Long time no write! Have a question about a problem...

Bigfuzzydoug
Bigfuzzydoug Member Posts: 154
in Head and Neck Cancer #1
Hey gang!

BFD here and while I haven't posted in a few months, I guess that's kind of a good thing. My "success story" continues. In remission and NED for 20 months now, approaching the 2-year mark, and that's good. Fibrosis down around 90%, L'Hermittes gone, range of motion back to normal thanks to my great chiropractor. Can eat and drink most anything again. All in all, I'm doing pretty well. So what's the problem?

Please don't be insulted with such a minor "problem". It's NOTHING compared to what many of you are going through. I've been there and done that, so I'm praying that all of you in treatment now, will be seeking this type of advice later!...

After losing all the weight during the radiation treatments, I put it all back on and THEN some! My thyroid got fried and my TSH was 28.9 at it's worst. Cholesterol numbers were through the roof and testosterone bottomed out. I was literally a walking zombie. So now I'm on 200mcg of Synthroid, cholesterol meds and Testo-Pels testoerone replacement therapy. Just got back my latest round of blood work numbers and they're NOT GOOD...

total cholesterol: 159 target <200
triglycerides: 132 target <150
LDL 76 target <100 (bad cholesterol)
HDL 57 target >60 (good cholesterol)
vitamin D 32 target 40-50
TSH 2.8 target 1.5-3.5
T4 9.0 target 4.5-12.0
free T4 not done
T3 not done
free T3 not done
total testosterone 657 target 250-836
free testosterone % 24.3 target 6.8-22.5

Why are they not good? Because they all look GREAT! Right in the "butter zone". So what's wrong with that?

I'm 245lbs with a 41" waist! I've been back into pre-triathlon base training now for the past 5 months. Swimming, biking, running and weightlifting. 9-15 hours per week. Five months working at it along with an all new, lower-calorie, lower-carb, ZERO processed food diet. Basically the "caveman diet". I couldn't be eating any healthier. Mostly fresh fruits & veggies, chicken, turkey and fish. Lots of fish. Very little red meat and I haven't seen the inside of a fast food joint in over 6 months. The cholesterol numbers reflect that. At my worst, my cholesterol was 281 and my triglycerides 463!

So with all of that exercise and healthy eating, you would think I would be seeing a difference. But the only thing I see is increased muscle mass from the weightlifting in my chest, shoulders and arms. Easily 20 pounds of muscle (surprising since I'm not really eating enough to be putting on that much muscle). But I haven't lost a frickin' ounce off of my waist. 41 inches?! Trying to run at 245 is brutal and painful. My shins and knees can easily tell the difference a meer 5 pounds makes. I don't want to be a "football player".

Besides getting new T3 and free T3 numbers done. Does anyone have any thoughts? Get a "metabolic test"? Go gluten free? Think it's diet or still a hormonal imbalance of some kind?

Like I said, a MINOR problem considering my posts in the past. But this joint is a treasure-trove of knowledge, so I figured what the heck!

Thanks guys!
I'll check some posts to see how all of you "regulars" are doing.

Comments

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #2
    Overweight Challenge?
    I share your overweight challenge. And I agree that for the most part, it is not as serious as not being able to maintain weight. Nevertheless...

    At least with me, my weight is directly linked to what I eat. A carb reduction produces a weight reduction. It sounds like this relationship does not hold for you. Something is wrong when weight is not related to calorie intake. How about that for a great insight! Am I a genius or what?

    Now, water retention can be a major contributor to weight in some patients. So I would suggest that you ask about a kidney/electrolyte screen. Rick.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Nothing That You Don't Already Know
    Nothing to add....

    Calorie intake and sweat from working out... Well other than you are getting older ...LOL.

    I'd presume that you've been doing it enough to know that it takes awhile for your body to react and get into that losing weight mode...once there it's usually easy to maintain.

    Start slipping and goig the other direction is easy... a few days to turn you back to the gaining mode, and several weeks to reverse it back to the losing mode...at least that's how it's been for me after I hit the big 50.

    I'm sure you'll figure it out, just might take some time since regardless of how you feel or think your body is doing... In reality it's still rebuilding itself from the damage sustained from treatment.

    Glad you are back to doing what you love to do....

    Best,
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    the problem is
    that there is no easy solution to this. No matter what your numbers show, metabolically speaking, replacement thyroid hormone will never be as good as the original stuff. There is no lab test for this, your TSH is now optimal. To get more weight off, you are going to have to grit your teeth and further decrease caloric intake. That, or you could go the route Ive taken. More rads and surgery, then you cant take in enough to keep your weight up. Just a little head and nexk humor there.

    Glad to hear youre doing well.

    Pat
  • katenorwood
    katenorwood Member Posts: 1,912
    #5
    Synthetic thyroid replacement and weight
    Hey there !
    I have been dealing with this issue for over 30 yrs. I had graves disease back in the day. And now am considered hypo because I have no gland. I was told by tons of proffessionals....our thermostat has been lowered. We have to be conscious of calorie intake, and yet balance that with carbs that we need. I would check with a good dietician that understands everything you've been through. It will get better, and they will monitor your counts forever. Don't be surprised as you loose, the pill will get smaller also. Wonderful to hear your doing so terrific ! Katie
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #6
    hi or low
    some of us are hi efficent models and some are low efficent model. my model is low no mater what, no matter what i do it does not take much for my body to go so it does not burn it off.

    hi efficent models are skinny and can eat three times more than us and not gain the weight of piece of popcorn

    we are who we are, enjoy the life

    john
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    #7
    Thanks gang!
    I have some deeper metabolic testing on Monday as well as getting some deeper T3 and free T3 testing as well.

    I think you all may be right in that my body has just changed and I need a lot less calories to keep going. I wouldn't think I could go any lower though. I'm often slightly hungry and eat smaller meals and snacks throughout the day (fresh fruits, nuts, almonds, etc. at my desk). I'm between 1,700-2,000 daily and with my size and workout regime... It would seem weird to eat the same quantity as my 11-yr-old daughter, but if that's what it takes...

    We'll see the results from next week. Thanks all!
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #8
    Bigfuzzydoug said:

    Thanks gang!
    I have some deeper metabolic testing on Monday as well as getting some deeper T3 and free T3 testing as well.

    I think you all may be right in that my body has just changed and I need a lot less calories to keep going. I wouldn't think I could go any lower though. I'm often slightly hungry and eat smaller meals and snacks throughout the day (fresh fruits, nuts, almonds, etc. at my desk). I'm between 1,700-2,000 daily and with my size and workout regime... It would seem weird to eat the same quantity as my 11-yr-old daughter, but if that's what it takes...

    We'll see the results from next week. Thanks all!

    This might help
    OK I am attacking this from the perspective of someone who has lost 103 pounds. After I had lost my first 50 it became very difficult to lose weight. I worked out harder, danced more and ate less. My trainer told me I wasn't losing weight because I wasn't eating enough calories. I was eating 1200 at the time. He said with my lifestyle my body was worried there wouldn't be enough. He kept suggesting 1500-1800 for me and I kicked and screamed the whole way. Well after another month of not losing any weight I thought oh well here it goes. Went to averaging 1700 calories a day and the weight just started melting away. He was right even though the logic seemed weird. I don't know if this will be helpful to you or not.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Bigfuzzydoug said:

    Thanks gang!
    I have some deeper metabolic testing on Monday as well as getting some deeper T3 and free T3 testing as well.

    I think you all may be right in that my body has just changed and I need a lot less calories to keep going. I wouldn't think I could go any lower though. I'm often slightly hungry and eat smaller meals and snacks throughout the day (fresh fruits, nuts, almonds, etc. at my desk). I'm between 1,700-2,000 daily and with my size and workout regime... It would seem weird to eat the same quantity as my 11-yr-old daughter, but if that's what it takes...

    We'll see the results from next week. Thanks all!

    Justin Bieber
    If you start having a craving for a Justin Bieber fix...you definitely need to get off of your daughters diet plan...
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #10
    Skiffin16 said:

    Justin Bieber
    If you start having a craving for a Justin Bieber fix...you definitely need to get off of your daughters diet plan...

    now that was funny
    I dont care who you are.
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #11
    new normal
    Big fuzzydoug,

    No matter how good I feel, I definitely do not feel as good as before treatments. Things are different; my body is still coming to terms with the “new normal”. Even though positive changes and forward progress can be made physically and mentally, I think you are on an up hill slog against the side effects of treatment. I commend you on your determination and wish you the best in all your physical endeavors. For sure, never give up.

    Best,

    Matt
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    #12
    longtermsurvivor said:

    now that was funny
    I dont care who you are.

    Justin Bieber?! Nooooooooooooooooooooo!
    1.) My duaghter doesn't listen to Justin Bieber. She HATES anything and everything "pop culture". She won't watch High School Musical or listen to any of that top-40 teeny-bopper movie crap. After playing Guitar Hero World Tour and getting into some classics, I noticed one day a whole bunch of CD's missing from the rack. There she was in her room, on her laptop, with Led Zepplin coming out of her stereo. 11 years old and what did she take? Zepplin, Pat Benatar, Beatles, Jimmi Hendrix, Billy Joel, Rolling Stones, Pink Floyd, White Stripes, and of all things... Peter Paul & Mary!

    2.) I have a living will with advanced directives that specifically state if I ever get a craving to listen to Justin Bieber, pull the plug on me. If I'm not on life-support, than just put two .45s in my head!

    3.) Nice Larry The Cable Guy reference there.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    Bigfuzzydoug said:

    Justin Bieber?! Nooooooooooooooooooooo!
    1.) My duaghter doesn't listen to Justin Bieber. She HATES anything and everything "pop culture". She won't watch High School Musical or listen to any of that top-40 teeny-bopper movie crap. After playing Guitar Hero World Tour and getting into some classics, I noticed one day a whole bunch of CD's missing from the rack. There she was in her room, on her laptop, with Led Zepplin coming out of her stereo. 11 years old and what did she take? Zepplin, Pat Benatar, Beatles, Jimmi Hendrix, Billy Joel, Rolling Stones, Pink Floyd, White Stripes, and of all things... Peter Paul & Mary!

    2.) I have a living will with advanced directives that specifically state if I ever get a craving to listen to Justin Bieber, pull the plug on me. If I'm not on life-support, than just put two .45s in my head!

    3.) Nice Larry The Cable Guy reference there.

    LOL...
    Hey, at least we got your metabolism sped up for a few minutes... That should be worth a calorie or two...

    Just trying to help a brother out...

    JG
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    #14
    And the answer is....
    *ding* *ding* *ding* *ding*

    'VivianLee5689' wins the prize!

    I just got back from some pretty extensive metabolic testing. It would seem that my body is in "starvation mode". I'm not eating enough! My base rate is actually 2,415 kcal/day and with the level of exercise I'm doing, my expenditure rate is 2,950 kcal/day.

    So I should be targeting 2,500-2,700 to be losing fat. Right now I've been consuming about 1,800-2,000 per day and that's not enough. My body isn't burning any fat because it thinks there's not enough food intake to survive.

    Gonna try to boost it by 500-700 kcal a day with healthy stuff, keep up the training and we'll see if my metabolism responds.

    Thanks all!
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #15
    Bigfuzzydoug said:

    And the answer is....
    *ding* *ding* *ding* *ding*

    'VivianLee5689' wins the prize!

    I just got back from some pretty extensive metabolic testing. It would seem that my body is in "starvation mode". I'm not eating enough! My base rate is actually 2,415 kcal/day and with the level of exercise I'm doing, my expenditure rate is 2,950 kcal/day.

    So I should be targeting 2,500-2,700 to be losing fat. Right now I've been consuming about 1,800-2,000 per day and that's not enough. My body isn't burning any fat because it thinks there's not enough food intake to survive.

    Gonna try to boost it by 500-700 kcal a day with healthy stuff, keep up the training and we'll see if my metabolism responds.

    Thanks all!

    Great news
    Well I am glad I got something right. I have been so scatter brained the last month and a half. I hate that I have no short term memory right now. I am so used to remembering everything. I am glad you know what the problem is. Now get to eating. Lol
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    Bigfuzzydoug said:

    And the answer is....
    *ding* *ding* *ding* *ding*

    'VivianLee5689' wins the prize!

    I just got back from some pretty extensive metabolic testing. It would seem that my body is in "starvation mode". I'm not eating enough! My base rate is actually 2,415 kcal/day and with the level of exercise I'm doing, my expenditure rate is 2,950 kcal/day.

    So I should be targeting 2,500-2,700 to be losing fat. Right now I've been consuming about 1,800-2,000 per day and that's not enough. My body isn't burning any fat because it thinks there's not enough food intake to survive.

    Gonna try to boost it by 500-700 kcal a day with healthy stuff, keep up the training and we'll see if my metabolism responds.

    Thanks all!

    Cool Deal
    I have heard of that before, but would have never thought about applying it..., LOL. But then again, my body hasn't been in startvation mode since rads, LOL...

    Glad you found a solution to try.

    JG
  • staceya
    staceya Member Posts: 720
    #17
    Skiffin16 said:

    Cool Deal
    I have heard of that before, but would have never thought about applying it..., LOL. But then again, my body hasn't been in startvation mode since rads, LOL...

    Glad you found a solution to try.

    JG

    Please keep us updated if
    Please keep us updated if the increased calories did the trick.
    Glad to hear from you and that things are going fairly well.
    Stacey

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