Not Over Till The Fat Lady Sings

This morning I had a lovely surprise. I had sent some of my lab results to the menopause doctor in the United States. Part of her reply read as follows, “The estradiol was high if you were taking the premarin….if not…it was fine on its own…..you are probably Cushing’s because of your reaction to the medication.

She went on to say, “Not all doctors understand what lab values mean….so I am not surprised at all with your endo. Ear buzzing increases with progestins….and too much serotonin. Can also be part of a thyroid problem.”

I had an email from the Hormone Doctor on October 17th, telling me that he had received the films of my Adrenal CT Scans and my Pituitary CT Scans. An American radiologist who is very experienced in adrenal and pituitary CT scans will read these. I am anxious to see what the American radiologist has to say. Maybe there is some hope forming in my soul.

The response from the American doctors has been amazing. Wish I had this kind of response from my doctors.

This morning I called the director of Lab Services at the City Hospital. I asked if my American doctor (the Hormone Doctor) faxed lab requests to them, would they do the tests and send the results back to the American doctor. After waiting for a reply all day, I was called in the late afternoon and told that this would not be possible at their lab.

Tomorrow I will call another hospital and another lab.

I will not give up! I have decided that a favourite pastime of doctors is to see how far they can push women like me. We are easy prey! They see a 50 something woman walk into their consultation room and they think, “How crazy can we make this one before she stops seeing me”. According to the doctors I have seen, being 50 years of age determines immediately that my symptoms are either hysterical or menopausal. They are idiots if they think that after 50 years of living my goal in life is to be “hysterical”. If “hysterical” is what I wanted, I would have crawled in a hole 30 years ago. Of course they do not use the term “hysterical”. They use terms like panic issues and depression. Crazy is what they really mean. Menopause is a normal phase in life. It certainly does not come with the debilitating symptoms that I experience. But then maybe I am “one of a kind”.

Today meant another drive into the city for me. Had an appointment with Squirt, my family doctor. On the ride into the city I kept up a steady stream of conversation with my self. (I have been told you can talk to yourself all you want and it is okay. It only becomes a problem when you answer yourself back). I kept trying to convince myself that today would be the dawning of a new era of medical treatment for me. I must have been delusional! I mentioned to Squirt that I was corresponding with an American doctor who had told me I needed certain tests done. I humbly and kindly (yes I can be both humble and kind when the need arises) asked Squirt if he would be so kind and write out the requisitions for the tests this American doctor had recommended.

Poor Squirt. I nearly yielded to the temptation to feel sorry for him. His under lip quivered and he asked me in the most pitiful voice whether I was seeing another doctor. I had not realized that Squirt and I had such a close and I-am-the-only-doctor-you-can-see relationship.

I assured him that so far I was seeing only him, the Blonde Bimbo and The Old Man at the country hospital.

Squirt then squared his shoulders and gave me his opinion on American doctors and their diagnosis. I have conveniently forgotten what he said.

I asked Squirt if he would please let me do another 24-hour urine cortisol but the answer was a very firm no. He told me that my 24-hour urine test in June had been just fine. I mentioned insulin resistance and Squirt said he would have to do some research on insulin resistance and then decide whether I could have the fasting Insulin tests done. So the waiting game continues!

To appease the Blonde Bimbo and Squirt I agreed to try Premain .625 and Novo Medrone 2.5 at the end of August. I told Squirt today that these medications did nothing to alleviate my horrible symptoms. Squirt told me to keep taking them for another 30 days. After all the Blonde Bimbo had assured him and me that all I had to do was take these two pills in addition to the little white one I took for my thyroid and then my nasty symptoms would really disappear. Not one nasty symptom has disappeared!

My body is now in a full state of rebellion! The symptoms are now definitely marching to the beat of their own drummer. The bugs buzzing in my ears is constant now. Whenever I try conversing with people I have a hard time hearing them because of the parties those bugs throw. I had no idea that bugs could be so noisy. I actually get disorientated from the constant buzz in my ears. When I speak my voice sounds like it is coming through a long tunnel. The dizzy spells are no picnic. The vertigo is a nightmare. The vision problems cause disorientation and nausea.

And oh dear God the nights! I had no idea that the nights would become such a struggle. I am awakened 2 to 3 times a night by the crawling in my legs or by what I can only describe as an adrenaline rush. I am beyond tired.

But I must pick myself right back up and tell myself to smarten up. After all, two of the great minds of our decade, Squirt and Blondie have told me that there is nothing wrong with me but a little depression and a lot of fat!

If only the bugs would shut up and quit their shenanigans.

On September 13, 2000 I sent the Hormone doctor two pictures of myself. One picture was taken in August 1996 and the other picture was taken in October 1999.

Today I had another email from him. He wrote, “Got the pictures – quite a change. You should be evaluated for Cushing’s. I would like you to have a 24-hour urine done for urinary free cortisol (UFC), 17Hydroxysteriods and creatinine. Also get a fasting insulin and glucose done.”

This should be an interesting assignment. I can just imagine the reaction of my doctors when I put forth that I want these tests done! I am sure the earth will shake and the heavens will rumble! And heaven help me when I tell them that I want these tests because an American doctor has requested them! I am quite sure the doctors here will consider this the ultimate betrayal!

However I am the one who should feel betrayed. I am turning into Bessie the porker and nothing is being done. My face looks like a big red balloon, my muscles are failing me, my bones are painful and the fatigue is out of control.

Received an email from the Hormone doctor today. He listed a number of suggestions, that read as follows:

1. Thyroid – I think you have impaired conversion of T4 to T3. What was the normal for the free T3? What was the regimen of synthroid and cytomel that you were on? Can you send me some lab values when you were on both? Of the lab values you sent, were you on estrogen? I think you may need to be on less synthroid and a touch of cytomel a few times a day.

MY COMMENTS:  I have been trying to tell my doctors that I have impaired conversion from T4 to T3 since the fall of 1998. You think they would listen.  In fact, I believe that because I mentioned it, they made damm sure that they would never acknowledge that I might have a problem with conversion. Blonde Bimbo was mad when I told her that the cytomel was not working – so mad that she refused to alter the dosage I was taking. Instead of taking the time to try alternate doses of cytomel she brushed me off. My T4 and T3 have never been consistent since I started taking synthroid in July of 1998.

2. Eyes – do you have Graves Ophthamopathy. Have you seen an ophthalmologist that specializes in Graves? The Graves eye disease can persist or worsen after RAI.

MY COMMENT:  I was sent to some guy who came off the ark with Noah. The man was so old he could barely move and he called me “dearie” – big mistake.  I was told that all the other ophthalmologists in the city were booked up for the next 6 months. I never got the results from the exam.  All the old guy told me to do was buy some eye drops at the pharmacy.

3. Cortisols – Maybe you have Cushing’s.  What were the cortisol and ACTH values and what time of the day was the specimen taken?  Do you have striae, bruising, and a round red face?  Is your obesity central?  Do you have trouble sleeping?  Can you scan a picture of your face now and a few years ago and send it to me?

4. MEDS – I am not crazy about either metoprolol or HCTZ.  Both can cause fatigue.  You may have low volume inside your blood vessels but high outside.  You can check blood pressure and pulse lying down and then again after standing for 30 minutes.

5. I like the estrogen patch (climera 0.05 mg. and up) and pure progesterone (prometrium 100 mg.) better than premarin and provera.

6. Do you have endocrine problems in your family?

7. Any other medications?

8. There is something called cervical stenosis, which gives people chronic fatigue – a neurologist might help you diagnose it.

I am impressed! Now to try and convince my doctors here in Canada to look at his suggestions.  That will be a battle royal – quite frankly I think that hell will freeze over before they will listen!

I decided yesterday that I had to take some action on my own. I emailed a doctor in the United States who specializes in menopause. I sent her a complete list of my symptoms and asked for her advice. I was amazed to receive an email back from her early this morning. Her email read in part, “You need to have your records reviewed by a GOOD endocrinologist as you are suspicious for Cushing’s syndrome….and the progestins/premarin with all their antibodies etc. will make you worse.”
(I noted in my email to her that I was taking progestin/premarin to appease my doctors).

She then wrote, “Here is a doctor to contact.” She gave me the name of the Hormone doctor in California as well as his address and email address.

She then went on to say, “He has done very well with patients other “experts” have told all the wrong information etc……see if he will review your case.”

Never has an email gone out faster than the one I sent to the hormone doctor today. Hopefully the man will take pity on me when he reads my list of symptoms.

I decided yesterday that I had to take some action on my own. I emailed a doctor in the United States who specializes in menopause. I sent her a complete list of my symptoms and asked for her advice. I was amazed to receive an email back from her early this morning. Her email read in part, “You need to have your records reviewed by a GOOD endocrinologist as you are suspicious for Cushing’s syndrome….and the progestins/premarin with all their antibodies etc. will make you worse.”
(I noted in my email to her that I was taking progestin/premarin to appease my doctors).

She then wrote, “Here is a doctor to contact.” She gave me the name of the Hormone doctor in California as well as his address and email address.

She then went on to say, “He has done very well with patients other “experts” have told all the wrong information etc……see if he will review your case.”

Never has an email gone out faster than the one I sent to the hormone doctor today. Hopefully the man will take pity on me when he reads my list of symptoms.

I cannot believe how naive I was in 1998.  Actually I was downright ignorant.  I submitted to RAI in April 1998, which is probably the biggest mistake I have ever made in my life. Life has been a continued nightmare of symptoms since then.  Sure I had horrible symptoms before RAI but I never in a million years agreed to trade those symptoms for a new set of diabolical ones.  I agreed to RAI because I was told I would get my life back and it would be symptom free.  What a bunch of liars I was dealing with! Absolute consummate professional liars!

I received a phone call from the Old Man today. He informed me that my CT Scans were normal.  My biggest fear has been realized.  I am back to square one. Old Man says he wants to see me on Monday to change some of my medications.

Old Man now thinks that I might be feeling this way because of the Hydrochlorothiazid 25 mg. I take for water retention.  He also says that it could be the Metoprolol 50 mg. I take for blood pressure.  Old Man claims he knows of a medication that can take away the leg cramps and leg crawling at night.

I saw Squirt yesterday to get a refill on the medication I take for migraine headaches. Squirt acted like he had experienced divine intervention and now knew exactly what my problem was.  According to Squirt my problems are purely menopausal.

He was a bit shocked at the over 50 lb. weight gain in less than two months.  However, he was not shocked enough to use his brains.

Squirt presented me with a packet of Permarin.  He has assured me that this pill will change my life.  Ya right!  Just like Synthroid and RAI have changed my life!

Of course I am in menopause! No one is disputing that fact!  But for the love of _____, all my symptoms are not menopausal symptoms!

I have never had a hot flash in my life.  I do experience extreme exhaustion, sleepless nights due to leg cramping and crawling and sleepless nights due to being awakened with a jolt that I can only describe as an adrenaline rush in my stomach.  I am experiencing excessive weight gain, hip, leg and foot pain, continued muscle weakness in my legs even though I swim daily and of course, the dizzy spells.  The disorientation that accompanies the dizzy spells is very annoying.  I have boil like eruptions in unmentionable places and spots of darker pigmentation on both sides of my face.

Quite frankly I now believe that doctors think that women my age should be put out to pasture. They seem to believe that a minimum quality of life is just fine after you hit the magic age of “50”.
CT Scan of the Brain – dictated on August 11, 2000

Procedure: Coronal contrast enhanced cuts were obtained through the sella.

Findings: The pituitary gland is normal in size and attenuation. The infundibulum is midline in position. There is some sloping of the sellar floor on the right posteriorly. However, no definite pituitary adenoma is identified. No parasellar or suprasellar abnormality is identified.

CT Scan of the Adrenal Glands – dictated on August 11, 2000

Findings: Both adrenal glands are normal in size and enhance symmetrically. There is no mass. The visualized portions of the liver, spleen, pancreas and kidneys appear normal.

Impressions: Negative CT Scan of the adrenal glands.

I marvel at the patience so many sick people exhibit during this waiting game we are all forced to play. How do these people keep it up? I am exhausted! After only 2 hours of sleep I woke up this morning feeling absolutely miserable.

It seems I have to wait forever to get the results of the CT Scan of my adrenal glands and CT Scan of my pituitary gland.  However, I must be patient.  I wouldn’t want an esteemed professional to be over worked on my account.

My biggest fear is that nothing will be found and I will be back at square one.  What do I do then?  I have lost complete faith in the medical system.  Squirt (my family doctor) admits that he doesn’t have a clue.  His words not mine!  You can just imagine the surge of non confidence that flowed through my body upon hearing the words “I don’t have a clue!”  I hope the Old Man has more of a clue.  Will the Old Man too give up if nothing shows up on the CT Scan?

How do people live with undiagnosed symptoms?  Many people have suffered much longer than I have.  I know that.  However I am so sick and tired of being in pain and feeling miserable day after day.  How do the others keep their spirits up?

Maybe 52-year-old Nana’s with undiagnosed complaints should just be slated for the glue factory!

One thing that is very clear in my mind is that in my country the medical system poopoos the adverse symptoms of 52 year old women!  Oh dear I forgot for a minute the words of the Blonde Bimbo and I quote, “most nasty symptoms that 52 year old women experience must be caused by menopause.”

It has been a lovely summer so far. I have been swimming every day with my 6-year-old grandson. I am Wanda the whale and he is the shark. Wanda’s goal is to try and catch the shark! Well, that kid can swim! I can hardly keep up with him.

You can imagine my horror when I burst out of my swimsuit yesterday! Thank goodness for a six-foot fence around my yard! Puts one off eating for a while! Now I will have to make a trip to the city and go through the nightmare of trying on swimsuits. I shudder at the thought of standing in front of a dressing room mirror in my birthday suit. That is the stuff that nightmares are made of. Of course they would never have a size to fit me right here in town. I probably will need a super large.

I had a phone call from Old Man on June 30th. He called to tell me he had received a copy of my 24-hour Urine lab report from Blonde Bimbo. He informed me that he was scheduling a CT Scan of my adrenal glands and pituitary gland as soon as possible. I asked him what the 24-hour urine test had revealed. He told me it was neither here nor there but that he was concerned enough to order the scans.

On July 14, 2000 I received a letter from Blonde Bimbo telling me that all my tests including the 24-hour urine were normal. The letter also stated that there was nothing wrong with me and that I needed no further treatment. Chalk one up for the Blonde Bimbo! Are there any trustworthy endocrinologists out there?

This morning I got a call from the Old Man’s clinic telling me that my CT Scans are booked for August 10th, 2000.