So, now you both have me thinking (always dangerous), and I have a question for each of you:
deM - Why was your TSH tested originally?
Sally - Do your FT3 and FT4 levels run really high in order for you to be symptom-free?
Yes, "hefty" may be a bit of an understatement at 160 lbs.
I'm afraid I'm a bit of a wimp as far as thyroid meds go. I'm one of those "odd" people (I don't believe I'm odd, but the explanation goes on for a while) who is quite comfortable in the lower end of the reference ranges. The minute my FT3 and FT4 popped into the bottom of the range, I was symptom-free. But, I had one of those doctors who wanted to "nugde my numbers up", even though I felt just fine...sound familiar?
I'm on 75 mcg (and although I hate to admit it, I'm both shorter and weigh more than you do...you're like my husband...I hate people like you!). My new (at the time) endo tried increasing my dose about a year ago to 81.5 mcg per day (yes, that's 6.5 more than I'm comfortable with), and I was hyper within ten days or two weeks. Tachycardia. Anxiety. Insomnia. Heat intolerance (after a liftime of being cold). The whole nine yards. We backed down to 75 again after a three day hiatus, and hyper symptoms subsided completely after a couple of weeks.
Yes, I wish you luck, too. Doctors can be unbelievably stubborn. Keep us posted.
hi,
yes very interesting. It is not unknown to need such high levels, but not usual. I take 225 mcg of dessicated. If converted to "equivalent" amount of T4 med I'd be on nearly 300 mcg. Normal dose, according the bottle is 125 mcg. When i told my endo the dose (I self adjust based on levels, but keep him informed, he looked alarmed and quickly took my bp and pulse - both of which were low. So he's happy I'm not hyper.
Will look forward to seeing your results. Your doc should be interested too!
And again, thanks for caring...
Yes, my doctor did indicate that she was sort of on terra incognita with my 250mcg. dose- as you know, Synthroid's most potent form is a 200mcg. pill, which necessitated my taking two tablets a day, one of 200mcg., and another of 25. I'm sure you're right, that for someone of my body-size (I'm 5'10", and something like 160lbs), this is "hefty". I recall that when the test results came back indicating the need for me to go beyond the single-pill barrier, she seemed genuiinely apprehensive, even a bit apologetic.
Now: What was your highest tolerable dose? What side effects did you suffer? Ostensibly, I have drifted through this experience like a submariner watching a fish-drama through the window of his bathysphere. But as I've said several times now, the notion keeps niggling at me that somewhere, somehow, I am being harmed by all this hormonal manipulation.
Well, I shall have to muster up quite a bit of that assertivenes in which I am notoriously lacking in order to obtain the results of those tests you have expressed an interest in. I wish me luck!
You're right...all of this doesn't quite jibe. It's amazing that you never had symptoms, even with a TSH of 20-30. However, it's also amazing that you could have been taking 250 mcg at one point and not felt some ill effects of that if in fact you never needed the meds to begin with. 250 mcg is a pretty hefty dose...I'm assuming you're not a very large person, since you're fit and eat well.
If your TSH did come down (and, therefore your meds were lowered to 225), then the same problem I have is unlikely. I have pituitary resistance to thyroid hormone. In PRTH, the pituitary lacks the enzyme that converts T4 to T3. Since the pituitary doesn't have enough T3 for itself, it "assumes" (damn those pituitaries) that the rest of the body doesn't either, so it just keeps pumping out TSH. Now, I'm very sensitive to thyroid meds and increases were gruelling for me, so the increases stopped and the TSH remains around 20 (my FT3 and FT4 are in range and I am asymptomatic). If I had been able to tolerate large doses of meds would TSH have eventually come down? I don't know. I do know that with other resistance issues (peripheral resistance), massive doses of drugs are required to alleviate symptoms and suppress TSH. I don't know if PRTH would respond to huge doses eventually, or not. Anyway, just thinking out loud a bit...
I'll be interested to see your FT3 and FT4 when you get them...always like a good mystery! Also, you might want to get antibodies tested, TPOab and TGab, to see if you have Hashi's, the most prevalent cause of hypo in the U.S.
You caught my goof, thanks. Yes, it is 225 mcg, and yes, it took years to arrive at this level. Most recently (about a year ago), I was brought down from 250 mcg because my TSH level was apparently edging below normal. As I have said, however, all of these adjustments in dosage were based purely on test scores. Throughout this experience I have been the same old me, feeling fine, remarkably illness-free, (it's been almost 3 years since I last called in sick at work), able to trudge mail up and downhill in all kinds of weather. I look on the whole process with a bit of bemusement, but every now and again I wonder if I'm being a poor steward of this amazing machine that I am in, and that I am.
Just so that there is no misunderstanding...you are taking 0.225 mg (225 mcg) Synthroid...correct?
Has your TSH come down? Was your dose gradually increased to 225 mcg over the years?
I'm impressed by the level of knowledge you brought to my question! I certainly have not been tested for actual thyroid hormone levels, nor for thyroid antibodies- my doctor is only concerned with bringing and keeping my TSH readings within normal limits, using Synthroid (the dose I am taking now, 2.25 mg., seems to be the 'right' amount at the moment). I don't have any side effects from this medication; in fact, it seems to have no effect on me at all, but like most people, I find it unsettling to be told that I will have to take a drug every day for the rest of my life when I have never shown symptoms of disease. As a matter of fact, I remember that I balked at taking the Synthroid for the first few weeks after my diagnosis, until my doctor put some fear into me by mentioning the damage to my heart and other organs that could result form leaving my condition untreated.
In any event, I am truly grateful for your rapid response to my query. I'll try to get those tests done as soon as possible.
Yes, the problem with testing only TSH is that TSH is a pituitary hormone. It's only function is as a "messenger" to tell your thyroid to produce more thyroid hormone. The actual thyroid hormones are T3 and T4. TSH can be affected by many factors in the hypothalamus/pituitary/thyroid feedback cycle, so it is a very poor diagnostic of thyroid dysfunction.
I doubt that exercise and good eating habits would raise your TSH to those levels (20-30). However, since you had no symptoms at the time of diagnosis with a TSH of 20-30, then pituitary imvolvement shouldn't be ruled out. Have you been regularly being monitored for FT3 and FT4 and TSH since diagnosis? If so, please post your results with reference ranges. Which meds and what dose are you on? Have you ever had thyroid antibody testing?
My TSH hovers around 20, even though I am euthyroid, due to an enzyme deficiency in my pituitary. Basically, for me, TSH has to be ignored.