May I start by thanking everyone who responded to my original post, as you provided me with both useful information AND the "fighting spirit" to keep trying in the face of some pretty obstructive/nasty doctors, and heartbreaking symptoms.
I now recognise that I had all the childhood signs of hypo, including the insane cholesterol levels and very early periods, and believe I may well have been hypo for 35 or more years. I also suspect that it is essentially a problem with T4 conversion to T3, which might explain why my lab results (T4, TSH) usually didn't look all that bad, even when I was semi-comatose at times. Every symptom you have discussed on this website in the last few months, is one of mine, or my family members'. I have suspected Chronic Fatigue Syndrome for 10 years, and Fibromyalgia for several months. (Indirect Thyroid link here?)
I now know a little more than I did at the time of my last message, so I am reporting in for two reasons.
1. that I now have new questions. and
2. in case anyone else is still searching for a strategy to get a doctor who will listen, and would like to hear from the successes and setbacks of others.
For clarity, may I say that I am in Australia, where I cannot take myself to a "Top Doc" specialist, without a written referral from a General Practicioner. HMOs are not an issue here, but GPs are reluctant to embarass themselves in front of specialists, and I suspect there may be government pressure on them, too, due to our semi-nationalised medicine system. This has been the main sticking point for me-- In my opinion, GPs are too overworked, don't know enough, won't give you a long enough appointment to take a medical history, etc, so they can't be convinced to run non-routine tests or write controversial referrals, or do any problem-solving of their own.
So, I tried the following:
1. ditched my patronising, otherwise-excellent GP and tried my mother's GP. I knew he was patient and kind, but had still been writing off my mother's similar suffering as "getting Old". I reasoned that if he saw her 41 year old daughter completely unable to work, with the same symptoms, he might take us BOTH more seriously. And he sort of did, for about three appointments.
2. I got him to test me For Hashimoto's disease-- I proved negative, and I started to lose him then. He believes the 50micrograms of T4 I am already taking have "controlled" my hypothyroidism. (read normalised my TSH)
Question: Is it possible to have autoimmune thyroid problems but still pass the Hashi's test?
Question: Can anyone recommend a good reference on types of T4 conversion/T3 absorption problems?
3. I hassled him into humouring me with a referral to a "Top Doc" I found on Mary Shomon's site, described as "patient and thorough" (and on my side of the city of Sydney). I found him to worship at the altar of TSH, to be distracted and resentful of my attempt to describe my symptoms or medical history ( i had them itemised on paper if he didn't want to listen), and downright dismissive of me "Huh, I wouldn't have even given you the 50 micrograms of T4! I've got a patient with a TSH of 460!" (I wonder if he was the guy who wrote him up as a "Top Doc"?).
Question: If the "Normal range" begins at 0.5, and results of 460 are even possible, doesn't that mean that the statistical reliability of the test is highly suspect at/or near both ends? Wouldn't even the 5-10 range be a little unreliable?
When I described being so weak that I couldn't stand up to take a shower, and so foggy that I would lose full consciouness and "come to" when the water ran cold, he said "Everyone in Australia is tired today." I gave him the benefit of the doubt on that comment and asked him what he meant. He looked at me like I was nuts and said "the Pat Rafter tennis match last night!"
-Does anyone ever feel like they're living in a Monty Python Sketch? Maybe the one about the dead parrot, who was "just pining for the Fjords".-
He also told me that I couldn't possibly have had Rheumatic Fever as a child, as my heart is undamaged, and proceeded to give me inaccurate info about heart tests. He ordered tests of my reproductive hormones ("normal"), then wrote an abusive letter to my new GP, getting my medication and symptoms wrong and demeaning me AND the doc for allowing me to "flit from specialist to specialist". ( I had seen 1 neurologist for my paralysed arms and he was my first Endo-- we're talking 35 years since the last Specialist!!)
Needless to say, my well-meaning new GP is now too terrified to refer me to anyone else, for example the "Top Doc" in Southern Sydney described as "kind, and prescribes T3". Getting to see him is my new goal, so I'm GP hunting again.
4. Next, I found a Fibromyalgia/CFS "Top Doc" who is a GP with qualifications in Chinese Medicine , Nutrition and Homeopathy. I think that is as close to a "holistic physician" as we come in this country, and since she is a GP, I DON"T NEED A REFERRAL. I rang her for an appointment and was given a time in October! I'm taking this as a GOOD sign. Maybe she will diagnose/treat me, or refer me to a more open minded Endo. Maybe it'll just degenerate into the Python's Cheese Shop sketch. I'll let you know what happens.
I hope this message made sense. I'm fighting brain fog and voice-activated software, here.
Thank you again everyone, and good luck/better health to you all.
Sandra lowe
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