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...
This ones a keeper folks. Courtesy of the American Thyroid Association.
http://view.liebertpubmail.com/?j=fe6c17707463067d7314&m=ff281776736c&ls=fdc91573776004747115797666&l=fe5e157877600c757714&s=fe27107677620378751373&jb=ffcf14&ju=fe2f1775766c017d741576&r=0
whoa...that looks too long.
Here's a tinyURL version of the same thing, so it should work for you.
http://tinyurl.com/b5j89g7
Carol, Kathy and Brans.. special interest to you guys since this explains why some of us at remission end up with more TSH receptor blocking antibodies that stimulating ones..thus need replacement hormone , sometimes forever and some times just for awhile. It's all about those antibodies.
Colleen,
I know since your new this is going to be hard to understand..heck it's giving my brain cramps. :) But you said your husband is a numbers guy and interested in how this all works. This does show how you came to us with elevated TSI and elevated TRAbs.. thus your low on hormone but have Graves'.
In fact.. your husband can help me here. I'm not sure how to save this for the future. I think if I only save it to my desktop, once it goes off line, I loose it. Right ?
I did print it out, but I would prefer having it on my computer because the four pages of references is GREAT. Lots of studies we have used in our groups, all in one place. Since I recently lost my old computer to some sort of electrical apocalypse ... this starting over saving links for you new people is complicated. This would shorten the process for me.
Here's the preview for the second chapter provided:
Many clinicians remain perplexed by patients with autoimmune thyroid disease who swing from hypo- to hyperthyroidism, or vice versa. These undulations, which arise because of alterations in the relative levels and potencies of antibodies blocking or stimulating the TSH receptor, are discussed in a thought provoking review by Drs. McLachlan and Rapoport.
http://view.liebertpubmail.com/?j=fe6c17707463067d7314&m=ff281776736c&ls=fdc91573776004747115797666&l=fe5e157877600c757714&s=fe27107677620378751373&jb=ffcf14&ju=fe2f1775766c017d741576&r=0
whoa...that looks too long.
Here's a tinyURL version of the same thing, so it should work for you.
http://tinyurl.com/b5j89g7
Carol, Kathy and Brans.. special interest to you guys since this explains why some of us at remission end up with more TSH receptor blocking antibodies that stimulating ones..thus need replacement hormone , sometimes forever and some times just for awhile. It's all about those antibodies.
Colleen,
I know since your new this is going to be hard to understand..heck it's giving my brain cramps. :) But you said your husband is a numbers guy and interested in how this all works. This does show how you came to us with elevated TSI and elevated TRAbs.. thus your low on hormone but have Graves'.
In fact.. your husband can help me here. I'm not sure how to save this for the future. I think if I only save it to my desktop, once it goes off line, I loose it. Right ?
I did print it out, but I would prefer having it on my computer because the four pages of references is GREAT. Lots of studies we have used in our groups, all in one place. Since I recently lost my old computer to some sort of electrical apocalypse ... this starting over saving links for you new people is complicated. This would shorten the process for me.
Here's the preview for the second chapter provided:
Many clinicians remain perplexed by patients with autoimmune thyroid disease who swing from hypo- to hyperthyroidism, or vice versa. These undulations, which arise because of alterations in the relative levels and potencies of antibodies blocking or stimulating the TSH receptor, are discussed in a thought provoking review by Drs. McLachlan and Rapoport.
This is only available for two weeks, starting Feb 4th. 2013
Elaine had explained the blocking antibodies thing to me and I've been hoping against hope that I will eventually enter remission from all. I remember her telling me that some people have blocking antibodies for easily 4 years after remission.
I'm coming up on 3 years taking replacement.....
And, for whatever it's worth, the site has options for full text.pdf and full text .pdf with links.
I saved the .pdf with links on my comp and also emailed a copy of it to myself.
I've been maintaining email folders for my thyroid research so the info will always be available to me no matter what computer I'm using (and if one crashes).
cd:
I don't bother trying to save anything anymore...(sigh)
{{{hugs}}} :-)
I was pretty sure this could be useful to you. Good. :)
Being a self pay customer my trip through all this is a bit different and based on Elaine,s help, the kazillion studies I've ploughed though, and my gut feeling after I've accumulated enough facts.At two years on replacement hormone after my PTU years, I noticed I no longer reacted to my personal trigger foods and stress like I had before. So without antibody testing ( we only had TSI, not TBII at the time, so what was the point really ) I chose to just stop my T4. I know standard practice is lowering it slowly, but it felt right for ME. Sort of like pushing a manual car to jump start it. LOL
Had about a week and a half when it felt like I might be dropping, but then everything just kicked into gear and all has been fine ever since. No, I don't recommend this method to patients now. We do have accurate lab tests available, and with the new self testing places, there's no reason for anyone to 'just wing it' anymore.
But I figured at that point, what my personal risks were and what the solution was IF it didn't work. Since I am in no danger of a doctor pushing RAI on to me since I pay them directly with no insurance company in the middle, I was able to take the bigger" risk". So many times I kept my checkbook on the desk during appointments, and when things were going a direction I didn't like, I picked it up, bumped it on my hand and reminded the doctor I " had a budget" looking respectful but concerned ...continuing the conversation then always went my way. Funny that..
I'll go email this to myself. Great idea ! Thank you !
BTW.. I've added a few more links I remembered in our general group this evening.
http://www.dailystrength.org/groups/graves-disease-general-info
I really need to learn my new computer ( Windows 8 and I love it but it's really different ) better and get things organized so I can start saving the great links I've seen you post.
You go girl ! :)
Brans, your a swinger ? Oh.. a switcher. LOL
Linda,
I know the balance of your mix of autoimmune disease has always been your unique challenge. My hat's off to you as you do such a good job of it.
But you know, to me, all this time down the road, if needing to take an ATD to carefully control thyroid levels of our human produced hormone is what I would need to do, that's what I will do. Everything I've read points to this being so much better for the body that either synthetic or pig hormones... they still don't know all the types of hormone our thyroid produces, nor can they make a pill that delivers the hormone on an as-needed basis, the way our body is designed to do.
I know you've heard me say it before, but I'll say it again. While I would prefer not needing to spend the time and money to go to the doctor for ATDs, other than that, I really haven't cared for a long time if I were to relapse and need my PTU for awhile, or forever.
I would care a LOT if I were to slide hypo. Even my best doctors refused to write the scrip for enough hormone for me to feel right. If I hadn't the experience, I would have been left to rot slowly in that hypo state. Begging and borrowing from my post RAI friend ( who accidentally lost her new prescription.. wink. wink ) and supplementing my scrip that last 18 months was the only way I manged to keep my job and my home.
While at the same time, I did not really feel as good as I do now on my own hormone. It felt like being a bit robotic.. in over drive, compared to the way my body produces hormone.
For me... I do not do hypo well..at all !
Please greater power.. never let me go hypo.
When I think of all those many years when I was undiagnosed "slightly' hypO prior to GD, is it any wonder I still feel my best just slightly hypO? The minute I become even just slightly hypER has me climbing the walls in panic. My body is so used to performing under drive rather than over drive. But then I was going hand-in-hand with Adrenal insufficiency (or fatigue) almost constantly.
Guess we are all so different with the thyroid disease.
{{{hugs}}} :-)
I live in Canada and our social medical system does not include antibody testing as regular thyroid testing...there has to be a medical reason to get this test because of the expense...I no longer qualify. I'm not sure if its the antibodies that are causing me to go slightly hypo or age...I'm 56. My doc seems to think that the simple aging process slows our thyroids down. I'm wondering...how can you tell the difference between antibodies and aging without taking the test?
The last time I had the TSH Rec Ab done was a little over a year ago and it showed very low and indicated I was still solidly in remission. Any thoughts? Big Hugs...Kathy
From what I'm gathering from my research, our Graves' antibodies can sometimes cause the thyroid to atrophy.
Well, an atrophied thyroid might not function as well as a healthy thyroid.
And, for whatever it's worth, Elaine Moore told me awhile back that the blocking TRab (the Graves' antibodies that can make us hypo) are very powerful so, even a low level of TRab (vs 0) could mean there are enough blocking antibodies there to cause hypothyroidism - especially if the patient no longer has any TSI to balance things out.
Bottom line - I'm glad you're feeling well!!
You were right- a bit confusing to me, being a newbie and all, but I started to read through it slowly and took a look at the charts. There is a bit of info concerning pregnancy as well... I'm starting to compile articles and information- thanks for the new edition! Much appreciated!
Well, I still have not found the info I've been looking for regarding the # of TSI antibodies considered safe during pregnancy. Long ago, in the first group I was part of, at one point it became what some of us privately referred to as the "Graves', pregnancy group". Gosh, we had so many on ATDs and pregnant, but since I was in the Peri-menopause time of my life, I read since it was interesting, but didn't memorize stuff.
But I do remember that there was a number for acceptable TSI antibody results for the gals wanting to get pregnant. We didn't have access to TRab tests back then. I keep thinking the number was something like 400, with the reference range being % of activity being 125 and 129, which were the first two ranges on tests out then.
I do remember the acceptable limit for the ATDs was 200 mg for PTU and 20 mg for Tapazole ( MMI became that generic later). Well, there was the gal whose doctor kept her on either 600 or 800 mg of PTU and hypo..and her little boy was born fine, but that's another story.
Well, eventually we'll find this info concerning acceptable antibody levels and pregnancy, but till then you managed to start my interest again. I've added a little more in the General Group for reference for all of us later.
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/15644900
I'm extremely reluctant to be taking any medications while I'm pregnant. For me to get pregnant in the first place- I'll be injecting progesterone in my butt and heparin subcu in my stomach- just can't bring myself to do yet another med. I walk on egg shells after an embryo transfer and hold my breath in early pregnancy. I would be worried the entire time if PTU or MM would be impacting my baby. May sound strange, due to research and how many people take ATD during pregnancy, but I am shooting for another road. I'm holding out for remission, if I achieve that I'll wait a number on months to give my body a chance to heal, then attempt pregnancy without being on ATDs. These little embryos I worked so very hard for- I can't stomach the chance of something happening to them and exposing them to meds that may be deemed safe. I know the heparin doesn't cross to the placenta- I'd be a no-go otherwise. I'm not intending to sound uneducated and deny research- my heart just overtakes my head with this one...
With that being said- I'll definitely be speaking to my endo about safe antibody levels and if I can attain them. By body's reaction to the ATDs was labeled as "imminent remission expected" by my old endo- we'll see what my new one says...
Thanks for the link! More info for me to dive into :) You're awesome, Pam :)
Why don't you ask Elaine Moore about acceptable antibody levels during pregnancy?
http://elaine-moore.com/QA/tabid/57/forumid/6/scope/threads/Default.aspx