Feb 24, 2012

My annual physical - the good and the bad

Here is a summary, as I remember it, of what my doctor told me:
  • noticed that my ferritin level is still very low (up to 28!), advises I increase supplements and repeat labs in 2 months. [note: I've been on supplements now for 5 years]
  • believes I have Chronic Fatigue Syndrome and that I need to learn to pace myself,  live with my limitations and treat the symptoms.
  • was very resistant to my questions about the genetic test for MTHFR, telling me a story about a patient she did not authorize a genetic test for who went to the US and paid for the test...apparently she felt this was irresponsible; whereas I think if you have the money, why not?
  • Told me that MCH means "red blood cell height"....height? (I am envisioning a long, tall blood cell at this point). But not to worry, because lots of people are over the reference range for this test. Thanks to my blogger friends, I knew that one.
  • Suggested that an ANA of 1:640 was not uncommon (despite my research showing that a titer of 1:80 is found in less than 5% of the population, 1:120 in less than 3%...)
  • Has trouble believing that a TSH below 5 could make much of a difference clinically (but agreed to continue treating anyway, thankfully)
  • Thinks that giving me access to my lab records may be harmful to me, presumably because I will research the results online and come up with new theories. (but agreed to continue sharing them, with a longer turn around time).
  • Did not seem to fully accept that their office sent outdated lab results to the endocrinologist (after declining to send me my most recent copy records in preparation for the appointment), leading to the specialist choosing a potentially inappropriate course of treatment.
  • Is concerned about me continuing to seek explanations for my fatigue and bringing ideas and research to her for discussion. (I think she feels I won't value her opinion).
BH attended the appointment with me and shared his reflections when we left, saying, "I don't think either one of you is listening to, or understanding the other."

Here's how it looks to me: I feel like she is telling me that I have to give up hope of finding an explanation...if given the Chronic Fatigue diagnosis, I'm afraid I'll get put in that box and forgotten - never getting back to work or to school. 

BH says he doesn't see it that way, he thinks she is trying to manage my expectations.

I know that there may not be an answer, but if I'm not the one looking for it, who will?

In the end, I think we got to a fair understanding, I just wish that I could communicate more effectively with her from the start.

Feb 21, 2012

Penelope 1 - Depression 0

What does it feel like to fight depression?

It was an agonizing effort to push my body forward, despite having no neurons supporting my decision to move.

During the very worst of the dark, ugly feeling,  I forced myself out for a walk. The sun was too bright, the air was too cold. My legs felt like leaden. My heart was pounding.

But then a funny thing happened...about 40 minutes into my walk, I stopped noticing how crappy I was feeling and started noticing the trees, the ice on the walkway, the river...it was like the world outside my head suddenly started to materialize. I started feeling alive again.

In fact, I felt so good that I came home and did another two miles on the treadmill, logging in at over 10,000 steps!

And that is how I fought depression and won this round.

Feb 17, 2012

It's back.

Depression. I'm pretty sure it has come back.

Today's feeling of tiredness isn't the usual, more physical feeling of fatigue that I'm used to. This time it is a sense of deep apathy...like getting up sounds nice, but staying in bed is just easier.

I've been trying to go for a walk now for the past four hours. I haven't even made it to my shoes yet. The heaviness feels unbearable.

We've had some stressful issues to deal with lately, and when I think about them, my eyes tear up and I feel overwhelmed.

Where did this come from?! I was doing SO well. I was back on the treadmill, even running for up to 15 minutes. This time last week I was thinking I might be able to get back to school again soon. 

Is it even remotely possible that the T3 has triggered this? I know it seems unlikely, but that's the only change I've made recently.

Now I just want to lie down in a dark room and close my eyes. 

I hate, hate, hate depression.

Feb 14, 2012

Day 3 on T3....zzzzzzz

If I thought for a minute that T3 was going to give me a 'kick' of energy, boy was I wrong.

I've slept almost non-stop since starting my T3 dosages (half a pill, twice a day).

Brilliant Husband says I need to give it a chance, but sleeping around the clock - especially when I was actually ON the treadmill last week - seems like a step in the wrong direction.

Feb 11, 2012

Adding T3

Despite my reservations, my visit to the endocrinologist actually went quite well.

The resident who took my history for the better part of an hour was excellent. She quickly picked up on my anxiety and skepticism from previous medical encounters and assured me that she would cover everything possible during my exam. Her presentation of my case to the specialist was impressive - she summarized everything I had shared with her into a complete profile, highlighting the issues that she most felt related to thyroid. Her future patients are going to be fortunate to have such a thorough and caring physician.

The endocrinologist told me that adding T3 made virtually no difference for most people - the only notable exception being people with depression. Because of my history of depression, he thought it would be worthwhile to try adding T3 at 25mcg/day (half in the morning, half at night).

The theory is that in some people, T4 does not effectively convert to T3. I pray that I am one of these people. What a joy it would be to feel like my 'old self' again.

One interesting aside - both the endocrinologist and the resident noted my high ANA level (1:640, speckled), saying that it was suggestive of 'some other process' going on in my body. They took blood tests to look for markers of inflammation; which I should hear more about soon.

So this morning I took my first dosage of T3...and I screwed it up! I took a whole pill in the morning instead of half. Here's hoping all goes well today.

Feb 9, 2012

Seeing an Endocrinologist today

In three hours I will be seeing an endocrinologist to address my fatigue.

I'm in a state of anxiety. All of my fears are triggered. I am worried that I'm in store for another humiliating consultation. The problem, I think, is that I don't look sick.

The clinical question my doctor has asked him is if T3 should be added to my T4 treatment. But I'm hoping that he will look a little further. Maybe, just maybe there is something else that he can identify.

Perhaps if I show up in my sweatpants with no makeup I will look more like a patient? Nah, then he would just write me off as "depressed"... *smile*

Feb 2, 2012

My dog has hives

My dear sensitive dog is covered in hives. The poor little guy. He was up all night scratching.

I have no idea what he got into, but I suspect it happened during our walk last night (as he was fine before that).

This morning I gave him Benadryl, coated him in 1% Cortisone cream & spritzed him in Benadryl spray. I'm holding off on oral steroids, mostly because I am stretched to pay for another vet visit (all three of them have needed treatment in the past month) unless I'm sure I can't control the hives myself.

This afternoon we are going to try an oatmeal bath.

I'm open to any suggestions if my dog-owning friends want to chime in.

Update:  His hives were worse today, so I ended up taking him to the vet. He was given a shot of steroids and is now resting comfortably. Still no idea what triggered this allergy attack.

Feb 1, 2012

Access to lab test results

Dear Penelope, 
...regarding copies of tests: we're wondering if you wouldn't mind
collecting copies of records once or twice per year (consolidating the
requests).  Dr X or I will call you if there is any concern with
reports that come in.  This would make requests for lab copies more
efficient for both of us. 

- Concierge Medical Clinic

Well, it would certainly make it more efficient for them.

But when I'm paying almost $3,000/ per year to have improved access to my physician (email, 24 hour appointments, etc...) I don't think copies of my lab tests are unreasonable.

They also didn't take into account that my recent surge in TSH was missed by the doctor because it fell within the 'normal' reference range.

Perhaps for some people that isn't clinically significant, but for me, I was feeling dreadful until my Synthroid was increased.

Most of all though, having access to my lab tests gives me some measure of control.  Having lost my career, and holding on to the promise of a PhD by a thread, there is very little I feel in control of these days.

I need help communicating with my doctor.