"IT" Part Three -- There Is Hope Smiling Brightly Before Me....sort of....

I suppose is it time for Part Three of "IT". I have a feeling this might he a terribly long post, but here goes......

HOPE.

I feel, FINALLY, there is some measure of HOPE concerning "IT". I share my journey with "IT" in hopes that it will help someone else. I wish that I would have had this information earlier---like maybe 10 or 15 years earlier....


At the time of my last posting about "IT," I had just been to see an endrocrinologist, who was thoroughly dismissive and showed a negative amount of interest in my situation. Her solution was to have a blood test and if nothing showed up (which she was pretty sure would be the case), come back in six months for another test....


I knew then that her "help" would be non-existent, so I waited for the phone call from her nurse, who told me that everything was, of course, NORMAL. I wanted to say, "Normal for WHOM exactly??? Who NORMALLY only has 3 hours of energy a day if they are lucky???"


I asked them to send me a copy of the blood test, but after waiting for over a week for my copy to come in the mail, I made the hour-long round trip to pick it up myself, all the while screaming to myself that I didn't want to spend 1/3 of my daily alotted energy in driving to pick up the blood test results.


Next day I called an internist that I had seen periodically in the last seven years that we have lived here to see if she could run some more tests, specifically to test my Epstein Barr virus levels (chronic mono) and other hormone tests since the endocrinologist didn't know how and wasn't interested in running said tests. This internist is very nice but in my previous conversations with her over the last 7 years, she seemed uninterested in my lack of energy as well.


My begging paid off and she ordered the test. After about a week (knowing I had two weeks until my appointment with her) I really wanted to see the test results myself. I called the office and asked for a copy after which a nurse told me it is IMPOSSIBLE to give me MY test results. I stayed as polite as possible (remembering it is so much easier to get bees with honey than with salt...) and asked her, being that it was MY blood, why I couldn't see the results. (I say it's MY blood, MY insurance, and MY money, therefore it is MY test!)


She informed me that it would be terrible medical practice to give the patient the results before the doctor sees them---in case something is wrong, the doctor would want to know. (I held my tongue, but really wanted to ask if Doctors were so interested, why they weren't more of a help!!!) She said she would have the Doctor look at it and then I could have a copy.


The next day the doctor looked at them, and based upon her reading was told, "It looks like you have had Mono before and your Estrogen level looks a little low." That's it. Nothing too bad....

So I drive to that office and pick up my test results.


I immediately sat down at the computer and start at the top of the three pages of blood test results and look up each thing that is tested, WHY it is tested, and what it means if you are on the higher or lower level of what is considered normal.


Before long, I begin to see a pattern. Many of the tests aren't totally out of "normal" range, but A LOT of the numbers are right at the border of the high or low range. (Meaning, for example, if 10.5 is considered the top of the normal numbers, I was usually at 10.3 or 10.4.) Hmmmm, I know I haven't been to medical school, but to me it's starting to add up....


I consistently saw results that were indicating inflamation, lowered immunity, related to fatigue etc.


As I continued on, I got to the BIG POPPA numbers.....I saw the numbers for my Epstein Barr levels. There are four tests they run for this. On two of the four tests, any number above 120 was considered positive. HMMM.....on one of those tests my number was a mere 485....on another one my number was 2300.......HELLOOOOOOO it doesn't take a brain scientist to look at those numbers and see that they are "slightly" elevated!!


Then I look at my other horomone levels that I begged to have tested that the endrocrinologist said were UNNECESSARY to test....Hmmm....let's see......


My Estrogen level: 7

The nurse told me it was "a little low...."

Based upon my research (about 10 books, Dr. Christiane Northrup and another Doctor I saw on an Oprah show,) I would feel a lot better if my Estrogen level was about 200. Okay--7---200---7---200---7---200.....no matter how many ways I look at the numbers 7 and 200, they don't look very close to me. AT. ALL.

I then look at my testosterone levels and progesterone levels. One my my levels is 15 and it should be about 35.....on the other test, level is 0.6 (that's zero point six.) It should be at about 15.......EARTH TO DOCTOR. EARTH TO DOCTOR....These numbers don't look remotely close to me!

I also looked at my thyroid levels. This test is a little harder for me to interpret, but it still looks off to my untrained eye.

Next steps: get on the phone and cancel my appointment with that Doctor. Stare into space. Look bewidered. Wonder if I can ever find a Dr. House.....

Matthew came home that night to a slightly upset wife. He suggests I go to see a doctor that he has seen and likes---Dr. Pethkar. Dr. Pethkar is the husband of my children's pediatrician. I never considered seeing him because I figure (erroneously) that a female doctor would be my best bet for someone who would be empathetic to my predicament.

Matthew's picks up the phone and asks me if it's okay for him to make an appointment for me. Two days later, I visit Dr. Pethkar. An hour after arriving at the Dr. Pethkar's office, I am ready to ask the Catholic church to grant Dr. Pethkar sainthood.

I hand Dr. Pethkar my test results and start explaining all I have explained to the zillion doctors previously. He looks at me and actually seems interested. (I try not to talk too fast....I'm just afraid at any minute he will lose interest and jump out of his chair and run to the door....) He starts asking me WHY no one has done anything for me before. His eyes get bigger as he looks at the blood test results and continues to listen to me. He doesn't look at all like he is ready to jet out the door to his next patient.....AMAZING, I say!

He then wonders why no one has ever tried anti-virals to help with the Epstein Barr virus. He told me that if I could get my levels even down into the 1,000s, I would feel so much better. He then electronically zips off a prescription to my local Walgreens for Valtrex. (After reading the enclosed insert with the Valtrex, I realize it is most prescribed for herpes or HIV. I quickly wonder what the pharmacist thinks my ailment is....)

Dr. Pethkar also explained why I was so achy and felt like I had the flu when I was REALLY tired. He said my body was full of inflamation and it had turned into fibromyalgia. At least I now had a name for it....

Then we start discussing the thyroid. Within three minutes of talking to him, he says it is a no-brainer and I have hypothyroidism (which was my personal diagnosis after my research but dashed to pieces by the endocrinologist.)

The thyroid is the little mechanism in our bodies that controls our metabolism and has a great effect on our energy levels. He zipped off another prescription to Walgreens for the thyroid. He informed me that if people normally run on about "one dollar of energy" each day, I was lucky if I had "five cents of energy" a day.

He then said we needed to work on these two issues first and then would work on the hormone levels. If we worked on all of them at once, it would be too difficult to determine what works and what doesn't.

I almost fell on the floor from complete glee, but I controlled myself. I FOUND MY DR. HOUSE!!!!

I started my meds on a Saturday morning and by Monday morning I had more energy than I could remember feeling. It was F.A.B.U.L.O.U.S. I could actually walk up and down my stairs several times in one morning without having to take a nap. I was able to run several errands and STILL have the energy to wash my kitchen floor and do several loads of laundry from start to finish. And that was just my morning......I was so HAPPY.

I noticed during the week that not only did I have energy, but I wasn't achy anymore from the fibromyalgia.

The following Saturday I doubled my dose of the thyroid med, wondering if the next week would lead to even more energy. Unforturnately, that was not to be the case. Towards the end of the second week, my energy levels really decreased and the fibromyalgia starting rearing it's ugly little head. By Thursday afternoon, it was back to bed.

Not to digress in my story, but I quite like to be scientific when I am trying to do things. I have a food scale that not only tells me how much things weigh and the calorie count, but also the grams of sodium, cholesterol, fat, protein, carbs and fiber.

In addition to my food scale, I have a BodyBugg---just like my Biggest Loser friends. This little device measure your total caloric output. You can download all the information on the computer and see exactly how many calories you are burning every minute of the day.

Additionally, I have a heart rate monitor that I wear when I exercise so I know exactly where my heart rate is and then I can adjust the rate depending on what "zone" I want my heart rate. At the end of the exercise session, I can tell how many calories I have burned during exercise, exactly how long I have exercised and my average heart rate and my top heart rate during exercise.

I keep track of all this data so that I can take the guess work out of how much I am eating, what macro/micro nutrients I'm consuming, how many calories I am actually burning etc.

Well, before the thyroid meds, I had a very hard time getting my calorie burn over 1,900 to 2,000 day. A few days after starting the meds., I was buring up to 3,000 calories/day.

I assumed that with the calorie burn being higher and keeping my calorie intake to 1,400 - 1,500 calories/day, based on the calorie in/calorie out definition, I should be buring off the pounds, right?

NOT one pound was lost in 2 weeks, inspite of the great deficit in calories. That seems unbelieveable (and depressing) to me. I have read and been told by "experts" that it is just not possible to NOT lose weight if you have a calorie deficit. WRONG.

Listen, girls---under certain conditions---like a thyroid disorder---no matter how many calories you burn, you will NOT lose weight.

During my follow-up appointment with Dr. Pethkar last Friday, I asked Dr. Pethkar about this and he said any weight probably will not come off for at least another two months of being on the thyroid medication. In one way I felt relief knowing that it wasn't some medical mystery as to why, after 1 1/2 years of doing 8 hours/week of exercise I didn't lose 1 pound. On the other hand, I felt frustrated that with all the effort I have put into things, it will still be another two months before I see any results......

So girls, it's NOT always calories in/calories out!!

Dr. Pethkar told me I need to be more patient in expecting results. It may take a while before I feel as good as I did the first week. (It's called "dumping syndrome." My body was without the proper amount of thyroid for so long that when I first took the meds, it was happy, happy, happy. But then my thyroid thought it had more than enough of the medication and started "dumping" it out. It will take several months for it to even out and "accept" and convert the medication like it needs to.)

So, now I wait, happy with answers and so grateful to Dr. Pethkar, all the while trying not to be too impatient....or discouraged knowing that my thyroid may be permanently damaged. (Dr. Pethkar told me this really should have been addressed 5 to 6 years ago. He said I will see improvement, but there may be permanent damage which can not be reversed....)

The moral of the story----don't take no for an answer if things don't seem right. Do research, try different doctors, get copies of your lab results and research the results yourself.

And, ladies, get yourself tested now for thyroid and hormones--it is NOT too earlly if you are in your 20s or 30s. That way you will know later on what YOUR "normal" is. In fact, I'm going to have Elizabeth get hers tested this summer so that she has a baseline for what her "normal" is at 19. That way, when she gets to be my age, and IF (when) she starts having symptoms, she will have numbers to compare with what's normal for HER and won't have to go by someone else's "normal."