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...
You know, I've been thinking (dangerous thing).
Some of you might have read my "best place FT4" thread
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/8391589
Gotta tell you, if I followed my own advice during MY Graves' journey, I would have fared SO much better.
You see, I allowed myself to get confused and second-guessed myself.
Thyroid forum peeps consistently told me to shoot for mid-range FT4 because most people feel best there.
They also talked about "setpoint" which is the same thing as the concept I call "best place FT4".
In hindsight (which is SO often 20/20), I realized how I screwed up.
Most of my Graves' journey was spent under the care of endo #2 who had unrealistic goals for my TSH and was not aware of the "best place FT4" concept.
Now, I felt great after my starting dose brought me to FT4 1.59 - range back then was .61-1.76.
I never got to "see" that level ever again 'cuz endo #1 overmedicated me.
By the time I started with endo #2, my FT4 was at the bottom end of the range and she wanted to be conservative with my dose reductions.
Now, thyroid forum peeps often told me "slow and steady wins the Graves' race" so conservative dose reductions are appropriate..
I'd feel better after a dose reduction.....only thing, that dose reduction never resulted in my FT4 getting up to mid-range
Because I was feeling better, endo #2 wanted me to stay at the same dose and I (in hindsight) stupidly agreed.
By the time of my next set of labs, my FT4 had dropped down to the bottom end of the range and I had developed hyPO symptoms.
And so things went on.....
My FT4 level never got to mid-range but it did slowly increase after a dose reduction.
There came a time 18 months into my Graves' journey when I developed some minor hyPER symptoms just before an appointment with endo #2.
She ran labs and my FT4 had just hit mid-range.....my TSH was not at her comfort level, she expressed her concerns that I was going hyPER and insisted that I increase my dose somewhat.
I (in hindsight) stupidly agreed in the thought that my setpoint (aka "best place FT4") just might be below mid-range since I did have those recently-developed hyPER symptoms.
That was my biggest mistake.
I soon learned that those minor hyPER symptoms I was having were the all-too-common TRANSIENT hyper symptoms a person can have when their FT4 level is moving up (often after an ATD dose decrease)
My FT4 dropped to the bottom end of the range,and I developed hyPO symptoms.
After that, I fought with endo #2 for dose reductions for what became the final months of my Graves' journey.
The dose reductions were never enough and I went into a deeper depth of hyPOhell than any other I'd ever experienced.
I wound up taking myself off 1.25mg methimazole 'cuz I just couldn't function. I later discovered that I was in remission!
If I followed the suggestions of thyroid forum peeps and Elaine Moore, I would not have made the biggest mistake I made during my Graves' journey.
I suffered with significant hyPO symptoms because I did not allow myself to "try on" mid-range FT4 for a few months.
That is why I wrote my "best place FT4" thread.
Please, do not repeat my mistake......"try on" mid-range FT4 for a few months - it just might be the best thing you do for yourself on your Graves' journey.
Some of you might have read my "best place FT4" thread
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/8391589
Gotta tell you, if I followed my own advice during MY Graves' journey, I would have fared SO much better.
You see, I allowed myself to get confused and second-guessed myself.
Thyroid forum peeps consistently told me to shoot for mid-range FT4 because most people feel best there.
They also talked about "setpoint" which is the same thing as the concept I call "best place FT4".
In hindsight (which is SO often 20/20), I realized how I screwed up.
Most of my Graves' journey was spent under the care of endo #2 who had unrealistic goals for my TSH and was not aware of the "best place FT4" concept.
Now, I felt great after my starting dose brought me to FT4 1.59 - range back then was .61-1.76.
I never got to "see" that level ever again 'cuz endo #1 overmedicated me.
By the time I started with endo #2, my FT4 was at the bottom end of the range and she wanted to be conservative with my dose reductions.
Now, thyroid forum peeps often told me "slow and steady wins the Graves' race" so conservative dose reductions are appropriate..
I'd feel better after a dose reduction.....only thing, that dose reduction never resulted in my FT4 getting up to mid-range
Because I was feeling better, endo #2 wanted me to stay at the same dose and I (in hindsight) stupidly agreed.
By the time of my next set of labs, my FT4 had dropped down to the bottom end of the range and I had developed hyPO symptoms.
And so things went on.....
My FT4 level never got to mid-range but it did slowly increase after a dose reduction.
There came a time 18 months into my Graves' journey when I developed some minor hyPER symptoms just before an appointment with endo #2.
She ran labs and my FT4 had just hit mid-range.....my TSH was not at her comfort level, she expressed her concerns that I was going hyPER and insisted that I increase my dose somewhat.
I (in hindsight) stupidly agreed in the thought that my setpoint (aka "best place FT4") just might be below mid-range since I did have those recently-developed hyPER symptoms.
That was my biggest mistake.
I soon learned that those minor hyPER symptoms I was having were the all-too-common TRANSIENT hyper symptoms a person can have when their FT4 level is moving up (often after an ATD dose decrease)
My FT4 dropped to the bottom end of the range,and I developed hyPO symptoms.
After that, I fought with endo #2 for dose reductions for what became the final months of my Graves' journey.
The dose reductions were never enough and I went into a deeper depth of hyPOhell than any other I'd ever experienced.
I wound up taking myself off 1.25mg methimazole 'cuz I just couldn't function. I later discovered that I was in remission!
If I followed the suggestions of thyroid forum peeps and Elaine Moore, I would not have made the biggest mistake I made during my Graves' journey.
I suffered with significant hyPO symptoms because I did not allow myself to "try on" mid-range FT4 for a few months.
That is why I wrote my "best place FT4" thread.
Please, do not repeat my mistake......"try on" mid-range FT4 for a few months - it just might be the best thing you do for yourself on your Graves' journey.
Happy 2nd wk of January all!
Hannah
*But*, the level was/is the blasted TSH - big help that was :(
And, when I think about "my" mistake - it really shouldn't have been "my" mistake - it was the mistake made by ALL of the endos that treated me along the way.
The doctors that treat Graves' disease are often worse than the disease itself :(
I had my usual long-winded response and others gave their take on the matter as well.
Here's a link to that thread
http://www.dailystrength.org/c/Graves_Disease/forum/8751447-effective-atd-dosing
If I had to do it over again...I would not allow the docs to put my on 300mg to start with. When I saw my labs coming down I would reduce right away. I would not allow myself to go as hypo as I did. But this is all in hind sight. Im in remission now...but...if hyper raises its ugly head again....I will take charge in how Im medicated.
Now...I am in no way saying dont listen to your doc...what I am saying is...every person has to take an active part in there own recovery. The only way to do that is to understand your labs in relation to your symptoms. Its overwhelming at first..but...after a while it starts to make sense. My being on synthroid is a perfect example....my doc prescribed 50mcg....I felt that was to much and have only been taken 25mcg. My doc does not know this...she thinks Im taking the full 50mcg. My levels have come up to mid range in 2 weeks being on the 25mcg. Its very likely that had I taken the full 50mcg...I could have gone hyper again. Since I know my body better than anyone and I understand my labs and symptoms...I was able to make that educated decision. You have to do the same with ATD's. Only you know your body and its reactions to the meds...but first of all you have to learn how to read and understand labs. That is the key to living well with Graves.
When I go back to see my doc at the end of Feb...I will let her know then what I have done. She will be proud of me. Big Hugs...Kathy
Here's a link
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/8091730
And, yeah, I need to write one about my journey as well - based upon all the threads I've written, I think peeps have heard about it ad nauseum - lol