, I'd continue sticking with the 1/4 of the pill until you begin feeling bad (hypO).
Good luck and let us know how that goes.
{{{hugs}}}
Sorry you are dealing with a doc that doesn't know how to treat or test thyroid properly...
I have had some luck with a general practitioner. The endos in my town aren't as thyroid savvy as some of the regular docs I have come across. I also had luck with a osteopathic doc- he's a regular MD but his name also follows with a "D.O.". He has had additional training at looking at the body as a whole and is more "holistic", for lack of a better word. This doc I found to be much more in tune with thyroid. Also, he will prescribe armor. Many docs won't. Granted, I don't need armor, but it does show some insight to him as a doctor if he is willing to prescribe. He will be a doc that I would request seeing if my thyroid gets out of wack.
So, an idea that someone told me here and that I did do was to ask a pharmacist in town who prescribes armor. Also, I attached Mary Shomon's link to top thyroid docs. It's hard waiting so long and hoping that you scored a good doctor- this may guide you in the right direction...
http://thyroid.about.com/cs/doctors/a/topdocs.htm
Remission is when your FT4 is at its place on the smallest amount of ATD's regardless of where the TSH is at. Chances are really good that if you go off meds your FT4 will still be to low. About 20% of those of us that has Graves will swing hypo after remission. I am one of those.
Antibody levels can be confusing. Although we can use them to gage remission...it is not written in stone. Those of us who have been forced hypo for extended periods of time will show a higher TSI reading. Getting your FT4 up to where it should be will help lower them and stop making them...however...if you have graves you will always test positive regardless of how long your levels have been at a good place.
You are at decision time. Go off meds and see how you do...or continue on a small amount of ATD and feel like crap...or find a doc that will do block and replace. If these were my labs...I would try going off meds and see how I do with the plan of finding a doc that would be willing to supplement me with a small amount of T4...there is little to loose and lots to gain...but that is just my opinion...Big Hugs...Kathy
Through this site, research and Most of all You Guys, I have learned SO much and still am learning. Praying that I am in remission. I think I could be :) Thank you .. I will keep you updated, Don't worry I'll post those labs in July..
Just saying... You guys make a difference in my life. If I stayed on the 5mg like my doctor wanted until mid June. I would probably be Hypo now. Thank You all again :)