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!
Some of you might have read my suggestion in threads about keeping a symptoms journal as it related to labs. This was an idea shared with me by the members of my first-ever thyroid forum.
For those of you who might be interested in knowing what worked for me, I can tell you that keeping a journal was key towards identifying my optimal levels.
I soon realized that noting "feeling good" or "not feeling good" on my lab reports wasn't enough.
I maintained separate Word documents that covered the period of time in between labs. This way, each document represented what was going on with me in relation to whatever dose(s) I was taking at the time.
I would title each document with a date range that reflected the date of the most recent labs and the date of my upcoming labs.
My daily entries weren't particularly long and they were based upon what symptoms I might have been dealing with at the particular time.
Even though I had easily 30 symptoms during the early months of the meds titration process, many of those dissipated once my FreeT4/T3 levels were above mid-range.
This confirmed for me that I was like many people in the fact that I needed both my FreeT4/T3 levels above mid-range to feel well.
I was then dealing with a cluster of fluctuating symptoms. Watching the patterns that developed after a dose increase helped me to realize that my levels weren't necessarily optimal just yet.
This period of time often showed an improvement of symptoms after a dose increase....and then a worsening of some before the time of my next labs. This is a typical experience that tells us our dose(s) and levels still aren't optimal.
Since each of us has his/her own typical cluster of symptoms, it makes sense to note only what applies to the individual.
Therefore, my journal consisted of daily notes about the quality of my sleep, digestion, energy level, strength, stamina and mental function.
I would also note anything that might have been going on that particular day that could have affected how I felt.
An example of this would be noting the chills I had at night and also noting I attended my son's hockey game and/or it was below-freezing outside. I certainly don't want to blame my thyroid for everything :)
You can only imagine my excitement when my journal entries only consisted of improvements. This was a sign that the labs I had 6 wks. after starting the particular doses could very well be my optimal.
Sure enough, my FT4 level came back around 90% of range (my optimal FT4 is higher than the 60-80% of range most people need to be symptom-free) and my FT3 level at 75% of range (typical for most people)
Moving forward from there, I continued to make occasional notes only if something questionable was going on. I found that there could be many days when I didn't make entries.
There were times when I found the need to make more entries because my digestion was slowing down or my sleep quality had deteriorated. Sure enough, those upcoming labs showed my FT4/FT3 levels to be lower in the range than the levels I had when I was symptom-free.
I had two times during the meds titration process when my levels optimized and I was symptom-free for about 3 months.
By sharing my journal with my doctor as it related to my labs and the times I felt best, she accepted my determination about my optimal levels.
Since my thyroid has been somewhat erratic, my doctor has me get labs every 6 wks. She has adjusted my doses (I take T3 & T4) to maintain my optimal levels.
This has kept me symptom-free and I feel awesome.
I share this with you in the hopes that it might help you to feel the same.
Some of you might have read my suggestion in threads about keeping a symptoms journal as it related to labs. This was an idea shared with me by the members of my first-ever thyroid forum.
For those of you who might be interested in knowing what worked for me, I can tell you that keeping a journal was key towards identifying my optimal levels.
I soon realized that noting "feeling good" or "not feeling good" on my lab reports wasn't enough.
I maintained separate Word documents that covered the period of time in between labs. This way, each document represented what was going on with me in relation to whatever dose(s) I was taking at the time.
I would title each document with a date range that reflected the date of the most recent labs and the date of my upcoming labs.
My daily entries weren't particularly long and they were based upon what symptoms I might have been dealing with at the particular time.
Even though I had easily 30 symptoms during the early months of the meds titration process, many of those dissipated once my FreeT4/T3 levels were above mid-range.
This confirmed for me that I was like many people in the fact that I needed both my FreeT4/T3 levels above mid-range to feel well.
I was then dealing with a cluster of fluctuating symptoms. Watching the patterns that developed after a dose increase helped me to realize that my levels weren't necessarily optimal just yet.
This period of time often showed an improvement of symptoms after a dose increase....and then a worsening of some before the time of my next labs. This is a typical experience that tells us our dose(s) and levels still aren't optimal.
Since each of us has his/her own typical cluster of symptoms, it makes sense to note only what applies to the individual.
Therefore, my journal consisted of daily notes about the quality of my sleep, digestion, energy level, strength, stamina and mental function.
I would also note anything that might have been going on that particular day that could have affected how I felt.
An example of this would be noting the chills I had at night and also noting I attended my son's hockey game and/or it was below-freezing outside. I certainly don't want to blame my thyroid for everything :)
You can only imagine my excitement when my journal entries only consisted of improvements. This was a sign that the labs I had 6 wks. after starting the particular doses could very well be my optimal.
Sure enough, my FT4 level came back around 90% of range (my optimal FT4 is higher than the 60-80% of range most people need to be symptom-free) and my FT3 level at 75% of range (typical for most people)
Moving forward from there, I continued to make occasional notes only if something questionable was going on. I found that there could be many days when I didn't make entries.
There were times when I found the need to make more entries because my digestion was slowing down or my sleep quality had deteriorated. Sure enough, those upcoming labs showed my FT4/FT3 levels to be lower in the range than the levels I had when I was symptom-free.
I had two times during the meds titration process when my levels optimized and I was symptom-free for about 3 months.
By sharing my journal with my doctor as it related to my labs and the times I felt best, she accepted my determination about my optimal levels.
Since my thyroid has been somewhat erratic, my doctor has me get labs every 6 wks. She has adjusted my doses (I take T3 & T4) to maintain my optimal levels.
This has kept me symptom-free and I feel awesome.
I share this with you in the hopes that it might help you to feel the same.
Thanks for your posting. If I'm understanding you correctly, you just do a word document on your computer and then print it out when you go to the doctor?
Having the journal helped me summarize my experiences to my doctor during the meds titration process.
The only time I printed anything out was after I identified my optimal levels and wanted to share that determination with my doctor. I used the various journal entries at that point to create a summary-type document to share with my doctor.
Excel: I use the columns in Excel for my numbers & medication.
The vertical columns for the TSH, FT3, FT4, and the Dose, Weight, Blood Pressure, Resting Heart Rate and any other tests along with The Ranges directly under the test and then MY result. This helps me to see Clearly in which direction the medication is sending me.
The horizontal columns: The date of when I started the medication, the name of the medication & dose, if it's new, 1st lab, 2nd lab.
For me, these columns help me to clearly see what my symptoms are with the numbers.
I can clearly see if my FT3 is climbing or not and if it's too high (3.7) and which symtpoms are still lingering with this number. Then I know that I need to tell the doctor that I don't feel good with this number and I still feel depressed, etc.. I can clearly see what my number was previously and see if the new labs show is increasing or decreasing in number. In my case I was looking for a lower number below 3.7.
I also made notes on the back of the lab results of which symptoms lingered with the medication and date of when I started that along with the amt of dose,
On the front of the Lab results, I also notate my blood pressure numbers, and heart rate because the medications have an effect on the vitals also. I had a lab result from a previous doctor so it was helpful information for the new doctor to see.
These brief notes on the back help me to to know if this medication and dose is working or not. If I need to look back then everything is on the back also.
On the day of the appointment I briefly state, to the doctor, which symptoms are stil lingering and briefly add which ones improved or disappeared with this medication so she would know if this medication is working or not. I kept it brief and to the point so we could have time to talk about the next plan that was needed.
I keep a separate journal on Word also with the date and a description of the symptoms, the severity of the symptoms that are still lingering. .
When I was put on Armour Thyroid, I made a journal for that one on Excel. The columns help me to clearly see my progression. I place the date in the horizontal area and across from the date which symptom (s) disappeared along with the time it possibly disappeared. Right before the appointment I notate which ones are sill lingering
I am also in agreement with CD, I highly recommend keeping a journal, 2 or 3.
On that note, if anyone here lives in S. Florida..I live in Boca Raton..I would be very grateful to get good doctor suggestions!
http://thyroid.about.com/b/2009/03/08/endocrinologist-thyroidologist-thyroid-doctor.htm
I have also read several articles from the American Thyroid Association's journal, "CLINICAL THYROIDOLOGY FOR PATIENTS" some of which explain very clearly why doctors think they are doing a great job of diagnosing and treating hypothyroidism while failing some of us. A few articles are helpful in understanding why the guidelines are inadequate in addressing every case, however.
I bookmarked this one, for example, addressing pituitary problems giving false normal lab reports:
http://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-5-issue-9/vol-5-issue-9-p-6-7/
I have also googled the names of doctors writing the articles I thought were insightful, and it seems like I saw one in southern Florida, but I can't find it now.
Yup. If your T4 level is "in the range" but on the low side of the range, then yeah, you might need some t4 (synthroid) to boost your energy levels, etc.
It's not so much *what* you take, but that you take what makes your levels optimal.
I'm sure you know that having hypothyroidism means that the thyroid isn't producing enough thyroid hormone that fuels every cell in the body.
The thyroid makes two main hormones: T4, the storage hormone and T3, the active hormone
There are several different types of thyroid hormone replacement meds that we can take:
T4 that comes in the form of levothyroxine (brands are Synthroid, Levoxyl, etc.)
T3 that comes in the form of liothyronine (brand is Cytomel)
desiccated thyroid (brands such as Armour, NatureThroid, Westhroid)
The first two meds listed are synthetic hormones.
Desiccated thyroid is make from dried pig thyroids (porcine thyroid) and it contains both T3 and T4 but, in a different proportion than what would be contained in human thyroids - it has proportionately more T3 than T4.
Desiccated thyroid also contains two other thyroid hormones (T2 & T1) and researchers are still trying to figure out just what those do. It also contains calcitonin that's involved in bone metabolism.
The FreeT3 test measures how much T3 (active hormone) we have in our blood and the FreeT4 test measures how much T4 (storage hormone) we have.
We need appropriate amounts of each hormone to be free from thyroid symptoms.
Because of the proportions of T3 vs. T4 in desiccated thyroid, people taking it will have FreeT3 levels that are proportionately higher in the range than their FreeT4 level.
Most people are fine with this **as long as the FreeT4 level is above mid-range**.
If the FreeT4 level is not above mid-range (and the FreeT3 level is already near the high end of the range), the only way to optimize the FreeT4 level is to add some T4 (in the form of levothyroxine/Synthroid/Levoxyl, etc.)
No matter what meds we take....of both the FreeT4 and FreeT3 levels are not increasing at a similar rate with dose increases, a thyroid-savvy doctor will usually optimize one level first.
With a T4 med, this means the FreeT4 level will be optimized (level near the high end of the range) and then T3 will be added to optimize the FreeT3 level.
With a "T3-dominant" med such as desiccated thyroid, the FreeT3 level will optimize first....and then T4 will be added if the FreeT4 level still needs help (and the patient is having ongoing hypo symptoms).
As I already mentioned, both the FreeT4 and FreeT3 levels need to be optimized if the patient is going to be rid of thyroid symptoms.
That's why the TSH test fails us.....it gives us no indication as to what is going on with the actual FreeT4 and FreeT3 thyroid hormone levels.
Hope this makes sense.
If it doesn't, please keep asking questions :)
Oh, and I changed from maintaining a Word document to maintaining an email that I forward to myself and save in a folder.
I do the same with my lab history. This way, I can access the info from anywhere.
Another option is Google Drive....
Best wishes to you in your efforts at taming your thyroid beast!!!
We're here for you :)
Happy to help. Lightbulb moments are very liberating :)
I will say this much, many doctors don't explain things at all....or they don't explain things in ways we can understand.
Throw in doctors that really don't know what they're doing and it's really hard to figure things out.
Treating thyroid disease requires knowledge and logic.
Sometimes we need to help our doctors along since they are often too busy to think things through.
Best wishes to you with your thyroid journey!