Yes, unfortunately, dealing with thyroid disease requires a patient patient.
If you think dealing with anti-thyroid drugs is bad, you don't even want to know about thyroid hormone replacement that's needed to treat hypothyroidism.
As you will note from my signature, I've been at both ends of the spectrum. Thankfully, I learned what I needed to know to feel well while having thyroid disease and, most importantly, partnered with a thyroid-savvy doctor (after dealing with 3 clueless endos and a now-former clueless GP).
Graves' patients taking anti-thyroid drugs rarely have to worry about a too-low FT3 level but, yes, most people need both their FT3/FT4 levels in the upper parts of the range.
TSH stays low until remission is imminent....this is all due to the Graves' antibodies.
So, when TSI starts to go down, TSH should increase. Please try to remember that the "return" of TSH indicates remission ONLY IF the FT4 level is in the upper part of the range.
Now, some Graves' patients never experience the return of TSH (except when overmedicated). This is what happened to me.
Please realize that remission is defined as "absence of disease" so, you could be in remission (not hyperthyroid) with suppressed TSH.
You see, as we move forward in our journeys, some of us not only have TSI which stimulates the thyroid to produce hormone (and suppresses TSH) but, we also develop TBII, which is a Graves' antibody that blocks the production of thyroid hormone (and suppresses TSH).
Sometimes, the presence of TBII will negate the effects of TSI and make the patient euthyroid (normal thyroid function) but, with suppressed TSH. This is called subclinical hyperthyroidism and wouldn't require treatment.
Other times, the ever-powerful TBII over-ride the effects of TSI and make the patient hypo (with suppressed TSH).
I was at the "middle stage" when I went off ATD's and am now hypo due to TBII. The hypothyroidism can be temporary but, just like hyperthyroidism, it needs to be treated.
I cannot emphasize enough that you need to make sure your doctor keeps you on the lowest possible ATD dose that will maintain your FT4 level in the upper half of the range, regardless of TSH.
Otherwise, you will have hypo symptoms. Since hypo/hyper symptoms can overlap, it's hard to know just what's going on sometimes. That's why labs are so important to make sure the FT4 level is being maintained in the upper half of the range.
Being hypo is stressful to the body and stress increases antibody production. Antibody production is what got us sick in the first place.
My TSI increased significantly within a year of me being on ATD's. My first two endos overmedicated me and I was hypo under their care (with "normal" but, below mid-range FT4) - both endos had the erroneous goal of increasing my TSH.
(If you read some of the other threads on here, you will note that TSH is the bane of every thyroid patient's existence - whether they are dealing with hyperthyroidism or hypothyroidism.)
I often wondered if being overmedicated/hypo for so long put me on my current path.
Hindsight is often 20/20.....and that's why I'm here - to try to help fellow Graves' patients not suffer the same fate I did.
While this thread is getting pretty long, there are actually others that are even longer. It's nice to have your story all in one place but sometimes, with all that can happen along the way, it's a good idea to start a new thread.
Thanks, my day is great - the sun is shining so I'm happy.
Thanks for all this great info...I always go back to your posts and read up on things I've forgotten or that's not in the books/online. I also found 2 other sites that are very helpful -- Elaine Moore and Dailystrength. Lots of awesome info, esp EM.
So...endo also has said I will be on meds for at least 2 years. She STRONGLY advised me not to get pregnant either, which is the most difficult aspect of all this for me...I've done research online and in books and it seems the "facts" are contradicting to one another. And I am curious if it's because endo has me on MMI and not PTU...I'm confused. I won't get pregnant if meds are harmful to the fetus and doc says so. Is it worth speaking to my OB?
Do you have any recommendations for good supplements to take? I have been taking Omega 3 Fish Oil capsules but not consistently.
All of the information I've shared is from my collective research over the past 4+ years.....there's a lot of information out there and I've found that the most recently-published information is the most accurate.
It's really taken the medical community a long time to properly research Graves'. Truly, the ground-breaking study about TSI affecting TSH for a long time was only completed in the early 2000's.
I'm glad you found some useful sites. Quite honestly, EM's is much more accurate than the other one. I have found that the other site has lots of outdated information.
EM has Graves', has a medical background and keeps up with the latest-greatest medical research related to Graves', other autoimmune disorders and health conditions.
I think it would be best to focus on the more recent research as far as pregnancy and ATD's are concerned.....EM is a great resource on that topic but, I really think you should also ask your OB/GYN about it.
I, too, have read conflicting information but, it's mostly along the lines that some studies (and what EM says) say that MMI doses of 10mg or lower are safe during pregnancy. Other studies recommend PTU for the first trimester (because it doesn't cross the placental barrier as easily as MMI) and then MMI for the other trimesters to reduce the chance of maternal liver issues that PTU can sometimes cause. Many women find that they go into remission during the third trimester (but, hyperthyroidism usually returns after childbirth).
I've been participating on several thyroid forums for almost 5 years now. I am aware of women getting pregnant and having healthy babies while taking ATD's yet, I've also read about one woman that gave birth to a baby with birth defects when taking MMI but, the size of her dose wasn't shared.
Just as with any med, it does seem dose size plays a large part in things. Again, speaking with your OB/GYN sounds like a good idea.
EM has lots of great information about supplements and how nutrient deficiencies might precipitate autoimmune disease.
Omega 3 fish oil capsules benefit just about everyone. Whatever you can do to reduce inflammation will benefit you.
It would also be good for you to verify your Vit D level and, if it's lower than 80 (Vit D Council's recommended level for those of us with autoimmune disease), you might want to consider supplementing with Vit D3 which is more readily absorbed and available OTC.
And, to help reduce those TSI antibodies, taking an immunomodulator (also called adaptogen) is a good idea....rhodiola is a popular one as is reishi mushrooms.
A good multi-vitamin is also appropriate - once again, to address possibly any nutrient deficiencies that you might have.
Another supplement worth considering is acetyl-l-carnitine. It's an amino acid that actually interferes with the ability of thyroid hormone to enter cell nuclei. This can help reduce hyper symptoms - especially the transient ones that can happen after a dose decrease.
I used to take 250mg/day with breakfast after any dose decrease. I based my dosing decision on the fact that common side effects are nausea and insomnia.
Now, I also developed the common side effect of headache about a week into my dosing. Well, that corresponds with the average amount of time a person would feel hyper symptoms after a dose reduction so, it was easy enough for me to stop taking it without any ill effects.
It's been about 3 weeks since I've started Methimazole...and I have to say, I really feel good. I still have the occasional anxiety but it is not even nearly as bad as it used to be. I honestly didn't know what to expect from taking ATDs because I was feeling crappy for so long. I didn't remember the last time I felt "normal" and I just didn't know any different.
I have this energy I haven't felt in such a looooong time. I can get through the day w/o and a nap! That is a huge thing for me. Even washing dishes for 15 min would sometimes wear me out...
Just wanted to give you a quick update. I know it's probably a long way out until remission for me but I think I'm definitely headed in the right direction! I'm getting bloodwork done in 1-2 weeks along with livel panel and cbc. Will update with those results soon.
Since you found EM's site - did you also find her online course about Graves'/hyperthyroidism? Searching her name and hyperthyroid disorders should help you find it.
I suggest you go to Lesson 6 Conventional Treatment options and read the anti-thyroid drug section to understand what's involved with proper dosing. This way, you will be armed with good information the next time you see your doctor.
While the doctor started off well (as did my first endo), it's really important to make sure he doesn't drop the ball with your dose moving forward.
I've seen it time and time again on forums - doctors not reducing the dose in false efforts to get TSH to increase.
You are doing so well - I'd like to see it stay that way.
Thyrosoothe is an herbal remedy that is used to treat hyperthyroidism. I don't have any experience with it and don't know of anyone that has used it in the 4+ years I've been participating on multiple thyroid forums, including one devoted to Graves'.
I know EM mentions it but, probably due to the lack of doctor knowledge about it, the use of it just doesn't seem too popular.
I think it's used more often once the hyperthyroidism has been controlled with ATD's and levels are back in-range yet, still need help.
If you're interested in that type of therapy, you'd probably need to see an alternative doctor that can still run labs for you.
Glad you checked in! And, even more so, glad you are on vacay - yay!! Thanks, I'm doing well.
You are very correct that you don't need 10mg - I think a talk with your endo is in order.
You may recall reading EM's online course about Graves'/hyperthyroidism and noting that the anti-thyroid drug section specifically mentions that the patient should take the lowest possible dose that will maintain the FT4 level at mid-range and preferably higher.
This is also documented in updated editions of thyroid textbooks.
So, based upon your lab's ranges, your endo should be adjusting your dose to maintain your FreeT4 level at least at 1.3 and preferably closer to 1.6.
You can see that your FreeT4 level is lower than that....and your FreeT3 level is near the bottom end of the range.
It will be a matter of time before you feel those levels in the form of hypo symptoms.....hypo symptoms aren't fun at all...my first-ever thyroid forum referred to the state of being hypo as being in hypohell.
Staying on 10mg will just drive those levels lower. Hypo levels can cause an increase in antibody production. Well, antibody production is what got us sick in the first place - right?
Thyroid-savvy doctors halve the starting dose once the patient's FT4 level gets back into the normal range.
I'm so glad you're feeling great - getting your endo to reduce your dose will keep you feeling that way.
So frustrating...I knew there was a red flag waving in my face when endo first refused TSI test. Called her first thing in the morning to express concern that I believed dosage was too high (spoke with the nurse, of course).
Anyway, nurse says she looks at TSH and I said why would she do that? TSH stays suppressed forever, my FT3,4 looks good, I feel great. Symptoms are less than minimal and my body did a 180.
She discussed with endo, called me back and cut my dosage from 10 to 5mg/day. Now, who is the doctor here? If I said I want to completely go off meds, would she have said yes? I am glad she seems to be one foot on the same boat as me. But I am frustrated that I needed to initiate it all.
I am wondering if 10 to 5 was too big of a jump, what do you think? Labs are in 6 wks...
In the midst of all of this, I was looking for an internist in my area and found one that actually HAS Graves. Come to find out, she only practices very infrequently as an urgent care doctor now. ARGhhhHHHHhh...what does it take to find a non-incompetent doctor around here?!
Sorry to rant, needed to vent. I know you understand where I'm coming from. :-) Thanks for everything and I will continue to keep you posted.
Last edited by Administrator; 03-26-2012 at 05:00 PM.