Tearing my hair out, aka No idea which treatment to try

May 20, 2012

Today I wrote this email to some of my friends and family because I feel confused, overwhelmed, and stuck.  As I was near the end, it occurred to me that you might have some useful advice.  So for anyone out there who has had to deal with difficult treatment decisions and/or has thyroid problems, please offer your advice.  Please write a comment, sent a tweet, or shoot off an email.  I would love any and all advice that you want to give!

This is the exact email I wrote.  The only change I made is my name at the bottom.  Please tell me what you think.  What would your next step be if you were in my position?

~~~~~~~~~~~~~~

If you’re getting this email, it’s because I think you’re smart and I value your opinion.  You might not have an opinion to this, and that’s ok.  There’s definitely no one right answer.

Basically, I’m stuck with the health stuff.  I definitely need to try something new, and I can’t decide how to proceed.  Every time I make up my mind, I change it.  If you feel like reading this, set aside a few minutes.  I’ll lay it all out.  If not, that’s fine.  I definitely won’t hold it against you!
For the last three months I’ve been on a gluten-free diet.  This has definitely helped.  It has definitely not helped enough.  My guess is that being gluten-free is part of the solution.  I need to figure out the rest now.
I am making the assumption that I need to treat my thyroid.  This could be wrong, but out of everything, this is the part I’m most confident about and I feel good about proceeding this way.  Also, I don’t have any other ideas.  But no, really, this does make sense.  Hypothyroid and raised thyroid antibodies (which are related but not the same, and I have both) can cause fatigue (hello!).  There is a link between these and PCOS, IBS, acid reflux (which I may or may not have), and joint pain.  Then I’ve been reading about other random symptoms that I can relate to but that I’m not focusing on.  A good example is a “normal” body temp below 98 degrees.  I have this, and I never thought much of it, other than adjusting my math when calculating a “fever.”  Maybe it’s related to the hypothyroid or maybe not, but I’m not going to worry about it.  However, there’s a good chance there’s a link with the fatigue and GI problems, and a smaller chance with the joint pain.  By the way, hypothyroid means my thyroid is underactive.  Really, you don’t need to know anything about it for this.
For 8 years I have been on the most common drug to treat hypothyroid.  At first it seemed to work in terms of my energy level and blood tests.  Now my blood tests still look good, but I have been finding more and more people talking about having normal blood tests while still have hypothyroid symptoms.  There is no treatment for the raised thyroid antibodies other than surgically removing the thyroid and I am definitely not considering that.
Options for treating hypothyroid and raised thyroid antibodies:
— Try another drug of the type I’m on.  This treats the T4 hormone.  There are other drugs and maybe one of those will work.  This is the approach that almost every doctor will suggest.
— Try a drug to treat the T3 hormone.  There aren’t as many doctors who will do this, but they can be found.  I found one in Newton.
— Try a combination of T3 treatment with supplements or dietary changes.
— Try supplements and dietary changes – no drugs.
— Try dietary changes alone.
The easiest answer is to try the drugs, but the more I read, the less likely it seems that these will work.  Trying the drugs would give me a faster answer than diet, but I could be dealing with nasty side effects.  I think it makes sense to try dietary changes.  That’s why I did the gluten-free diet: I read a lot about gluten triggering thyroid antibodies.  Celiac is when gluten triggers intestinal antibodies, so this makes sense.  The fact that the diet has helped a little makes me think that I’m on the right track.  And the idea of not having daily nausea…. what a dream!  So even if the dietary changes don’t fix everything, they should at least fix the GI problems and that would make this all worthwhile.
Ok, so that’s why I want to pursue the “unconventional” approach of changing my diet to fix my thyroid instead of taking more pills.  And because it’s unconventional, I can’t simply ask my PCP, etc. for advice.
If you think this isn’t the right approach please speak up, but give me a reason why you think it’s wrong.
So assuming that I should make dietary changes, the problem is that I haven’t found any agreement on how to go forward.  Some people say to take all of the trigger foods out of your diet, then reintroduce them one at a time to see what happens.  Others say to eat normally but remove one trigger food at a time to see what happens (this seems like a terrible idea – if more than one food is a problem, you wouldn’t figure it out this way.)  The lists of trigger foods vary.  They all include gluten and dairy.  Most include soy.  Some include eggs.  Some include certain fruits.  Some include certain vegetables.  Some include corn and corn gluten.  Some include all grains.  Some include alcohol or caffeine or carbonated drinks.  There’s no one diet to try.  Clearly I can’t remove all of the trigger foods from all of the diets all at once – there’d be almost nothing left to eat!
There’s also something called leaky gut.  I think that a lot of these diets are aiming to repair leaky gut even when they don’t say it, but it’s hard to tell.  Leaky gut is starting to become more mainstream in western medicine, so I could potentially find a doctor who would help me with it, but there’s no test and no treatment other than diet.  The idea is that a food allergy/sensitivity causes permeability in the gut lining, and this causes certain things from the gut to link into the blood stream where they trigger an antibody response.  Removing the trigger foods will allow the gut to safely heal.  But then once you have this, it’s very possible to develop new food allergies, so it’s possible that today I need to remove gluten and soy, and in a few years I’d also need to remove dairy, and some time down the road I’d also have to remove watermelon.  But the idea is the same – find the trigger foods.
In theory I can try all of the diets one at a time, but in reality that is really hard and I honestly can’t imagine spending years trying to find the right diet, all the time knowing that the answer may not be diet-related after all.
And having said all of that, hopefully now you see why I feel stuck.  And if you don’t, then please explain the solution to me!  I think I should try a diet, but I don’t know how to determine which one.  I’m reading books, blogs, and web sites.  I am getting advice from commenters on my blog and from twitter friends.  Everyone says something different.  What criteria would you use to make a decision?
Thanks for any clarity you can provide!!  Any insight at all would be extremely helpful!  I’m definitely at the point where I need to try something new, and I could start it tomorrow, if only I knew what it was.
Thanks,
Ms. Rants

4 Comments | Decisions, Educating, Expectations, Frustration, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Enduring their sadness

May 19, 2012

I love that people care enough that they want me to get better.  I just wish they’d stop asking me how I’m doing.

Last fall I wrote about how difficult it is to reassure people, but yesterday brought it all crashing back harder than ever.  People ask how I am and they want so badly to hear that I’m doing better.  I’ve had to ask people to stop asking.  I know it’s hard for them, but it’s a lot harder for me.  Thankfully, they’ve all been respectful of that so far.

Unfortunately, that doesn’t work for everyone, especially my grandparents.  There are two reasons why it’s especially hard with my grandparents.  For one thing, their memories aren’t great these days, so they’ll ask me how I am, forgetting that we just had that same conversation the day before.  I’ve asked them to back off, and they did for a while, but then they forgot.  This is not their fault.  But it’s still difficult.

The other problem is that their health isn’t great.  I know that a big part of it is that they want to see me improve before they die, which could be soon.  It used to be that they wanted to see me married while they were still around.  Thankfully, they’ve adjusted their expectations of that (though I’m sure they’d still be thrilled to see me married, just like I’ll be devastated if my future spouse never meets them.)  The hard part of this is that they are being so selfless.  They want to help me and are frustrated that they can’t.  There is nothing they can do now, but they still want to know that I will be ok in the long run.  I want desperately to assure them that I’ll be fine, but I just can’t do that.  I’ve thought about faking a fiance.  I could probably manage that, actually.  But I can’t fake my health.  There is just no way I can pretend to be healthy.

So yesterday was another hard day.  Again, they asked how I was doing.  Again, they were disappointed that I’m not all better.  Again, they talked about me going back to work and again, I had to explain that I can’t do that right now.  Again, I avoided the obvious, that I may never improve.  I came home wanting to cry.  Just writing this I’m getting tears in my eyes, something that almost never happens.  It is so hard to see the people I love hurting.  I wish I could get better for them, but of course, if I knew of some miracle cure, I’d have done it already.

There’s really no choice.  I will keep plodding along with the various treatment options that I’m finding.  I will continue to research doctors and other medical practitioners, medications and diets and other treatments.  I hope that sooner or later something will work.  In the meantime, I will have to continue to tell people that I am not better.  And I will have to continue to endure their sadness.

4 Comments | Educating, Expectations, Frustration, Insensitive, Intrusions, Isolation, Kindness, Rants, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

My hero: mom

May 15, 2012

My mother has been my greatest supporter.  Mother’s Day was a few days ago, but as I wrote then, it was a bit hectic, so I’m writing about my mom now.  Of course, I really don’t need a special day to write about her; she’s amazing all year round.

My symptoms started when I was 12, so my parents were of course a huge part of things.  My mother took me to every medical
appointment, held me when I was scared, and helped me in every way she could.  When I couldn’t hold a knife, she cut my meat for me (and wow did I hate that; what teenager wants their mother cutting their meat?)  She let me yell at her when I was upset and angry.  I’ve taken a lot of emotions out on her over the years.

When all the doctors were saying they couldn’t help me, she pushed for me to see someone new.  When the doctors, and even relatives and friends, said that my symptoms were all in my head, she never believed it.  After a while, even I started to wonder if I was just making it up, but I never saw her doubt that my pain was real.  It was 11 long years before a blood test finally confirmed that the pain wasn’t a figment of my imagination, and she never showed the slightest doubt in all that time.

Even now, as my mother is getting ready to retire and move on to new adventures, she is always thinking of me.  I know that mothers always think of their children, but it’s more than that.  She checks on me, asks about my health, and still lets me lean on her when I am scared, confused, or just need someone to listen.  She advises me and supports me, even when she doesn’t agree with my approach.

My mother is smart, strong, and beautiful both inside and out.  She is the most spectacular person I know.  I am thankful for her every day.

Who supports you?  Who do you admire?  Feel free to brag about them in the comments.

Leave a Comment » | Kindness, Limitations, Pain, Raves, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

Emergency adrenaline, non-emergency fatigue

May 13, 2012

The day started like any other.  I shut off my alarm, read in bed, took a pill, read the paper in front of my lightbox, ate breakfast.  Then the phone rang.

Emergencies are never easy, but apparently they’re even harder for me these days.  In addition to the mental and emotional strain, there’s also the physical strain.  The second I heard my mother’s voice, the adrenaline started rushing.  I knew it was her parents.  I called to get a doctor over there immediately, then stopped to think for a moment.  I couldn’t leave the house without taking my pills, so I took my pills.  What next?  Clothes, I should probably get dressed.  For 10 minutes I hardly knew what I was doing, but somehow I got clothes on, called my sister, got water (because I knew I couldn’t afford to get dehydrated today) and ran out the door.  There are other things I would have done if the day had gone as planned, but suddenly I was going to my grandparents’ place 2 hours early and in a panic.

The drive over takes 20-30 minutes, depending on traffic.  Today I got there in 15 minutes.  I hit every light on the green but one.  That never happens.  And, um, I may have driven 80+mph the whole time I was on the highways.  But I was careful.  I signaled, I didn’t cut people off, I paid extra close attention.  My energy was waning before I even got there.

By the time I arrive, they were bandaged up.  There were no broken bones from the falls, just a lot of blood.  Some of the health problems they already had were exacerbated and had to be taken care of.  My parents and I ran around taking care of them, making sure they were ok, cleaning up the blood, calling the necessary relatives.  It was exhausting, but I couldn’t not do it.  I was relieved it wasn’t worse, but I was still worried.  It was physically and emotionally draining, but so what?  I ignored my body as much as I could.

We were all there earlier than we had originally planned for Mother’s Day, so we just stayed.  It was hours of attentiveness, running around, and forced cheerfulness.  We left early in the afternoon so they could rest and we moved on to my mother’s part of Mother’s Day.  Some day for her.  She was amazing though, taking care of her parents and also checking to make sure I was ok.

I held it together all day somehow.  I spent more time sitting in the afternoon than anyone else did, but I made it.  I wanted my own mother to have a good Mother’s Day, at least what was left of it, so I pushed through.  I hadn’t brought food with me, so thanks to the gluten-free diet and the limited options, my diet was lousy.  By mid-afternoon, I was fading fast.  Just driving home was hard, but when I finally arrived, there was an obvious lack of good food options.  I would have gotten take-out, but I couldn’t think of a place to get gluten-free food that wouldn’t be out of the way.  No, I was just too tired.  I cobbled together something meal-like and collapsed in front of the tv.  The adrenaline was long gone.  It took a while before I had enough energy to take out my laptop and do some typing.  Getting off the couch was just too much effort.  In fact, if I hadn’t drunk so much water (and therefore had to get up to go to the bathroom) I probably would have never gone to the computer tonight.

This was one hell of a day and definitely not what I expected.  I’m paying for it now, and I have no doubt I’ll be paying for it tomorrow too, but I’m just so glad that my grandparents are ok.  Life is hard.  Chronic health issues suck.  But having a great family makes it all so much better.  Hopefully there won’t be another emergency any time soon, but at least if there is, I’ll know what my body is capable of.

Leave a Comment » | Expectations, Frustration, Limitations, Rants, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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