A mild rant - Once again I have to diagnose myself

Miscellaneous and Personal Stuff I Must Share
1

I was thinking about putting this in the pit, but I don’t really have the energy for a good rant.

I saw my doctor the other day because I thought I was either hypothyroid or that my “girlie” hormones were out-of-whack. Based on the symptoms, she thought hypothyroidism was likely. They drew a ton of blood and ran a ton of tests. While waiting for the blood work to come back, I did a fair amount of web research and found out that I have a lot more of the symptoms of hypothyroidism than I thought.

I talk to the nurse today, who first tells me “all your blood work is normal.” I said “Really - none of it’s even border line.” and she said “Well, one of your thyroid numbers is a little low, but not much.” Well don’t effing tell me that it’s “normal” if some of the values are out of range. I’m not an idiot - there’s a range there for a reason. So I had her fax me the results of the tests, and I saw another one of the tests was out of range. WTF?!?! And of course, having them tell me “nothings wrong” doesn’t exactly make all the symptoms go away, does it? Would it have been so damned hard to refer me to an endocrinologist, or to run a thyroid antibody test? Hell, I found out how underdiagnosed hypothyroidism is by doing about 20 minutes of research on the web, and that some doctors are going back to symptom-based diagnosis rather than bloodwork because the bloodwork only detects extreme cases.

I do little more web-research today, and I find out that a lot more doctors are considering a much more narrow range of values to be considered normal for TSH, and that according to that interpretation I am hypothyroid. Plus, as I said, I have a ton of the symptoms. So when did this become my job when I just had to pay $450 for a bunch of tests? :mad:

So I called around to different endocrinologists. No one can see me for at least a month - one guy couldn’t see me until January.

So here’s what I’m doing:

  1. I am writing a letter to my doctor and faxing it to her Monday. I am going to have her run a thyroid antibody test, and maybe a TRH test as well. I am going to tell her that many doctors consider any TSH level above a 2.0 to be mildy hypothyroid (mine was 3.0). I am also going to try to get her to treat me until I can see an endocrinologist.
  2. I have 3 appointments with 3 different endocrinologists. I am going to call each of there offices once a week, since people cancel appointments all the time. Maybe I can actually see someone before December or January. :rolleyes:

I had to go through this same kind of crap years ago to get anyone to treat my migraines. I’ve had really nasty migraines ever since I was a little girl; I remember getting them at age 3. As soon as I understood what a headache was, I remember telling doctors that I had them. Did any of these people ever once ask me “What does the headache feel like?” Of course not. If they had, I would have been diagnosed and gotten treatment when I was 8 instead of 28. In college I finally did my own research and figured out I had migraines, told my doctor, and once again, nothing. At some point when they got totally out of control, I basically had to demand that I be referred to a neurologist - I couldn’t go on my own or none of it would be covered and I couldn’t exactly afford $1500 for an MRI.

I’m really sick of this. It’s bad enough I have to do someone else’s job at work; now I have to go back to doing my doctor’s job as well.

Crap.

::sigh::

2

Rant away, I know how you feel. I have Epstein-Barr syndrome, no wait it’s Chronic Fatigue Syndrome, no it’s the yuppie flu, no wait it’s Fibromyalgia. And the doctor can completely cure me. Oh, wait, no he can’t. So go to this doctor, because he CAN cure you. Oh, no he can’t.

Repeat for 15 years.

Your turn again, porcupine.

3

porc, I’ve had the same problem - the symptoms, a slightly off-kilter test, but no treatment or referrals! I should get tested again and be more assertive next time. I admire you for standing up for yourself and doing the research.

4

lesa,

You sound like you’ve been through hell getting diagnosed. I have a friend who finally was diagnosed with Epstein-Barr a few years ago after 15 years of being told that there was nothing wrong with her. :mad: Grrrrrrrr…

BTW, welcome to SDMB. Be very careful - it’s addicting.

magdalene,

If I find a decent endocrinologist, I’ll write you a referral. :slight_smile: Seriously, I’ve got appointments with two guys at Northwestern on Hurona and St. Clair (the one I really wanted to see doesn’t have anything until January, so I booked an appointment with another guy as well). If they’re any good I’ll let you know.

I’m sorry to hear you’re in the same boat. It sucks. :frowning:

5

Thanks porc, it might have to wait until I have health insurance again. Good luck!

6

Been there, done that, got very very lucky.

During my sophmore year in high school, I noticed I was short of breath. Went to the doctor. Got the breath test done. Lung capacity was 30% of normal. So far, so good. But then I got sicker. I was exhausted 24/7. I’d sleep for 20 hours, wake up for 2, then sleep for another 9 or so, and wake up tired. Who knows what it is…

But wait…it might be a heart defect. I then went to a specialist. Well, a normal cardiologist can’t read children’s echocardiograms properly. Off to Hopkins. While I’m there…“hmm, have you noticed your neck is swollen?” Low thyroid…off to an endocrinologist. (BTW, my opinion? You really don’t need one after the initial consult. Just get the Synthroid thru yer regular doc.)

I went through a ton of tests, and NO ONE knew what was wrong. I was miserable for over 5 months, because I knew I was sick, but no one could help me. Finally, my internist took a flyer and gave me medication for lupus, even though my bloodwork was negative. And FINALLY, I was better. (side note to lesa - ask about getting bloodwork for lupus…it mimics fibromyalgia and CFS.)

So I understand about not knowing what’s going on, and feeling like yer doctors are idiots. Since then, I’ve been lucky. goes to find some wood to knock on…

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porcupine - Tell your friend to check out http://www.guaidoc.com
This explains a treatment for fibromyalgia/chronic fatigue/whatever they call it this week. It uses the widely available prescription medicine Guaifenesin. It has done wonders for me. There’s a book you can buy, but you don’t have to. The website gives you all the info you need. There is also a list of doctors who use this treatment. I’ll be happy to start a thread about this illness if you have any questions on your friends behalf.

Falcon - thanks for the suggestion about lupus. The medicine I’m taking now is getting me well, but if I don’t get all the way well I’ll get checked for lupus.

Now, a big disclaimer: I’m going to relay some advice about using iodine to help with low-grade thyroid problems. The person who suggested this said ask your doctor first. They’ll generally tell you it’s ok to try this.

“Transdermal Iodine”
"You use regular first-aid type iodine (Tincture of Iodine 2%. DO NOT use Betadine (10% iodine)). Basically, you daub iodine on the soft skin of your lower belly, to make a square stain roughly 3 inches by 3 inches. Don’t paint over and over the stain – just do one layer. Let the iodine dry, and put on underwear you don’t mind being stained slightly, because a little of the iodine may rub off. Then you just check it every couple of hours to see if the stain is still visible on your skin. Obviously, taking a shower or bath will wash the iodine off, so it’s best to put it on right after you bathe and then don’t shower or bathe again for 24 hours.

     "Your body will absorb the iodine. If you have enough iodine in your system already, 24 hours after you first put the stuff on, you'll still see a faint yellow stain on your skin. But if you are deficient in iodine, then you'll absorb the stuff faster and the stain will completely disappear. (The first time I put the iodine on, the stain was gone in just 2 or 3 hours. The next time, it took a little longer. The next time, a little longer. After several times, I got to the point where the stain was still faintly visible for 24 hours.)

     "When you get to the point where your stain is still faintly visible after 24 hours, then you just wait 4 weeks and repeat the process. Again, you just keep doing stains until you still have the faint yellow stain after 24 hours. Then you wait another 4 weeks, then start again. Most of the time now I get to the 24-hour stain with just 1 or 2 patches of iodine, maybe 3."