Halloween House Re-shuffle

S has signed up for a much cheaper share house in Boondall and picks up the keys on Halloween.

B is moving back to take over St's lease on Halloween. Aiden, her brother will stay there with B but St will be moving out herself in a few days. She has found a place of her own which is furnished and is happy to have someone take over the lease. B is much happier to be closer to his boy.

There seems to have been great dividends from getting truck work and not having to pay rent while B has been at his Dad's these couple of weeks. The car is going to be fitted out with the required gear on Halloween too. R will be driving to HB, then taking B in his car back to Maryborough, then getting a Relative on his ex's side to run him back to HB and his car. Meanwhile B will have to wait 3 hours for the job to be completed and then he can drive home. An added bonus to the day will be an interview for B at a boat building business where he hopes to work. Let's keep our fingers crossed for a happy Halloween.

I had a bad crash day yesterday following on from wrestling with Herringbone Fern which has taken over the yard. My 20 minute effort was too much despite there hardly being a dent in its clumping. It was compounded with gut problems and pain all day.

Today (31st) is no good for me so far. Feeling faint and still have gut problems so I think I may have to cancel going to the doctor.

Faster Crash Recovery

I'm pleased to say that I am having more good days lately because I am recovering faster from any backsliding due to over-doing it.  It still may only be one day active enough to get out or do gardening and two days resting but that is a big improvement over weeks going by stuck here.  Today is a recovery day with increased pain levels, glands, headache, etc etc because yesterday I was quite active  washing the car, doing housework (I smashed a glass), washing laundry, ducking up to the shops and the day before I also was quite active so I got two days.  Yesterday I was still feeling good enough to continue on with living but I could not be sure how I would be if I did any more so I took the scooter out for a ride and resisted the urge to go for a walk.  It turned out to be a wise choice because I can tell I need to go slow today and I am back on the pain killers after a couple of days break.

I'll be trying very hard to pace myself between now and Wednesday when I will be going to see Dr Andrew and hopefully get an explanation about my thyroid tests and a reconfirmation about the adrenals since I have a copy of that test to take with me.  It will be way too early to discuss the Lyme testing because I do not expect that back for ages.

I worry about coming to visit for Christmas because I am so easily swept up in the moment if I am feeling even half OK and tend to disregard my warning symptoms and also from the point of view of my diet.  Also, S has made noises recently about "turning up on my doorstep" and he has already refused to go to his Dad's now that B is there.  But I also worry that I worry too much. LOL.  How would you like S to come for Christmas too, then I would not have to think of him taking over here?

Thyroid Uptake Scan

Yesterday I was running lively on adrenaline.  Today I've been dead duck.  It wasn't so hard to sit and wait all the time that was required today at Lakeview Imaging.  The doctor writing the report had me in his office a couple of times asking about thyroid blood tests I'd had.  What he wanted was eventually received via fax but not before getting last year's normal TSH from my local GP instead of getting this year's from the Noosaville GP.    Then X-ray and Imaging sent the adrenal ultrasound instead of the thyroid ultrasound but eventually they got it right but having 2 GP's and not wanting to offend any is a current worry I have as well as a complicating factor today.  Craig does not even know about a thyroid problem and Andrew should have been the one referring me for a thyroid scan not a rheumatologist who was reviewing another's test results.  I hope they are man enough to not get offended.  It is just the way it happened and I feel just as shoved around as anyone at the moment.  I wasn't planning on seeing Craig before seeing Andrew again on the 31st since the latter is really the only one who can give me any hope of being treated for ME/CFS since none of the others even believe in it.  It's all fibromyalgia from them and this thyroid stuff just happened to pop up as an added bonus.  Just like the gallstones and osteopenia have.  I meant to say yesterday that Peter Nash said my adrenals were functioning fine even though the cortisol was low.  That was the short synacthen test.  No explanation for it being low at times and alright at others.

Back to the doctor at Lakeview Imaging, he firstly mentioned a cold nodule and gravely reminded me that they cannot tell from these scans whether cold nodules we cancerous but also that it is not likely.  I got the impression I had a cold nodule.   But after receiving all the tests that were faxed the report he wrote says no such thing.  You can see for yourself below.

I left about an hour and a half later.  I was only in the scan room for about 20 minutes and I went in on time first to get the "stuff" injected into a vein like they would use for a blood test.  Painless.

The advantage about getting thyroid tests faxed was that I got to see one of the tests I was not expecting to find out about until going to Noosaville on the 31st.  TSH antibodies. The trouble is that he saw no hot nodules so in the results below that mentions an autonomous acting nodule you would think that it would show "hot".  In the results below it cannot be the other option re medication because I am not on any.  It seems I don't really know why I am hyperthyroid.  I still have to wait till 31st.  I am not sure what a toxic goitre is in the absence of any disease like Grave's or Hashimoto's.  Isn't this an endocrinologist's domain?

 

I got another surprise when I stopped at the pharmacy on my way home to get yesterday's prescriptions filled.  The neurontin even in generic form at this the lowest dose is $17.85 which is not the concession rate.  Let's hope it doesn't work????  Strange thing to say but if it is going to give me side effects like its cousin Lyrica then I won't be taking it long.  

I have taken half an Endep tonight or less since I could not split the pill evenly.  If it is like any other tri-cyclic I have tried I could be dopey all day tomorrow so if I am not around you'll know why.  He told me to take it at 6pm but I forgot until 6.30 and now I am drowsy enough to go to bed.  It is used for pain but being drowsy has not eased up my aching legs.  It is probably used for quality of sleep too.  For some reason I can't remember.  Goodnight.

Rheumy thinks I should exercise

Rheumy thinks I should exercise otherwise the fibromyalgia will cause more and more deconditioning. Pfft to his suggestion. I do too much too soon when I am we'll enough just trying to lead a normal life. And we all know what happens. Now my GP will never get me a disability parking permit. Yes he said go slow, don't hurt myself etc but he does not see post exertion relapses as part of ME yet he says all my symptoms even blurry eyes are fibromyalgia aside from the gut and thyroid. He prescribed Endep low dose and Neurontin for fibromyalgia and I already have the Tramadol. That's how he treats it . End of story. No more appointments for what I was sent for in the first place. I'm back on my own experimenting with the meds.

As for my gut, he was annoyed Stephanie nurse practitioner played doctor and I didn't get to have a proper consultation with a gastroenterologist before I went under or post procedure. He has not even got a copy of the colonoscopy report so I had to tell him. He wants me to demand to see a gastro. He is annoyed because he referred me to a public one but that I was denied access. Otherwise he wants me to go private which is huge big bucks.

Going by the copies of the reports I have about my thyroid, he ordered a thyroid scan with dye which I am having tomorrow afternoon at Warana at Lakeview Imaging. I half expected Dr Andrew to take things to the next level with my thyroid so this is probably a good thing to already have done before I see him. That way I can get my results when I see him next since I made sure that he will be getting a copy.

As for Lyme disease, the rheumatologist refuses to believe people can have Borrelia infection unless they felt getting bitten and got the rash. Seems he has not met some of my friends online nor does he seem to know that ticks inject an anaesthetic precisely so you can't feel the bite. Especially the tiny nymphs. Who's to say they have not been filled and already dropped off before being seen. In fact it is by their third and fourth meal of blood that they are more likely to release the Borrelia spirochetes and co-infections assuming they themselves are infected with them.

As for the testing, he says Westmead is the most accurate. Others would disagree. I had heard about false negatives but he says false positives are common. I'm just passing on his opinion. I don't think the state of medical expertise in Australia is to be trusted for the most part and it won't be until the Government back Lyme research and at least get in line with the rest of the world.

Just Family Stuff with Photos

Did I tell you B is living at his Dad's now?  I think he is leaving all his furniture for St to have when she moves in December.  He was going to go back and get his computer.  All I was told is that they were not getting on well enough not that they considered themselves a couple.  I think he would go back to HB if he could find a job but he has not been able to and is considering going back to Widgee Welding.  The Blackbutt job has been discarded.  He's been with his Dad since last weekend unless something has changed again already.  He phoned me from there but I was disappointed when the reason for the call was for a loan till Monday.  I wasn't going to help him go out and get drunk which was probably his plan.

Connor came over for an hour and a half after school on Friday

It turns out that he "owns" the car that was given to both of them at the time although St says he still owes her for her half.  I think the furniture would more than cover it.  He was paying that package deal off.  He still can't drive the car because it has not been set up according to regulation but now that his Dad is involved things could happen faster.

 

Connecting his ipod to my Internet to update games etc

S is not going to move to the place he had planned to on the 20th (yesterday).  They would not accept a bond loan or something so he is still in the second place.  He is getting a bit more work during the week and not just on the weekends at the car wash.  He speaks to Connor on the phone and he was the one that arranged the visit with me.  I think he wanted more of an excuse to call and he asked me to text him when C was here so that he could phone back on his mobile and speak with him (with the speakerphone off) but C said to me "Don't you think Dad has been acting a bit strange lately?"  I don't know what he meant.  He was more interested in the games and he did not even move off the banana lounge while he was here.

He has really badly chapped lips

 S still says so many weird things when he messages me on Facebook that most of the time I don't know what he means.  I'm supposed to cue him for something.  No idea. He said he is speaking to someone else too and something about a scholarship.  Whatever it is, it is worrying him.

No more photos please Nanoo

I met Xavier for the first time when Ange and the family came to pick up C and head off to Sizzler in Maroochydore.  He has the same look as Esha, not at all like C.  A's Facebook page had a photo the other day saying he had just rolled over by himself for the first time.  She also told me that Connor was recently bitten by several ticks.  He had four of them.  I was surprised that she knew nothing about Lyme disease.  I could barely tell her the basics - about preventative antibiotics because they were in a hurry but she promised to look it up and I sent a link and a  message telling her I knew a doctor on the Coast who was Lyme literate.  I don't think he has been sick from it.  I can't help but worry if he doesn't get any antibiotics soon.

Anyway, I had better go and lie down for a while.  Feeling a bit weak and wobbly and I have to get there to the doc tomorrow regardless.

UPDATE: "scholarship" is the name of a book he is currently writing although he spells it his own way

More Blood Test Results - thyroid and cortisol

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.

Thyroid Ultrasound Report

I asked for this copy when I went for the adrenal ultrasound and they gave it to me.  I also phoned for the results of my blood test and the person who answered the phone did not give them to me but said that she would check with the doctor when he came in and would phone me back.  They didn't.  Not today either.

Today I had to wee a mid-stream into a specimen jar at 5am for the second day in a row.  I also had the blood taken for the Borrelia PCR and the courier has been and gone.  I had a very hard time fitting it all back into the outer container despite not changing the arrangement of the ice gel pack which had been frozen in my freezer since its arrival.  I ended up bashing the ice pack with a hammer to alter its shape enough to fit things in but I could not get the blood vials to stand upright.  Hopefully it is packed tight enough not to matter because the courier said it would not be guaranteed an upright position anyway.  It's now just a box in an overnight priority satchel.

I've been really uptight (racing heart and pacing and jigging) lately - waking up like it.  I had one really bad day crying because I could not stand it that day but I can live with the level it is at right now.  In fact, the gut problems have stopped as well.  I am quite capable of walking the supermarket and not paying for it.  I'm tired and edgy that's all.  It could be my thyroid because it was sore down there after the ultrasound and I have had a hard to swallow throat but it has eased off now too.  Still have these blurry sore burny light-sensitive eyes though.

Thanks Mum for you know what.

Third move in Brisbane coming up

It was S on the phone last night that cut our call short.  I have never figured out how to do conference calls on the portable phone but it would have been a good opportunity.  He asked for Zena's phone number so that he could call you both but I suppose he didn't because by the end of our call he decided that he had had enough of talking on the phone.  He may call tonight if you are lucky.

I found out that he was no longer at Crowley St and I had just forwarded on mail that morning.  He does not seem to mind going back to pick it up. 

I found out that he plans to move again so he did not bother telling me where he actually was living.  Another share house.

I found out that he only works about 4 hours a week at the car wash.

I found out that he plays Soccer on Sundays near where he used to live.

Throid Ultrasound

Medline Plus Encyclopedia Image

This morning I had my blood tests and thyroid ultrasound done.  I am booked in on Thursday for the adrenal ultrasound at the main Imaging place  in town instead of the local one - early because it requires fasting.  Also Medicare "does not like" having two done on the same day.  Go figure.

I could not get much out of the technician who did the ultrasound when I asked if anything showed up.  He said that he did not want to alarm me but yes there were a few things.   I guess if it is urgent I will be contacted by the referring doctor who gets the report otherwise I am going to have to wait a long time before I find out what it means.  All I got given were the pictures.  The tech said I could ask on Thursday for a copy of the report because it would be in the main imaging place by then and they might give it to me.  I must remember to ask.