I found out some of my 2nd lot of blood test results only because I asked for copies of my results to date to be sent to Dr Peter Nash, the rheumatologist who I had an appointment with on Nov 5th unless I got in on a cancellation. They sent the results to me instead. Low and behold, the rheumy has a cancellation for tomorrow afternoon and I agreed to take it. It's in Maroochydore. This is the Whipple's disease guy but as far as I know I don't have it or anything else that was tested for with the gallium scan, short synacthen test for Adddison's disease and the double endoscopy. But tomorrow is the day I officially get my results and pay the gap for a specialist. What other good it is going to do I have no idea except that he will see the thyroid and adrenal test results and etc. It might be another opinion at least. But I already know that this guy does not believe ME/CFS is a disease in its own right.
The 2nd run of thyroid tests showed the same low TSH of < 0.05 mU/L and a slightly elevated (in the red) thyroid hormone of some kind called free thyroxine (fT4). It was 21 pmol where normal is (10-20). Free T3 was normal at 5.8 out of (2.8-6.8).
However, the serum cortisol had changed dramatically between the 12 Sep
and 2nd Oct. The first was low remember, at 170? The second was 360
nmol/L which is well into the normal range of (220 - 660). Don't ask me what's going on inside me for it to swing like that.
There were no results in the pack for the TRAB or the 2nd ANA. The original vitamin D test is also missing but it ended up being sent from Sullivan and Nicolaides to the Queensland Govt pathology in (CASS) in Brisbane because S and N couldn't do it. The first I knew of that happening was a bill in the mail during the week because they forgot to ask me to sign. It is sorted now and getting bulk billed.
I have not written for a while and cannot remember what my health status was then but I had a good run of about three days of getting out and about which culminated in a day with Jan where we decided to go to Moffat Beach for a coffee and look-see. It was blowy so we did not sit looking at the ocean which was what I had been yearning for. The ocean. I was still feeling unexplained anxiety and I thought it would do me good - not to be. We had to walk up the hill (you know it is not far) to the coffee shops which was OK and we checked out a few shops. I seemed to be handling it fine for a change and then Jan decided to get dropped off at our other friend's place who was renting a unit at Bulcock Beach. She had been going through a traumatic time and even Jan thought I should come up and visit. The three flights of stairs were hard work and we sat once there on the balcony looking at the view and having a cuppa, but ever since then I started go go downhill. Slowly at first but then miserably achey and more loose bowels. I started loosing weight faster renewing my effort to avoid starch and because I had such a small appetite anyway. I've been very sleepy too. Gradually my bowels improved to the stage that I could eat tiny meals without pain following and the body-wide pain has been bearable. However last night I had an attack. It happened to be the day I broke my starch limit and ate a toasted Gluten-free chicken sandwich. Co-incidence? I don't know but I did start gurgling and bloating almost straight away but it settled down after lunch so I was not expecting that attack during the night.
During those good days, I managed to fit in a hair trim but I look worse now than I did before. It looks like I had better go back to the more expensive hair dresser next time.
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