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 am usually pretty good at figuring out where my levels need to be and where my "sweet spot" is with my levels but the last 3 or 4 months have been nothing but a NIGHTMARE for me. I can't seem to get it right. Any advice or similar stories would be GREAT to hear. Here are my levels for the last 3 months:
July:
Free T4: 1.29
TSH: 3.67
Took synthroid night before at 10 pm/tested around 11 am. Was not on T3 at this time.
August:
Free T4: 1.15
TSH: 0.688 (with T3)
Took synthroid night before at 10 pm/tested around 130 pm. Skipped T3 this day. Was taking T3 for at least 4 weeks by this time, maybe 6 weeks.
September:
Free T4: 1.32
TSH: 2.100
Took 1/2 of synthroid night before at 10 pm and 1/2 at 6 am day/tested around 10 am. Was not taking T3 since last lab test.
Range:
Free T4: 0.82-1.77
TSH: 0.450-4.500
Free T3: steady between 2.3-2.5
Range: 2.0-4.4
Now, for my symptoms... I have felt like my head is not connected to the rest of me, like a space cadet. I have experienced many episodes of dizziness, vertigo, anxiety, shortness of breath, and excessive tiredness. I have had nausea for almost a month now almost daily. My nausea comes on the strongest every time I eat, no matter what it is. I'm so OVER this and I just want to have an answer. My iron is within normal range, my ferritin is within normal range but on the lowest end, and my B12 looks great. I take Iron, vitamin C, calcium, magnesium, Vitamin D3, and B12 daily. I am so desperate for an answer that I have seen my endo, a cardiologist, a neurologist, and now am seeing a hematologist. So far everything looks normal. The hematologist just ordered some tests to check my platelets and I added on a test to check for percunious anemia (b12) after doing research on what to test for. Has ANYONE been thru this? Does anyone know?
Note: When my Free T4 is above 1.30, I usually get palpitations so I have to try my best to keep it around there. I can't remember when I felt my best anymore because I've just felt like crap for so long now. It's depressing and causing my anxiety to spiral out of control from time to time. I just want to be "fixed" enough so that I can at least enjoy life.
July:
Free T4: 1.29
TSH: 3.67
Took synthroid night before at 10 pm/tested around 11 am. Was not on T3 at this time.
August:
Free T4: 1.15
TSH: 0.688 (with T3)
Took synthroid night before at 10 pm/tested around 130 pm. Skipped T3 this day. Was taking T3 for at least 4 weeks by this time, maybe 6 weeks.
September:
Free T4: 1.32
TSH: 2.100
Took 1/2 of synthroid night before at 10 pm and 1/2 at 6 am day/tested around 10 am. Was not taking T3 since last lab test.
Range:
Free T4: 0.82-1.77
TSH: 0.450-4.500
Free T3: steady between 2.3-2.5
Range: 2.0-4.4
Now, for my symptoms... I have felt like my head is not connected to the rest of me, like a space cadet. I have experienced many episodes of dizziness, vertigo, anxiety, shortness of breath, and excessive tiredness. I have had nausea for almost a month now almost daily. My nausea comes on the strongest every time I eat, no matter what it is. I'm so OVER this and I just want to have an answer. My iron is within normal range, my ferritin is within normal range but on the lowest end, and my B12 looks great. I take Iron, vitamin C, calcium, magnesium, Vitamin D3, and B12 daily. I am so desperate for an answer that I have seen my endo, a cardiologist, a neurologist, and now am seeing a hematologist. So far everything looks normal. The hematologist just ordered some tests to check my platelets and I added on a test to check for percunious anemia (b12) after doing research on what to test for. Has ANYONE been thru this? Does anyone know?
Note: When my Free T4 is above 1.30, I usually get palpitations so I have to try my best to keep it around there. I can't remember when I felt my best anymore because I've just felt like crap for so long now. It's depressing and causing my anxiety to spiral out of control from time to time. I just want to be "fixed" enough so that I can at least enjoy life.
For whatever it's worth, people who are optimally medicated on meds like Synthroid will have TSH below 1.....for Graves' patients, optimal TSH will be even lower.
And, for people who are optimally medicated on any form of T3, their TSH will be suppressed (below-range).....this usually means TSH .02 or lower.
As you can see, your most recent TSH is way too high for someone taking thyroid hormone replacement. (I take T3 & T4 and on a "good" day, my TSH is .007)
As we all know, it's most important to look at the FreeT4/T3 levels for dosing.
Most people need their FreeT4 level near the high end of the range to be free from symptoms.
If you are confident that your FreeT4 sweet spot is 1.3, then it makes sense to question your FreeT3 level.
Most people need their FreeT3 level around 75% of range (halfway between the middle and the high end of the range). Based upon your lab's ranges, this means FreeT3 around 3.8 (and possibly higher).
Why aren't you taking T3 any more? You clearly need it. It could very well be your "missing link".
T3 should not be taken within 6-8 hours of the blood draw. Otherwise, the FreeT3 result will be artificially skewed high.
Consistency with meds timing and blood draw allows you to compare apples to apples.
And, consistency with meds dosing times will keep you feeling better overall.
Here's what I consider a very good read about why we need adequate FreeT3 levels.....and what we can do to keep ourselves feeling as good as possible:
http://www.thyrophoenix.com/conversion.htm
It sounds like you want to do something to get your FT3 to come up to eliminate many of the symptoms you are having.
Also another thing, do you have any issues with the Adrenals such as having Adrenal Fatigue? Some symptoms also looks to be coming from that as well.
So sorry you are feeling this way. :-(
{{{hugs}}}
If you were fine for a couple of months and *then* developed headaches, it's quite unlikely that the T3 is to blame.
I suspect the headaches could be a sign of levels that aren't yet optimized.
Labs at that point would have been very telling.
Also, are you dividing your T3 dose into at least two/day? T3 is short-acting so, dividing the dose provides more even "coverage"....it also helps to prevent any hyper symptoms after a dose and, more importantly, it helps to prevent an afternoon crash.
People taking total daily doses of 10mcg or less usually divide their dose into two day....an AM dose and a PM dose usually 6 hours later.
People taking larger doses sometimes divide the dose into 3/day....an AM dose, one 4 hrs. later and the final dose 4 hrs. after that.
If you again develop headaches after taking T3 for awhile, I suggest you get labs at that point and share them here.
As to the confusion over being hyper- or hypo- etc., I was recently told I have auto-antibodies for both GD and HT. Even more recently, I read that Hashimoto's Thyroiditis may lead to periods of hyperthyroidism and back to hypo.