Any input would be greatly appreciated since my endo can't seem to come up with any ideas but still wants to tinker w/ my meds.
I am 4 years post RAI to treat Graves disease. I had a VERY rough go at it trying to get my thryoid actually functioning again. I'm pleased to report that I've been feeling good for the last year. Currently I am taking 200mcg of Levoxyl. Because my TSH continued to come in out of range, low, I let my current endo convince me to drop the measly 5mcg of Cytomel I was taking back in January. She's always been great about requesting Free T4 & Free T3 in addition to the TSH and I continue to go & not push for anything different because I"m actually FEELING good, ya know?
Well.... I saw her in April & my TSH was still very low (both Free's were looking GREAT!) and she said we woudl continue to monitor things b/c sometimes it takes a while to get the Cytomel out of your system. Whatever. So, I saw her the other day & my TSH is still low (.01 in a range of .35-5.5). (((fyi, my Free T4 is 1.38 w/ a .61-1.76 range & Free T3 is 2.9 in a 2.3-4.2 range))) So now my endo wants to start tinkering w/ my Levoxyl dose b/c she doesn't like the TSH being that low. She still thinks that the Cytomel is affecting my reading even though it was a TINY dose & I've not taken any since January.
I think the bottom line is that my endo does not know why my TSH is so low while my hormones look so good & rather than doing nothing because I feel fine, she feels we need to start playing with my meds in order to make the labs look good. Because I've been feeling so good, I've totally slacked on my thyroid research & truly have no idea why my TSH is so low. Does anyone have any ideas? All I can figure is it has something to do with the RAI? Any thoughts, suggestions, ideas would be greatly appreciated!
It most likely isn't because of RAI, because I've never had RAI and my TSH is .02. But I'm not hyper either. For whatever reason, no matter how small a dose of thyroid med I take, my TSH becomes suppressed. My former endo didn't know what to make of that. Even though my untreated TSH was 7, she told me to stop taking the hormone and wait until I got sicker to treat. I am very fortunate indeed to have found my current doctor who understands TSH is meaningless during treatment, and that as long as the free hormones are in range, to heck with the TSH. I don't know why it happens, but the exogenous hormone most likely disrupts the normal feedback loop somehow.
Talk, talk, and talk some more to try to make her understand you feel well and that your actual thyroid hormones are well within the range. Tell her you want to leave the med as it is, and that if your free hormones ever approach the top of the range, you will agree to try a slightly lower dose.
For people who ask the same question as you, [You're far from the only one who's asked... It's true!] I used to name thyroid experts who espouse the theory that TSH is meaningless in treatment. Dr. John Dommisse is the only one I can remember now. Truth is, so very, very few patients ever can hope to change an MD's mind, it's kind of pointless to even quote other experts when trying to make a case. It's usually a lot easier to change MDs instead.
There is no logic to this idea that a suppressed TSH means "Danger!!!" Especially when the actual thryoid hormone is well within range, and the patient feels fine. After suffering for many, many, many years bc of this TSH ideology, I can tell you that if it was me, I would NOT BUDGE off the dose you are on, if you feel just fine at that dose. Let her experiment on herself.
Sorry to sound harsh, but she is not being rational.
Over my 20+ year hellish nightmare of disability due to Hashi's, my TSH was 1.6 usually - always less than 2.0 - and so I was always told there was nothing wrong with my thyroid. Now that I have finally received a correct dx, my TSH became suppressed at only 50mcg Levoxyl, so the Endo kept me there, even though my Frees (which I begged for and insisted on) were still in the basement. And I was still virtually bedridden. I kept asking her one question: "If my TSH was perfectly normal when I was completely disabled, then isn't it possible that the TSH is NOT the best indicator to use to adjust my meds?" She couldn't answer with any type of cogent reasoning, so she discharged me from the practice.
Long story short - for some reason, the TSH is NOT the best indicator of thyroid health for some peopole. In my case, and apparently in midwest1's case, even a tiny amount of exogeneous hormone lowers the TSH. I will bet that in 20 years, that will be a given among Endo's. Unfortunately, it is still heresy today.
Good luck. But PLEASE don't change your dosage if you are feeling well. It may take you years to get back on track!
Thank you both very much for your responses.
"Let her experiment on herself" That truly had me laughing out loud! What a great line!
I'm sorry to hear the both of you had to endure being sick before getting a doctor to come to the conclusion that TSH doens't really mean anything. I think you are both right though - chances are I'll never be able to convince my doctor otherwise, but then... where do I go from here? I guess I'll be hitting my HMO Endo manual soon enough
I had RAI 2004 and what an unpleasant experience afterwards. There is no way I will let a doctor keep me sick, when there are other means to keep myself well. I don't want to die of heart failure, with high cholesterol clogging up my arteries. Surely do not want to take antidepressants at all. With my life being about 1/2 over anyway at the age of 53, why be miserable for the rest of it.
** RAI ablation for Graves disease 2004**
Dr. John Lowe has written another book, this one called the "Tyranny of the TSH." I'm not sure if it's in print yet, but he uses scads of research that shows the TSH is not an indicator of thyroid health, and that docs who "tweak" you hormone based on the TSH and even Free T4 are way off. Those values have been shown to vary dramatically even in individuals, depending on the time of day and the season of the year. One study showed that the TSH varied like 140% in men from AM to PM! It became elevated just from losing sleep for one night. The studies supported the idea that the variations seen from one set of labs to the other (like when I have my labs drawn in April, and then again in July) may not show the need to adjust the exogeneous hormones, but may just be NORMAL variation.
Point being that Dr. Lowe supports his assertions with cold, hard scientific evidence. He has another book which I got through interlibrary loan, called "The Metabolic Treatment of Fibromyalgia." It also contained tons of reference material - if you could get a copy of either book (the latter book is way too expensive for a normal person to buy), you may be able to convince your doc with published studies.