According to some notes I have in my lab records, normal TSH range is 0.46 to 4.98.

I apparently have a flaky system and the Doc and I go through a lot of blood work every six months or so trying to get it right. I expect that routine won't change much as the long-term effects of XRT take hold. I have been as low as zero and as high as 88.5 in a relatively short time and must say that I couldn't tell the difference.

OTOH, a friend of mine managed to poison his thyroid by breathing in some gasses while grinding on a phosphor-bronze propeller and he was going into terrible moods and snapping at everyone until it was diagnosed properly -- They killed the glands with some poison beads (while someone in a pointy hat stirred a cauldron in the smoky background) and then put him on a steady thyroid hormone -- He's a nice guy again!

Pete,
the short term variability 0-88.5 seems strange. There is the possibility that the lab screws up the TSH assay, Although it is not likely that they are continually doing it.


M

I called for appointments but I am having trouble getting appointments as they are asking if this is a surgery issue. I already have follow up appointments with RO and surgeon towards the end of the year, but I wanted to see them sooner about this.
The RO office will get back to me. Hopefully I can get an appointment there.


The problem is that I don't have insurance (makes it difficult to see an internist outside the CCC; CCC does not have internists) and the CCC is helping me financially.

Both the RO and the surgeon (primary oncologist) are avoiding an appointment. RO says TSH is normal and to go see an internist.

Is this typical? How would I go about being my own advocate and getting someone there to help me?

For many years prior to IMRT Radiation and Cysplatin Chemotherapy I would go to the gym every morning before work at 5:30 a.m. Even did the World Championship Ironman Triathlon in Kona, Hawaii in 1996. I was in great shape and could function well on 5-6 hours of sleep a night. Once every week I might sleep 8 hours. Now I am 16 months post treatment and I'm sleeping a minimum of 9 hours every night and many nights I sleep 10,11 or 12. I also get very fatigued in the late afternoon and even though I am back going to the gym at 7;30 or 8;00 a.m., I can't do what I could do before even though I do more then most 55 year old men can do. I just keep hoping things will get better each month as I see very very very slow, but steady improvement. So I'm fustrated but still determined to get better if it can be done! Hope your situation improves.

Steven,

Are you on thyroid pills?

Has your TSH levels been checked lately?

My thyroid went south appx 5 months post Tx and I'm on a daily thyroid pill. My sleep patterns are the same as they were pre Tx though my energy and biking strength (not stamina) are a tad less but that may be due to an extra 2 years in the age column.

I never liked running so I never entered any Tri but man I admire you for competing in the Ironman. I would be impressed with myself if I could just complete the swimming and biking part much less running a marathon after all that.

Hi David, They have checked my thyroid 2 times, at my request, and and was told that my test results were normal, whatever that really means. Last time I asked about a specific test one of my Doctors said "how about leaving the Doctoring to me?". I said I was going to do the Ironman again after I completed treatment but not sure thats in the cards at this point in time. I'm thinking about taking up cage fighting instead;-))). I figure I could take out some of my aggression and anger with regard to all these wonderful side effects I've encountered. I read the side effects of Cisplatin and see that I was blessed with each and every one of them))). So right now I'm lifting weights and riding a stationary bike 1-2 hours a day. I'm actually still not ready to get my Bike out of mothballs and hit the streets again;-(((. Maybe next year? Thanks for the kind words. Steven

I finished Tx Aug 28th, 2006 and rode my bike for the first time in December, 2006. Because of my dry mouth, I tried a Camelbak but couldn't figure out how I could ride aggressively with a water tube hanging out of my mouth!! Tax season took me away until May 2007 and within a couple of months I was back to pre Tx form. I realize it's difficult getting back on the bike but I'm sure you need to try and maybe your energy will get a much needed boost. I rode with much more conviction as if I needed to prove to this cancer that it hadn't taken my hobby away.

I don't know exactly what happened, but somehow an appointment was made. It's for blood platelet, basic metabolic panel, cbc platelet, free t4, tsh3 (sic. I don't know if this is T3).

I asked if it's possible to do a complete hormone panel and vitamin + l-carnitine deficiency. Someone is going to call me back and let me know.

I tried l-carnitine supplements 2g a day. Don't see a difference so far.

Is anyone having chest tightness/discomfort after exercise?
The internist listened to the heart and said there is nothing wrong with the heart and lungs except they are probably deconditioned. Others tell me that chest discomfort could indicate heart problems and you cannot tell it's ok just by listening with a stethoscope.

I would make an appt with a heart specialist and get tested.