Some symptoms I hope to “cure”

September 29, 2013

A couple weeks ago I wrote about wanting to improve my health. I’m hoping to start a new treatment soon, and there’s a good chance it could fix a lot of my symptoms. I don’t know if I’d consider it a cure exactly, but it should help.

The truth is, I can only guess at which symptoms are related to my thyroid condition, so I can’t be sure which could potentially be helped. And then of course, I don’t know how well the medication will work for me. But what gets to me is all the symptoms that could potentially be related to my hypothyroid that I didn’t know about. I figured my fatigue might improve, but by looking at symptom lists and following online patient groups, I’m realizing just how much else could possibly improve. So here’s my list of symptoms that I have reason to believe might improve on the new medication. I sure hope I’m right!

  • Fatigue
  • Joint point (some of my pain mostly likely isn’t related to the thyroid problem, but some of it could be)
  • PCOS
  • Raynaud’s
  • Foggy thinking
  • Pins & needles feeling in various parts of my body
  • Extreme sensitivity to heat and humidity
  • Sensitivity to cold
  • Difficulty regulating body temperature (once hot I stay hot, once cold I stay cold)
  • Dry eyes
  • Feeling like my arms and legs are dead weights
  • High cholesterol
  • High triglycerides
  • Heart palpitations
  • Digestive problems
  • Unusually dry patches of skin
  • Acne
  • Weight instability
  • Fluctuating sex drive
  • Memory troubles
  • Trouble concentrating
  • Tinnitis
  • Low blood pressure
  • Sleep problems

Of course, there are more hypothyroid symptoms. You can find some of them on this list. But these are the ones that I’ve got and that I hope might go away. Can you imagine? I can’t. I’m scared to think it’s even possible. But what if….? What if these went away/improved? What if I got better, even just partially? It could be incredible.

I have to wait several more weeks at least before I can try the new medication, and then it could take months before I know what, if anything, it will fix. But just having hope after so many years of having none is already an amazing gift. I sure hope it works. I hope that at least some of these get better. I’ll let you know soon….

My timeline for going out

September 25, 2013

2 weeks before event: put potluck in calendar

1 week before event: see potluck in calendar, see many other things in calendar, wonder if I’ll make itDinner

Sunday: thinking potluck is a good idea

Monday: figure out what to cook for potluck

Tuesday: feeling optimistic; buy ingredients for dish for potluck

Wednesday morning: stay in all day to rest up for tonight’s potluck – yay!

Wednesday afternoon: figure out timing for cooking and travel

Wednesday evening: cook dish for potluck, look up directions to place of potluck, start getting dressed for potluck

Wednesday evening, later: realize I don’t really want to go to the potluck; ok, I want to go, but not as much as I want to stay in my pajamas and watch tv all evening; yup, that’s what I want

Wednesday night: watch tv, eat the dish I made for the potluck, remember that I’ll go out another time, hope that some day nights aren’t so tiring for me, feel glad that I’m just feeling a bit tired and not feeling completely horrible like some other nights

Thursday will be another day with new opportunities.

When a treatment actually works

September 24, 2013

I was really nervous at today’s appointment. I followed the doctor’s instructions, but did it work? What if it didn’t? What if my levels went up but not enough? The numbers ran through my head: 100 or more would be great! 70 would be ok, I guess. But what if it was only 50? What if it was lower? But first, let me give you a little context.

I’ve had low ferritin (storage iron) levels for as long as I can remember. I’ve been going through my old medical records, and the other day I found a low test from 10 years ago. I tried oral supplements, but they bothered my stomach. I tried different pills, but they didn’t work either. I tried eating more red meat, but that didn’t work. Doctors have said I should address it, but no one has sent me to the right specialist.

I’m anxious to move on to a new treatment for what I consider to be my biggest source of problems right now, which is my hypothyroid. The thing is, from what I’ve read, the hypothyroid treatments just won’t work well enough, and they could even cause problems, if my ferritin is too low. So I had to fix it.

The hematologist suggested I get iron infusions. Instead of taking pills of 30mg or so of iron, I’d get 2 infusions of over 500mg each. That’s a lot of iron! I figured I better try it, since nothing else had worked. As instructed I got the first infusion, waited a week, then got the second one, then waited 4-6 weeks to retest. Waiting was brutal, but I had no choice.

The doctor said that many patients begin to have more energy within a few days, and certainly within a few weeks, after the second infusion. Someone I know who did this said the same thing. She was excited for me that I’d feel so much better. But I didn’t. I felt nothing. I felt the same. So I worried that it didn’t work. And I kept worrying, because I had no way of knowing. Until today.

The range is 13-150 for women (though my doctor thinks this range is off, but that’s a discussion for another day.) For a woman getting her period, it should be around 70. For a woman with inflammatory issues, which I clearly have, it should be over 100. Before the infusions, my tests were anywhere from 7 to 26. The last was 22. Obviously 22 was not good.

And that’s how I ended up at the doctor’s office today, very nervous about my latest test results. Thankfully he had a cancellation, so I was able to worry for 9 fewer days than I’d originally planned. I sat in his office, waiting for the numbers to come up on his computer screen, thinking about all of the possibilities. Until today, I hadn’t realized how pessimistic I really was. The truth is, after all these years of illness and failed treatments, I guess I now expect treatments to fail. After all, that’s usually what happens. So when he told me the result, I was speechless: over 600! Wow! Even the doctor was shocked. He had said this could happen, but it’s very rare, and given my background he really didn’t expect it.

I’m a little worried about that high number, but the doctor assures me that my body will get rid of the extra ferritin on its own. Still, I’ll do my own research because I’ve learned over the years not to blindly trust doctors with my health. But still! Wow!

I think that this success has done three things for me:

  1. It has fixed my ferritin problem, at least for now (I may need another infusion in the future.)
  2. It has allowed me to move forward with my hypothyroid treatments.
  3. It has assured me that standard, prescribed treatments can work for me.

It will take a long, long time for that last one to sink in, but I hope it does. This is so huge! For the first time in a long time, a treatment worked. And maybe, just maybe, it can help me regain my health.

How important is your health?

September 23, 2013

I’ve been trying to help D with his health issues. After getting really frustrated last week by what I saw as his unwillingness to try harder to fix things, it suddenly occurred to me: I was projecting my own values onto him. I needed to figure out his values. So I came up with a little exercise. I found it interesting for myself, so I wanted to share it with you, too.

All you need is a paper and something to write with, or someplace to type, or a recorder to speak your answers into, or whatever else works for you. Now, answer these 4 questions:

  1. On a scale of 1 to 10, with 1 being the worst health you can imagine and 10 being the best health you can imagine, how do you rate your current health? By “current” I mean recent. Use the last 6 months or so, and just average it. Be honest, now. What’s your current health?
  2. On the same scale, rate your goal for health, being realistic. Let’s face it, some of us will never be a 10, but still, we want to reach as high as we can. What’s your goal?
  3. On a scale of 1 to 10, with 1 being not important at all and 10 being more important than anything else in your life, how would you rate the importance of reaching the health goal you just set? Consider the many things you may or may not have to give up: your favorite foods, your closest friends, your home if you need to move to a new climate, your favorite activities, etc. How important is it to you?
  4. Now, list out everything relevant to #3. Be thorough. You may want to reference this in 6 months or a year to reassess your priorities. List it all.

What do you think? Did you learn anything? In case you’re curious, here are my answers.

  1. 5
  2. 8.5
  3. 9
  4. I’d be willing to give up anything except my family and friends. Everything else is fair game if it means improving my health.

I ran these by my parents and they seem to think that my first two answers are pretty realistic. Of course, it’s all guesswork, but they know me well. On the other hand, when I did this with D, I disagreed with his answer to the first question. We got into an interesting conversation about how his good habits are helpful, but they don’t override the problems that he has. You may want to run your first two answers by someone close to you, also. The perspective is really helpful.

What are your answers? How do you rate your health and what’s your goal? Are you there yet? If not, how important is it to you to get there? I look forward to reading your answers!

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