Re: Post-Surgery Care - Response to Dr. Grim 2

[Guest guest]

The BiPap does not prevent the episodes of symptoms. However, I am sure that

being able to obtain proper rest does help.

As I do not have each and every BP reading from the past 20 years, I should have

stated that my BPs were well within normal limits rather than 120/80 and yes

these readings have all been taken with a large cuff by various medical

professionals, myself and husband with past paramedic experience and training.

We can't all be wrong.

As far as my weight issues, it was impossible to convince any physician what was

happening even when presented with food and exercise logs. Yes I was able to

lose weight during periods when symptoms were not present -slowly. For the most

part I have been treated as if I lounge in bed all day consuming bon-bons and

loaves of white bread when actually I was a moderately active working wife and

mother, who has maintained a low sodium, low sugar, low fat diet for all my

adult life. The first time anyone admitted I had not been exaggerating these

facts was while enrolled in cardiac rehab, began having symptoms and gained 20+

lbs in 3 weeks. Rehab was able to document my strength, endurance, BP & heart

rate control before the symptoms began and my weakness, fatigue and uncontrolled

BP and heart rate after the symptoms began. I'm certain no one will be convinced

over the internet when it too 15 years to get a response other than a smirk from

any medical professional - the endos were the worst.

As far as the 24hr urines go, they were all conducted to screen for excess

cortisol, pheochromocytoma or kidney stone evaluation. If Na or K were measured

I was not made aware of it. To my knowledge, all Na, K and aldosterone readings

were from blood draws.

Once this is resolved I will get my medical records from my current internist -

records for at least 5 years - and enter any lab results I find. I just do not

have the energy at this point. Hopefully this will help others.

>

> > As stated earlier, I gave you the short version of my medical history.

> > To respond to your comments, I must now expand my tale and go back to the

early 1980's.

> > While in college, I began to experience episodes of low blood sugar to the

point of losing consciousness on several occasions. This was chalked up to being

an active young adult with a tendency to forget to eat. A change in diet and

more regular meal schedules resolved most of these issues. No testing was done

at this time other than regular blood panel.

> > At this time, I became careful with my diet adopting essentially a DASH

diet. Low sodium, low fat, lots of leafy greens, whole grains, no sodas, and

rarely fried foods despite being a Southerner. Almost all home cooked - Southern

cooks are good cooks because takeout isn't an option. I have maintained this way

of eating with few exceptions since. Having a family history of diabetes, heart

problems and neurological problems, this seemed to be the wisest path for me.

> > In 1990's I began to experience problems with depression and sought

treatment. Episodes of depression seemed to follow a pattern connected to my

menstrual cycle with each change in mood beginning premenstrual and continuing.

Medication would work for a while and then would stop. Each time a med change

was made I would gain at least ten pounds that could never be lost. As a result,

by 1995 I carried 70 extra pounds. However, my blood pressure was always a

perfect 120/80. In an effort, to lose the excess weight, I tweaked my diet to

make sure my calorie intake was between 1200-1500 calories daily and added

regular exercise. This was unsuccessful.

> > In 1998 due to construction at my work place, I experienced a six month time

period in which I saw my GP every 2 weeks due to upper respiratory irritation

and infections. Each time my BP was the perfect 120/80. After not seeing him for

3 months, I went in to see him for another sinus problem, accompanied by extreme

fatigue and headache. This time my BP was averaged after several readings to

180/110. My GP had me come in daily for 2 weeks in order to monitor my blood

pressure and adjust medication to bring it down. Having little success and

noting the sudden onset of the hypertension, my GP referred me to an internist.

K levels at this time were within the normal range.

> > Having done some research into the causes of sudden onset hypertension, I

noted that some of my symptoms/characteristics fell into symptoms of

overproduction of cortisol or aldosterone - sudden weight gain that cannot be

lost despite diet and exercise, trunkal obesity and moon face( I look like a

barrel on legs, blood sugar fluctuations, fatigue, whiskers growing on my chin,

High cholesterol and most importantly the sudden onset of the hypertension. Also

factored in was the observation by my psychiatrist that changes in my depression

- for better or worse-always mirrored a the normal fluctuation of hormones

during my menstrual cycle.

> > While the internist did not like my request to investigate cortisol

/aldosterone beyond initial screening, he did send me for an MRI of my head

(based on headaches) and to a sleep lab (the local hospital and just installed a

sleep lab). By that time, my blood pressure was stable and I was sent away with

a bipap machine (wall rattling snorer since childhood), a prescription for

coregg and a 6 month follow-up appointment.

> > Until 2006, I would experience periods of unstable blood pressure, fatigue

and weakness. By the time I was able to get an appointment with the Dr. the

symptoms had resolved themselves and and he would look at me like I was nuts. K

was occasionally on the low side of normal and he suggested supplements.

> > In 2006, I began to experience left flank pain along with the episodes of

unstable blood pressure, fatigue and weakness. At that time I was being

extremely strict with the DASH diet, walking 3 miles a day and doing yoga

several times a week. I went to a new internist who found the adrenal adenoma

and referred me to the 1st endo for evaluation.

> >

> > In 2009 I lost my job and insurance and by the time I was able to get to my

internist again in 2010 my heart was so damaged that I was near death. (I had

been having chest pain for 3 months. However since I also have a condition

called nutcracker esophagus, the symptoms of which mimic a heart attack, I

disregarded the urgency.)

> > Following the CABG, I was recovering well and undergoing cardiac rehab.

After about 2 weeks I was doing well gaining strength, stable blood pressure,

good hearth rate, and dramatically improving every session. The next session

every thing went south, and I collapsed. Blood pressure became erratic, heart

rate elevated with any slight effort and blood sugars began to fluctuate - it

was as if a switch flipped and I had the data to prove it. I also completed

rehab 20 lbs heavier - which was later shown to be upper body fluid.

> > In July 2010, Spiro was added to the med mix but had four/five episodes of

weakness, fatigue, fluctuating blood pressure and rapid heart rate - these

lasted anywhere from 3 to 6 weeks. My last episode began Mid December 2011 and

continues to this day.

> >

> > I have done so many 24 hr urines and blood tests since 2006 but never was I

taken off meds and never were the blood draws performed on the same date as the

24hr urines. K levels fluctuated sometimes within normal range and other times

being low. Currently K is on the low side of normal. Through a great deal of

trial an error, we've found that the Bystolic and Dioxin keep the blood pressure

and heart rate relatively stable without crashing it too low. The Byetta keeps

my blood sugar level throughout the day - rather than crashing very low 1-2 hrs

after eating.

> >

> > I have been checked for renal artery stenosis and have been found to be

clear. Structurally my heart is now sound and hopefully with the upcoming

adrenalectomy these symptoms will stop or at least get to the point where they

are controlled by meds and I can have a life.

> >

> > I hope this answered most of your questions - essentially I've spent my life

eating a healthy diet, exercising and doing all the right things - ended up

overweight and nearly dead at 47 - still trying to find answers.

> >

> > I'll get lab results to you as soon as I can - maybe they will help someone

else.

> >

> >

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