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...
I've been taking thyroid hormone replacement since January 2010 and my levels were optimized in June 2011.
I've had many, many small dose adjustments every 3 months or so since that time to maintain my optimal levels.
If I continue to get labs/dose adjustments with the frequency that works for me, I'll have minimal to no symptoms after the dose adjustment.
If I don't get a dose adjustment when my labs first show the need, I develop symptoms.
The further my levels are from my optimal, the more symptoms I'll have, the greater their intensity and/or also their duration.
We care about symptoms to the extent that the presence of symptoms means our levels aren't optimal for us.
We get labs done because it makes sense to try to achieve the types of levels most people find "comfortable" (top-of-the-range FT4 and FT3 in the upper quarter of the range).
We continue to get labs done after levels are optimized to make sure they "stick". So many things affect thyroid levels that this is our only chance of feeling good most of the time.
Symptoms do lag behind labs to the extent that we don't necessarily "feel" our levels until after they "hit". This is due to the body trying to maintain homeostasis.
That's why it makes sense to "try on" the "most commonly comfortable" levels and "wear" them for awhile to see if symptoms ease.
The reason we have symptoms is either because our levels aren't optimal for us.....or because our levels are moving and, once again, the body is struggling to restore homeostasis.
Linked below are some threads I wrote on the hypo forum that shared parts of my journey. Maybe reading some examples will provide a clearer picture of what I'm trying to explain.
http://www.dailystrength.org/c/Hypothyroidism/forum/14455047-journal-success
http://www.dailystrength.org/c/Hypothyroidism/forum/15907594-face-optimized-levels
http://www.dailystrength.org/c/Hypothyroidism/forum/17439709-learned-hard-way-again
http://www.dailystrength.org/c/Hypothyroidism/forum/17664573-i-broke-through
Kudos to you for sticking to your guns with your meds!!
And, for whatever it's worth, your TSH is NOT hyper unless it is accompanied by an over-range FT4 and/or FT3 result.
On average, my TSH runs from less than .005 up to .007 when my FT4/FT3 levels are optimal for me.
Hope this helps.
I know it sounds crazy what I did in reducing my T4, but actually I shouldn't have gone up to 50's in the first place. I understood when the doctor prescribed them that it would be 25's, but when the pharmacy gave me the 50's I just took them anyway. I was probably at some stage of mild brain fog.
Just after I wrote the above post, I realized that in the craziness of symptoms, specifically brain fog, I must have forgotten to load the cytomel into my pill sorter, so I thought I was taking it for about a week, with the exception of forgetting all my pills on Saturday, but then I saw that the cytomel wasn't even with the pills I forgot to take.
I wrote to my doctor asking if that mattered. No, he still wanted me to go off the pills for several weeks. I wrote back saying that I was getting better since getting back on track with the 5 mcg cytomel, and "I need my brain to function." So he wrote that we could continue on the dose I'm on and he would test me again "in the future." [I noticed the mistake on Tuesday, but didn't get my thoughts collected to write to the doctor until Sunday the 10th, the day after I wrote this post.]
CD, you also suffered from Graves' at one time, right? So you had been high in both TSI and anti TPO and thyroglobulin antibodies right? Did you ever get tests showing those levels returning to normal?
I was thinking that the reason I even got GD was a bodily response after prolonged lack of treatment for Hypothyroidism, and I think I had some form of that since birth, possibly evolving to Hashi's later, and finally Graves'.
I know I am quite unusual in being able to be treated first with T3, and only having the T4 added after about 3 to 4 months of treatment with the T3. This makes a difference because I get an immediate response to symptoms from the T3.
The T4 is much more gradual, but I do think the rT3 was part of the problem for a long time, with my body thinking I needed to conserve energy -- it was like a vicious cycle, and I doubt I could have broken free of it in any other way. I also think that the TSI might have decreased and I am hoping my doctor will test for it at least in February which will mark one year from the last time it was tested.
I fully appreciate your "evolution" with dosing having dealt with thyroid-induced brain fog all too often.
Yes, I started my thyroid disease journey with Graves' and only tested positive for TSI (no TPO's or TGAb's).
My TSI level was still positive when I went off ATD's but I also had measurable TRab (which includes the blocking antibodies that can cause hypothyroidism).
Both levels have decreased since I've been on replacement and I have developed measurable TPOab's (163 most recently with range greater than 39, I think).
I don't believe I've been tested for TGab recently.
I must admit I have no plans to ask my doctor for antibody testing anymore mostly because she's told me "We know to ignore TSH in Graves' because of the antibodies".
I don't want to give her an opportunity to possibly misinterpret any antibody test results and change the way she manages my replacement meds.
It's horrible to think that you might have been suffering with hypothyroidism since birth. So many cases go undiagnosed - it's pathetic.
You are fortunate that you were able to get a T3 Rx. I'm glad it helped you.
I've found that the only way I am free from symptoms is if both my FT4 and FT3 levels fall within my optimum range. If either level is "off", I can have symptoms.
Therefore, T4 only doesn't work for me.....and I can't picture T3 only ever having worked for me.
You might have read this before but, I found Elaine Moore's article summarizing a "Thyroid" article about thyroid antibodies to be quite interesting:
http://suite101.com/a/switching-between-hypothyroidism-and-hyperthyroidism
There's a link to the "Thyroid" article at the bottom of hers...
My symptoms seem to be relative to how much worse I felt yesterday, more than to the actual numbers, if you know what I mean.
When your numbers are right do you really have no symptoms at all? Aren't there any residual symptoms from when you were hypo, like being unable to lose weight, or hair thinning, falling out, and becoming finer and limp? I imagine that would take a while for it to return to normal.
I think I understand what you're saying about your symptoms corresponding more to how you are feeling than the actual numbers. Maybe this has to do with not being at our setpoints.
Somewhere along the line, I read that women are more sensitive to decreases in thyroid hormone levels. It seems that it would follow that women are more sensitive to inappropriate thyroid hormone levels and, thus, we'll have more symptoms.
I know that, for me, as "little" as a 15% deviation from my optimal levels can easily mean 10-15 symptoms - some of them mild but still noticeable to me.
I am actually grateful that my thyroid disease journey started with Graves' because I, too, learned about the thyroid at that point and eventually learned that a person can be hypo with "normal" (or even suppressed) TSH.
That is correct - I have absolutely *no* symptoms when my levels are optimal......and I've experienced more than 40 different symptoms.
Yes, I experienced weight gain (35 lbs!) when I was overmedicated on ATD's. The weight slowly came off over the past 4 years as my hypothyroidism improved and I am back to size 6.
And, yes, I experienced hair loss (during the replacement meds titration process mostly) and my levels were finally optimized in June 2011. Thankfully, my hair is back to normal. In fact, it seems to have more body than it ever did.
I've been able to maintain optimal levels since June 2011 thanks to my doctor's willingness to work with me.
Yes, I've had some symptoms after dose adjustments but, they've always been minor and I doubt a healthy person would even question them.
There were a couple times that I didn't get a dose adjustment when my labs first showed the need and I developed more symptoms that took about 4-6 wks. to dissipate.
I learned from those experiences and don't expect that to happen again.
I improved my diet over the years and have always exercised. I make sure to get a good night's sleep and work towards minimizing the effects of stress on my body.
I feel the best I ever have and it's awesome. You know I wish the same for you.
What are your plans with Armour? Does your doctor realize that the T3 in Armour suppresses TSH if Armour is taken in optimal doses? Do you know if he'd be willing to prescribe T4 along with the Armour if your FT4 level shows the need?
I ask these questions because they are related to issues people on forums seem to have....
Now that I've been optimized, my TSH ranges from less than .005 up to .007 and I'm not the least bit concerned.....and neither is my doctor.
She is aware of Brokken's 2003 ground-breaking study. Here's the abstract:
http://www.ncbi.nlm.nih.gov/pubmed/12970276
And here's the "full story":
http://press.endocrine.org/doi/pdf/10.1210/jc.2003-030430
And, here's some info that was published more recently:
http://www.hindawi.com/journals/jtr/2012/351864/
And, for whatever it's worth, the Synthroid prescribing information indicates that TSH will be suppressed when optimal doses are taken (see indications and usages section):
http://www.rxabbvie.com/pdf/synthroid.pdf
The treatment section on the Armour website indicates the same:
http://www.armourthyroid.com/treatment.aspx
You probably noticed that TSH suppression is indicated for the treatment or prevention of nodules and goiters.
Well, my very first thyroid ultrasound that was done after my hyperthyroidism was detected during my 2007 annual physical showed no evidence of nodules.
The 3 endos who mistreated me afterwards never ordered followup ultrasounds and neither did my now-former GP when I asked him to help with my thyroid care.
I started seeing my current doctor, an internist, in late 2009. She was shocked to hear that I hadn't had a thyroid ultrasound since diagnosis and immediately ordered one. It seems I had developed two small nodules.
She has me get thyroid ultrasounds every 6 months now and the most recent one showed that one nodule has shrunk to half its size.
I'm sorry to say that I believe Big Pharma has a disincentive to correct the misinformation about TSH....and they are the ones who fund most studies.....and the biggest contributors to the ATA/AACE.
Think about it - if people with hypothyroidism remain undiagnosed or improperly treated, they can develop all sorts of health issues and then the prescription pads can come out.
There's not much money to make with thyroid hormone prescriptions especially since they're available in generics.
I'm sure you're aware of the fact that the late Dr. John Lowe conducted several studies that showed fibro and CFS to actually be manifestations of undiagnosed/improperly treated hypothyroidism.
And, I've read stories of people who found their supposed Type II diabetes be "cured" once their thyroid was optimized.
Heck, I had elevated blood glucose and cholesterol levels for the first time in my life when I was my worst-ever hypo.
The only way for me to stay healthy in every sense of the word is to have a top-of-the-range FT4 level along with upper-quarter-of-the-range FT3.....and suppressed TSH.
I'm sure you know that TSH has no physiological implications - just like FSH. It's the actual hormone levels that can cause symptoms/health issues.
Sorry to inundate you with so much information. I hate the thought that someone's health might be compromised because doctors have not kept up with advances in medicine.
I wish nothing but the best for you.
http://www.ncbi.nlm.nih.gov/pubmed/17199435
My doctor seems to be having second thoughts about treating my thyroid problem himself (or with the "help" of his medical assistant, who seems to have the final say on what may and may not be prescribed for what condition.)
In any case, he wants to refer me to another endocrinologist -- my 4th. I'm thinking about going to the university hospital clinic about an hour's drive away. I would volunteer to be the test subject of a case study, if they would accept me to study optimum treatment of the thyroid.
{{{hugs}}}