Over-active thyroid, Under-active adrenals

The title is a summary of some of my test results that were discussed on Friday with Doctor Andrew.  My appointment with him was for 1:30 and I got in at 5:30.  I'm not going to talk about that except to mention that they say there is no gain without pain and I don't think it should have to be like that!

My friend did not come with me this time because she was being a friend to the family who was a victim of a home invasion.

The test results

All tests related to blood cells, liver function and cancers were negative.  Iron and B12 levels were normal so I've been doing OK in that regard for at least a year now.

Kidney function (including glucose and electrolytes) he remarked as being fine but Creatinine was low at 38 umol/L (should be 50-120).

ANA (Antinuclear Antibody) test showed a low titre of 160 (normal < 80) in an observed "speckled" pattern.  I have had a positive to this in the past as well.  It is a non-specific marker for Lupus but the other markers I had tested (P-ANCA and C-ANCA) were negative.  It is getting retested in the next batch of blood tests.

Serum cortisol was low at 8:40am 170 nmol/L instead of between 220-660.  It indicates low adrenal function so my adrenals will be getting an ultrasound.  However, the short synacthen test I had earlier this year supposedly indicated that I did not have Addison's disease.  Serum cortisol will be retested via blood test too.  Doc wrote next to the results "natural cortisone" so he does not prescribe steroids at least not at this stage because they can turn Lyme bugs into super bugs which I am sure is a very simplistic explanation on my part.

TSH (Thyroid stimulating Hormone) was low at .05 (normal 0.40-4.00) and is consistent with hyperthyroidism.  This may be associated with:

• a Thyroiditis (Grave's, Hashimoto's, Subacute)
• autonomously active Thyroid Tissue
• relative T3 overproduction, or
• severe intercurrent illness, "Sick Euthroid" state
• hypopituitarism (rare)

Dr Andrew said Thyroiditis and specifically mentioned Grave's disease but it will be retested with more detail and I will be having an ultrasound of my thyroid gland.  I know that the last time I had a TSH it was within the normal range but I often have unexplained bouts of anxiety and racing heart is worse sometimes.  It can explain diarrhea too and I still have loose bowels.  They are worse again today because I have cut back on the pain killers I was needing for the aches and pains so I am not benefiting from their binding-up side effect.

The only pathogen that showed up was Mycoplasma pneumoniae (a positive IgG) which I already knew I had in the past.  It can be a Lyme disease co-infection but as far as I understand it is quite common as a disease in it's own right - "walking pneumonia".  It is not enough evidence for Dr Andrew to put me on his antibiotic protocol so he is insisting I borrow the money to get the PCR for Borrelia test done.  He suggested my children as a source of funds.  Isn't that a joke?  At any rate, it is going to take some time for me to get it organised so I do not have another appointment for 6 weeks.  We are hoping I can get someone down this way to draw the blood etc.  I have to ring Australian Biologics to find out what to do and order the test kit and it is the Queen's Birthday (again) tomorrow so it will have to wait until Tuesday.  Yes, I intend to bung it on my credit card and go ahead.  I have not got time to go through the procedure to get out some Super.

Having said that I need a positive to Borrelia to be treated, people with negative test results to Borrelia are being treated and improving but it is likely to cause problems for the Australian doctor because it is an unconventional treatment not without risks.  I gather my doctor is already under scrutiny.  He is one of the few who are prepared to stick their necks out for their patients or their beliefs.  As an aside I see that Dr Sarah Myhill is being taken to court again and in cases like that, it is the patients that come to defend their doctors.  I have known for years that my local doctor Jo always did everything exactly by the book.  It is a shame there is no book for ME/CFS. She has no idea.

I think it was the test marked food RAST on the pathology request form that was labelled "Allergic Disease Investigation" on the pathology report.  I had a low reaction to one food group mix so it is impossible to tell what would be causing the reaction without further testing.  You can make some deductions.

Total IgE was 56 kU/L within the normal range

Allergen specific IgE:
Nut mix
(Peanut, Almond, Coconut, Hazelnut and Brazil nut)  was negative

Seafood mix
(cod, shrimp, tuna, salmon and blue mussel) was negative

Tropical Fruit Mix
(Peach, Kiwi fruit, rockmelon, banana and pineapple) was negative

Food mix
(Egg white, Milk, Wheat, Soya bean, peanut and cod) was a low positive (class 1)

Dr Andrew has marked this for further testing (extended RAST and ISAC suggested on pathology results form) but it is not included on my next list of blood tests.  Either he forgot or knew that it could not be bulk-billed.  It looks like I will need to be paying for something else but it can wait which is what I assume he is thinking.

My new pathology request form now includes:

TSH, ANA, fT3, fT4, TRABs and cortisol which can all be bulk-billed

I am resting and poking about and more comfortable than last week but since doctor day I have had really blurry eyes and have gone hoarse after talking on the phone (to Rob at one stage who is all exited because his son is giving him some money to by land or a house in Cracow if he can find one cheap enough) and the morning pain and loose motions continue along with the generalized aches and other stupid little things.  I'd be happy if we could live without having to eat because it would save me from a lot of gut problems.  I sort of wish Karla was right when she says that we will be living on air and light when the earth enters the fifth or is it sixth dimension - as we become less dense she says.

Main Street Cracow as I saw it in 2007

New Doctor for ME/CFS Labs

A long day to say the least.  Jan came with me for the drive to Noosaville to see Dr Andrew.  He always is running behind schedule so patients phone all the time to find out how far behind he is today.  I had an appointment at Midday, got there at half eleven and got seen at 2pm.  At half past eleven we knew we had an hour and a half to kill so we got Red Rooster and sat and ate at Noosa River.  Then we waited in the surgery waiting room for an hour.  My heart rate got up to 148 but it was more adrenaline today and I had no great problems sitting except that I would get waves of nausea every so often.  Anyway, the centre had kids single lounge chairs low down to the ground so guess who sat in the kids chairs with legs out stretched?

I don't like initial consultations.  It is all me talking (at 100 mile an hour) working my way from being a 16 year old to the present time in medical history.  Impossible in half an hour so you know you are doomed before you start.  But at least it is bulk billed so coming back to finish in a fortnight's time is not so bad financially.  It's the petrol and lunch money and rebound illness that are the all important considerations.  And $450 Lyme tests.  The rest of the tests he wants me to have are bulk-billed.

I have a man here who wants to put a reason behind CFS and he thinks it is a parasite.  He also said if I tested positive for it I should get the boys tested given certain problems they have. This parasite that he said doesn't have a name I am not sure if he meant separate and apart from Lyme Borrelia or not.  We ran out of time.  I'm supposed to phone Australian Biologics Testing Services in Sydney when I have the money for that Lyme Borrelia PCR.  He did not even ask about any tick history I might have had.  I still remember running to Mum ahead of you Zena, yelling "Mum, Zena has a spider stuck in her neck". I had never seen a tick before then except engorged on GiGi at the same caravaning trip up the NSW Coast somewhere.  Where was that?  The other tests ordered which I will have done ASAP include:

FBE, ESR, E/LFT's, TSH, ANA, B12/Folate, Bence Jones Protein, EPP (Serum) Ferritin, mycoplasma/leptospirosis/Q fever/chlamydia/rickettsia/typhus serology, vitamin 1, 25 OH D (ENA/ANCA as indicated), cortisol, food RAST, IgE

In relation to this parasite I think he meant, he asked if I had anything to do with farms, cattle, chooks.  So he was told about farms, cattle, and chooks with their stick-fast fleas but I forgot to mention unpasturised milk and beef being hung in a shed overnight before being minced, packed and consumed by us. The joys of marrying into disease.  Anyway it was enough of a reason to run some of those tests above.  I have tried to look some of them up.

A New Doctor, More blood tests

Labs requested by Dr Mark Forster: fasting homocysteine, lipoprotein A, B12, vitamin C, folate, rbc folate and a mid-stream urine M, C & S.

I looked up the tests online.

Homocysteine test to determine if a person has B12 or folate deficiency,
a screen for people at high risk for heart attack or stroke. It may be useful in someone who has a family history of coronary artery disease but no other known risk factors. Its utility for this purpose, however, continues to be questioned because the role, if any, that homocysteine plays in the progression of cardiovascular disease (CVD) has not been established. Routine screening, such as that done for total cholesterol, is not yet recommended.

Lipoprotein A test  your risk of developing heart disease; as part of a targeted screen for cardiovascular disease (CVD)

When you have a family history of elevated Lp(a) and/or a family history of premature CVD; when you have heart disease but your lipid profile is normal or shows only mildly elevated cholesterol and/or low-density lipoprotein cholesterol (LDL-C)

Folate test is a measure of how much there is in the serum or plasma (liquid)

rbc folate is a measure of how much there is inside the red blood cell

MCS urine test is a urine culture test looking for microorganisms (because I have had a pain in the right side)

Next week I have another dentist appointment and the IBD clinic where I should get the results of the faecal calprotein test on stool sample and other blood tests that I had a few days before Christmas.

This doctor is going to cost - he does not bulk-bill but gave me some sort of discount so I get all back from Medicare bar about $20 but he sells the vitamins and supplements so that is on top.  I already had vitamin D3 and he says from previous blood tests (he had QML fax them) that I am low and should be taking 3000 units a day.  I've been taking 1000 on the days I do not get sun.  Not enough.

He sold me zinc sulfate and an iron complex too.  I am to return to him in a week but I made it two weeks since I have so much on next week...for me anyway.

Local News: Kawana Shoppingworld hires out mobility scooters for free - still have to walk from the car unless in a handicapped zone and that is one thing I have not got yet - a disability sticker for the car.  Anyway I tried one out the other day.  Makes a huge difference as to how long I can last shopping.  I got a lot of looks because plastered on the front is the ad board saying "free use in shopping centre" or some such.  Would you believe that if I went too fast (and it was already speed limited for shopping centre use) then I got motion sickness?

Still have not heard from B and S has phoned but gets irritated with me asking anything like "Have you seen Connor for his birthday yet?" then saying "I hate phoning you" so he wants me to "be smart in what I say".  But I blew it again this time so he ended the call.  He still has his job, he got a raise for each sale and he does not like where he lives.  He actually phoned because it is raining and he wanted my car for the week.  I said no.

My latest invention - 1 scoop Amazing Grass Green's Superfoods powder

half diced raw beetroot
sprig parsley
handful grapes
handful frozen raspberries
orange/mango juice concentrate
cold water

in a blender

Crappy New Year

Crappy New Year - woops I mean Happy

I'm sorry but I have not got any good news.  My New Year hopes were pinned on the Doxycycline working, assuming that it was a chest infection that had me feeling so flu-like and painful (more than usual).  The short story is that the glands in my neck and under my arms are really, really sore and I am also getting extra pains in the stomach.  This really feels like glandular fever and the pain is getting to me because nothing is working on it.  The pain, heat and redness on the soles of my feet has had me try putting my feet on frozen things.

I have been feeling kind of peculiar (which is not very informative) since taking those antibiotics and so I began to look up some of the side-effects.  The one that really is hard to fathom is the side-effect called "flu-like" symptoms.  I had flu-like symptoms to start with and now they tell me the side effects are flu-like symptoms so how am I supposed to judge that?

The only thing that has surprised me is that I have not had any diarrhea from this medication but I guess it eliminates the idea of a flare-up of micoplasma P. and even Lyme disease (the tick fever) is treated with this drug and since I feel no better maybe I can assume I have not got that either.  If it is glandular fever (again), then I am still not going to know for sure since the blood test didn't even include a check for EBV titers and we all know that antibiotics do not work on viruses.

So who is going to look after me while I convalesce?  You both know I had glandular fever for three months way back when so I expect that I am not going to be going camping for a while.  I cannot believe that I have had this thing creeping up on me since mid Nov and before my little visit to Gympie I was not that great either so I am starting to feel really sorry for myself.

I have nearly run out of toilet paper, and sugar and meat and veggies and fruit and.......on it goes so I am going to have to drag myself out to the local shops like it or not.

S has turned up twice, "felt bad vibes", and left again quickly - it seems he has returned Connor to his Mum already which makes a mockery of his statement that he had to have him for a week by order of the courts.  Yesterday's visit was only to collect my portable TV antenna but I refused to give it to him especially now that my main house antenna has for some unknown reason resulted in bad snowy pictures.  It seems he has no antenna socket in his bedroom at this share house and he is wanting to avoid sitting in the lounge room with everyone else to watch TV.  I don't want to try and predict what is going to happen there.  But what am I going to do if he comes back here especially now that I badly need a housekeeper?

If I do not get a phonecall from the doctors today, it will mean all my blood tests were clear and I will be left in this agony with no help once again.