Hypothyroidism Support Group
Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...
Hi folks!
I know how difficult it was for me during the meds titration process to have faith that I could FINALLY feel better.
Well, I did......and it can happen to you.
I thought it might be a good idea for you to know just what maintaining optimal levels involves.
You probably remember me saying that I've never lasted longer than 3 months on any given dose and that's why I get labs every 6 wks.
Many people who are optimized don't need such frequent labs.
I tried going 8 wks. between labs but, I'd invariably develop symptoms beforehand.....sure enough, my levels showed the need for a dose adjustment.
Getting labs every 6 wks. has enabled me to "catch" any changes in my levels and have my doctor adjust my dose....before I develop symptoms. I have been able to "escape" most symptoms this way.
As a general rule I established for myself (through time and experience)..... if my most recent labs prove to be optimal for me (no dose adjustment required), I will then go 4 wks. for the next set of labs since my history has shown that I've invariably needed a dose adjustment then.
Bottom line, we each need to figure out what works for us re lab frequency. This is a key aspect of maintaining optimal levels.
Another key aspect of maintaining optimal levels is, of course, knowing how to interpret our labs.....always focusing only on the FreeT4 and FreeT3 levels and asking for appropriate dose adjustments.
Please remember - it doesn't matter what dose(s) we take....we take whatever dose(s) we need to maintain optimal levels.
I thought I'd share a little of my dosing history so you guys can see what maintaining optimal levels looks like.
Just as for most people, I started out with 25mcg T4. My dose was slowly titrated up as labs and symptoms dictated. About 10 months into the meds titration process, my labs showed the need for the addition of T3 (my FreeT4 level was near the high end of the range but, my FreeT3 level was slightly below mid-range). I was started on 5mcg T3 which, thankfully, optimized my FreeT3 level.
When both my FT4/FT3 levels finally optimized in June 2011, I was taking 125mcg T4 and 5mcg T3.
Moving forward from there, my T4 dose needed to be adjusted no more than 6.25mcg at a time..... and I stayed on 5mcg T3 for over 6 months.
So, I'd be taking either alternating doses of 112/125mcg T4....possibly go down to 112mcg T4....back up to alternating 112/125 and possibly up to 125mcg T4. Again, all the while I was taking 5mcg T3.
Most importantly, these small changes in my T4 dose kept me virtually free from thyroid symptoms.
I went off hormonal BC in late November 2011 since "female-related" labs indicated that I was in menopause.
Since I already learned that estrogens cause an increase in SHBG (sex hormone binding globulins) which can bind thyroid hormone, I knew to expect a need for either/both T4 and/or T3 dose reductions.
Sure enough, by January 2012, I needed a T3 dose reduction due to an over-range FreeT3 level so I was down to 2.5mcg T3....and still taking alternating doses of 112/125mcg T4.
In late February, I needed a T4 dose reduction due to an over-range FreeT4 level (I then went down from 112/125 to 112mcg).
Throughout last year, depending on my labs, my T4 dose continued to vary from 112 to 112/125 to 125, etc.......and my T3 dose varied from 2.5 to 3.75 to 5mcg.
By the time of my mother's strokes in late August, I was taking 112/125mcg T4 and 5mcg T3.
I am now up to 125mcg T4 and 7.5mcg T3.
(I wasn't surprised at my need for more T3 since stress greatly interferes with conversion. My next labs might show the need for more T4 as well so there's a chance I will be "fooling around" with 125/137mcg T4.....whatever it takes)
These small dose changes helped me maintain my optimal levels: FreeT4 1.7 - 1.84 (.82-1.76)
FreeT3 3.8 - 4.0 (2.0-4.4)
So, if my FT4 dropped below 1.7, I'd get a small T4 dose increase (6.25mcg) that always brought my FT4 back to my optimal range of levels.
When my FT4 went over-range after going off hormonal BC, that same size dose DEcrease restored my optimal levels.
The same concepts apply to what was done with my T3 dose and how my FT3 level was affected.
As you can see, there have never been radical changes in my dose sizes since being optimized.
This type of thing can only happen if a person is getting labs with the appropriate frequency.
People who wait until symptoms develop before getting labs will find that their levels are much farther from their optimal and it can take several dose adjustments over the course of several months to restore their optimal levels.
This is just a plain, biological fact.
By the time symptoms develop, our levels have already been "off" for several weeks. Obviously, the further "off" our levels are from their optimal, the longer it will take to restore them.
Admittedly, I had some "detours" during the process - mostly because my doctor isn't aware of some of the "finer aspects" of thyroid care.
However, I have enough time in with thyroid hormone replacement that I finally have a good understanding of just what's needed to maintain optimal levels.
I have been able to avoid most symptoms by getting labs/appropriate dose adjustments within the timeframe that works for me.
This is what I've always dreamed of.....it made sense to me that it was possible and I'm thrilled that it is.
Since I am aware of other people's success with maintaining optimal levels, I know my situation isn't unique.
Please keep the faith.
I know how difficult it was for me during the meds titration process to have faith that I could FINALLY feel better.
Well, I did......and it can happen to you.
I thought it might be a good idea for you to know just what maintaining optimal levels involves.
You probably remember me saying that I've never lasted longer than 3 months on any given dose and that's why I get labs every 6 wks.
Many people who are optimized don't need such frequent labs.
I tried going 8 wks. between labs but, I'd invariably develop symptoms beforehand.....sure enough, my levels showed the need for a dose adjustment.
Getting labs every 6 wks. has enabled me to "catch" any changes in my levels and have my doctor adjust my dose....before I develop symptoms. I have been able to "escape" most symptoms this way.
As a general rule I established for myself (through time and experience)..... if my most recent labs prove to be optimal for me (no dose adjustment required), I will then go 4 wks. for the next set of labs since my history has shown that I've invariably needed a dose adjustment then.
Bottom line, we each need to figure out what works for us re lab frequency. This is a key aspect of maintaining optimal levels.
Another key aspect of maintaining optimal levels is, of course, knowing how to interpret our labs.....always focusing only on the FreeT4 and FreeT3 levels and asking for appropriate dose adjustments.
Please remember - it doesn't matter what dose(s) we take....we take whatever dose(s) we need to maintain optimal levels.
I thought I'd share a little of my dosing history so you guys can see what maintaining optimal levels looks like.
Just as for most people, I started out with 25mcg T4. My dose was slowly titrated up as labs and symptoms dictated. About 10 months into the meds titration process, my labs showed the need for the addition of T3 (my FreeT4 level was near the high end of the range but, my FreeT3 level was slightly below mid-range). I was started on 5mcg T3 which, thankfully, optimized my FreeT3 level.
When both my FT4/FT3 levels finally optimized in June 2011, I was taking 125mcg T4 and 5mcg T3.
Moving forward from there, my T4 dose needed to be adjusted no more than 6.25mcg at a time..... and I stayed on 5mcg T3 for over 6 months.
So, I'd be taking either alternating doses of 112/125mcg T4....possibly go down to 112mcg T4....back up to alternating 112/125 and possibly up to 125mcg T4. Again, all the while I was taking 5mcg T3.
Most importantly, these small changes in my T4 dose kept me virtually free from thyroid symptoms.
I went off hormonal BC in late November 2011 since "female-related" labs indicated that I was in menopause.
Since I already learned that estrogens cause an increase in SHBG (sex hormone binding globulins) which can bind thyroid hormone, I knew to expect a need for either/both T4 and/or T3 dose reductions.
Sure enough, by January 2012, I needed a T3 dose reduction due to an over-range FreeT3 level so I was down to 2.5mcg T3....and still taking alternating doses of 112/125mcg T4.
In late February, I needed a T4 dose reduction due to an over-range FreeT4 level (I then went down from 112/125 to 112mcg).
Throughout last year, depending on my labs, my T4 dose continued to vary from 112 to 112/125 to 125, etc.......and my T3 dose varied from 2.5 to 3.75 to 5mcg.
By the time of my mother's strokes in late August, I was taking 112/125mcg T4 and 5mcg T3.
I am now up to 125mcg T4 and 7.5mcg T3.
(I wasn't surprised at my need for more T3 since stress greatly interferes with conversion. My next labs might show the need for more T4 as well so there's a chance I will be "fooling around" with 125/137mcg T4.....whatever it takes)
These small dose changes helped me maintain my optimal levels: FreeT4 1.7 - 1.84 (.82-1.76)
FreeT3 3.8 - 4.0 (2.0-4.4)
So, if my FT4 dropped below 1.7, I'd get a small T4 dose increase (6.25mcg) that always brought my FT4 back to my optimal range of levels.
When my FT4 went over-range after going off hormonal BC, that same size dose DEcrease restored my optimal levels.
The same concepts apply to what was done with my T3 dose and how my FT3 level was affected.
As you can see, there have never been radical changes in my dose sizes since being optimized.
This type of thing can only happen if a person is getting labs with the appropriate frequency.
People who wait until symptoms develop before getting labs will find that their levels are much farther from their optimal and it can take several dose adjustments over the course of several months to restore their optimal levels.
This is just a plain, biological fact.
By the time symptoms develop, our levels have already been "off" for several weeks. Obviously, the further "off" our levels are from their optimal, the longer it will take to restore them.
Admittedly, I had some "detours" during the process - mostly because my doctor isn't aware of some of the "finer aspects" of thyroid care.
However, I have enough time in with thyroid hormone replacement that I finally have a good understanding of just what's needed to maintain optimal levels.
I have been able to avoid most symptoms by getting labs/appropriate dose adjustments within the timeframe that works for me.
This is what I've always dreamed of.....it made sense to me that it was possible and I'm thrilled that it is.
Since I am aware of other people's success with maintaining optimal levels, I know my situation isn't unique.
Please keep the faith.
I still wonder however why the replacement hormones do not act or react more like the hormones that are produced in the axis. Its not that common for people who dont have thyroid disease to experience these ups and downs when their axis is functioning properly. So, when we supplement to attempt to replicate those levels of a healthy person in the upper end of the optimal range, why do we still have set backs, reversals, ups and downs like you have described to us cd. A sudden fall, re-emerging symptoims, new symptoms even when you are at optimum levels? Taking into consideration your emotional life and stress, your recent family issue, would that send a healthy optimum leveled person into those swings and crashes?
Has anyone ever been optimized for very long periods of time, lets say years without trouble? Or is thyroid disease, what it is,something we TRY to keep under control but can not always accomplish? With or without autoimmunity in the picture?
I hope I am making sense here, and that you have not already sufficiently answered that question! Just tell me to shut up if that is the case, PLEASE!
Between post #14 and my very first post on this thread, I *think* I've answered your questions.
Would you care to take another peek and see if you agree?
Of course, if you need me to expand on something, please let me know and I will gladly do so.
I think it's really important for people to understand just why things happen and how to stay optimized.......
Optimal levels = no thyroid symptoms
Appropriate individual-specific lab frequency and appropriate dose adjustments keeps levels optimized......
This has been my experience and the experience of other optimized people who have crossed my path on thyroid forums.
CD is much better at explaining things than I am, but let me give it a try, K? Cuz I have a tendency to talk like a second grader sometimes and that's not a bad thing when explaining stuff, ya know?
This is why I use the analogy that hypothyroidism is more like diabetes than say a migraine or even a broken bone. I didn't understand for a loooooong time that - like diabetes, to maintain a level of "symptom free" or "tolerable symptoms" you have to "stay on top of it" by getting regular tests and regular adjustments. I had no idea. Not a clue.
For instance: what you eat, when you eat, how you exercise, what your stress levels are, and when/how you take your meds - blood sugar and insulin levels fluctuate... and sometimes seemingly just out of the clear blue sky they can bottom out or sky rocket due to an illness or imbalance elsewhere in the body.
Hypothyroidism is very much the same way - they thyroid is a busy little bee of an organ and a seemingly small thing can affect it. A change in schedule, a stressor, a change in diet, a change in meds or timing of meds, an infection, or an imbalance somewhere else in the body. To stay on top of it....we have to have regular blood tests and adjust meds to stay within the "target optimal range". Unfortunately, it takes a while to get to the optimal range because titrating up has to be done slowly so as not to overwhelm the body with an influx of hormone.
I don't know anyone who's maintained an optimal level of thyroid hormones and kept an even keel on thyroid symptoms at the same dosage for more than a year to 18 months to two years. They may be out there (and if you are please speak up), but I don't know any...and I know alot of them! I do know people who *say* they've maintained and have been symptom free - but often they pass of their symptoms as something else - one lady told me: I've been on the same thyroid meds for 20 years. I'm fine. Then she went on to say she had intestinal problems, nausea, dizziness, and her hair was falling out but "that just happens sometimes". Meaning...she didn't know any better because no one ever told her she needed an adjustment....or new labs.
I'm working on getting to my "sweet spot". At least this way I have hope. And, I know people who are "symptom free" who've walked down this path before me. Make sense?
The short answer is: it's a constant battle....but worth the fight.
THANK YOU!!!
It's so good to hear something explained a different way!!
I couldn't agree more that the people who have never had their dose changed are dealing with symptoms.
It just makes sense that people need dose adjustments.
I speculate that, at the minimum, optimized people need a dose adjustment in the fall......and one again in the spring.
Endo Ken Blanchard does exactly that for his patients and he writes about it in his book "What Your Doctor May Not Tell You About Hypothyroidism".
As I mentioned already, my history has shown me to need a *small* dose adjustment usually every 10 wks.
I have found a lab frequency that works for me.....I described it in my first post on here.
Once people are optimized, their work still isn't done.
They have to find a lab frequency that works for them.......and then they need to make sure their doctors adjust their dose(s) appropriately.
Hope this makes sense...
Asking questions is an important part of learning.
Thankfully, we have MButterfly teaching from a different perspective :)
I do think I finally get it. Its not so mysterious is it? Test every 6 weeks, adjust meds accordingly, expect fluctuations, deal with it in the long term.
I think what I keep forgetting is that Hypothyroidism is a disease and not some passing acute health crisis but something that will take lots of attention, judgement, persistence, and dedication to reach the level of wellness that we all desire to have.
Thanks again for putting up with me!
Gagel
Having a fuzzy head and having to play the long game to feel well is not easy - but this forum makes it easier to bring things back into focus when we get off track.
I am a Graves' Disease patient, possibly in remission--but with ongoing hypo symptoms, so I bounce back and forth between these forums.
I thought it might be beneficial to provide an update re my doses so you can once again see how it's possible to maintain optimal levels.
If you read my earlier posts on this thread, you will see that I was taking 125mcg T4 and 7.5mcg T3 back in March.
I'm happy to report that my optimal levels "stuck" until late May.
Then, as seems to always happen with me, my levels showed a need for a dose adjustment.
This time, my FT3 needed help. (FT4 was optimal). I was feeling great on the date of my labs.
Since I was recovering from my worst-ever case of poison ivy when I had labs in May, I wasn't sure if the decrease in my FT3 was due to that. (remember, stress of any type (mental or physical) can affect our thyroid hormone levels - usually the FT3 first)
My doctor didn't want to increase my T3 at this point since I had a T3 dose increase earlier (this didn't make sense to me).
I told her I wasn't comfortable with this idea so, she then offered a T4 dose decrease (to 112mcg) along with increasing my T3 to 10mcg.
I wasn't comfortable with this idea, either, since my FT4 level was optimal and I told her so. I then told her I wanted to do "something" and I wished T3 came in 1mcg tabs.
She offered a very slight T3 dose increase in the form of me taking 10mcg twice/week and continuing with 7.5mcg the other 5 days.
Even though this goes against everything I've learned about the need to take the same T3 dose every day, I decided to try it. (I, too, wasn't sure I wanted to go up to 10mcg T3 every day).
I was pleasantly surprised to discover that I felt fine with this alternating T3 dose (I suspect it was due to the fact that the difference between the daily doses isn't too huge)
Well, within a week, my vision got clearer (I didn't even realize the quality had declined a little) and I was sleeping better (I had been waking sometimes during the night but didn't want to blame my thyroid - a lot was going on in my "regular" life).
I am feeling awesome right now and my labs next week will tell me whether or not the T3 dose adjustment was appropriate.....and whether or not my T4 dose remains appropriate.
I always dreamed that regular labs and appropriate dose adjustments would keep me feeling good and I'm thrilled that it's become my reality.
You know I wish the same for you.
Thank you Cd and MButterfly for all the information.
There are many reasons why it is so difficult to reach optimum hormone levels. Doctors who are not knowledgeable about thyroid diseases, tests and treatments. Replacement hormones can be up to 20% out of range for there stated dosages. Heat can also effect the medications. There are many chemicals that we are in contact with daily that disrupt hormones, fluoride, bromine and chloride are a few
.
I feel like I have to educate myself and my doctor so my active Crohn's disease might go into remission. I believe the key to healing my intestines starts with my thyroid. I have Hashimoto's. I don't think my doctor has ever checked my FT3 or FT4. He has told me that there is no difference between synthetic or natural hormone. This is not going to be easy, but I don't want to give up on him because I've been seeing him for about 20 years. My next appointment with him is Tuesday.
You stated that Thyroid hormone in the blood in also reactive based on the sex hormones. Can you please elaborate on this for me? I am asking because my Testosterone is VERY low, both free and total.
Thanks!
Yes, it takes work to get optimized and stay that way but, I think it's worth every effort. As I tell my doctor, feeling good is too important to me.
@Worried John
Low testosterone is associated with hypothyroidism.....getting treated for your hypothyroidism should help your testosterone level.