Saturday, September 19, 2009

Health Issues

Doctors exhaust me.

I've had several years experience going to doctors (GP's OB/GYNs, endocrinologists, and reproductive endocrinologists) telling them about clear symptoms that I was having, only to be told "your blood tests are normal" and to be sent away. Despite having unexplained weight gain, difficult periods, acne, difficulty getting pregnant, three miscarriages, acanthosis negricans (darkening under skin folds like armpits, thighs, and under my breasts); it took four doctors before I got my diagnosis of Polycystic Ovarian Syndrome, because I finally found a doctor that treated the symptoms, rather than the test range (which I was very close on) and who was the first to know that fasting insulin numbers should be less than 10 in a female, not 18 - as the test range stated.

When I was pregnant with Maggie, one of the meds I was on was a low dose of thyroid hormone. Despite feeling constantly nauseous and dehydrated, mentally, I couldn't remember feeling so clear-headed and like things were good. I was taken off the thyroid hormone a few weeks before she was born, and after she was born, descended into postpartum depression. It never occurred to me that the two were related.

When she was a year and 1/2, I did test positive for anti-thyroid antibodies, but since then, have not, but still have felt terrible. I've really stopped responding to my PCOS meds, and feeling so bad, starting a low carb diet AND feeding three others was just more than I can bear.Since our move, I've gone to three doctors, who all have told me that I test normal on the TSH test, and I might want to consider anti-depressants, ADHD meds, and/or gastric bypass, all of which my gut told me were not the problem. I tried calling a highly recommended endocrinologist off of Mary Shomon's thyroid site, (a site I HIGHLY recommend) but couldn't ever get a person to call me back. That was three years ago.

Now in the present, things just kept getting worse. I kept gaining weight, my skin is worse than it has ever been, I look awful, I feel worse. Finally, I tried the endocrinologist again and got a person, and better yet, an appointment. But still, I feared being told that my tests were normal (interpretation: its all in your head.) Dr. Kadambi didn't do that. He listened to the symptoms and immediately prescribed natural thyroid hormone for me. He ran all the blood tests, but wasn't going to make me wait. My symptoms were very descriptive of hypothyroid. He also added Byetta, an insulin helper drug, to my PCOS meds, and promised it would help me lose weight. (12 pounds in the first month, but slow since then).

The blood tests came back, and the thyroid hormone was normal. But next to the range, it said "may not be normal for this patient." Lots of the results said that. He also found a few other things that were not in range. My vitamin D was low, my B12 was low, and so was my Insulin-Like Growth Hormone. He said that would mean a pituitary stimulus test.

I learned that basically, IGH controls all the other endocrine glands, and there was a possibility I was not making much, since I seem to be having problems with several of my endocrine glands. As I sat there with the I.V. in my arm being stimulated, I saw the diagram on the board that listed the symptoms of Insufficient Growth Hormone....and it was describing me -- difficulty losing weight, social anxiety and isolation, problems with fertility and reproductive cycles, insulin resistance, etc.

The test came back with no change. My pituitary pretty much refused to be stimulated, so the next step was to convince my insurance that I needed it, and Eli Lilly took care of that. I got a letter in the mail last night saying that the growth hormone therapy was approved. Dr. Kadambi says that if this works, and he had no doubt that it would, I should be off most everything within a year. The Byetta and the metformin will be unnecessary should I lose enough weight to defeat the insulin resistance, and my pituitary should kick back in. I don't know if that includes the thyroid hormone as well.

I'm eager to see how this goes....and whether or not it will improve my baseball game (just joking). Its nice to be heard. Its nice to have a doctor that is eager to find the answers to the problem. It's definitely nice to feel like I'm moving in the right direction.


Untamed Shrew said...

My prayers are with you. my initial TSH was 25.1--yes, about 25x the normal limit. I cried off and on all day and gained about 30 pounds our first year of marriage. I couldn't stay awake and probably had no business driving. Of course, since I was only 22, I was first given a lecture on proper eating and anti-depressants before they would agree to take my blood. I am convinced that birth control pills spurred the onset. After 4 pregnancies I'm fat, and they want me to use weight-loss drugs until I tell them we don't use BC. It's frustrating when doctors don't share your values and will only look at the almighty test results.

The Rebellious Pastor's Wife said...

Yes...definitely similar experience. Even though I didn't merit a PCOS diagnosis, in my reproductive endocrinologist's view, birth control was the answer to treating everything. When I had been on birth control our first year of marriage, I was completely psycho. My poor husband. Then when I refused that, he wanted to use Provera to regulate my cycles, all the while, trying to convince me that I probably wouldn't miscarry again if I spent $10000 to do IVF.

Thursday's Child said...

I'm glad you were able to find a doctor who seems to know what he's doing. It's a shame that it took so long and you had to go through so much.

organistsandra said...

Wow, thank you Lord for a doctor who looks beyond test numbers and one who sounds like he'll take seriously who you are and what you know and believe.

Lutheran Lucciola said...

I am so sorry you have been through all this. What an ordeal. Silent diseases (this seems to be in that category) seem to have this "it's all in your head" blow back. People have no idea how difficult it can be.

SO glad you have new options!!

Jane said...

This is such awesome news! It does really stink to be told over and over that what's wrong with you isn't really. I've heard good things about Dr. Kadambi, and I'm so glad you were able to be seen by him.

Elephantschild said...

WOOOO-HOOO! (Isn't it great to have hope? That's how I've felt with my own recent discoveries - HOPE! that things will change.)

Presbytera said...

Absolutely fantastic news. It isn't all in your head!! Thanking God for His good gifts of medicine and a doctor who can see YOU and not numbers.

Cheryl said...

Ditto to what everyone else said, Lora. I'm sorry for all that you have had to suffer. It stinks. May this be the beginning of some long-term answers and much improved health!

Angie said...

What a long journey already. . .I am so glad you finally found a doctor who will listen, and help!

Cecilia said...

a couple of websites that came to mind while reading this: (B12 and D)

and (*do-able* exercises!)

bless you as you bless me!