The T4 wars, Part 8: My second year of thyroid illness
I am well into my second year of sickness due to the removal of my thyroid.
I don't feel that ill this week. This is great because I know thyroidless people who go 10 or 20 years in misery. But I am recovering somewhat, mainly because I have gone my own way.
First, I am an endocrinologist now. As C Kurt Alexander of Muncie Indiana yelled at me "I am an endocrinologist! I took your TSH! I don't CARE how you feel." So, since the only requirement for being an endocrinologist is learning to read a TSH test, I am now an endocrinologist. The only differences, and I admit they are critical, are that:
1 I know there is something wrong with that TSH test and I don't dose my thyroid hormone based on TSH test results.
2 I care how I feel (which by C Kurt Alexander's definition makes me a GP as well. My honors are just adding up.)
So, I now take, exclusively, four grains of Thyroid S from Thailand. My TSH tests are low (natch), which, to us endocrinologists, means I am hyper. My T4 tests normal and my T3 tests high.
In terms of symptoms, I actually had an idea yesterday. AN IDEA. AMAZING. Do you realize how unbelievable original thinking is for someone who has had a lobotomy... er I mean a thyroidectomy? It is unheard of. Most of the time I complain about brain fog to which my own GP responded that I should retire. Rueful laugh. None of you are getting off quite that easy.
Also, the lingering symptom of my eyes. I see double. A neat little post-surgery treat which is also not C Kurt Alexander's problem because he took a TSH test. Prism glasses have helped me work on the computer, but going places like Wal-Mart with a very busy vista of clothes and boxes, is difficult for me to sort out.
Besides these symptoms, all of my other symptoms are hypo symptoms, not hyper symptoms. If C Kurt Alexander had taken my TSH test this time, he would have instantly seen (as I did, since I now know as much about surgical hypothyroidism as C Kurt Alexander) that the test results say I am hyper. He would have ignored the fact that I am usually tired, disinterested, gaining weight, constipated, hay-like hair, dry skin.... in short, I APPEAR to be hypO -- not enough thyroid hormone. That's what we call in the endocrinologist trade, clinical presentation. As C Kurt Alexander pointed out to me in his tirade, as endos, we ignore clinical presentation and take a TSH test.
But, luckily, ME to the rescue! As a combination endocrinologist, GP, and patient, I do not ignore symptoms, which makes me a kind of super-endo. I ignored the TSH test. I did not reduce my dose. And, zounds, brain fog lifted enough for me to have an idea.
I'm starting to think the TSH test is just for laughs but, if that were true, I wouldn't be an endocrinologist anymore and I hear that they have great conventions.
I don't feel that ill this week. This is great because I know thyroidless people who go 10 or 20 years in misery. But I am recovering somewhat, mainly because I have gone my own way.
First, I am an endocrinologist now. As C Kurt Alexander of Muncie Indiana yelled at me "I am an endocrinologist! I took your TSH! I don't CARE how you feel." So, since the only requirement for being an endocrinologist is learning to read a TSH test, I am now an endocrinologist. The only differences, and I admit they are critical, are that:
1 I know there is something wrong with that TSH test and I don't dose my thyroid hormone based on TSH test results.
2 I care how I feel (which by C Kurt Alexander's definition makes me a GP as well. My honors are just adding up.)
So, I now take, exclusively, four grains of Thyroid S from Thailand. My TSH tests are low (natch), which, to us endocrinologists, means I am hyper. My T4 tests normal and my T3 tests high.
In terms of symptoms, I actually had an idea yesterday. AN IDEA. AMAZING. Do you realize how unbelievable original thinking is for someone who has had a lobotomy... er I mean a thyroidectomy? It is unheard of. Most of the time I complain about brain fog to which my own GP responded that I should retire. Rueful laugh. None of you are getting off quite that easy.
Also, the lingering symptom of my eyes. I see double. A neat little post-surgery treat which is also not C Kurt Alexander's problem because he took a TSH test. Prism glasses have helped me work on the computer, but going places like Wal-Mart with a very busy vista of clothes and boxes, is difficult for me to sort out.
Besides these symptoms, all of my other symptoms are hypo symptoms, not hyper symptoms. If C Kurt Alexander had taken my TSH test this time, he would have instantly seen (as I did, since I now know as much about surgical hypothyroidism as C Kurt Alexander) that the test results say I am hyper. He would have ignored the fact that I am usually tired, disinterested, gaining weight, constipated, hay-like hair, dry skin.... in short, I APPEAR to be hypO -- not enough thyroid hormone. That's what we call in the endocrinologist trade, clinical presentation. As C Kurt Alexander pointed out to me in his tirade, as endos, we ignore clinical presentation and take a TSH test.
But, luckily, ME to the rescue! As a combination endocrinologist, GP, and patient, I do not ignore symptoms, which makes me a kind of super-endo. I ignored the TSH test. I did not reduce my dose. And, zounds, brain fog lifted enough for me to have an idea.
I'm starting to think the TSH test is just for laughs but, if that were true, I wouldn't be an endocrinologist anymore and I hear that they have great conventions.
posted by Walker at 10:49 AM
4 Comments:
Sounds like quite a struggle. I wonder if the Thai 'S' contains
also T1 and T2 as a dessicated thyroid ? ..which seems to
help some people. If so, the medication is also available at
other places
...you are right about doctors; some seem to be 'automated' to the extent the test results are the sole critera. Emphathy is also a
good medical tool and should (perhaps is?) be taught in med
school. Glad to hear you are finally starting to succeed.
My daughter also had struggle with the fog... but is better.
So far she has a reasonable endocrinologist.
ps. I wonder if he googles himself and find himself on your blog?
(my word verification is: POWER)
Pamela, Of course, your daughter doesn't have Graves Disease, so she probably won't have all the complications I do: Like double vision and the like.
And if her endo at least CONSIDERS symptoms in dosing, she could end up ok. The Endo probably just makes sympathetic noises, though. Not to worry, this is a global economy.
Oh, and I am certain C Kurt Alexander or his reps have seen this (and dismissed it). I don't know that C Kurt himself is that much of a masochist, though.
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