Thursday, December 11, 2008

Medical Update

I've been hesitant to post about this, but so many wonderful friends have emailed and called over the past few months to inquire about the state of my health since my most recent miscarriage that I thought I should give an update.

I have started seeing the wonderful Dr C at a local fertility clinic. This is the same doctor who treated me during my pregnancy with Shay, thus enabling me to sustain the pregnancy. So we clearly owe him a lot, although I don't think either of us realized how much at the time.

I went to see him about two and a half months ago to see if we could figure out why my body hates me and keeps miscarrying. He first reassured me that he will give me progesterone supplements and monitor me very carefully when/if we are able to start trying to have another baby. Then, after studying my file, he pointed out that when I had come to see him when I was pregnant with Shay, my thyroid levels were way off. He asked if I had been having regular blood tests to check my levels.

A bit of background on this--I was diagnosed with subclinical hypothyroidism about six months before Ben and I got married. This answered many questions that had plagued me for about three years at that point. I was displaying all the symptoms of a thyroid condition, but even though I had thyroid tests performed by several different doctors over those three years, they all showed that mine was functioning completely normally.

Then, finally, in early 2004, the wonderful Dr Z pointed out that we might have been doing the wrong test all along. While hypo-thyroidism and hyper-thyroidism show up on the same test, there is another side branch that doesn't show up on that test. And you guessed it--I have the freakish one that doesn't show up on normal tests: subclinical hypothyroidism.

In very simplified terms, the normal thyroid test measures whether your body is making the proper amounts of the chemicals it needs to make. And mine is, so that test shows up normal. However, what the other test shows is that my body completely lacks the ablility to take those chemicals and convert them to a usable form of energy. Thus why I'm freakishly tired all the time, as well as several other problems.

This means that I will need to be on syntheroid for the rest of my life. This causes problems of its own, but that's another story. But in short, I need to have my blood drawn every 3 months, or more often, to determine if my dosage is correct for regulating my levels. And I have been doing that faithfully, but my dosage hadn't changed since January 2007--meaning, before I was pregnant with Shay.

Now, clearly, my body has been through a LOT of changes since then. But the blood tests performed by my OB (the evil Dr M) and my general practioner always came back normal, so I figured I was okay. Sure, I was hugely tired all the time, but I just kind of assumed that this was a result of having two small children.

Let me point out here that every time I have gone in to have my blood drawn at either location, I have specified, "Now remember, I have subclinical hypothyroidism, so that's a different test." Considering that, I felt pretty silly telling Dr C that yes, my levels had always showed up as fine, but maybe, just maybe, was it possible that these other doctors were testing the wrong thing? After all, I had been tested for thyroid problems with the wrong test for three years before the right test revealed my illness, so it wasn't completely improbable. But one would think that with my actual disease listed in my chart and me telling them what to test for, the doctors do the right test. Right?

Wrong. Dr C thought my theory might be correct, so he immeadiately did a blood test? The result? According to him, a normal person's TSH hovers around 1.5 or 2. Mine was 0.0004. Yeah, that's right. It seems that in an effort to treat my subclinical hypothyroidism, my previous doctors had medicated me right into experiencing all the symptoms of untreated hyperthyroidism. Awesome. That, at least, explained all of the intense migraines, nights of insomnia, and hot flashes I had been experiencing for months.

Dr C cut my syntheroid dosage in half and instructed me to come back in a month, after the medication had time to kick in. When I went back, my blood test revealed that my TSH level had rocketed up to 3.54 and I was feeling all the effects of hypothyroidism. This, at least, explained my intense exhaustion and inability to stay awake.

The question, though, is what to do with my dosage now. I'm now on a dosage between the last two, and I go in next week for this month's bloodwork. I have a hunch that it may not be good, because this month, I've been feeling aspects of both sides of the illness. I'm so tired that Ben was struggling to keep me awake as I drove home at 9:00 last night, yet I'm back to having migraines 3 out of every 4 or 5 days.

Dr C said that if this dosage switch didn't fix me, I would need to go see an endocrinologist, because what's wrong with me is beyond his ability to fix. This is particularly discouraging, since the endocrinology center is roughly an hour from our house, and right now, new patients can't get in until May. So I may continue to feel sick for a good long while before I get better. And until we get my medication under control, Dr C says we are not to try for another baby. This is devastating news on all fronts.

Right now, I'm feeling sicker than I have been in years with this thyroid thing. A large part of that is probably that my medication has been switched around so many times lately that my body is kind of reeling from all of that. Plus now that I'm working, there are just not enough hours in the day to even begin to get the sleep that I need to balance out my disease. So I just keep popping migraine pills, chugging caffeine, and hoping for a chance for the better....

More news to follow, as I learn any.


Cathy said...

It all stinks right now, but it WILL get better.

Kathy said...

I'm glad you are getting some answers but I'm sorry you're not feeling well :( It sounds like you are in good hands with Dr. C.

I hope that your latest dosage works for you, but if it doesn't, I've seen an endorinolgost (Dr. Catherine Bain) years ago. My friend has a thyroid problem and goes to her as well. She is located at St. V's at 86th St. and Naab Road, which may be more convenient than an hour's drive, so it's something to keep in mind.

Feel better and hang in there- Cathy is right, it will get better!

Kathy said...

Another suggestion for you - -

I don't know if this interests you at all, but, I very highly recommend reading a book called Taking Charge of Your Fertility by Toni Weschler.

The book has a lot of information in it, but what I liked best is it talks a lot about using charting (I know that scares some people) to recognize some signs of fertility, as well as clues that may aid problem diagnosis.

For example, if your thyroid isn't acting properly (ie: hypothyroidism), you'll notice your temps may tend to be really low. By charting you might recognize over long periods of time your temps starting to shift, which could indicate your medicine dosage may need to be shifted again..or conversely you may notice when a medicine starts to help.

I read this book and charting helped determine & solve my own problem. I think this book offers a lot of insight. It's how I knew my own medicine was working, and what dosage I needed. (My original dosage wasn't correct.)

I really don't know what would have happened if I hadn't read that book.

Melissa said...

Amy, love, my stomach is in knots for you. I do feel like these days you practically have to have your own medical degree to get to the root of any problems, because doctors often don't seem to know what they're doing! I really really hope this dosage is correct so that you can start feeling better and get your life moving in the direction you want!!

Sending out my very best healing wishes to you.

Moonwatcher said...

Amy, sounds like you are closer to finding health but I'm sad you've had to go through so much trial and lots of error. I know that the endocrinologist will be able to help and I'm really glad about that. Please keep hope alive for the future and the many children I know you'll be blessed with.
All my love with you always.

Andrea said...

I'm sorry that on top of everything you've been through, now you are playing the waiting game. After the miscarriage, all I wanted to do was to take action - to get pregnant again. Honestly, I think a miscarriage makes it hard to think about anything but getting pregnant again. I know how awful it felt to try for month after month with no results but I couldn't imagine how awful I would have felt if we weren't even allowed to try. We do pray for you often and will continue. I hope that book I passed along will be of some help to you.

Good luck! I'll be hoping that the reason you are feeling side effects on both sides of the fence is that your body is kind of doing a pendulum right now and will even out to find this is the correct dose. Lots of love - I know we seem to miss each other in person a lot these days but know that I do think about you guys often and am always just a phone call/email away if you ever need anything or want to talk.