Not Over Till The Fat Lady Sings

I am so very angry! Several weeks ago I had a renin test and aldosterone test done here at the clinic. Squirt called me Monday (yesterday) to tell me to lower my thyroid meds. I made the big mistake of telling him that I had these two tests done and that the renin came back high and the aldosterone came back low. Well Squirt called me just a few minutes ago. He had spent all day today tracking down those lab results. Squirt called the hospital were they were processed. Then Squirt called the clinic here in town where the tests were done and insisted they send him a copy of the renin and aldosterone lab results. The clinic faxed Squirt the results even though they DID NOT have my permission to send him copies of the results. Squirt was beside himself with joy. The whole purpose of his phone call was to tell me that the clinic here in town had made a mistake and that what looked like an above normal renin level really wasn’t. According to Squirt a renin level of 7 was considered high until a short time ago. Squirt told me that he had talked to the lab technician today and according to the hospital that processed the renin test a level of 7 was just fine for someone my age! (The same hospital lab included the normal renin levels of .4 to 2.3 on my copy of the lab results). If this is true why would the hospital that processed the tests have marked the renin HIGH? Squirt could hardly contain himself he was so pleased that he could call me again and tell me that my test result was normal.

It is clearly in Squirt’s best interest to dismiss the renin and aldosterone results. He is the one who insisted that I go to a sleep clinic. Squirt was the one who was absolutely sure I would be diagnosed with sleep apnea. In his letter to Squirt, the sleep clinic doctor noted that I did not have sleep apnea, that the adrenaline rushes had been documented at the sleep clinic and that I should have my renin and aldosterone checked ASAP. Squirt did not agree and refused to do the renin and aldosterone tests. After waiting for Squirt to change his mind from February 2002 to July 2002, I finally had the tests done at my community clinic.

I have called the clinic here in town and told them never again to fax anything to Squirt without my written permission. (They will never get my written permission).

Why would someone who is quitting his medical practice in the next two months and changing careers go to all this trouble to track down lab results that are, quite frankly, none of his business?

Squirt has taken all my abnormal lab results and dismissed them. Please don’t get me wrong – I am not on my hands and knees praying for high renin levels. However, I am very tired of being sick! I am very tired of passing out, very tired of the nausea, very tired of high and then very low blood pressures, very tired of being awakened at night by the diabolical adrenaline rushes, very tired of my weak arm and leg muscles and the list goes on. Last night I again got only 1 1/2 hours of sleep.

All I can say is that the phone call from Squirt has really upset me. What is wrong with me? Why does he not take into consideration abnormal lab results? Why does he not at least try to get to the bottom of my horrible symptoms? As I have said before, I must have an invisible tattoo on my forehead that only Squirt can see and that tattoo must say, “Please abuse me!”

The weather was lovely yesterday; turned muggy and weird today. Hopefully we get a few more weeks of hot temperatures before the cold weather arrives. In these parts it is not unheard of to have an early frost at the end of August.

Late Thursday night I made a decision which could very well back fire on me. I made copies of a number of the emails which I had received from the Hormone Doctor, emails that I had received between September, 2000 and August, 2002. I delivered these emails to No Name’s office on Friday morning. No Name was out but his secretary assured me she would give him the envelope containing the emails first thing on Monday morning. I can only hope and pray that No Name has a better reaction to the information in these emails than Squirt did.

I always go to my mom and dad’s for lunch on Friday. I really treasure this time with the two of them. Often it is just the three of us and we get a chance to talk and reminisce.

After our lunch on Friday, my dad came back to my place and we worked on our project. My dad was a CO during World War 11 and I am putting together a pictorial booklet as a keepsake of those times. I must say that this project has been very enjoyable as has the time we have spent together.

Wonder what No Name’s reaction to the emails will be? I have an appointment with him on August 21.

After stumbling out of bed yesterday morning, I decided it was time to email the Hormone Doctor. I had slept on an off until 11:30 AM and when I finally did get up, my legs gave way and I fell in a heap on the floor. I was so tired that I could hardly catch a deep enough breathe so that I could hoist myself up off the floor. I basically slept through the whole day finally waking up at supper time with just enough energy to get up and walk around for a while.

Why are there so few good endocrinologists in Canada like the Hormone Doctor? At times like this I wish I was an American. The Hormone Doctor’s very prompt reply to my email reads in part as follows:

“Interesting. What meds are you taking again? It looks like you have primary mineralocorticoid deficiency (low aldo and high renin). It would explain your nausea, lightheadness and fatigue. I would repeat the renin and aldo after lying down for about 10 min and standing up for 30 min. Maybe you can fax me the lab results. I’ve never seen a dex test (he is referring to the dex test I had done in Calgary) like that but would get a morning cortisol and ACTH and also fax the results. I would be on some estrogen prep. Your antimicrosomal antibodies indicate Hashimoto’s.”

Now the “fun” part begins; trying to convince No Name to run the tests that the Hormone Doctor recommended. The last time I tried that, Squirt told me in no uncertain terms that, “American doctors exaggerate all the time”.  The Hormone Doctor faxed a requistion to the hospital in my community with a list of the tests for me.  The Hormone Doctor and I waited for weeks without a word about the test results.  I finally called the provincial lab in my province only to be told that they had dumped all my blood work and urine samples that resulted from the tests ordered by the Hormone Doctor.  The excuse given by the director of the provincial lab was that they did not process tests ordered by American doctors.

What happens when a person becomes to tired and sick to fight the system? What happens to a person when the doctors do not have the capabilities to put two and two together and come up with four? Is my province the dumping ground for all intellectually challenged doctors?

Quite frankly this “old boy’s club” way of doing t that is so prevalent among our physicians has to go. This business of never wavering from a previous doctor’s diagnosis has to go. Squirt explained it very clearly to me when I first asked him for a second opinion. Squirt told me that he had no problems referring me to another endocrinologist or doctor of internal medicine. However, he did tell me that I might be the one that would have problems. According to Squirt, the doctors that I would be referred to might not have any respect for me and my problems because I had asked for a second opinion. Basically the thought pattern of these so called healers is that if a patient has the bloody gall to ask for a second opinion these healers will be sure not to differ from the original doctor’s diagnosis or non -diagnosis. This is exactly what has happened to me.

Squirt referred me to Blonde Bimbo. I asked for a second opinion. Squirt, after warning me about the negative effects of a second opinion, referred me to Leprechaun. This delusional man, whose chair was much too big for him, gave me not quite 10 minutes of his precious time. He was much too busy ruling his little kingdom. Next came Supercilious and he gave me 5 minutes of his precious time. Then there was Dingaling who was told not to investigate me for Cushing’s but to find something else. He obliged by diagnosing me with right sided heart failure. And the list goes on. Of course not one of these doctors would even consider looking at my so called diagnosis and reevaluating it.

My wakeup call came at exactly 7:30 AM this morning. Grandson’s last morning of day camp for this week. As I have done every morning this week, I picked him up at 8:00 AM and together we picked up our breakfast at McDonald’s. This morning we had our breakfast at Papa’s office. The day camp kids were to meet at a huge vacant lot just a block south from Papa’s office. The morning activities included a giant water fight and a spectacular view of the parade route. The annual community parade took place this morning and the day camp kids watched it as a group.  The morning was a great success. When I picked Grandson up at 11:30 AM he had a backpack full of candy!

My appointment with No Name was at 9:45 this morning. I was to receive the results from my latest lab work which included my aldosterone and renin results. No Name seemed very distracted this morning and not focused on my health concerns. He spent most of my appointment fiddling on his computer trying to find the above mentioned lab results. No Name did mention to me that he had written a letter to a doctor of nepbrology. The letter included a description of my symptoms and a description of the lab work I had done at No Name’s clinic. No Name handed me a copy of the summary from the nepbrologist and this summary reads in part as follows: “On looking at the overall picture I wonder how much of what is going on here is psyschogenic related. How much of the leg weakness is real – does she have any objectively found neuropathy.” The nepbrologist then says and I quote, “The question is whether she has periodical paralysis (a very rare condition and usually the potassium is much lower than that), diuretic induced hypokalemic episodes or possibly gastrointestinal losses. The only way to sort through this is to do the following: Send off a blood sample for potassium, total C02, and osmolality as well as a spot urine for Ph, sodium, potassium, chloride and osmolality.”

I find it unbelievable that someone who has never laid eyes on me or spoken to me can presume that “much of what is going on here is psychogenic and then goes on to ask “how much of the leg weakness is real.” I think an appropriate name for this nepbrologist should be NotSoFine.

After fiddling with the computer and handing me a copy of the summary from Not SoFine, No Name stood up indicating the end to my appointment. He handed me a requisition for more blood work which included Osmolality, Urine Potassium (random), Urine Osmolality (random), Urine Sodium (random) and Total CO2. No Name then casually mentioned that he thought he remembered noting that my renin levels had been high. He went on to say that he was unable to confirm this since he could not find my lab results.

After seeing No Name I made my way to the lab to get my lab work done. The lab technician told me that I would have to come back on Tuesday. She was much to busy to do the blood tests that morning. Before I left the lab I asked the lab technician if she could please try to find my lab results. She promised to look for them.

I had to return to the clinic at 1:00 PM to be fitted with the holter monitor. At that time I asked the nurse if my lab results had been found. The nurse looked on the computer and finally had me look as well. I found them almost immediately. They had been filed under June 27th instead of July 17th which was the day they were done. The nurse printed out the results and gave me a copy.

July 17th Lab Results:

Aldosterone was 153 with the lab normals being 110 – 780. However it makes no mention whether the 110 – 780 was supine or upright. According to the lab normals on the first aldosterone test I had done, 110 – 780 is normal for supine and 340 – 1720 is normal for upright. I was sitting upright during this test; I had walked in from the parking lot, sat down and they immediately did the blood test. Makes me wonder if the 153 should have been noted as upright. If that is the case, then my aldosterone level was low. My first aldosterone test in February came back with a result of 162. It was noted as low.

My creatinine was 71 with lab normals being 40 – 115

My potassium was up at 4.3 with the lab normals being 3.6 – 5.0. I had been off my diuretic for 8 days at this point. Interesting that my potassium levels should rise this dramatically when off my diuretic.

Sodium was 143 with the lab normals being 135 – 145.

My renin came back at 7 with the lab normals being .40 to 2.30.

July 26th Lab Results:

Potassium was 4.1 with the lab normals being 3.5 – 5.1. After being back on the diuretic since July 17th, my potassium is starting to drop.

Sodium level is 146 with lab normals being 140 – 148. After being back on the diuretic since July 17th my sodium levels are slowly climbing.

At 11:30 AM, I picked up my Grandson at day camp and the two of us went to my mom and dad’s for lunch. After lunch we all headed out to the big pioneer day celebrations. After a couple of hours I realized that my holter monitor was not working so on the way home I stopped back in at the clinic. The nurse removed the holter monitor and was unable to tell me when it would be fixed. Everything seems to become a waiting game.

Writing these dairies is becoming more difficult for me as time goes on. The situation with my health is wearing on me and I am finding it impossible to be creative. I realize this is probably due to the frame of mind I am in, but it is annoying none the less. It is becoming harder to find humor in my situation. The daily grind of dizziness, nausea, pain, fluid retention, etc. makes me want to find a hole to crawl into and pull it in after me. If I was a member of my family, I would be so very tired of living with a person who was constantly sick with a no name brand of illness. It must truly be a chore living with a chronically ill person who is boring, uninteresting, unenergetic, unimaginative and constantly on the verge of collapsing in utter exhaustion.

My husband certainly deserves kudos for the constant he has been in my life.  I am usually asleep when he leaves for the office in the mornings. If by chance I am awake, I am about as coherent as a beached whale. I no longer participate in running our business. Seeing me in all my “glory” would shock the customers speechless. Suppers are non events at our house. I make them but as simply as possible. A housekeeper comes into our home for 6 hours a week. I am afraid this place would have been condemned by the health department if the cleaning was left up to me. When my husband comes home from work, he certainly does not find a partner capable of stimulating conversation or brimming with exciting ideas.  My husband is an early riser and goes to bed accordingly. After battling with my cramping, crawling legs, I finally go to bed hours later. During the night I am like a yo yo; sleep for an hour and a half and then up for an hour. This man never complains about what I am sure must be many disruptions to his sleep.

With all my medical problems, I am so blessed that I have someone that continues to come home day after day to put up with my by now boring and never ending medical problems. I am so blessed to know that I can trust this man not to desert what must certainly feel like a sinking ship.

All this has led me to wonder if doctors ever think about the consequences an undiagnosed illness has upon a family? Do they ever think about the stresses, worries and hardships these families have to endure? If doctors actually have sufficient brain cells for these thoughts to cross their minds, do they care? My experience shows me that doctors have insufficient memory to process any thought patterns that might include the feelings and worries of a patient; certainly not enough memory to process any thought patterns that might include the feelings and worries of the patient’s family.

Last night was the first time I used my new CPAP machine. I, of course, had hoped for miracles even though the doctor at the sleep clinic had told me he did not think it would help. The adrenaline rushes woke me up three times between 1:00 AM and 6:30 AM. I may have had a deeper sleep during the few times I actually slept. Time will tell.

This morning I received a phone call from No Name’s clinic advising me that their holter monitor for blood pressure was broken so they would have to reschedule my appointment. I stressed to the nurse that I was very anxious to do this 24 hour blood pressure monitoring because my blood pressure was fluctuating so much. She told me they would try to have it fixed by my Friday morning appointment with No Name. I find my self getting more and more impatient with delays. After 4 years of waiting, maybe I have a right to get annoyed.

Grandson and I had our fourth breakfast picnic this week. It is wonderful to spend this quiet time with him. His subjects of conversation are very interesting. He is growing up so fast! Too fast.

My grandson has been calling me at 7:30 AM on Monday, Tuesday and today. He has been calling to remind me to pick him up at 8:00 AM, take him to McDonald’s to pick up breakfast and then continue on to the park where his day camp is being held. We arrive 45 minutes early so the two of us can sit and enjoy a leisurely breakfast. After our breakfast we have time to take a short walk down to the creek to watch the fish. He is attending a 2 1/2 hour morning day camp which consists of lacrosse, golf, soccer, volleyball and baseball. When the leaders and the other campers arrive at 9:00 AM, I head back home and sleep for an hour or so.

This morning instead of going home I headed back to the city to pick up my CPAP machine. During my stay at the sleep clinic in February, the sleep clinic doctor had made this appointment for me. Even though he was not optimistic about the CPAP machine improving my sleep, he felt it was worth a trial.

The instructions on how to use this machine are really quite simple. I was fitted with a nose mask through which regular air will be pumped. The air is under pressure. I will try the machine tonight. Any little improvement with my sleep would be a major miracle.

Upon my return from the city I crashed on my couch and slept on and off for three hours.  It is really very silly that a 60 minute drive in a new, air conditioned car is so stressful for me.

Don’t believe your friends when they ask you to be honest with them. All they really want is to be maintained in the good opinion they have of themselves.   Albert Camus

 Two weeks ago I received a phone call from Squirt’s secretary telling me that Squirt was back at his practice and wanted to see me on July 29th. My first response was, “Why would Squirt want to see me when he made it very clear on May 2nd that I did not need further tests and investigations.” The secretary told me that Squirt wanted to do a complete physical and discuss my May 2nd lab results. I informed the secretary that my gynecologist had done a complete physical in April, I had had a mammogram in May and according to the fax I received from Squirt’s office in May, my labs had been normal. She insisted on making the appointment so I figured why not.

It turned out to be an interesting appointment. Squirt informed me that he is leaving his medical practice to pursue another line of employment. Wonders never cease! I am not sure what motivated this career change but I told him it was a good idea. He will no longer be practicing family medicine.

Strangely enough, today Squirt actually showed some interest in my afflictions. Now that he is leaving his medical practice I guess he feels he can voice some concerns since he will not be around to see the outcome of the culmination of my symptoms. He mentioned his concern over my continued problems with water retention even though I am taking Lasix. He mentioned concern over the bruises on the tops of my feet that remain grossly discoloured. He mentioned concern over the drop in my blood pressure. Squirt ordered some blood work and fixed up the mess that had been made with my prescription during his 6 week disappearing act.

Squirt told me that he would copy my medical records and give them to me before he leaves his practice. He kept insisting that I had to find a new family doctor before the end of September. I told Squirt that I did not understand why he was so concerned about me finding a new family doctor; after all on the 2nd of May he had insisted that I required no further testing or investigations. He chose to ignore that remark and continued on with his spiel about getting a new doctor.

I have decided, for the time being, to continue seeing No Name   At least No Name is friendly and makes an effort to listen. So far he has done every test I have asked him to do. Even though he has no answers for me at this time, I feel that he is sincerely interested in finding the answers. Hopefully his interest and co-operation will continue until I have been diagnosed.

On Thursday I go to No Name’s clinic to get my third B12 shot. I keep hoping for miraculous results.

While at the clinic on Thursday, I will be fitted with a 24 hour holter monitor. My blood pressure has been dropping and this holter monitor exercise is very necessary. For the last week or so the following symptoms have become more intense and frequent; lack of endurance, feeling lightheaded, dizziness, nausea and falling asleep at the drop of a hat.  In fact, at times it is a real struggle to stay orientated on a subject or a conversation.

Summer is half over; a very sad state of affairs. However, I hope that all of you will have the best of times during the remainder of summer 2002.

It is hard to believe that it is the middle of July. Where have the days gone?  We had a wonderful time at the lake from June 27th to July 1st.  I spent a lot of time on the beach were I spent the afternoons reading the beach umbrellas. Papa and grandson played golf, went fishing, and had a great time on the seadoo. Grandson spent as much time as he possibly could at the skateboard park. The weather was perfect with temperatures plus 30 C each day. It certainly would not take much effort on my part to spend the whole summer out there. If only life where that simple.

The weather these last two weeks has been very conducive to spending time in the pool. I have been swimming for at least three hours every day hoping that the exercise will help my leg muscles. So far the exercise has not helped; I am still hobbling around like an old woman. Makes me wonder how much exercise I will have to do before I notice an improvement.

My grandson has been spending most days with me since school let out for the summer. His mom has been working at the office so this works out well for all of us. Grandson has been spending a lot of time at the new skate board park in town. He phones Papa at the office at 6:30 AM. Papa picks him up and brings him to the skateboard park which is near the office. Grandson skateboards till noon at which time I pick him up and take him home with me so he can spend the afternoon swimming. Quite often he will invite a friend over to swim with him.

Seems like my house has been grand central station since the school holidays started. Most afternoons I have a swimming pool full of kids. The activity keeps life from becoming a bore.

This morning I went to have my aldosterone and renin tests done. I got to the clinic at 11:00 AM and presented my self to the lab. The two lab techs spent half an hour trying to find a vein in my hands and arms. My hands were too swollen because of the water retention. One of the technicians tried to find a vein in my arm using a butterfly. No amount of digging found them a vein. It seems that lab technicians have a problem believing you when you tell them that you have problems with your veins. After the debacle with my arm, I suggested they use a vein in my foot but they declined. Finally they gave up and told me to come back at noon and No Name would have to take blood from an arterial vein.

When I returned to the clinic at noon, No Name told me that he first wanted to try the veins in my feet. I was in total agreement. Using a butterfly he got a good vein on the first try. Because he used a butterfly there was no pain. Hopefully these two lab techs will finally realize that no amount of digging will find a vein in my arm.

Before I had the blood work drawn at noon, I asked one of the lab technicians how exactly they planned on doing the test for aldosterone and renin. The lab technician told me that she had called the main lab and had been told it was just a simple blood draw. I asked her if the test required me to be standing or lying down. She checked her lab book and then told me no, it was just a regular blood draw. I hope to goodness she is right and I am wrong.

While he was doing the blood draw, No Name told me that he had looked over my records and felt that I had hyperaldosteronism. He said hopefully the tests I had done today would prove that. I was glad in a way that the lab techs failed in their attempts to find a vein. This way No Name got involved and saw exactly how bloated I get when I have been off my diuretic for 8 days.

Now the wait begins for lab results.

We are experiencing wonderful weather today; in fact I would call it perfect lake weather. I actually managed to finish packing before my 11:00 AM appointment with No Name.  Hopefully we will be leaving by 4:00 PM which will get us to the lake by 6:00 PM. Thankfully all I have to pack are clothes, more towels and beach stuff.  Quite frankly I can  hardly wait to get away for a few days!

My appointment with No Name was short and to the point. I got the last of the June 6th blood test results.  My estradiol was <50, no value was given for my FSH, FSH/LH or my LH, my progesterone was <1.  A note attached to these results stated and I quote, “Estradiol, Progesterone, FSH and LH normal post menopausal values.”   Heaven help anyone who mentions again that all my symptoms are menopause related!  I finally have it in writing that my test results show that I am definitely post menopausal.  I think I will have to send these results to Squirt and the Blonde Bimbo.   On the other hand, I am sure that if I did send them these lab results they would just come up with another cockeyed excuse for my symptoms.

My DHEA-S result was .06 with the lab normal values being 0 – 5.4.  My testosterone came back low at 0.7 with the lab normal values being 0.76 – 2.8.

I did not receive an explanation for my high microsomol antibodies on June 4th.  I hope that No Name eventually finds the time to figure out why I have these particular antibodies and why they are high.

My next set of blood tests will include Aldosterone and Renin.   I will need to go off my diuretic for 8 days prior to these tests.  Since I do not want to spoil my time at the lake, I have decided to wait until I get back home.  When ever I have tried to discontinue the diuretics, I bloat up like a balloon which prompts the question, “Why do I have water retention in the first place?”  So far, no one has been able to give me an answer.

My darling grandson is loosing patience with me and my website.  He thinks it is time for another swim.  Have a great weekend!!!

It is Monday morning and I am absolutely exhausted. The burst of energy I had at the end of May/beginning of June is completely gone. Every morning is a struggle. The fatigue, dizziness, nausea and pain are beginning to grate on my nerves. It is summertime and I hate wasting precious time shuffling around like a worn out old woman.

I have been swimming every day for almost a month. This means that I spend at least 3 hours in my pool every single day unless I am interrupted by a thunderstorm. I am still waiting with bated breath for my muscles to regain some strength and for my body to give me more energy. I was under the impression that this is what exercise was supposed to do. I do however have an incredible tan! I have always tanned easily but it is weird now that two afternoons of swimming has turned my skin absolutely brown. My theory is that excess fat looks better tanned!

This morning I went for my second B12 shot. The shot itself did not hurt but this time I got a honking big bruise. Hopefully this shot will give me the energy I need to make it through until after the July long weekend.

This will be a busy week for me. My grandson’s school picnic is on Wednesday and my husband and I will join him and his parents for lunch on the school grounds. On Thursday afternoon we leave for the lake and will be there until July 1. Our grandson is coming with us and he can hardly wait!  I keep getting these phone calls asking, “Nana, how many more hours until we go to the lake?”

I need to get the house organized since my niece is going to be staying here to look after the cat and the pool. Sounds like it will be grand central station around here while we are gone.

I must get off my butt and try and get some stuff done today. My housekeeper is on four weeks vacation and my house is going to hell in a hand basket.