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| Saving her energy for her next round of ball chasing. |
There are a bunch of things from today's visit that I am chewing on that may show up here, but we'll start with the fatigue. I have been a little bit more tired than I expect to be recently and I asked about it. My John stand-in said that in her experience, people younger than me (like in their 20's) get their pre-leukemia energy back and people older than me (like 60's) get back about 80% of it. She said she felt she couldn't really predict if I would be more like a 20 or a 60 year old. I sure feel more like a 60 year old.
I reminded her that at one point, John had talked about a transplant of my own filtered stem cells (an autologous stem cell transplant) and that some one had told me that took about six months to get back to normal after. She said that was not what she had observed that it took way longer and anyway the chemo I had was about as bruising as an auto stem cell transplant. This was a surprise to me because since I didn't have that hard a time with it, I assumed it was actually fairly wimpy chemo (I imagined it as "chemo lite"). Hunh. I guess not.
It seems I earned my fatigue.
I am thankful that my labs are normal and hopeful that my energy becomes so.
I certainly can relate to your fatigue, Mary. I am 5 weeks out from a total thyroidectomy for papillary with follicular variant thyroid cancer.I had an exceptional surgeon at Mass General. I felt pretty darn good after the surgery, but now feel like I was hit by a mack truck. I don't think I have the energy to cut up a tomato about now. I went back to work in two weeks to a very heavy schedule - the typical 13 hr shifts with no lunch and supper breaks and 100% focus the entire time. I love my work, my clients and CVS so I went back as quickly as possible, but I may have over done what I was capable of. I am hoping that I can catch up on sleep on my days off and perhaps figure out the hormone replacement piece to this. Do you have any thoughts on Armour "natural dessicated thyroid" versus Synthroid t4 and Cytomel t3? I am on Synthroid and Cytomel - the same dose that I was on prior to surgery so I am sure my levels are off, but every time we increase it I get very severe neck and chest palpitations. Hence I have asked to back off on the dose. Now they say my TSH has to be below 1 because of the ca. I haven't a clue how I will make this happen. It has been running around 3. I would love to hear if you have an opinion on this. There are a lot of thyroid patients that feel very strongly about Armour versus a synthetic replacement version. The majority of the medical community, however, has never really jumped on that band wagon.
ReplyDeleteSo glad to read you are doing so well, Mary. Marian
Take care of yourself, my dear! I hope you are able to get your life back in order. I mean, I really really understand about wanting to get back to work and normalcy (for me there was a sense of how will I know I'm back to normal? I'll see patients in clinic again). OTOH, one should not overdo stuff. If you go back too hard and end up having to take time off in a few weeks to recover from going back too early, it will be discouraging. Maybe you can talk with them about a way to not work 13 hour days or to get lunch hours or ? Just a thought.
ReplyDeleteMy thoughts on synthroid/cytomel vs armour are pretty simple. Some people say that there are a lot of hormones made in the thyroid besides T3 and T4 and they are important for feeling good. This may be true; we just don't know. Or it may be true for some people and not others. OTOH, we did not know about mad cow disease twenty years ago and for all we know there may be some disease harbored in dessicated ground up pig thyroids. Also, the dose of dried, ground up pig thyroid is not as easy to calibrate as the weight of a substance made in a lab so one can be more sure of the dose and that day to day one is getting the same amount and the same amount of additives. You just don't know what else might be in an animal product. If the pig ate PBB contaminated feed, do the PBBs end up in the armour thyroid preparation? etc. (spoken like a person who grew up in Michigan in the 70's)
I encouraged my patients to do T3/T4, but if they came to me on armour and were unwilling to switch, I did not push it and left them on armour (I think there were maybe a couple of patients who did not switch). I once had someone ask to switch to armour and I wrote the rx for them after giving them my lecture. I cannot remember if they liked it better or not.
It sounds like what you are having is standard thyroid over-replacement side effects and I wouldn't really expect you to have fewer with over-replacement with T4/T3 plus other unknown hormones versus just T4/T3 so I am not hopeful that it would help a whole lot anyway. (sorry to be a wet blanket)
If the main bad side effect you are having is palpitations, have you considered taking a beta blocker to suppress them and seeing if that helps? (It's a bummer to take a med to treat the side effects of another med, but you do want to try pretty hard to get your TSH suppressed to reduce your chance of recurrence). Also, are there any other meds on your med list that might be contributing to your palpitations as palpitations are a pretty common side effect of lots of meds? Also, have you tried increasing the T3/T4 really slowly like (just making these numbers up, no idea what your real dose is) 100 alternating with 125 for a week or two then 125 daily for a week or two then 125 alternating with 150 for a week. Does it come in an elixir so you could take 100 for 7 days then 110 for 7 days then 120, then ... ? Do you know what rhythm you are in when you get the palpitations? If it's sinus tack, you might think differently about it than if it were a fib, for example.
Those are all the thoughts I have right now. Except that I hope you are successful at finding a way you can tolerate pushing your dose up.