Posted by Pattie on 11/01/2010 11:20:00 AM

I've been in denial for a while now and for my own sanity I need to say something out loud.

Since March of 1997, I've been sick to some degree or another. I don't think there has been a day that has gone by where I have not experienced pain to some degree though some days are better than others and some years have been better than others.

I'm tough. I don't like being sick. I don't like admitting I'm sick. I don't like thinking about being sick. A part of me thinks, even after 13 years, that I can beat this.

Being fat complicates this. Getting old complicates this.

This culture is full of misinformation and blame-the-victim mentality and even though I've spent a great deal of time learning how to deconstruct that misinformation, I, like the rest of us, have some of it living in my brain anyway.

Now I've found out that I may have been misdiagnosed and that I may still be under-treated.

In 1997, I got sick at a party that several other people got sick at as well. We don't know if we all caught a virus or if the food was bad. The other guests had gastric symptoms for about 24 hours. Three days later I was cramping severely and dehydrated from several days of vomiting and other gastric symptoms and had to go to the emergency room and put on an IV. I didn't get well. I've not been well since.

The rest of the year was a series of doctors visits, lab tests and various treatments that eventually got me back to functionality. I managed to make-up the incomplete work and go back to school and actually finished my MA and PhD faster than many of my cohort. But I remained sick.

My husband is probably the only person in the world who knows how sick I've been. He has been my fearless care-taker and protector. For this he is and will remain my hero.

But I am acutely aware that there is so much more that I could have done with that 13 years than I've managed to accomplish. There is so much more I want to do.

I thought I had lupus. I met the criteria. And the preliminary tests sent me to a rheumatologist. Like mechanics and engineers, doctors have a tendency to diagnose within their specialties. I now know that I probably should have went to and endocrinologist. I have come to believe that I've been suffering from hypothyroidism during these 13 years. The lab tests didn't start being positive until 3 years ago, but I've had symptoms for years. Symptoms that have been misinterpreted.

I've slowly been dosed upwards on thyroid medication since being put on it three years ago. I'm back to showing all the symptoms. I feel like I'm walking through jello mentally. I'm cold even when it's over 100 outside. My hair is falling out (this is my most vain loss -- I once had very thick hair and now I'm balding). I'm exhausted when I get up from 9 or 10 hours sleep, when I can sleep. I have what I call energy dumps, where it feels like all my energy leaves my body instantly. I sometimes have pulled over to the side of the road to "nap" because of these dumps. My skin is dry in weird places (like my eyebrows or my finger knuckles). I'm irritable and feel raw with emotions. I'm fighting off weird infections almost weekly. In October alone, I had cold sores in my mouth, a UTI, a boil, and a head cold. My teeth and gums are getting worse. In short, I feel like all systems in my body are falling apart.

Please don't respond to this by giving me dieting advice or the latest alternative treatment. I've researched and I am capable of figuring the terrain out for myself. I just need to say out loud the I'm suffering. There are things I know I could pursue but there is no money to do them. I'm stuck with low-cost health care and therefore specialists and alternative medicines are beyond my reach at the moment.

This is a vicious circle -- I am finding it hard to work and yet I need to work to make enough money to pay for the treatments I need to be able to work.

I'm tired of being sick and sick of being tired.

I will probably write more about this because in the past writing has been my lifeline. Maybe I shouldn't be so public with this but somehow it is more real to put it out here on the net than to keep in my personal journals. So here it is. This is where I am today.

I do want to keep the silver lining in mind, however. If indeed this is thyroid deficiency (or related endocrine issues like hypothalamus and/or adrenals), it is treatable. Lupus is not treatable in the sense of actually changing the disease state. It is going to take some time and testing and money, but there are plenty of people running around quite happily and quite healthfully with hypothyroidism. I resent that this went on for so long without realization of the problem, especially since I gained 100 pounds in 1997 and everyone, including me, but also including doctors who should have suspected something, just assumed it was because I went from riding a bike 20 miles a week to being bedridden. Subclinical hypothyroidism should have been obvious in retrospect. But now that it is obvious, there are treatments.

I go to the clinic on November 10 to get latest blood tests. Hopefully we can figure this out and I can get my life back. Now that would be wonderful.


CTJen said...

Oh honey. I hope you can get some help and feel better soon. (((HUGS))

Michelle said...

So here it is. This is where I am today.

Pain and suffering sucks but, seriously, you rule.

Notblueatall said...

My thoughts will be with you. No one should suffer. Wishing you well++! <3

Scattered Marbles said...

i am so sorry you are feeling so awful, my thoughts (and prayers if they are welcome) are with you I really hope you find the root of the problem.

La di Da said...

Oh, wow. :( I hope you are feeling better soon enough. Hypothyroidism sucks. (Had something very similar happen to me - I was lucky enough to find a doctor who treats the old fashioned way, by symptoms not lab tests.) Best wishes to you.

Pattie said...

Thanks all. It does help to know that people are pulling for me. I will keep you posted on how this all plays out.

Anonymous said...

My hypothyroidism went undiagnosed and untreated for 10 years. My life definitely improved once I got treated....but it's still a struggle to get treated to the right range. I find I have a very narrow window where I feel "right" but the doctors have a much wider one they consider "normal." Alas, it's not normal for me.

If you have any provider choices whatsoever, it's worth finding the doctor who is willing to listen and help you refine your optimal treatment goal range.

Another option to consider is food allergies. A really bad GI issue from food poisoning, rotovirus, etc. can make the gut more permeable to proteins that normally don't "fit" through, and you can then develop a food allergy to something that never really bothered you before. This happened to my son. You can check for this on your own by experimenting with elimination diets if you think you might want to look into it. Given your history, it could be a possibility.

I'm sorry you are suffering so much. I hope you can find some answers soon and start to feel better. Hang in there.

Kate said...

I had a long reply that I deleted because it was too much about how I was diagnosed, so I'm trying for something better today.

I was undiagnosed for awhile, though not as long as you and from your description, my symptoms were not as severe as yours. My heart really goes out to you. I started with an endocrinologist who said I was "normal" and then I had a failed appointment (too much waiting I never saw the doctor) and finally, I went to my GP prepared to tell him that I knew what was wrong with me and I was prepared to doctor shop until I found someone to treat me, but I wanted to start with him. Turns out, he had years of thyroid tests and my numbers had gone up quite a bit and he prescribed meds with no fuss at all. So if you can get copies of previous tests, you can see how your numbers have been trending up over the years, that might help convince a doctor to treat you. I understand that you don't currently have the means to see a doctor, but I hope you do soon. I'll be thinking about you. In the meantime, take care of yourself the best you can.

Paul Ernsberger said...

Hypothyroidism is usually diagnosed by high TSH levels, which indicates that the pituitary and hypothalamus are trying to compensate for a defective thyroid gland. Some doctors go by the official cut offs, which are set very high. Most endocrinologists start replacements at lower TSH levels in the presence of symptoms, and you have about every one in the book! Some endocrinologists will give synthroid as a trial, and if the symptoms abate they will continue or step up the dosage.

living400lbs said...

*gentle hugs offered*

I wish you health improvements and the strength to hold on. Fortunately it sounds like you're on the right track.

Weightless One said... are not alone. I suffer from Hashimoto's disease (sometimes called Hashimoto's Thyroiditis) and have gone through the same symptoms you describe on and off for years. My thyroid replacement hormones have to be raised regularly as every time I have a Hashi's episode, more of my thyroid is destroyed by my own immune system. I highly recommend joining the Thyroid support group on yahoo. They are knowledgeable and really know their stuff including how to advocate for your own health despite what the test numbers might say.

I know how hard it is and how much you have to fight to get the care you need when you are already so exhausted. I know how often people classify those of us who suffer with thyroid problems as lazy because they just do not understand how difficult it is to live with these disorders that affect entire body systems. I hope you get the care you need--you are worth it as we all are!

Lisa said...

My thoughts are with you! I truly hope you get some answers from your upcoming blood tests; not knowing for sure what ails you and therefore not being able to get appropriate treatment must be unbelievably frustrating, especially over such an extended period of time.

Also, your husband sounds like a wonderful person, I'm glad you've had someone like that on your side throughout your ordeal.

april said...

I really hope you get some relief with your current treatment, but I am SO EFFING FRUSTRATED on your behalf that you may have been suffering under a wrong diagnosis for so long. Be well.