Not Over Till The Fat Lady Sings

Wednesday evening I noticed that my left leg was becoming very painful. The pain ran all the way up and down the back of my leg. By Thursday my knee had become very swollen and the pain now radiated throughout my lower leg. I went to see No Name at the clinic. He looked at the leg, poked it a few times and told me that I had a blood clot. He gave me a prescription for Warfarin 2.5 MG and told me that I would have to take this medication for at least a year. No Name also gave me a prescription for a stocking to wear during the day.

No Name gave me a synopsis of the summary letter he got from the Gypsy. Gypsy wrote, “In summary, she’s had Graves Disease treated with PTU initially but had some problems with her liver and then radioactive iodine. She has since been on synthroid and gained a significant amount of weight. She also has microalbuminuria, dyslipidermia, painful Achilles masses which look like Xanthomata, Meniere’s Disease and Plantar fasclitis. Her main complaints are that of muscle weakness primarily of the proximal leg muscles, weight gain, fatigue and what she describes as adrenaline rushes. She sees the Blonde Bimbo and was last seen in June of 2000. She was basically told that she had these symptoms because she was overweight. She has gone as far as sent her CT Scan of the abdomen down to California for a second opinion who thought her adrenals were slightly large.”

Gypsy went on to say, “I think that some of her symptoms can be due to post-menopausal status, which include memory problems, feeling run down, sluggish, lethargic, no energy, some forgetfulness. She does comment on snoring more lately and although we didn’t get into the potential for a sleep apnea, it certainly is there with her size. I think that a lot of her symptoms including the weight gain, the fatigue, the muscle aches, the muscle weakness can be due to an under replaced thyroid hormone and you’ve already started to increase her dose. Head and neck exam revealed slight exophthalmoses, normal extracular movements, normal cranial nerves. No cranial adenopathy. JVP was not elevated and carotid upstroke was normal. She did have a mild buffalo hump beginning at the back of her neck. Thorax exam revealed normal heart sounds, normal chest exam with no adventious sounds or murmurs. Abdomen was obese, soft and non-tender. There was no evidence of any striae and extremity exam revealed proximal leg weakness, specifically at the hip flexors but with normal reflexes, down-going plantars and no obvious wasting or fasciculations of the muscle group. The arms did not seem inappropriately smaller than the rest of her body.”

She closed her letter with the following impressions; Widebertha has many problems, not all of which fit together. Problem #1 is that of her excessive thirst and polyuria. I don’t see any base line lab results for specific gravity of the urine ordered or what her serum sodium is doing. I think those need to be repeated. Preferably repeated after an overnight fast. The polydypsia could also be due to undiagnosed diabetes and I have not seen a blood sugar although I ‘m sure that it’s probably within normal limits. It might be worthwhile doing an oral glucose tolerance test just to see what her blood sugars do with the glucose load. She also drinks diet Pepsi during the day. This is a huge amount of caffeine and maybe contributing to her symptoms of adrenaline rushes at night, difficulty sleeping and then feeling exhausted and fatigued. I have advised her not to take any beverages that have any kind of caffeine in them for the next little while.” She continues on with, “I don’t get the impression that this is diabetes insipidous, although it could very well be, but I think we should just repeat these urine tests with the specific gravity and make sure she doesn’t have any abnormal glucose tolerance.

She continues with, “Problem #2 is the proximal leg weakness is a bit of a concern, because she can’t get out of a chair without using her hands and she has on exam, very limited hip flexor muscle strength. Again, my gut impression is that this is because of maybe a bit of clinical hypothyroidism and that she is not adequately replaced especially given her size. I think we need to make sure that she doesn’t have any element of polymyalgia rheumatica and should probably do just a screening ESR, C-reactive protein, ANA, C3/C4. Again I suspect that these will be normal.

Gypsy goes on to say, “Problem #3 is post-menopausal status. Although she’s had a lumpectomy, it was for benign breast disease and she has no family history of breast cancer. I think that with regards to osteoporosis bone protection and limited cardiovascular protection, I think that she should definitely be put on hormone replacement therapy. This may also help with some of her symptoms. I also agree with the CT Scan of the head and I’m thinking that perhaps a trial of SSRI may be beneficial both for her symptoms and for some potential weight loss.”

Gypsy, at least, bothered to get many of my symptoms right. She seems to have forgotten that I have done a six-month trial with hormone replacement therapy. Nothing changed. My symptoms remained throughout the therapy. As for the SSRI’s, I refuse to go that route until all other options have been tried.

I went to see the Gypsy on April 14th and my husband accompanied me. It was a pleasant one hour drive to her office since the day was warm and sunny and spring was in the air. Gypsy was pleasant enough and actually listened to what I had to say. She told my husband that I certainly did not sound depressed. After answering a lot of questions and a thorough physical exam, Gypsy told me that her greatest concern was my weak leg muscles. She added that my sleep problems were a result of drinking too much diet Pepsi. This included the legs crawling and cramping, severe pain around my Achilles Tendons and the adrenaline rushes, all symptoms I have at night. She felt that only few of my symptoms could be the result of menopause. Quite frankly I was surprised that Gypsy did not address my abnormal lab values. No Name sent her a copy of all the pertinent lab reports. According to the Gypsy, the lump on each Achilles tendon is due to cholesterol. She told me she would write a summary letter to No Name and that she wanted to see me again on April 25th.

Had my appointment yesterday to get the results of the 17-Hydroxycorticosteriods, 17-Ketogenic Steroids, Urine Free Cortisol and Catecholomine tests. The results were disappointing and discouraging. These tests all came back normal. However, some of the other tests did not come back with normal results. When I asked No Name what he planned to do about the abnormal test results his answer was, “I have no idea what to do.” Getting an answer like that certainly does not give me peace of mind!

Mind you, I really wonder about the lab this city hospital. When I went to have these tests done (all part of a 24 Hour Urine) the lab technician brought me a huge book. She asked me to point out the tests that had been checked by the doctor on the requisition. She asked me how they should be done. When I asked the fellow who brought me the jugs if the jugs contained the appropriate acid, he said he thought they did. I asked him if he was sure and he said, “No I am not sure and I guess I can go back and see what the book says.” Turns out he had brought out the wrong jugs. These conversations with the lab personnel did nothing to boost my confidence in their abilities.

According to No Name, my brain x-ray report stated that I needed to have a CT Scan of the brain. The CT Scan has been booked for May 23, 2001.

I asked No Name about the Water Deprivation Test to determine Diabetes Insipidus since my Urine Volumes have been high and my thirst constant. No Name told me that a specialist would have to order the test. He also informed me that he would make an appointment for me to see the Gypsy on April 14th, 2001. The Gypsy is a doctor of Internal Medicine.

Test results:

24 Hour Urine Volume was 4.49 liters – marked High by the lab since lab normal values are .25 to 2.50 liters.

Creatinine Clearance was 127 marked High by the lab since lab normal values are 80 to 125.

Urine protein per day was .22 gr. marked High by the lab since normal values are 0.00 to 0.10 gr.

Urine metanephrines were 3.6, which is within normal limits.

17 Ketosteriods were 37, which is within normal limits.

2nd Urine Cortisol was 86 – lab normals being 65-300.

1st Urine Cortisol was 75 – lab normals being 75-300.

Urine Sodium was 127 and marked high by the lab – normal lab values are 20 – 110 mmol/l.

2nd Potassium was 3.4 and marked Low by the lab – normal lab values are 3.5-5.1.

1st Potassium was 3.2 and marked Low by the lab – normal lab values are 3.5-5.1.

BUN was 8.8 and marked High by the lab – normal lab values are 2.5-7.5.

ALT was 27 and marked Low by the lab – normal lab values are 30-65.

ESR was 26 and marked High by the lab – normal lab values for females are 0-20.

ANA was negative.

C-reactive protein was 19.6 and marked High by the lab – normal lab values are less than 8.

Cholesterol was 6.2 and marked high by the lab – normal lab values are 3.1-5.2.

Went to my appointment with No Name on Friday. The purpose of this appointment was to get my lab results.

No Name was concerned about my low potassium levels and changed my diuretic to a potassium sparing one. He told me that I was definitely not a diabetic. I already knew that since I test at home. No Name stated that my cholesterol level was high at 6.2 but that it was not high enough to cause the condition known as Xanthoma. He had no explanation for the painful lump on each of my Achilles Tendons.

At this appointment I added a second symptom to the mix. I described my incredible thirst to No Name. My mouth becomes so dry that I cannot talk. The lining of my nose becomes so dry that it hurts. Each time I get up at night I also go to the bathroom. Each time I get up at night I am so thirsty that I drink at least 10 oz. of water. My June 2000 24 Hour Urine volumes were elevated. No Name told me that he suspects Diabetes Insipidus.

No Name also diagnosed me with Meniere’s Disease. Apparently Meniere’s disease explains the dizziness, nausea, hearing loss, tinnitus and disorientation I have been experiencing.

No Name is also concerned about my T4. He says that is too low.

I went for more blood work today as well. No Name had ordered a thyroid panel, Glucose Intolerance, Serum Cortisol AM and PM and a 24 Hour Urine Cortisol.

Spent too much time today feeling discouraged and angry.  Quite frankly, if I look hard enough I can usually find some humour dealing with .

I finally called Squirt’s office today and asked if the results of the MRI had come in. His secretary told me that the MRI report stated that everything was normal. This is exactly what I had expected!

The pain in both Achilles Tendons is becoming worse. It is not an aching pain but a sharp and definite pain. It almost takes my breath away. A few weeks ago I noticed a lump on each Achilles tendon. Both lumps are about the size of a small egg and very painful to touch.

On Friday, I saw No Name. I told him only about my Achilles tendon problem. He asked about my cholesterol levels. No Name has ordered blood work that I need to get done this morning. No Name believes I have something called Xanthomata. This is a condition caused by high cholesterol. It can apparently cause lumps on a person’s Achilles Tendons.

In October 1999 my cholesterol levels were perfectly normal. Squirt told me that he wished his were as good as mine. A year later, in November 2000, my cholesterol levels were high at 6.1. Normal lab value range is 3.2 to 5.

MRI of the Brain – dictated on January 3, 2001

Procedure: Sagittal T1 weighted, axial proton density and T2 weighted images of the brain have been performed.

Findings: On the proton density and T2 weighted images, there are two tiny areas of increased signal intensity in the subcortical white matter of the left frontal and left parietal lobe. The findings are non-specific regarding etiology but likely represents early changes of age-related ischemic demyelination. There is no other evidence of an intracerebral mass lesion, hemorrhage, infarction or demyelination. No other intracranial abnormality is identified.

Christmas and New Year’s have come and gone. The holidays went by much too quickly. I will cherish the memories of Christmas 2000.

I received a call just before Christmas from Squirt’s office informing me that I was booked for a MRI on January 2, 2001. I found this very strange since Squirt had told me on November 21, 2000 that I did not need a MRI of the brain. I have no idea what on earth made him change his mind. But then who am I to question the decisions made by medical professionals.

My husband and I drove into the city on January 2, 2000. I arrived at the hospital and was ushered into a waiting room. After waiting about 30 minutes I was taken into the MRI chamber. At this point I asked the radiologist if they were going to inject me with dye for the MRI. The radiologist informed me that it wasn’t necessary. I should have walked out at this point because I knew that if they did not use the dye that provides a contrast, nothing would show up on that MRI. However, I have been well trained to follow the orders of medical personnel. I go like a sheep to the slaughter.

I had been warned about the loud, grinding noise the MRI machine makes. I could barely hear the instructions of the radiologist. Could it be that I am the first patient with a hearing problem to under go an MRI at this particular hospital?

When the MRI was over, I again approached the radiologist and asked him why they used dye in some situations. He told me that in my case the dye was not important. I then insisted on knowing exactly when, where and why dye was used. The radiologist looked at me in frustration and realized I was planning to stick to him like glue until he answered my question. He finally said “Well if you use dye you get a more detailed image and you can see things better.” I looked at the man in disbelief and said, “My point exactly and I just went through a totally useless exercise!”

I received an email from the Hormone Doctor today. He wrote, “Sorry to hear about your difficulties.” He informed me that he had not yet received any of the results from the tests I had done at the country hospital at the end of November, 2000. He asked me how he could facilitate my workup. He then wrote, “The MRI should have been a pituitary MRI (not brain) with gadolinium (atypoe of contrast).” My gut feeling about the MRI yesterday was right. What a waste of time and energy!

Some of my symptoms have worsened in the New Year. The pain in the bones of my feet and hips is worse. The muscle weakness in my legs is much worse. It is now a struggle to get up from a sitting position. God forbid I should ever have to get down on the floor for any reason. I would need to pack a lunch since I would have to stay on the floor all day until someone came home to help me up! Basement stairs are a nightmare!

Just before Christmas I took my grandson to a Christmas celebration at the museum. We of course had to go on the sleigh ride that ended up being quite an embarrassment for me. It took me forever to crawl up on the sleigh even though a step had been provided. Getting off that sleigh was even worse. After a few minutes of struggling I realized that I had two choices – I could take a flying leap into the snow bank beside the sleigh or I could wait until someone realized I needed help. Finally a kind soul realized that I would be spending the rest of the day on that sleigh if he didn’t help me. Just two years ago I would have been able to jump on and off of that sleigh without help.

I got a call from the lab technician at the country hospital this morning. I cannot even describe how I felt after hearing the news he had for me. Apparently the provincial lab refuses to process the tests that were taken at the country hospital from November 29 to December 6. These were the tests ordered by the American doctor.

I called the provincial lab in the afternoon and spoke to the director of the Lab. He informed me that yes they had received all the specimens from the country hospital. The director then went on to tell me that the provincial lab does not accept tests ordered by American doctors. He also told me that he had called The Old Man at the country clinic to see if he, as a Canadian doctor, would authorize these tests. The Old Man said, “No she does not have a problem that would warrant these tests especially not the Vitamin D and Insulin Resistance.” The director of the lab called Squirt and Squirt agreed with The Old Man. According to the director all my specimens were then dumped. This after I spent an hour and a half on November 29 being poked by needles in an attempt to get enough blood for all the tubes!

The audacity of these people! Here I have been secure in the knowledge that these important tests are being processed. I have been waiting with baited breath for the results! Now I know with absolute certainty that these medical professionals do not have my best interest at heart.

When I think about it I realize that hell would freeze over before a doctor in my country would authorize tests requested by an American Doctor. After all, the tests might just prove that I am actually sick. The doctors in my country would then have to eat crow – something they have never done before. They would rather jeopardize my health than take the risk of being upstaged by an American doctor.

I have realized three things about the medical professionals I have the privilege to see. The first is that the medical professionals I see definitely believe it is a great privilege for me to spend a few minutes in their presence. The second thing I have realized is that the medical professionals I see have a great buddy system. Basically it goes like this – “You watch my back and I’ll watch yours.” The third thing I have realized is that there is an unwritten law among the medical professionals I see. That law is never deviate from another physician’s diagnosis.

Christmas is almost here. I will stay away from the medical professionals for a while. Quite frankly I have had enough abuse to last me a lifetime. I will concentrate on Christmas and let the New Year bring what it will. It will be a wonderful Christmas. The whole family will be home. My son and daughter-in-law are flying in from the west coast.  I absolutely refuse to allow my symptoms to spoil my favourite time of the year. I will forge ahead and deal with the fall out after the New Year.

The weather was miserable today. I was up early after a night of very little sleep. How does one sleep when the legs seem to have a life of their own?

However, I had to be at an appointment with the lab in the country hospital this morning. The lab technician was great even though my veins refused to co-operate. When I go for my next blood tests I will wear tourniquets on my arms during the drive to the lab. The results of the tests taken today will be sent to the wonderful Hormone doctor in California.

I continued on to the city for my 11:45 AM appointment with the supposedly greatest endocrinologist in the city. My family doctor, Squirt, had informed me in no uncertain terms that the Leprechaun was the best and if the Leprechaun could find nothing wrong with me then there was nothing wrong with me. What a kind and reassuring statement. Just made me feel warm and fuzzy all over!

I arrived safely at the city hospital quite relieved that I had managed to stay on the road. The road conditions were treacherous. I was finally ushered into the wee little man’s office, which was actually quite large for a leprechaun. I sat down in the chair beside the desk and he said, “What seems to be your problem? Your thyroid is just fine.”

I handed him two pictures (before the weight gain and after the weight gain) and my concise symptom list. He took the list, sniffed at it and threw it on his desk. The Leprechaun then picked up my two pictures, looked at them and started to laugh. I had no idea I looked so comical! When he next spoke the words out of his mouth were “You sure are fat. You must have eaten a lot of food to have changed like that!” My response was “I may live out in the country but we do have mirrors in our houses. I know what I look like.” I asked him about various symptoms like the boils, the vision distortion, my crawling and cramping legs, the pressure in my head, the buzzing in my ears, the muscle weakness, joint pain, etc. He told me that the only reason I had all these symptoms was because I was fat.

I told him that I had gained 50 lbs. between June 2, 2000 and August 26, 2000. He flat out told me he did not believe that. The Leprechaun then made a very profound statement. (I am being sarcastic) He said, “Women like you have no idea how much food you put in your mouths.” A leprechaun should be more careful when he insults an oversized woman. I had to have a good talk with myself since my instinct at that point was to wrap his little heine around his chair.

He sat at least six feet away from me during the whole insult session (consultation). He never examined me, never took my blood pressure and did not look into my eyes. He asked me if I took anti-depressants. I told him I had never been on anti-depressants. What he said next is one for the medical journals. The Leprechaun had the nerve to tell me that if I had really had Graves Disease I would have been on anti-depressants since all Graves patients were put on anti-depressants before they were diagnosed. Maybe the Leprechaun did his medical training by correspondence and just never got the bit about Graves Disease in the mail.

The Leprechaun then handed me a prescription for diet pills. I told him I was not interested in taking diet pills. His last words to me where “Just take the prescription. Once you came to terms with how fat you are, you will want to take them.” Oh yes, he also informed me that he would write a summary letter to Squirt, my family doctor and tell him that his diagnosis was that I was fat!

My consultation with the highly esteemed Leprechaun lasted all of 10 minutes. I was back in my car in the parking lot at 12:00 noon.

I faced a nasty ride home in the blowing snow. Thank goodness no one could see or hear me during the drive home. I screamed, yelled and carried on like a mad woman!! What am I going to do? The great Leprechaun with the highest possible departmental standing has spoken. The Squirt can now wash his hand of me since he told me that if the Leprechaun said I was fine there was nothing wrong with me. I should mention that Squirt did warn me that if he sent me to Leprechaun for a second opinion I would probably not get a very good reception. He said, “Doctors are not very impressed with people who want second opinions!”

Thank God for the American doctor. At least he validates my symptoms and treats me like a human being.

I forgot about my vow and I followed Squirt’s instructions of October 27th and stopped taking the daily blood pressure pill and diuretic. By October 30th my whole body was itching so badly I thought I would loose what little mind I had left. By October 31st I was so bloated that my eyes were slits. I looked like a beached whale! What a boost to my ego! I called Squirt on November 1st and he decided that I should go back on the diuretic. Within 24 hours the itching started to subside. It took almost a week for the bloating to disappear. My blood pressure dropped rapidly the first little while I was off the blood pressure medication. I decided that I would not go back on the blood pressure pills. Needless to say, this exercise in eliminating medications did nothing to relieve my symptoms. All it did was to give me great insight into how a beached whale must feel!

On November 14, 2000, I had an email from the Hormone Doctor in California. An excerpt from his email read as follows, “I finally got a chance to go over your films with our radiologist. On your adrenal CT Scan, your adrenal glands were mildly enlarged and nodular. This could be Cushing’s. Your pituitary CT Scan was normal but pituitary CT Scan’s are not good for finding pituitary tumors. I would go ahead and get some more UFC measurements.”

I had a second email on November 15, 2000 from the Hormone Doctor. One of the comments in his email was as follows, “I think you may have Cushing’s syndrome. From your picture you look like you have it and nodular and enlarged adrenals go along with it. The inability to lose weight and hypertension are also part of Cushing’s.”

Further along in his email he wrote, “I am enclosing a few articles on the adrenal gland and on Cushing’s. I really think you should try to get a UFC done.”

I must add something about the Hormone Doctor. He is very dependable and encouraging. He has given me the inspiration to continue my battle to find a diagnosis.

This morning I received a phone call from the country hospital. The lab has consented to perform the tests ordered by the Hormone doctor. What a miracle! Since I have been pursuing this issue since October 8th, I really did not expect a positive reply today. Wonders never cease! My appointment for the blood work is on November 29th, at 8:00 AM. At that time I will be given the appropriate jugs so that I can complete the three 24 hour urine tests. Can I actually allow my hopes to rise? Will I finally get the tests that will bring this nightmare to a conclusion?

It was a godsend to receive the news about the lab this morning. I had to drive into the city for a doctor’s appointment this afternoon. Squirt was in fine form and he had a new idea and proposition. He felt that my symptoms might be the result of the diuretic and blood pressure pills I have been taking since the Blonde Bimbo put me on them in October 1999. I had no knowledge that could dispute his idea so I agreed to go off the diuretic and the blood pressure medications. Of course Squirt reiterated that he would not do any tests ordered by American doctors. Oh well, what Squirt does not know will not hurt him.

Squirt informed me that he is in the process of referring me to a new endocrinologist named Leprechaun. Squirt insisted that Leprechaun is the best in the city. Which prompts the question “Why did Squirt wait this long to refer me to the best? How does Squirt rate the Blonde Bimbo then? One really wonders about the games our medical professionals play! Squirt also made it abundantly clear that if Leprechaun finds nothing wrong with me then there is nothing wrong with me. Talk about inducing a feeling of peace and serenity! But then I have come to the conclusion that the medical professionals I have seen know absolutely nothing about inducing a sense of well being, peace and serenity in their patients. No, I am convinced that the medical professionals I have seen have a policy to keep their patients as up tight and stressed out as possible. After all what a better way to prove a patient has problems with “panic issues and depression!” If this keeps up when these medical professionals are done with me they will be able to label me certifiably insane!