Happy Holidays

Seasons greetings and good wishes to whomever happens upon this blog.

Winter isn't hitting my quite as hard as usual. I am actually still having some pains, but, I'm not as slow/tired/confused. Consequently, I am feeling the holiday spirit a bit more.

Joking with family members about how they can't get away with things now that my memory isn't as iffy, is quite entertaining.

And hey, I haven't managed to lock myself out of my apartment in months!

Above all, my favorite thing is how my hands and feet have stopped chronically getting cold.

::walks gleefully about her apartment without socks and gloves on::

To resume:

As Winter 07-8 waned (see earlier post), by the time I got to the first doctor's appointment, I wasn't in quite the constant state of pain I had been. Tired as hell? Yes. Not able to do a lot. But there is no swelling or any such outward symptom.

I was a bit frightened still. There was no way to know whether things would continue to improve, or if I would have those same levels of pain and fatigue all the time. I thought to myself- this is too much, I've already been running with fatigue all these years, how am I supposed to manage this addition? The only minor consolation at this time was the certainty that I could not have 'stressed' or 'depressed' or myself into these symptoms, nor could merely being overweight cause this.

I was concerned that I would have to drop school altogether. I found that possibility quite frustrating. No matter how much longer it takes, I plan to graduate with this computer science degree, after all these years of toil and trouble that have gone into it.

So I had my first appointment. The doctor, she was friendly. She ran some tests- mainly the concern was lupus or rheumatoid arthritis. I brought with me a long list of symptoms from the years and my journal entries.

And then I didn't hear from her. I received a postcard indicating that everything came back normal.

I found that upsetting. Both the lack of results, and the postcard notification. Neither was really the doctor's fault though.

So at that point, I was still in pain and did not know why.

I went back (yes, it took another month of waiting for my second appointment), and the doctor seemed a little surprised that I considered myself "decrepit". I fear I may not have properly conveyed my joint pain issues; Or maybe, that when none of the tests came back positive, she assumed that it "wasn't that bad".

She ran some more tests. I got an x-ray of my hands.

This time the doctor did call. But, no results. She did tell me that I should go to a rheumatologist.

A little frustrated, lacking in answers, I almost did not want to try another doctor. I thought about things. I googled.

This didn't seem like a rheumatologist problem to me. I know, that seems like sideways thinking, considering that my main problem was joint pain. But, considering the symptoms over the years... a thyroid problem was too much of a fit.

I looked up an endocrinologist, and quite fortuitously, my insurance would cover most of the visit to the specialist, even without a referral. Off I went.

The first appointment, the new doctor seemed a little skeptical of me and my printed symptom list. I came out of the appointment wondering if any progress would be made. But she did feel the enlarged thyroid- neither of the other doctors I'd been to had. That is probably the only reason she agreed to run more tests on my thyroid. She did scoff at my mention of getting a free t3 test though.

On the second appointment: Vindication. Most definitely Hashimotos, and yes, probably PCOS.

I sincerely hope that is the extent of my problems, but with my luck, one never knows.

What bothers me the most is that... if I had not decided to go to an endocrinologist, how long would I have gone on undiagnosed? I guarantee you a long time. And if I didn't have access to a computer and internet… if my insurance hadn't allowed me the visit...

Now, onto the “other” doctor.

When I was 19, I went to a doctor complaining of fatigue and weakness.

She ran some tests- I give her some credit, she did at least check my TSH levels.

Test results showed nada. So, nothing happened.

She sure did like to mention my weight a lot though, in following appointments.

Now, I understand why a doctor would be concerned about my puffter self and the resulting health risks. But, every G.D. time I went to see her... I just don't see why she couldn't say her piece and then move on to address other health issues.

I did see another doctor at the same health clinic once, and complained about how I would sometimes get the "jitters". She asked me if I cried a lot. I looked at her like she was insane. I was sent to some sort of interview with a psychologist type person in the clinic after that, but for some reason, I did not seem to reveal any deep dark depression. (I was described as a nice goal oriented young woman, by the way :D ).

No wonder I developed an aversion to going to see doctors. That is unfortunate- there are probably a couple of incidents that really should have been reviewed by a doctor.

I can sorta understand these doctors point of view. However, contemplating the effect my symptoms have had on my life for oh, the last 10 years, leaves me in an unforgiving mood.

Above, I mentioned seeing one doctor twice, before seeing the endocrinologist. There was a good 3 month gap in between those two doctors.

In the intervening time, I went to see this doctor that was (technically, I suppose) my 'regular' doctor, the one I went to see when I was 19 about the fatigue and weakness. I went to see her solely for a refill of my Nexium prescription (I have acid reflux- faulty sphincter).

I thought to myself, you should practice full disclosure, as she is a health care worker who is attempting to care for your health. Maybe you were too young before and misunderstood her attitude.

I started in with "I have started to experience joint pains since last winter-"

She goes "You know, losing weight would help with that."

I couldn't believe it. No inquiry as to when the joint pain started, where the join pains were located, no curiosity about frequency or severity.

Nice.

At the time, I was hungry. That occasionally leads to jittering. I was also nervous. Which also can lead to jittering. And then, I was suddenly furious. Well, I... started jittering like mad. I couldn't conceal it.

Suffice to say, she probably thinks I'm insane.

That is okay. I don't really intend to go back to see her. Ever. Except maybe once, with the medical records from the endocrinologist in hand.

The Undiagnosed

I caught a couple of Mystery Diagnosis episodes on Monday and Tuesday.

What struck me was the fact that 3 of the patients were given the suggestion by their doctors that they had psychosomatic problems.

In one case, a fit runner started to feel fatigued, and then started to get arthritic symptoms. As time wore on, he could no longer run, because depressed, and overweight. Despite the fact that the patient came to see his doctor at least a year before he became overweight and depressed, the doctor still suggested that it was psychosomatic. As I heard this, I asked the TV screen, “wtf?!” but alas, the TV did not answer me. I should mention that this doctor did end up diagnosing the rare problem… but in many cases, the patients end up having to go to multiple other doctors.

In another story, a young woman was forced to go to school every day despite near crippling migraines, because the doctor told her parents that she was making it up. Why did he assume this? Pretty much just because he couldn’t find the problem. If they can’t find the problem, you know, there obviously can’t be one.

The girl then went blind in school. Only at that point was she taken to a doctor that was able to diagnose the problem.

It occurs to me, that all these cases on Mystery Diagnosis- those are people who at the end, found their diagnosis. How many people out there are still undiagnosed? Will they ever be?

I just kinda gave up for a number of years, realizing that I wasn’t being taken seriously. I too was indoctrinated with the idea that doctors know all. Thankfully, in my 20's, I've learned otherwise.

Most doctors are more like... your regular cop. The detectives, those are harder to find. And even some detectives aren't that great at their job.

As far as the thyroid goes, I find it disappointing and irresponsible that so many doctors only test the TSH- I am most certainly not the only case where that one test did *not* find the problem. That was dangerous- I should have been getting flu shots. You bet I would have been if I'd known I had a problem with my immune system!!

Check out this MSN article (2006) with Dr. Judith Reichman, that still purports that unless TSH levels are elevated, no further tests should be run:

http://www.msnbc.msn.com/id/12244306/

I’m becoming increasingly fond of Mary Shomon who writes for About.com -these are her articles in response to an earlier article by Dr. Reichman (I could not find this earlier article).

http://thyroid.about.com/cs/publicawareness/a/todayshow.htm

http://thyroid.about.com/library/weekly/aatodayshow2.htm

How would a TSH test tell you if T4 isn't being converted into T3 properly, for example?

The thyroid- there are complex issues there. The TSH test doesn't cut it. Technically, since the pituitary produced the TSH, you aren't even looking at the directly at the thyroid or it's products, you presume that the pituitary gland and negative feedback system are working properly.

I realize the symptoms of hypothyroidism can be hard to put together. The thing is, two of my doctors did put it together enough to test my TSH. Unfortunately, that was not the only test they needed to have run.

Thyroglobulin Antibodies and Thyroid peroxidase Antibodies

I've been investigating the difference, finding it odd that both were elevated (in my test results).

I found this as a response to someone's question on yahoo answers:

"Hashimoto’s is confirmed by two antibodies labs: anti-TPO and TgAb. The first antibody, anti-TPO, attacks an enzyme normally found in your thyroid gland, called the Thyroid Peroxidase, which is important in the production of thyroid hormones. The second antibody, TgAb, attacks the key protein in the thyroid gland, the thyroglobulin, which is essential in the production of the T4 and T3 thyroid hormones. Note: it is unfortunately common for a doctor to only do ONE test, and you need BOTH tests, since you can be normal in one and high in another!"

Also, a useful link from about.com regarding these.

Furthermore, a piece of useful information someone wrote on a messageboard: "While TgAb and TPO are the most common antibodies to show up with Hashi's, they are not the only ones that can attack the thyroid. Antibodies can develop for ANY tissue or cell in the body, which means that there are literally thousands of possibilities, and may antibodies that have yet to be discovered."

The story of another girl

A girl with hypopituitarism

http://www.clarionledger.com/article/
20081207/FEAT05/812070332/1023

Really, doctors? really? Nice. This poor girl =(



I see that a commenter named fatgirl wrote:

"It seems that you have to almost die to get a doctor to actually pay attention to you"

And sometimes, well, that seems quite accurate. I honestly don't know how many hypochondriacs and/or "stressed" and/or depressed and/or crazy people doctors have to deal with. But it seems like, if the symptom is vague, and the doctors don't find an answer right away, you get written off and/or ignored.


This girl... I've probably only had 1/3 as much difficulty as her. But my symptoms have most definitely affected my ability to be productive.


This episode of Mystery Diagnosis is airing Monday December 15th in my area, on the Discovery Health Channel.

Winter 07-08

In recently years, I have always creaked and slowed in the winter. I live in one of the Northern states.

I seem to remember a time in childhood when I liked winter- cavorted about in the snow and such- but that was surely quite some time ago.

I suppose the start of this story/snippit was actually in fall. This particular October, I woke up one day with such a pain in both knees, that I assumed I must have somehow sleepwalked, during which I must had taken a 5 story leap, farking up my knees.

It was painful. We use our knees a lot. Even a little bit of motion was killer. The staircase up to my apartment became quite an ordeal.

I was almost on the verge of dragging myself to a doctor- ( (which I avoided as much as possible- I always wait, to see if the problem at hand will fix itself) (I had this attitude because the most of the problems that hadn't resolved themselves or were hard to explain, I hadn't gotten any help with anyways) ) -when someone mentioned the glorious Glucosamine and Chondroitin supplement to me. I started taking it. It helped. I then started taking a lot of it. Wallah, I was nearly back to me usual slow working order.

I couple of months pass...

...then in February, I got the flu.

I never get flu shots. I don't like needles, and assumed that any working 20-something year old ought to be able to recover from the flu after about a week.

I definitely recovered from the actual flu. But, joint pain persisted...

... all finger joints, wrists, knees, elbows, ankles, toe joints, hips, shoulders...

Also an overall pain; In past years, I would occasionally get a hard-to-describe aching/burning in my limbs, mainly my arms. Ratchet that particular symptom up and put it on full time duty.

There were times, I'd be lying on my futon, and pain would just radiate to the tips of my fingertips and toes.

If not for a family member coming around all the time to help me, I would have dropped right out of my courses that semester.

I still vividly remember reaching out to a doorknob, turning it, and feeling so many flares of pain in numerous joints that I didn't even open the door. I braced myself and went for it again, though.

Sitting still in class for an hour? Torture.

My writing hand (and elbow, and shoulder) would hurt to much after taking just a few vague notes, that I'd switch to my other hand. That hand would then hurt so much, that by the time class was over, I'd stopped taking notes.

By the time the semester was over, I had just stopped bothering to take notes altogether. I'm amazed I passed my classes, and without horrible grades either.

It was at this point, it as an "aha" moment. Before this, my symptoms had been vague and hard to explain. While I still didn't didn't have a broken leg I could point to and say "fix it", this was definitely something beyond mere "stress". It also signaled to me, that there could be an autoimmune issue.

I had made an appointment with a doctor once I realized this wasn't going away, but I had a month-long wait. I didn't want to pay for an emergency room visit- especially if there was no guarantee that they would find the problem. I could tell that this was a lingering problem that had somehow been aggravated by the flu. Turns out it was a good thing I didn't pay for an emergency room visit- the first two, and only two, visits with that doctor did not yield answers.

Ironically, though, my endocrinologist does not believe my joint pain issues are caused my the thyroid problem. But, I never would have gotten the thyroid problem figured out if this hasn't happened. After other things tested negative, the posts I'd seen from other Hashimoto's patients regarding similar issues kinda nagged at me.

I do actually still believe there is link- too many other autoimmune thyroiditis patients have unexplained joint pains and musculoskeletal discomfort for me to write of my thyroid and/or a resulting issue as the root. I suppose I'll consider all options though- one never knows.

A little off topic- also an Oprah article

http://newsblaze.com/story/20081209123526lill.nb/topstory.html

I came across this article and had to overwhelming urge to post it, and then publicly call John Lillpop an asshole. Naturally, I have decided that he is an asshole solely based on this article. Some day when I am bored I'll find some more articles he's written to more fully form my opinion.

Now, I don't know how much Oprah is or is not eating. And I'll admit that her comment of 'being afraid to exercise' doesn't really make sense. But this article is still asinine.

My Sob Story

There isn't a great place to start my "story". I think the fatigue started when I was 14, but unfortunately symptoms like fatigue can start in very slowly.

Between 14-16, I puffed out so fast I have large stretch marks to this day. They were a lovely shade of red for years.

From girl who climbed trees and went bike-riding to the girl who just took long slow walks.

You may or may not be able to imagine the frustration. In the many following years, I tried dieting, I tried exercising, to no avail. Some of you... you diet, you exercise, you actually lose weight. Thinking back, I'm not surprised I didn't lose any weight with my efforts- I was quite active when I initially started gaining weight, in the first place!

My junior year of highschool I kept getting sick, so my tonsils and adenoids were ripped right out. Senior year though, I was thinking to myself, why do I still have the bouts of fatigue that I had last year, now without actually getting sick?

But when I started college, I was all optimistic- I assumed I would be able to go to school full time and swing a part time job, then maybe fit in a few social activities. A mere 5 years later, surely I'd be on my way to a high paying job. Yeah... no. In college, I started drinking coffee, and then, more coffee, trying to keep up with the worsening fatigue.

Several fuzzy years followed. I remember locking myself out of my apartment 6 times one month. I remember not being able to remember my mail box number, even after months. I remember random things starting to ache, hands getting cold more and more frequently. I remember awful weakness.

The worst part of those years, I think, was:

*The way my hands hurt whenever I got even a little cold. Cold feet, cold hands, to be avoided at all costs. Yes, I'm sure everyone's hands hurt when they are freezing. But not many people report the same aching stabbing *joint* pain in their hands just when they get chilled. Nor do they get chilled as often. I once described it this way to a friend: someone has threaded a piece of yarn or string through all of your finger joints, and then has grabbed both ends, pulling back and forth so that you get rug-burn in your joint.

*The way I'd get jittery and weak. You might think the jitters would be the result of coffee, cause it's the devil, you know. But I didn't actually OD on caffeine, and the coffee was actually just exacerbating an issue I'd had since high school. It's kinda like hypoglycemia (something I'd never heard of until last year, when I was 23). I seem to have odd symptoms in conjunction with hunger- protein seems to help quite a bit. Over periods of time, sometimes this will be more of an issue, sometimes not. During periods of time, if I didn't get food right away, I'd become confused and weak. And by confused, I mean, can't even decide wtf to eat while I'm standing in the kitchen... for an extended period of time.

*The memory troubles and cognitive slowing that would become more frequent. 'Brain fog' anyone? We used to joke about my "early Alzheimers"

I had to drop my job. Too tired to get up one morning for my shift.

I went down to fewer credits.

I moved out of the dorms and into a one bedroom apartment.

I was attempting stress reduction. I'd considered several angles for what the effing problem was, and could tell that stress really, really didn't help.

But still... why were others able to physically handle more stress? Surely a young woman in her 20's should be able to manage full time college semesters? I didn't even have to do particularly well, just to graduate with a decent GPA. College is stressful, we know that, but my decline in the face of these expected stresses was disheartening.

At heart, I'd like to be a workaholic. My parents, they worked hard to achieve what they have. So from a young age, I was all about achieving academically. Accepting that I can no longer achieve the stellar grades I was once able to achieve... was difficult for me.

Well, around age 23, I was managing. Pushing along. Things weren't easy, but as long as I was making some progress on my college degree and getting halfway decent grades, I had something to hang on to. I was in the 'accepting my limitations' phase. Then, the winter of 07-08 smacked me around.

Link between PCOS and autoimmune thyroiditis?

http://www.ncbi.nlm.nih.gov/pubmed/15012623?dopt=Abstract

I appear to have Poly cystic ovarian syndrome as well. I'm so glad my former doctor would repeatedly mention my weight during visits, I'd kill myself on a treadmill, then for years still be overweight without knowing why.

For the record

Hashimoto's thyroiditis: in which one's immune system rages against one's thyroid.

This leads to decreased function of the thyroid, which is supposed to be super easy to test for. If one's thyroid hormone levels are normal, then surely one should be just about fine until this decrease in function occurs.

**loud "errrt" noise**

A Hashimoto's patient can have normal thyroid levels, but find herself in quite decrepit condition. That, is not even getting into the debate about what should be considered 'normal' thyroid range. Apparently there is more to consider with Hashimoto's than the typically resulting hypothyroidism (or hyperthyroidism).

http://hubpages.com/hub/symptoms-of-thyroid-autoimmunity

Last winter when things took a turn for the worse, I actually thought I was following my grandmother into the land of Lupus and/or Scheroderma. Nope. But my immune system is displaying a sad lack of grace here, what with the attack on my thyroid. Like a basketball player scoring a point for the wrong team. Tisk, tisk.

Dr. Northrup & the thyroid

Really? Based on this Article, I'd call "moron", but it's only fair to look into her more before labeling her so.

Whilst searching, I found this: A patients story

I can't say that I'm in agreement with this patient's efforts to go after Dr. Northrup legally. Doctors are not omniscient. But the tale does illustrate that sometimes the holistic approach isn't a good idea. When it's not working, you have to acknowledge that. I will say that the way Dr. Northrup treated the patient after the patient sent her information about vitamin A was interesting.

I found an interview with her as well about menopause- I'll not bother linking it- I'll just say, I was not overly impressed. Her statements were just short of ridiculous.

I actually had decided not to publish this post until I read more about this Doctor, and I have not the time to do so. But I'm going to go ahead and publish this post now, with the addition of this article link about Oprah's own weight problems.

I'm sorry, but eating nearly nothing in an effort to slim down is not a diet one can maintain throughout the years. And soy? Soy is not a good diet plan for someone with a thyroid problem! Here is a link to an article about soy and the thyroid.

This is starting to tie in with something my mother said to me once. She praised me for researching my symptoms and taking myself to an endocrinologist. She said, she would have just prayed.

I'm no stranger to the desire... to avoid doctors and hope something gets better. Maybe you've gotten fed up, after encountering a few bad doctors. But some things actually do need medical treatment, and no amount of prayer is going to fix it. Sometimes even the medical treatment won't magically make you better. But at least you are actually getting help.

I'm not a religious person. But as my mother says now: prayer it 10%, your own action to resolve the issue is 90%. As in, god will only help if you are also willing to help yourself.

Or one could look at it in a more atheistic fashion as that some times you get lucky, but most of the time, it would be best to move off the train tracks when you here a horn in the distance.

It's hard to get through to people who are hell-bent on some sort of "holistic" approach though... they are convinced that it's the better way to help themselves, and probably feel like they are taking action. I'm not saying that things like "holistic" approaches are the devil, but people need to acknowledge when their current course isn't working, and then try something else. It doesn't hurt to try something new- but it does hurt to keep trying it with blind faith when it isn't working, and it really hurts if you convince yourself it is working when it isn't.

There is some speculation that Oprah has the same autoimmune disease I do, which has led to her hypothyroidism. If that is the case, It's concerning that Oprah would refuse medical treatment. (I read somewhere, that she was preferring the "holistic" approach to the extent of refusing medical treatment- this may or may not be true).

Oh, I got sidetracked: based on Northrop's comments, I'm fairly certain that she must have felt very repressed as a woman, and that has led to some interesting non-medical theories about medical issues. I can understand that. It's unfortunate that Oprah has lent her more publicity, though.

I found yet another article here that tells me I'm not the only one who has... noticed Dr. Northrop.

Post the First

I am starting this blog for two reasons:

1) I'd like to complain about my decrepit state at a mere 24 years of age

2) To leave a stepping stone for others to find


Complaining: You see, I am highly irritated that my own body is such a barrier to my achievement. I actually do believe that the fatigue set in when I was around 14 years old, though it only became a real 'problem' at around age 17. I didn't even make it to a doctor to complain about fatigue and weakness until I was 19. I'll gripe more later, but no, the doctor did not find the problem.

It wasn't until age 23, after a particular phenomenon broke the poor camel's back, that I begin putting some real desperate effort into finding out what the problem could be. Turns out: I've got Hashimoto's thyroiditis. I'd like to believe that's all I have. We'll see.

Some people with this ...problem... have no symptoms, I hear. Others, like me, are fatigue ridden, confused, overweight, and... experience migratory pain in multiple joints.

Fun.

What I mean by 'stepping stone': I plan on writing a whole lot, and allowing search engines huff it all up. Those search engines will bring poor confused googling(you know most of you are using google) souls to my blog, wherein they may or may not find a correlation to their own problems.

Search engines and message boards- people's stories- were very useful to me while I tried to understand what my problem was, and why whatever tests the doctor ran (while trying to figure out what the problem was) came back as 'normal'.

Now that I've complained, I will say that I know people have worse problems; I am not a gothicly suffering soul here- things could be much worse for me.

Sure, gothicly is a word.

...yeah, get used to it, I'll probably be making up more words.