Not Over Till The Fat Lady Sings

At my appointment with No Name this afternoon, I mentioned my increasing fatigue and exhaustion, increasing water retention, breathlessness upon exertion and increasing joint and muscle pain.  He realized that I was not prepared to leave until I had an indication that a resolution would be found.  We discussed adrenal insufficiency but he is not convinced that this is my problem.  I asked him if he was not concerned about my high ACTH levels.  No Name assured me that he was concerned and mentioned a carcinoid tumor and MEN 1.  We went through some of my symptoms which include flushing, abdominal cramps, occasional diarrhea, high blood pressure, wheezing and breathlessness.  Apparently these can all be symptoms of a carcinoid tumor.  A carcinoid tumor can also increase epinephrine levels which could be an explanation for the adrenaline jolts that wake me up at night.   As I expected No Name did not know what tests to order for a carcinoid tumor.  He assured me he would find out.

My blood pressure today was 169/102 which is really too high.

No Name gave me a prescription for some sleeping pills today.  They ended with “pam”.  I finally consented to give the pills a try to see if I could get some sleep.  I wonder if anyone has ever croaked from lack of sleep?

Before I left No Name gave me a requisition for a Renal Profile including NA, K, Creatinine, and Urea.  He also included TSH and Free T4.

I will spend this weekend researching carcinoid tumors and the testing involved.  On Monday I will hand deliver all pertinent information to No Name at his office.   For all the research I have to do on my own behalf, I should be getting a cut of the doctor’s fees.   By now this would probably amount to a nice monthly income.

 Zking’s Cartoons

The following cartoons are compliments of my 8 year old grandson.  They depict his version of Widebertha.  Grandson hates any long car rides therefore imagining and drawing the cartoons was a great distraction.  I must say that the giggles coming from the back seat of the car were infectious.

After my morning appointment yesterday with Nature Boy, I went to my parents’ house for lunch.  I share the humorous aspects of my appointments with them.  Discussing the ridiculous antics of these creatures we call doctor keeps me from being mired in a sea of depression.

After lunch I had an appointment with No Name.  I needed to have blood work done at the clinic lab to check on my potassium and sodium levels.  No Name finally had some of my lab results back.

No Name mentioned the high ACTH levels but did not seem concerned.  Apparently high serum ACTH levels can be incidental and mean nothing.  However, high ACTH levels can mean pituitary involvement or an ectopic tumor.   From what I have gathered, to have pituitary involvement you need high ACTH levels and high cortisol levels.  To have adrenal involvement you need high ACTH levels and low cortisol levels.  High ACTH levels on their own can signify an ectopic tumor which can be found in the lungs, thyroid and pancreas to name a few places.

I must relate an interesting experience I had at the pharmacy today after my appointment with No Name.  I went to the pharmacy to get my synthroid refilled.   A new pharmacy assistant was on duty and I guess she was not up on what should and should not be said in front of the customers. She logged into my account and entered the information, stopped what she was doing and shouted across the pharmacy, “The computer is flashing a message that says this doctor does not have a valid Canadian medical licence.” The pharmacist came rushing over to the front counter to assure me that this was just a computer error.  Interesting computer error.

I have been off of diuretics since August 22, 2002.  I had to be off diuretics for at least eight days prior to my last renin and aldosterone tests on September 5th.  I do not have the results back.  Instead of water retention pockets, I now have folds of skin on the tops of my hands.  I have no idea why this has suddenly changed.  My breathing has become a problem.  I am finding that I have occasional bouts of shortness of breath upon exertion.  This surprises me.  I thought since the water retention in my hands and legs is less my breathing problems associated with water retention should be less as well.

I am still working out 3 to 4 times a week.  My leg muscles are getting weaker again.  We took our grandson to the Go-Cart tracks yesterday afternoon and I found it difficult to walk around the park and miniature golf course.  It felt like the muscles in my legs were seizing up and could no longer support my weight.   I have lost 25 pounds in the last three weeks.  If this is because of my pathetic work outs at the gym, I will never quit.  I apparently have lost three inches on my waist, two inches on my hips, two inches on my thighs but gained an inch on my upper arms.  I asked the woman who measured me if she was using a different tape measure than she used the day I joined.  She assured me it was the same one!  Quite frankly I do have trouble believing that.  However, my own scale tells me I have lost the weight so I guess I have to believe it.

The fatigue is worse again.  The dizziness and feeling of disorientation stays with me all day.   My body feels like it is on overdrive but I have absolutely no energy to do anything worthwhile.  What I manage to do, I have to force myself to do through sheer will power.

 This morning I had my second appointment with Nature Boy, the naturopathic doctor I saw two weeks ago.  I must say that this appointment was quite the experience.  Somehow we got on the topic of where I bought my food.  I told him my favourite store was called M & M’s, specializing in frozen food.  He was appalled and wanted to know what on earth I would buy at a frozen food store.  I replied that I always bought frozen mashed potatoes for my grandson. The bloody nerve of this man!  Nature Boy informed me that if I was rich enough to buy frozen mashed potatoes then I was rich enough to pay him more than $190.00 an hour for my appointments.  What a way to impress potential long term clients or as I now call myself; a sucker.  Nature Boy then informed me that his hourly rates where going up in a few weeks but that should be no problem for me.  He must have wasted 10 minutes of my precious hour yapping about frozen mashed potatoes.  Thank goodness I did not tell him that most of my meals come from M & M’s.

Nature Boy finally quit ranting and changed the subject to past illnesses and surgeries.  Oh yes I should mention that whenever I spoke out of turn even if just to ask a simple question, I got a very condescending SHHHHHH and then was told that I could ask questions when he was done talking.  He asked me if I had any chronic childhood illnesses.  I replied that I did not.  He then asked me about childhood surgeries.  I told him I had had my tonsils and adenoids out at the age of 11.  He shook his nasty finger at me and said, “See, you did have chronic childhood illnesses,” to which I replied, “No I did not unless you count a snotty nose as a chronic childhood illness.”

Nature Boy continued along the same lines of questioning.  After I had described my 1983 back surgery in as much detail as I could remember, Nature Boy insisted that my memory was faulty.  He claimed the surgery could not have been done the way I described it; that my back would have been fused.  I told him that I might not be the brightest bulb in the tulip patch but I knew for certain that my back was not fused.  Nature Boy gave me my first assignment; I am to contact the orthopedic surgeon who did this surgery in 1983 and get copies of all my back surgery files.   As far as I am concerned this is an exercise in futility.  After my back surgery I was able to downhill ski and skate.  Surgery eliminated my back problem and I have never had a problem again.

After mentioning that I had a lumpectomy done in November, 1996, Nature Boy decided to give me a demonstration on how to do a breast exam.  By now, it took all my will power not to fall to the floor in a heap of hysterical laughter.  Here is this guy sitting in his chair across from me walking his fingers up and down his arms, in and out of his arm pits and up and down and around his pretend boobs.  What made it even harder to maintain my composure was that Nature Boy actually demanded that I take notes.  So my notes read as follows, and you must remember that Nature Boy is demonstrating to me as I am writing,

Sits on chair, puts his hands behind his head, pushes his hips forward, sits in a reclining position, walks up and down his arms, walks up and down and in and out of his arm pits, walks up and down and around his pretend boobs, then walks up and down a triangle from his shoulder to his ears.

What nearly made me loose bladder control due to extreme laughter was when he finished his left side and immediately proceeded to do the same demonstration on his right side.  Me thinks the guy loves himself a bit too much.

Finally at the very end of the appointment Nature Boy got around to the blood tests.  Now you must remember that when I first contacted him, I was told that Nature Boy took these amazing blood tests from each client.  I was told that these blood tests could show anything and everything.  They were used mainly to show food intolerances but if need be they could be used to test for practically anything under the sun.  I was counting on these blood tests to produce some answwers.

When Nature Boy told me that it was blood test time I stretched out my arm in anticipation only to hear, “I only need your finger.”  I looked at him in disbelief.  Nature Boy took a tiny needle similar to the kind you get with a blood sugar monitor and poked my finger.  Then out of nowhere he produced a teeny tiny little pipette which could hold all of 4 drops of blood.  Naturally, the blood test was an extra charge on my bill.

All I can say is that I should have idiot and sucker tattooed on my forehead.

At the end of this appointment, Nature Boy informed me that I was a complicated case.   Apparently in most cases, the complete medical history and blood work can be completed at the first visit.   According to Nature Boy, taking my history and blood work will not take two visits but three.  If I was in need of some comedy in my life I might consider a third session.  Who knows, maybe Nature Boy has some more good routines up his sleeve.  But alas, I have my own source for humor and so have no need to see Nature Boy again.

I have decided to stick with the mashed potatoes.

At Risk For Losing Treatment Options?

The following links describe in detail the legal actions that the College of Physicians & Surgeons of British Columbia are currently taking against Dr. David Derry.

http://www.bites-medical.org/dderry/hearing.html

http://www.bites-medical.org/dderry/history.html

http://www.bites-medical.org/dderry/context.html

http://www.bites-medical.org/dderry/do.html

http://www.bites-medical.org/dderry/media.html

The following exerpt was taken from: http://www.bites-medical.org/dderry/hearing.html#bkgrd

“On June 11, 2002, the College of Physicians & Surgeons of British Columbia succeeded in temporarily suspending the medical licence of Dr. Derry, a Victoria, British Columbia MD who has successfully treated about two thousand thyroid patients. His success was often after specialists had been unable to help these patients. The College did this after removing Dr. Derry’s thyroid prescribing privileges in November 2001 and assuring a Supreme Court judge in December 2001 to investigate Dr. Derry’s thyroid treatment practices. Instead of carrying out their court assurances, they looked through files of Dr. Derry’s patients with other health conditions, and used the non-thyroid-related deaths of two patients as grounds for suspending his licence.”

The College had thus left Dr. Derry without the ability to prescribe thyroid medication for seven months, and then without the means to earn a living. This interim suspension had been planned to coincide with the College Executive Council members’  summer vacations.   All this had happened without a fair investigation into Dr. Derry’s treatment and despite his huge success in treating thyroid patients.

On June 25, a Supreme Court judge, Mr. Justice Pitfield, stated that self-governing bodies must be more accountable. Unless the College holds an investigation into Dr. Derry’s treatment by September 30, 2002, the suspension of Dr. Derry’s thyroid prescribing privileges and medical licence will no longer be valid. This investigation, if it takes place, must be based on clear evidence.

The College will tell you that this hearing is about a doctor whose treatment is “dangerous.” Patients of Dr. Derry will tell you that it’s about a witchhunt of a successful MD who treats patients the way he was taught in medical school because it works—but which doesn’t fall in line with what pharmaceutical companies push or what misleading lab results may indicate.”

Today was my long awaited appointment with the Naturopathic doctor, whom I shall call Nature Boy.  My appointment started at 10:30 AM.   We spent the better part of the appointment going over my medical history and my symptoms.  He was shocked that I had been left without a thyroid supplement from April 3, 1998 to July 25, 1998.

Just to recap, I had RAI done on April 3, 1998.  I was told if I came down with flu like symptoms to call the Blonde Bimbo’s office.  My RAI follow up appointment was scheduled for July 25th because the Blonde Bimbo was going on six weeks vacation and that was the earliest I could see her after my RAI.  I called and complained about a 32 day migraine and 32 days of hemorrhaging but was told that migraines and hemorrhaging were not symptoms of going hypothyroid.  I suffered until my appointment on July 25th, 1998 at which time I had a TSH of 37.  Needless to say I was bloated and feeling very sick; the skin between my fingers was cracking.  Nature Boy informed me that this delay in providing me with a thyroid supplement would have caused permanent damage to my body.

Nature Boy confirmed that the jolts I get at night are possible; he has heard of them before.  He confirmed that a 100 pound weight gain in four months was not because of food consumption.  He asked me how long my tongue had been this colour.  I told him I had no idea since I never really looked at my tongue.  I thought at first that he was kidding but he was deadly serious.  He told me to go look in the mirror which I did.  Apparently my tongue is white and this seemed to have a lot of significance for him.  He commented about the dark spots and patches I have on my arms and hands.  I told him they were old marks from bruises and blood tests that never go away.

Nature Boy told me that after listening to me relate my symptoms and looking at my physical features he was positive that I had adrenal failure.  He told me he would not be surprised if I had the early stages of Addison’s disease.

Nature Boy has arranged for me to come back to see him next week at which time he will do a series of blood tests to confirm his diagnosis.  He will also do a food intolerance test at that time.

Nature Boy gave me an Adrenal Supplement.  I am to take two tablets four times a day.  He also told me to mix an electrolyte solution containing 16 oz. of water, 1/4 teaspoon salt, 1/4 teaspoon baking soda and lemon juice to taste.  I am to sip this concoction all day.  Apparently I would get sick if I tried to drink it all at once.  I am to get some iodine and paint a one inch circle on my arm and observe how long it takes to disappear.

I find it very interesting that Nature Boy and the Hormone Doctor have the same opinion about my health problems.  The Hormone Doctor’s August 8th email mentions the very same conclusion that Nature Boy gave me today.  Makes me wonder if they aren’t right.

This morning was a real rush.  Grandson spent the night which meant I had to get up and help him get ready for school.  I cheated and took him to McDonald’s for a quick breakfast.  Grandson complained that he was not feeling well so I wrote a note to his teacher telling her that he could call me or his papa if he continued to feel unwell.   Of course Grandson called at 10:00 AM, an hour after school started.  I rushed over to the school to pick him up and then dropped him off at his papa’s office.  I needed to get to my appointment with the Naturopathic doctor.  I picked Grandson up just before noon and then the two of us went to have lunch with my mom and dad.

After lunch we came back home and I had a sleep while Grandson played Nintendo.  We had to leave for the Mall at 3:30 PM.  I had to mind the registration table for Grandson’s Ukrainian Dance Club from 4:00 PM to 7:00 PM.  By the time I got home I was over tired and suffering from a rather nasty pain in the centre just below my ribs.

A new gym opened in town in August.  I made the mistake of attending their open house and before I knew I joined.  The gym provides a good work out regime; 30 seconds at each station.  The total workout takes 30 minutes and you can do it at your own speed.  With this workout you alternate between 30 seconds on the machines and 30 seconds running on the spot.  Needless to say I walk slowly on the spot and usually hang onto a machine for balance.  I have to admit I am not a pretty sight.  The owners of the gym must be thankful that there is only one of me.   I am lucky if I manage 5 rotations on the machine; the recommended rotations are between 10 and 14.  I have been doing this at least three times a week since August 20th.   After the workout we are suppose to do some cool down exercises.  I dare not get on the floor; it would be too embarrassing to have to crawl to a chair to drag myself back up on my feet.  I only do the ones that allow me to stand upright and hang onto the railing.  Pretty pathetic is how I would describe it.  When I leave the workout I drag my butt out the door looking like a whale struggling on the beach.   My goal is to be able to walk out the door after a workout gasping and struggling to remain upright.

The phone rang this morning at 8:30 AM.  I, of course, was still deep under the covers hoping for at least another hour of sleep after a very restless night.  It was the secretary from No Name’s office.  She told me that No Name wanted to see me as soon as possible and asked me if I could come in this afternoon.  I agreed.

I spent the morning tidying up the house; seems long weekends play havoc with a house.  My agenda for the next few weeks is to finish recording a select number of old LP’s into my computer, cleaning up the music and burning the songs to CD’s.  I also want to start uploading the videos I have taken with my digital video camera, editing them and then burning them to DVD’s and VSH. So far I have recorded two old LP’s and burned them onto CD’s.  I have been very impressed with the results.  The software I am using cleans up a lot of the static; beeps and crackles you hear on old recordings.

My appointment with No Name was scheduled for 1:45 PM and I arrived on time, good girl that I am.  No Name informed me that a few of my test results were back.

After a discussion of the lab results, No Name handed me a copy of a letter from NotSoFine.  Apparently No Name had sent him a second letter detailing more lab results.  This letter was NotSoFine’s reply.  I must add here that I have never seen or spoken to NotSoFine. NotSoFine’s opinions are based on the letters he is receiving from No Name and his vivid imagination.

NotSoFine’s letter reads and I quote, “Thanks for the data; this allows some narrowing down of the possibilities.  On those values with serum potassium of 2.8 she definitely has an inappropriate renal response in that she was still pumping potassium out in her urine.  That is to say the hypokalemia was not due to re-distribution of potassium nor GI loss but related to excess aldosterone.  The question is, is that primary aldosternism or secondary or possibly she has RTA (renal tubular acidosis)?   I note the initial values show that the chloride is 91 and the bicarbonate is 28.  This more or less rules out RTA.  She had a slight increase in the urea/creatinine ratio.  Taking all this together would narrow the diagnosis down to vomiting-induced secondary hyperaldosternism or diuretic usage.  The best plan is to watch her.  Could you get her off diuretics?”

After my visit with No Name I headed down to the lab at the clinic to talk to the lab technician.  She told me that she had researched the ACTH test and that she would be able to do it at the clinic lab.  I was very impressed.  We made arrangements for me to come in on Thursday morning at 8:30 AM to have the ACTH, the renin/aldosterone, and a repeat of the AM/PM cortisol done.  She will do the fasting blood sugar and insulin the following week.   What a relief to have finally found a lab technician who is willing to do these tests.

The first thing I did when I got up this morning was call the director of the hospital lab here in town. He will from now on be called WeeWillyWooze. After introducing myself, I told WeeWillyWooze about my experience in his lab on Friday morning. I asked him why in the world it was not possible for me to have an ACTH test done in the hospital lab. WeeWillyWooze told me that it was to involved and complicated. The lab at the hospital did not like to do tests that took time and effort. He went on to say that the lab at the hospital operated more like an assembly line; tests were done quickly and without a lot of fuss. I asked him what could possibly be so complicated about chilling a centrifuge, chilling a few tubes, drawing blood and sending it out on ice. WeeWillyWooze informed me that the fridge in the lab was not big enough for their centrifuge so chilling it would be a problem. I asked him if he had never heard of alternate methods namely the big freezers in the morgue. I told him that those freezers would be quite capable of chilling down a centrifuge in a big hurry. I could not understand his mumbled answer. I then asked WeeWillyWooze what he did when an inpatient at the hospital needed an ACTH test. WeeWillyWooze was quick to inform me that patients in the hospital never needed an ACTH test. It had never happened! My response to that was, “No wonder so many patients end up with tags on their toes.”

After my delightful conversation with WeeWillyWooze, I called the lab at one of the city hospitals. I asked to make an appointment to have the ACTH test done. To my horror I was told that I could not have this test in the city hospital if the test had been ordered by a doctor who did not have privileges at the city hospital. This stupid test is becoming a nightmare!

I am tired and will let this issue lie for a few days. Maybe I will come up with a brain wave in a day or two. This constant battle for health care is becoming a real drag! Seems to be a constant battle; nothing happens smoothly. Our medical system has no compunction about putting sick people through hell.

Today was the day I was going to have my lab work done; the labs ordered on Wednesday by No Name and the bi-weekly sodium and potassium. When I got to the lab and presented my lab requisition, I was told by the technician that they could not possibly do the ACTH. It was too complicated. I asked her what was so complicated about it. All she had to do was chill the centrifuge, chill the tubes, take the blood, put it on ice and send it to the city. She insisted that this was all much too complicated, time consuming and difficult. She went on to say that I would have to drive into the city and have the ACTH test done at a city hospital. I realized that there was no point in arguing with her so I consented to have blood drawn for the Cortisol AM and PM, Random Blood Sugar, Sodium, Potassium, Adrenal Antibodies, and Insulin tests. The renin and aldosterone will have to wait until I have been off my diuretic for 8 days.

Today was my appointment with No Name; the appointment that I had been anxious about. Wonders will never cease. I broached the subject of Squirt and his demand for my test results. No Name assured me that Squirt would never again receive copies of my medical information unless I signed a document authorizing such a transfer. I was so relieved to hear this. According to No Name the secretary at the clinic made a mistake when she faxed my test results to Squirt without my consent.

No Name went on to say that he had read all the emails from the Hormone Doctor and was willing to do all the tests that the Hormone Doctor had recommended. I nearly fell off my chair! Sometimes you do get what you want.

No Name ordered the following tests namely, Cortisol AM and PM, Random Blood Sugar, Sodium, Potassium, Adrenal Antibodies, Insulin, ACTH and a Renin and Aldosterone.

No Name’s demeanor was quite different today; quite different than it had been at my last appointment. Today he again seemed interested in solving the riddle of my medical problems.

Since the tests that No Name ordered today seemed rather involved, I decided to go over to the hospital to have my blood work done. I was told by the lab tech at the hospital that I would have to fast for some of the blood work. Since I was having my bi-weekly potassium and sodium done on Friday, I made arrangements to have all the tests done at the same time.

It was a gorgeous day today so I spent the rest of the day soaking up the sun and swimming in the pool with my daughter and grandson.