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...
The key to feeling well while having Graves disease is to take a meds dose that will get our thyroid hormone levels to our best place and keep us there.
If you are not familiar with this concept, please read this thread I wrote about it:
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/8391589
When we are first Dxd, our thyroid hormone levels (FreeT4 & FreeT3) are over-range and we most often have hyPER symptoms.
Our docs prescribe ATDs (anti-thyroid drugs such as Tapazole/methimazole or PTU) to bring our thyroid hormone levels down into range and keep them there.
If our starting FreeT4 level is within the normal range and our FreeT3 level is above-range, we have a form of Graves disease called T3 Thyrotoxicosis.
If that is the case for you, you do NOT necessarily need to take an ATD.
Beta-blockers (such as Inderal, propranolol, etc.) actually perform double-duty in this case. Not only do they reduce the cardiac symptoms associated with too-high FreeT3 levels, they can actually bring them down.
So, if you have T3 Thyrotoxicosis, it is appropriate to start with JUST a beta-blocker.
Our starting ATD dose is determined by how over-range our thyroid hormone levels are and there are published guidelines for this.
Our starting dose accomplishes two things. First, it rids our thyroids of all the excess hormones that had been stored as we were developing Graves. In addition, it helps bring our thyroid hormone levels back into range.
If we are prescribed an appropriate starting dose, we can expect our thyroid hormone levels to land nicely in-range after 6-8 wks.
At that point, we no longer have excess thyroid hormones we just need to take a dose that will help us maintain things.
This means our new dose moving forward will be much less than our starting dose often half.
Since our FreeT4 level is the most reliable indicator of thyroid function, that level is used to make dosing decisions.
Remember, our TSH value is NOT to be used for dosing decisions.
Our treatment goal is to stabilize at a Free T4 level where we feel best. For most of us, that is at least mid-range Free T4.
So, if our starting dose landed us at a mid-range FreeT4 level or FreeT4 lower than mid-range, we would definitely want to move forward with a dose that is no more than half of the starting dose. (for example, if our starting dose was 10mg Tap/meth, wed drop down to 5mg100mg PTU starting dose would drop down to 50mg).
Now, if our starting dose brought us to a FreeT4 still over-range or at the very top of the range, the dose moving forward would most likely be of the starting dose.
Hopefully, youve been dividing your ATD dose all along. If not, please consider doing this. Heres a link to a thread I wrote explaining why:
http://www.dailystrength.org/c/Graves_Disease/forum/8418425-once-daily-dosing-myth
Once we start our new dose, it is appropriate to lab within 4-6 wks MAX since it takes, on average, 4-6 wks. for a new dose to reflect in our FreeT4 levels.
We then look at our labs and, if our FreeT4 level is not at least at mid-range, we would reduce our dose to the next level down.
For example..if we are taking 7.5mg Tap/meth, we would drop down to 5mg. 75mg PTU would drop down to 50mg.
We keep following the same pattern until we find a dose that keeps us at least at mid-range FreeT4 for a few months.
If the same dose keeps us at this level and feeling good, then we can safely start labbing every 8 wks. and tweak our dose to maintain this FreeT4 level.
If we try on a FreeT4 level that is at least at mid-range (most people feel good here) for a few months and we have hyPO symptoms, that is a sign that the FreeT4 level is too low for our bodys needs.
It would be appropriate to reduce our ATD dose to the next level down to increase our FreeT4 level and see if the higher level makes us feel better.
If we try on at least mid-range Free T4 for a few months and have hyPER symptoms, then that means the level is too high for YOU and you would tweak your ATD dose up to the next level.
Please realize that it is not uncommon to have transient hyPER (or even hyPO) symptoms after a dose adjustment. Do NOT change your dose without running labs first. Labs and symptoms tell the true story.
Making small dose adjustments helps to minimize any symptoms. This also allows for more stable thyroid hormone levels. Slow and steady wins the Graves race.
Many people can stay at what is called their maintenance dose for months, even years.
Some of us require lower and lower doses to maintain our best place FT4 and ultimately wind up not needing meds at all that is how we wind up in remission.
If we are being medicated properly, all of us will have suppressed TSH for much of our Graves journey and most of us will have at least mid-range FreeT4 and FreeT3.
In summary, if your FreeT4 level is too low for YOU, you want to decrease your ATD dose.
If your FreeT4 level is too high for YOU, you want to increase your ATD dose.
This will be posted in the permanent Groups section on here under "Graves' Disease General Info"
Please note:
I have done a TON of research since my Graves Dx in June 2007. Not only have I read the highly recommended Thyroid for Dummies by Dr. Alan Rubin and Graves Disease A Practical Guide by Elaine Moore, Ive read medical textbooks, thyroid textbooks, medical journal articles and studies as well as information found on the extensive number of thyroid websites out there.
I actively participate on several thyroid forums. The information I share with you here is based upon what Ive learned and it works. Please let me know if youd like to see backup documentation for anything I share with you. I will gladly supply links to medical journal articles, writings by Elaine Moore and/or chapter and page information for the books Ive read.
If you are not familiar with this concept, please read this thread I wrote about it:
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/8391589
When we are first Dxd, our thyroid hormone levels (FreeT4 & FreeT3) are over-range and we most often have hyPER symptoms.
Our docs prescribe ATDs (anti-thyroid drugs such as Tapazole/methimazole or PTU) to bring our thyroid hormone levels down into range and keep them there.
If our starting FreeT4 level is within the normal range and our FreeT3 level is above-range, we have a form of Graves disease called T3 Thyrotoxicosis.
If that is the case for you, you do NOT necessarily need to take an ATD.
Beta-blockers (such as Inderal, propranolol, etc.) actually perform double-duty in this case. Not only do they reduce the cardiac symptoms associated with too-high FreeT3 levels, they can actually bring them down.
So, if you have T3 Thyrotoxicosis, it is appropriate to start with JUST a beta-blocker.
Our starting ATD dose is determined by how over-range our thyroid hormone levels are and there are published guidelines for this.
Our starting dose accomplishes two things. First, it rids our thyroids of all the excess hormones that had been stored as we were developing Graves. In addition, it helps bring our thyroid hormone levels back into range.
If we are prescribed an appropriate starting dose, we can expect our thyroid hormone levels to land nicely in-range after 6-8 wks.
At that point, we no longer have excess thyroid hormones we just need to take a dose that will help us maintain things.
This means our new dose moving forward will be much less than our starting dose often half.
Since our FreeT4 level is the most reliable indicator of thyroid function, that level is used to make dosing decisions.
Remember, our TSH value is NOT to be used for dosing decisions.
Our treatment goal is to stabilize at a Free T4 level where we feel best. For most of us, that is at least mid-range Free T4.
So, if our starting dose landed us at a mid-range FreeT4 level or FreeT4 lower than mid-range, we would definitely want to move forward with a dose that is no more than half of the starting dose. (for example, if our starting dose was 10mg Tap/meth, wed drop down to 5mg100mg PTU starting dose would drop down to 50mg).
Now, if our starting dose brought us to a FreeT4 still over-range or at the very top of the range, the dose moving forward would most likely be of the starting dose.
Hopefully, youve been dividing your ATD dose all along. If not, please consider doing this. Heres a link to a thread I wrote explaining why:
http://www.dailystrength.org/c/Graves_Disease/forum/8418425-once-daily-dosing-myth
Once we start our new dose, it is appropriate to lab within 4-6 wks MAX since it takes, on average, 4-6 wks. for a new dose to reflect in our FreeT4 levels.
We then look at our labs and, if our FreeT4 level is not at least at mid-range, we would reduce our dose to the next level down.
For example..if we are taking 7.5mg Tap/meth, we would drop down to 5mg. 75mg PTU would drop down to 50mg.
We keep following the same pattern until we find a dose that keeps us at least at mid-range FreeT4 for a few months.
If the same dose keeps us at this level and feeling good, then we can safely start labbing every 8 wks. and tweak our dose to maintain this FreeT4 level.
If we try on a FreeT4 level that is at least at mid-range (most people feel good here) for a few months and we have hyPO symptoms, that is a sign that the FreeT4 level is too low for our bodys needs.
It would be appropriate to reduce our ATD dose to the next level down to increase our FreeT4 level and see if the higher level makes us feel better.
If we try on at least mid-range Free T4 for a few months and have hyPER symptoms, then that means the level is too high for YOU and you would tweak your ATD dose up to the next level.
Please realize that it is not uncommon to have transient hyPER (or even hyPO) symptoms after a dose adjustment. Do NOT change your dose without running labs first. Labs and symptoms tell the true story.
Making small dose adjustments helps to minimize any symptoms. This also allows for more stable thyroid hormone levels. Slow and steady wins the Graves race.
Many people can stay at what is called their maintenance dose for months, even years.
Some of us require lower and lower doses to maintain our best place FT4 and ultimately wind up not needing meds at all that is how we wind up in remission.
If we are being medicated properly, all of us will have suppressed TSH for much of our Graves journey and most of us will have at least mid-range FreeT4 and FreeT3.
In summary, if your FreeT4 level is too low for YOU, you want to decrease your ATD dose.
If your FreeT4 level is too high for YOU, you want to increase your ATD dose.
This will be posted in the permanent Groups section on here under "Graves' Disease General Info"
Please note:
I have done a TON of research since my Graves Dx in June 2007. Not only have I read the highly recommended Thyroid for Dummies by Dr. Alan Rubin and Graves Disease A Practical Guide by Elaine Moore, Ive read medical textbooks, thyroid textbooks, medical journal articles and studies as well as information found on the extensive number of thyroid websites out there.
I actively participate on several thyroid forums. The information I share with you here is based upon what Ive learned and it works. Please let me know if youd like to see backup documentation for anything I share with you. I will gladly supply links to medical journal articles, writings by Elaine Moore and/or chapter and page information for the books Ive read.
I have a rhetorical question... what if you think you need to alter your dosage, but your doctor disagrees with you. You see someone else, same thing. Is it possible/healthy to self-medicate if one was as informed as you (although it seems pretty basic), and able to get blood tests every 4-6 weeks?
Hmm.. Then I guess how would you get the prescription...
I saw a succession of endos since my Dx in June 2007 - they all did not know how to medicate.
Mind you, it took me way too long to stop second-guessing myself with endo #2 - I had to fight for dose adjustments the entire time she cared for me. I truly "dated the wrong guy for too long" with her and I suffered as a result.
You see, while she told me she went by symptoms first, then labs, she still had a minimum (unrealistic) TSH value she wanted me to "show". And, she was not aware of what I call "best place FT4".
i would bring in books, medical journal articles, etc. to confirm my requests and she give some lame comment to dispute it all. If I stuck to my guns and followed the advice I give on here, I would not have spent as much time in hyPOhell as I did. Hindsight was truly 20/20 for me.
When I finally decided to move on, I decided to meet with new docs, get labs done and make my own dosing decisions until I found a "keeper".
I made sure I had an adequate supply of methimazole (I use a mail-order pharmacy and get 3 months' worth at a time).
I made a succession of appointments with different docs so I would be sure to get labs done with the frequency I knew was appropriate for me.
Endo #3 lasted until she read off the first set of labs she ran for me. She made an incorrect assessment of my condition, gave the wrong reasons for it and made a dosing decision that would have put me into a deeper depth of hyPOhell than any other I'd been in.
I did what I knew was right re my dose and interviewed my next Graves' doc, an internist who understands all things Graves' - I'm still seeing her. I cancelled the appointments with the other docs "in line" :)
The best part of choosing ATD's as your treatment choice is you CAN get a Rx for your meds when you see a doc. You have Graves' and your thyroid hormone levels are elevated.
Your doc might Rx too high a dose - just take less and then lab again within 4-6 wks if this doc is willing or make sure you have another appt with a new doc within that timeframe :)
That is the sad reality of the situation but what many of us were forced to do.
Gotta tell you, if you had RSI or surgery, you'd need thyroid hormone replacement meds.....docs that don't know how to medicate properly (as in my first 3 endos who all pushed RAI/surgery), won't Rx enough - THAT is where patients have trouble.....very hard to get MORE meds.
Peeps taking ATD's can get meds much easier and, since they are often told to take too many, can accumulate a surplus :)
I have a years' supply of methimazole if I was taking 5mg/day - I've been off meds since Oct 09 :) ..... my FreeT4 level has been holding steady at mid-range and I am feeling great!
thanks so much :)
Only you can tell how you feel. The docs can only go by lab results. If your in the mid to low range there happy. For me mid to low range is not good. I am at my best with my FT4 above mid range. So, in order to feel well you must understand your levels in relation to how you feel and reduce accordingly. Big Hugs...Kathy