It has really been a struggle to find the right level of medication and to keep my doctor convinced that I know what I am talking about, since my TSH is non-existent when I am properly treated and feel well. Recently, when I was asking for further minute adjustments in T3 with corresponding adjustments to T4 that affected me (and my tests) strongly, she was all for sending me ANYWHERE, even to other cities, to find another endocrinologist. I have seen FIVE, all of whom made me worse and I do not intend to see another one. Luckily the latest papers published in the medical journals address the issue of tissue resistance or conversion problems and the need for T3, so I printed them out and gave them to her and we proceeded.
I feel the best I've felt in a long time and most of my symptoms have subsided. At 25 mcg of Cytomel I felt depressed and had dyslexic-type problems that I noticed when typing and was still having hair loss and painfully dry skin. At 35 mcg of Cytomel I felt a little too speedy, bordering on euphoric, had a couple of heart palpitations, some shortness of breath, and difficulty getting enough sleep. But at 30 mcg of Cytomel everything is fine....I feel like Goldilocks ! These changes were reflected in my FREE T3 labs falling below the top 3/4 of the range, then going slightly out of range, until now they have settled just below the top of the range. I adjusted the T4 up when I lowered the T3, hoping it would carry more of the hormone load, and that seems to be the case. My FREE T4 is still slightly below the middle of the range and if my doctor had not been so agitated, I would ask for one more slight adjustment there. But I have decided to stay at this dose for 6 months before I am re-tested, and see how I feel.
I am saying all of this to encourage newer members to persist in finding their optimum dosage, and to let them know that the adjustments in medication can be very fine. When you get close, you really have to pay attention to your symptoms. I have been struggling with this since 2005 and this is the first time I feel consistently more or less well. It took really educating myself about the disease (since I cannot go on the TSH results, which have always been at the bottom of the range or lower, because I apparently have a "non-standard" problem) , convincing my primary doctor to help me when endocrinologists were dismissive since at least she could see the effect the disease was having on my body and what happened to me when endocrinologists lowered my medication and said merely being "in range" was fine, and supporting my position with science.
These are my current labs. I do not test TSH anymore. All of my supporting labs such as CBC and metabolic panel are back to their excellent pre-disease levels except my white blood cell count is near the bottom of the range. My cholesterol has dropped from a high of 232 back to it's normal 166 and my blood pressure has dropped from a high of 196/98 ( ! ) back to 124/70 without a change in diet or exercise. Edema is better....now if only I could lose some weight. I don't think ALL of my hair is going to grow back, but a lot has.
150 mcg. generic Levotyroxine 30 mcg. Cytomel
(this is quite a lot of medication for someone whom the endocrinologists say "doesn't have a thyroid problem " and "shouldn't be on medication" except maybe to slow nodular growth, and SURELY doesn't need T3 because nobody does. Of course, I DID have every hypo symptom)
FREE T4, direct dialysis 1.6 (.8 - 2.7)
FREE T3 4.0 (2.3 - 4.2)
Mid-range for T4 is 1.75, so I am still a little low there. I am most reactive in changes to T3. What do you think ?
I have a multi-nodular thyroid, which has shrunk with medication. Throughout this whole ordeal, the one constant has been persistent respiratory problems and I've had every (negative) allergy test known to man. I get my flu shots, I've had the pertussis shot and the pneumonia shot, yet every year I get sick with some kind of gunk in the chest that turns bacterial and puts me in bed or trapped in the house, sometimes for months. This year, I've been through 3 rounds of antibiotics (yes, I had a sputum test that showed bacteria), spent $100 on prescription cough syrup, and have been sick for 7 weeks and am still coughing. Going back to the pulmonologist in a couple of days. I have read that patients with hypothyroidism are prone to respiratory problems, but have not found ANY information on why or what to do about it. I'm assuming that having below-optimum thyroid function lowers the immune system. I take vitamins, I mostly do all my own cooking and don't eat junk food or prepared or canned foods because I don't like them, as much as for health reasons. If anybody has any information about this, I would be very grateful for guidance.