the day I went in for testing, just hormone levels, but my endo moved my appointment up. She had me come in April 19th, my period of feeling better had gone. :(
First I stopped improving. That wasn't too bad. I thought perhaps I'd reached the best I could feel on the 50mg and was okay with that. I knew it might take awhile before I reached the correct maintenance dose. I contacted my endo and asked about increasing my dose. The reply: your body needs time at least six weeks to fully adjust to the hormone replacement, we'd evaluate the situation at my appointment.
Then I started to back slide. That bothered me. I explained it away, maybe the trip to see family wore me out, then maybe I'm just having a bad day, a bad week, then I ran out of barely believable excuses. I could understand not getting better but losing ground was unnerving. Endo moved up my appointment, earliest she could, six weeks from my last but she wasn't surprised by my tale of woe.
Nothing dire is going on. I'll be fine. That I felt better for a time is good, means replacing the thyroid hormone helps me, improves my life quality. Okay I then whined why am I starting to feel like crud again? Well basically my body is working against me.
In simple terms the pituitary and the thyroid work in a sort of feedback loop. The pituitary is supposed to sense when the thyroid hormone is too low and it increases TSH thyroid stimulating hormone. When the thyroid senses an increase in TSH it is supposed to increase thyroid hormone T4. The actually process is more complicated but that's the basic concept.
Since my T4 is low, causing all the nasty hypothyroid symptoms, endo put me on thyroid medicine which replaces/increases the T4. My T4 has been low for some time, years, but it was only after this last surgery when hormones worsened and I was blunt - I'm sick of being a spectator in my life- that I was put on thyroid medication. Well I may be sick to death of feeling like crap but my body thinks that's normal and wants to keep the status quo. The medication did it's job. My T4 increased, I felt good then the pituitary sensed the new level of T4, decreased it's TSH, which decreased the T4 which meant I felt crappy again. Despite the medication six weeks later my T4 now was the same as it was before. I was not happy.
Endo says that happens. Joy. The answer is to keep increasing the medication a little at a time every six weeks to three months. Too much medication could really depress my TSH and that would be bad. Too little and nothing changes. The goal is to reach the dose where I feel good, the medicine puts enough T4 in my system and my pituitary can't or stops lowering it. She increased me to 75mg. This could be the dose or I could be still working toward my needed level for the next year. I'm supposed to be patient.
It's almost been two weeks on the increase and this one hit me like a ton of bricks. Instead of slowly starting to feel better, I felt like I did following radiation. So lethargic I actually found myself considering if I really need to go to the bathroom that bad because getting off the bed and walking seemed like an extreme effort. Endo says that happens sometimes, give it time, weeks - be patient.
The last few days seem a little better. I'm doing some things but I'm resentful of my body's weakness. I go to the store, a couple bags of groceries because I'm too tired to get more then have to sit around for a while until I have enough umph to do anything else. I couldn't do my nightly walk with the boys for almost a week and am forcing myself to now but it wipes me out. Painfully slow progress in the house, in my writing, in the yard. Life moves on ten steps or more for every one I take. Endo wasn't surprised. Patience is difficult. I'm 44 I don't want to feel 84. Time is a precious commodity.
3/8/11
Progress Report
My endocrinologist decided on Feb. 24th to increase my thyroid medication. For a time daily headaches occurred, not bad but for me headaches of any kind leave a whisper of worry. Is it caused from medication, teenagers, overtired or the tumor? It was the me adjusting to the medication. The headaches are gone now.
Less than 2 weeks on the increase and I feel better. I've more energy, moods more stable and I CAN THINK! Brain fog is a frustrating result of low hormone, like a person's brain becomes as tired as their body. I'm not 100% but think I've improved 50 or 60% so I'm cautiously hopeful.
Another frustrating aspect of all this time when I'm down because of the tumor is that life keeps trucking on by. All the things I've started or I'm responsible for taking care of sit gathering dust or grow worse. Another chunk of my life is gone, again. It's bitter truth to accept.
But whining never solved a thing.
So.
I'm working on all those pesky things that have been ignored or put off, exercise (resumed family walks - worked up to a mile and a half nightly now ) final revisions on my manuscript (will finish in a week or so and though I've learned tons from writing it, I've been stalled so often on the project for 'health' stuff that it feels like years, oh wait it has been years since the rough draft. I'm SO ready to move on, write new stories) the bathroom floor had dollar store tiles (20 bucks lasted 2 years) and they started dying a few months back (I was a little busy then). I've been scrapping them up for weeks now (tire easily but am stubborn, persistent) floor is clear tonight :) Also working on our family photo video I do every year, usually complete around Christmas time, but am hoping by summer. The list of stuff to address is long, would overwhelm me to list so won't :) but it feels good to make some progress. A couple things at a time, one day at a time.
My next appointment is on May 3rd, for Endocrinology, to test my hormone levels, see how my medication is working and if it needs adjusting.
My next MRI is Aug. 19th. Because I had radiation I'll be scanned every 6 months for at least the next 2 years. If all goes well after that, they'll start stretching them out.
Less than 2 weeks on the increase and I feel better. I've more energy, moods more stable and I CAN THINK! Brain fog is a frustrating result of low hormone, like a person's brain becomes as tired as their body. I'm not 100% but think I've improved 50 or 60% so I'm cautiously hopeful.
Another frustrating aspect of all this time when I'm down because of the tumor is that life keeps trucking on by. All the things I've started or I'm responsible for taking care of sit gathering dust or grow worse. Another chunk of my life is gone, again. It's bitter truth to accept.
But whining never solved a thing.
So.
I'm working on all those pesky things that have been ignored or put off, exercise (resumed family walks - worked up to a mile and a half nightly now ) final revisions on my manuscript (will finish in a week or so and though I've learned tons from writing it, I've been stalled so often on the project for 'health' stuff that it feels like years, oh wait it has been years since the rough draft. I'm SO ready to move on, write new stories) the bathroom floor had dollar store tiles (20 bucks lasted 2 years) and they started dying a few months back (I was a little busy then). I've been scrapping them up for weeks now (tire easily but am stubborn, persistent) floor is clear tonight :) Also working on our family photo video I do every year, usually complete around Christmas time, but am hoping by summer. The list of stuff to address is long, would overwhelm me to list so won't :) but it feels good to make some progress. A couple things at a time, one day at a time.
My next appointment is on May 3rd, for Endocrinology, to test my hormone levels, see how my medication is working and if it needs adjusting.
My next MRI is Aug. 19th. Because I had radiation I'll be scanned every 6 months for at least the next 2 years. If all goes well after that, they'll start stretching them out.
2/21/11
MRI post radiation
An MRI, blood work and three doctor visits all on Feb. 18th makes for a long, long day but I schedule them like that to avoid making several 2 hour one way trips to OHSU. My darling husband took a vacation day to drive and accompany me, for support and because I tire easily. We were concerned about me attempting to drive home safely afterwards.
Dr. Fuss, the radiation doctor, Oncologist, was very clear during all my visits prior to this one that his goal for the radiation treatment of my tumor was to keep it from growing again and to preserve my eyesight. Given my history, the type of tumor and how aggressive the darn thing had been, we were to expect no shrinkage, at all, ever, well possibly years from now. Radiation works slowly. This MRI was six weeks after the completion of radiation. We, me, Chris, the boys, my family, the doctors, all hoped to see no growth. That would be a good result. My MRI results were better than expected.
The tumor shrank, still there, but clearly smaller. Dr. Fuss said he kept flipping back and forth to make sure he had the right patient. He checked to make sure I hadn't had another surgery during the six weeks, lol. He/They haven't seen that result before. Usually it's 6 months or better before anything encouraging is seen. I was the first pituitary patient to do 5 day radiation (same amount of radiation as a person receives over 6 weeks, given in 5 days) and Dr. Fuss said if this is the result of that, it may be the way they treat people like me from now on.
Am I excited? Mostly. Chris is, boys are, Mom and Aunts and etc... are. Chris says we need to celebrate the small victories along the way. I'm trying. It's great news. It's just... well I've had good MRI's before. At 3 months post surgery (which this is), 6 months from then (all good post last two surgeries) it's that pesky year past that, the 18 months post surgery MRI that has nailed me with disheartening news both times before. I just can't get jumping up and down excited yet. I need to pass that milestone first.
Hormone test results: Cortisol still hanging on in normal range :), thyroid levels improved after being on medication for two months - still waiting to see if they will keep me on this dose or increase it, still waiting on GH levels (IGF1) but Dr. Fleseriu said they want to wait another year before (if the tumor behaves) putting me back on GH replacement.
How do I feel? Weary, fatigued, all in, beat, broken-down, burned out, collapsing, consumed, dead on my feet, dog-tired, done in, drained, drooping, flagging, petered out, played out, pooped, prostrated, run-down, spent, tuckered out, wasted, worn down, worn out - gotta love thesaurus :)
I'm better than last month though and I hope next month I improve as well.
Dr. Fuss, the radiation doctor, Oncologist, was very clear during all my visits prior to this one that his goal for the radiation treatment of my tumor was to keep it from growing again and to preserve my eyesight. Given my history, the type of tumor and how aggressive the darn thing had been, we were to expect no shrinkage, at all, ever, well possibly years from now. Radiation works slowly. This MRI was six weeks after the completion of radiation. We, me, Chris, the boys, my family, the doctors, all hoped to see no growth. That would be a good result. My MRI results were better than expected.
The tumor shrank, still there, but clearly smaller. Dr. Fuss said he kept flipping back and forth to make sure he had the right patient. He checked to make sure I hadn't had another surgery during the six weeks, lol. He/They haven't seen that result before. Usually it's 6 months or better before anything encouraging is seen. I was the first pituitary patient to do 5 day radiation (same amount of radiation as a person receives over 6 weeks, given in 5 days) and Dr. Fuss said if this is the result of that, it may be the way they treat people like me from now on.
Am I excited? Mostly. Chris is, boys are, Mom and Aunts and etc... are. Chris says we need to celebrate the small victories along the way. I'm trying. It's great news. It's just... well I've had good MRI's before. At 3 months post surgery (which this is), 6 months from then (all good post last two surgeries) it's that pesky year past that, the 18 months post surgery MRI that has nailed me with disheartening news both times before. I just can't get jumping up and down excited yet. I need to pass that milestone first.
Hormone test results: Cortisol still hanging on in normal range :), thyroid levels improved after being on medication for two months - still waiting to see if they will keep me on this dose or increase it, still waiting on GH levels (IGF1) but Dr. Fleseriu said they want to wait another year before (if the tumor behaves) putting me back on GH replacement.
How do I feel? Weary, fatigued, all in, beat, broken-down, burned out, collapsing, consumed, dead on my feet, dog-tired, done in, drained, drooping, flagging, petered out, played out, pooped, prostrated, run-down, spent, tuckered out, wasted, worn down, worn out - gotta love thesaurus :)
I'm better than last month though and I hope next month I improve as well.
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