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...
Several weeks ago I emailed the Thyroid Foundation of Canada, asking if they had a directory of Endocrinologists in my area. This is their response;
"Dear Michele:
Apologies for the delay in answering your email, we have just had our annual meeting and things have been hectic preparing for it. Unfortunately we don't know of any endocrinologists in particular who use alternative methods or who would work with you as you described. The best thing for you to do is to read up on the subject as much as possible - there is a lot of good information on our website, but be careful - there is a lot of misleading information on the internet. The more informed you are about your condition and treatment the more your doctor may be likely to discuss your treatment in more depth. These doctors have had specific training for treating various disorders and that is what they have to follow. While some patients do go into remission, it is more likely you won't. Nobody likes the idea of RAI or surgery, but it does work.
I wish you success in getting better soon.
Katherine Keen
Thyroid Foundation of Canada"
I was VERY dismayed by this.... am I being over-sensitive to want to respond by saying "Who are you to tell me that I likely won't go into remission?" This the THYROID FOUNDATION OF CANADA and they have no helpful contact information to provide? They have nothing more on their website than basic information... I have received more information from this group than ANYwhere else I have looked. It's very discouraging, to say the least.
"Dear Michele:
Apologies for the delay in answering your email, we have just had our annual meeting and things have been hectic preparing for it. Unfortunately we don't know of any endocrinologists in particular who use alternative methods or who would work with you as you described. The best thing for you to do is to read up on the subject as much as possible - there is a lot of good information on our website, but be careful - there is a lot of misleading information on the internet. The more informed you are about your condition and treatment the more your doctor may be likely to discuss your treatment in more depth. These doctors have had specific training for treating various disorders and that is what they have to follow. While some patients do go into remission, it is more likely you won't. Nobody likes the idea of RAI or surgery, but it does work.
I wish you success in getting better soon.
Katherine Keen
Thyroid Foundation of Canada"
I was VERY dismayed by this.... am I being over-sensitive to want to respond by saying "Who are you to tell me that I likely won't go into remission?" This the THYROID FOUNDATION OF CANADA and they have no helpful contact information to provide? They have nothing more on their website than basic information... I have received more information from this group than ANYwhere else I have looked. It's very discouraging, to say the least.
I am very grateful to have found my first board over 10 years ago (that I now moderate at). The people there were live savers for me. They taught me how to be proactive with my thyroid health and to research everything. I learned how to heal by avoiding dietary and environmental triggers.
I am sorry you didn't get what you were hoping to find and that the Thyroid Foundation of Canada didn't understand.
I can say that if I saw the first Endo who treated me at the hospital and he crammed RAI down my throat, I would tell him that he had a lot to learn.
{{{hugs}}}
They didn't used to be like that. Something must have changed. I remember over a decade ago they had some sort of loss of interest / loss of leadership ??? How sad this has happened.
Here ya go:
http://www.ncbi.nlm.nih.gov/pubmed/18166819
Quote:
CONCLUSION:
The majority of patients with Graves' disease gradually enter remission of TSH-receptor autoimmunity during medical or after surgical therapy, with no difference between the types of therapy. Remission of TSH-receptor autoimmunity after radioiodine therapy is less common.
So really it comes down to how do you want to spend the rest of your life..with or without the most important gland in your body. Keeping in mind, humans can never create replacement hormone at the quality and as needed flow like mother nature has created.
Don't let the outdated stick-in-the-muds get you down.
I just received a call from the Endo's office in reference to the bloodwork I had done on Friday. He says that I can stay on my current dose, but he doesn't know yet that I haven't increased it, as he recommended from my last labs on April 29th... when he said I should triple it again. My current labs still indicate that my TSH is suppressed, but because it's been like that for a while, they aren't concerned.
My new labs are;
FT4 = 10.3 (9.0-23)
FT3 = 4.7 (3.5-6.5)
TSH less than 0.03 (0.20-4.00)
Apr 29 2013
FT4 is 15.3 (9.0-23.0)
FT3 is 7.6 (3.5-6.5)
TSH is still less than 0.03 (normal 0.20-4.00)
Mar 26 2013
FT4 = 15 (9.0-23.0)
FT3 = 6.4 (3.5-6.5)
TSH less than 0.03
Feb 28 2013
TSH less than 0.03, (0.20-4.00)
FT4 25.5, (9.0-23.0)
FT3 11.1 (3.5-6.5)
Feb 5 2013
TSH less than 0.03, (0.20-4.00)
FT4 79.1, (9.0-23.0)
FT3 - not on this lab
Jan 22 2013
TSH less than 0.03 (0.20-4.00)
FT4 69.4, Reference Range 9.0-23.0 (pmol/L)
FT3 - not on this lab
I am currently taking 100mg a day - 25mg twice a day and 50 in the evening, as recommended here... I am wondering if I should reduce it a bit more to bring my FT4 up at the higher range? Can that be done without increasing the FT3, or do I even need to worry about that?
Your insight is always appreciated ladies, thank you!
Oh, and the endo wants to see me in September for a follow up... is that normal? 7 months after initial appointment?
Thank you
I wish you could find another doctor as with this one dosing according to the TSH is bad. :-(
{{{hugs}}}
Usually the FT's follow each other unless you have a problem specific to the FT3. When you are hypo...like you are now...taking less meds does not effect the FT3 movement much...your meds drastically effect the FT4. Even though you are really hypo...your FT3 is just under mid range...I suspect that when you reduce your meds and your FT4 comes back up...your FT3 will also come up to where it is supposed to be....at mid range or just slightly above.
I agree with mmz...you need to reduce and find a new doc...Big Hugs...Kathy
Anyhow, don't let that get you down. The girls are right. I'd feel like total sh!t if those were my labs. We're in the same city. If you like some help with finding a good doc, let me know. I would love to help!
Take care hun xo