Thyroid Cancer Survivors?

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allie491
allie491 Posts: 91 Member
Hi All!

I am new to this group! I had my thyroid removed in 1999, due to a cancerous nodule. I have been feeling pretty good recently and have been successful with my weight loss.

My concern - I am under thyroid suppression therapy, where my TSH is around .1, so technically I am synthetically hyperthyroid all the time. I feel like this causes me to be extremely hungry at times. I am set at 1610 calories a day and I keep thinking of increasing my cals, but am afraid I won't continue to lose.

Anyone else feeling this way? Do people who are hyperthyroid need a higher caloric intake? Up until a year ago, I had a hard time losing weight...so it really hasn't been easy.

Thanks for the help!

Replies

  • islandmonkey
    islandmonkey Posts: 546 Member
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    It's good that they're keeping your TSH suppressed - cancer cells will snap up any little bit of TSH they find, which is why they keep it suppressed.

    Now, just because your TSH is low that doesn't (necessarily) mean you are hyperthyroid. Often people on thyroid replacement can have a low/lower TSH, because TSH responds differently to external thyroid hormone (meds) than to hormones from your actual thyroid.

    Does your doctor only test TSH? I would ask to have your free T3 and free T4 tested.

    What meds are you currently on? If you're on a synthetic T4-only med like Synthroid or Levothyroxine, your free T4 could be high but your free T3 could still be low. Your comment that you couldn't lose weight until a year ago makes me think you're on synthetic T4...

    So yes, people with hyperthyroid do need a higher caloric intake....but I would doubt that you're actually hyperthyroid....
  • allie491
    allie491 Posts: 91 Member
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    It's good that they're keeping your TSH suppressed - cancer cells will snap up any little bit of TSH they find, which is why they keep it suppressed.

    Now, just because your TSH is low that doesn't (necessarily) mean you are hyperthyroid. Often people on thyroid replacement can have a low/lower TSH, because TSH responds differently to external thyroid hormone (meds) than to hormones from your actual thyroid.

    Does your doctor only test TSH? I would ask to have your free T3 and free T4 tested.

    What meds are you currently on? If you're on a synthetic T4-only med like Synthroid or Levothyroxine, your free T4 could be high but your free T3 could still be low. Your comment that you couldn't lose weight until a year ago makes me think you're on synthetic T4...

    So yes, people with hyperthyroid do need a higher caloric intake....but I would doubt that you're actually hyperthyroid....

    My Dr. tests all three, but honestly, the only one she is ever really concerned about or talks to me about is TSH. I'm on Synthroid 175 mcgs per day. Interesting, I guess sometimes I feel like I'm hyperthyroid, I can get so hungry that my stomach hurts, sometimes can feel super jittery if I drink too much coffee or something, although this does not happen all the time. Thanks for your input :)
  • islandmonkey
    islandmonkey Posts: 546 Member
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    My Dr. tests all three, but honestly, the only one she is ever really concerned about or talks to me about is TSH. I'm on Synthroid 175 mcgs per day. Interesting, I guess sometimes I feel like I'm hyperthyroid, I can get so hungry that my stomach hurts, sometimes can feel super jittery if I drink too much coffee or something, although this does not happen all the time. Thanks for your input :)

    I'm not surprised on the jittery! To me that's classic "overmedicated with T4-only meds". Do you have the latest results from your free T3 and free T4?

    Ideally your free T3 should be in the top of the range your lab uses, and your free T4 should be about mid-range. If you're in the US that means your free T3 should be about 3.5+ and your free T4 should be around 1.2-1.4. If your free T3 is on the low end of the range, and your free T4 is (I'm guessing) at the very top of the range, it means your body isn't doing a good job of converting the synthetic T4 into the much-needed T3.

    And ya, it's pretty common for most endos to just look at TSH, unfortunately. I'm convinced that if any of them actually had thyroid issues, they'd change their tune pretty quickly...

    I was hyperthyroid for 20 years on and off, and "overmedicated with T4-only meds" for about a month after my thyroidecomy. And I can tell you they are NOTHING alike. I think the jitters were actually worse with T4 meds; with hyper there were the shakes but the jitters with T4-only felt....almost like I was shaking with cold? Like teeth-chattering kind of jitters.


    I honestly think that anyone with a thyroidectomy should NOT be on T4-only meds. If you check those test results see if your endo will be open to reducing your T4-med while adding a synthetic T3 like cytomel. Ideally though you'd find a doctor who will prescribe you Nature Thyroid or Armour, which are combo meds containing both T3 and T4.


    (FYI: had a thyroidectomy for graves in Oct 2012; found "incidental" cancer)
  • jbbrannon
    jbbrannon Posts: 167 Member
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    I had my thyroid removed in November, 2006 due to cancer of the thyroid. I had my surgery done at Emory University Hospital in Atlanta. I am cancer free and take 100 MG of Levothyroxine (Synthyroid generic) every day. I have been on a diet since 2012 and have lost about 20 pounds but now I am having trouble losing pounds now. I am a 66 year old female.
  • amandaaaaaas
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    Hi allie491:

    Another thyca 'survivor' here. Completion thyroidectomy was 1/10, age 30 My first year after was hard adjusting to levothyroxine (jitteriness, brain fog, low energy, heart palpitations, etc.). That's all steadied and my TSH is safely suppressed on 175mcg levothyroxine.

    Think I probably need to explore T3 treatment, but my endo is, let's say, lacking interest... But seems like it really helps with QoL. Depression has been an issue since thyca, which I'm managing ok mostly with exercise (and well, cancer IS depressing, ha!). But weight? Whoa. Compared to some others, I'm lucky, relatively speaking, but I'm almost 34 and while my 20s saw me effortlessly stay in the 120-130 lb range, I suffer to make any dent in my current 150 lbs. And yes, I'm always hungry! But trying to control it w/ smaller meals, more frequently, and being mindful of Glycemic Index (e.g. GI, which helps! see: http://whfoods.org/genpage.php?tname=faq&dbid=32#estimate)

    I'm here to share stories, provide support, do whatever, so feel free to 'add' me if you like. I don't know many thyca patients and our (metabolic) situation is, let's say...unique.

    Stay strong!

    Amanda
  • hedgehogia
    hedgehogia Posts: 40 Member
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    I'm currently undergoing tx. I had a TT 10 days ago and will prob have RAI in 6 weeks or so. My synthroid is upped to 175mcgs for now, but I suspect I will have to go hypo and low iodine pre-RAI. Not looking forward to missing my kids during my radioactive phase or messing with my thyroid hormones.
  • allie491
    allie491 Posts: 91 Member
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    Hi allie491:

    Another thyca 'survivor' here. Completion thyroidectomy was 1/10, age 30 My first year after was hard adjusting to levothyroxine (jitteriness, brain fog, low energy, heart palpitations, etc.). That's all steadied and my TSH is safely suppressed on 175mcg levothyroxine.

    Think I probably need to explore T3 treatment, but my endo is, let's say, lacking interest... But seems like it really helps with QoL. Depression has been an issue since thyca, which I'm managing ok mostly with exercise (and well, cancer IS depressing, ha!). But weight? Whoa. Compared to some others, I'm lucky, relatively speaking, but I'm almost 34 and while my 20s saw me effortlessly stay in the 120-130 lb range, I suffer to make any dent in my current 150 lbs. And yes, I'm always hungry! But trying to control it w/ smaller meals, more frequently, and being mindful of Glycemic Index (e.g. GI, which helps! see: http://whfoods.org/genpage.php?tname=faq&dbid=32#estimate)

    I'm here to share stories, provide support, do whatever, so feel free to 'add' me if you like. I don't know many thyca patients and our (metabolic) situation is, let's say...unique.

    Stay strong!

    Amanda

    Hi!

    Yes, out situation is very unique! and hard for some to understand.

    I am doing small meals as well, I eat every two to three hours. I am still VERY hungry. I increased my cals to 1750, helps a bit. and I am still losing. I suspect my thyroid levels are off right now, because I have lost 17 lbs since my last lab 6 months ago. The problem is, I don't have insurance right now....so, I'm not sure what to do. I have been having minor chest pains daily, nothing dramatic, but I think my synthroid needs to be lowered. I would love to try Armour...
  • myalienbody
    myalienbody Posts: 15 Member
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    My Dr. tests all three, but honestly, the only one she is ever really concerned about or talks to me about is TSH. I'm on Synthroid 175 mcgs per day. Interesting, I guess sometimes I feel like I'm hyperthyroid, I can get so hungry that my stomach hurts, sometimes can feel super jittery if I drink too much coffee or something, although this does not happen all the time. Thanks for your input :)

    I'm not surprised on the jittery! To me that's classic "overmedicated with T4-only meds". Do you have the latest results from your free T3 and free T4?

    Ideally your free T3 should be in the top of the range your lab uses, and your free T4 should be about mid-range. If you're in the US that means your free T3 should be about 3.5+ and your free T4 should be around 1.2-1.4. If your free T3 is on the low end of the range, and your free T4 is (I'm guessing) at the very top of the range, it means your body isn't doing a good job of converting the synthetic T4 into the much-needed T3.

    And ya, it's pretty common for most endos to just look at TSH, unfortunately. I'm convinced that if any of them actually had thyroid issues, they'd change their tune pretty quickly...

    I was hyperthyroid for 20 years on and off, and "overmedicated with T4-only meds" for about a month after my thyroidecomy. And I can tell you they are NOTHING alike. I think the jitters were actually worse with T4 meds; with hyper there were the shakes but the jitters with T4-only felt....almost like I was shaking with cold? Like teeth-chattering kind of jitters.


    I honestly think that anyone with a thyroidectomy should NOT be on T4-only meds. If you check those test results see if your endo will be open to reducing your T4-med while adding a synthetic T3 like cytomel. Ideally though you'd find a doctor who will prescribe you Nature Thyroid or Armour, which are combo meds containing both T3 and T4.


    (FYI: had a thyroidectomy for graves in Oct 2012; found "incidental" cancer)

    After seeing the T3/T4 discussion a lot, I asked my endo and this was her response:

    "Thanks for your question. Yes, your thyroid replacement is T4 only.
    In general most Endocrinologists do not recommend taking Armour or other preparations of thyroid replacement. It is not necessary to take T3 in a pill form since your body converts the T4 you take to T3.
    In treating thyroid cancer, we have the extra concern over prevention of recurrence of the thyroid cancer. Studies show that Levothyroxine reduces the risk of cancer recurrence. Because of that, I am uncomfortable with considering Armour in you. Another problem with Armour is that is not as consistent at keeping the TSH stable, which is an important consideration for you.
    There is a very detailed "booklet" on the American Thyroid Association Website with a section on animal thyroid. ATA Hypothyroidism web booklet"
    So, in summary, I wouldn't recommend changing to Armour.
    Please let me know if you have any questions or concerns"

    *****

    Fortunately my doctor explained it rather than just brush me off. I think some doctors don't bother to explain, but I really like my doc. I don't have trouble converting the T4 to T3. Once my medication stabilized and I cut out gluten, I felt like a different person. I don't agree that everyone with a thyroidectomy to treat cancer should be on additional T3, specifically because of the reasons my doc pointed out. Each case is individual and T3 may be beneficial, but I don't think it is a good choice for everyone.
  • islandmonkey
    islandmonkey Posts: 546 Member
    Options
    After seeing the T3/T4 discussion a lot, I asked my endo and this was her response:

    "Thanks for your question. Yes, your thyroid replacement is T4 only.
    In general most Endocrinologists do not recommend taking Armour or other preparations of thyroid replacement. It is not necessary to take T3 in a pill form since your body converts the T4 you take to T3.
    In treating thyroid cancer, we have the extra concern over prevention of recurrence of the thyroid cancer. Studies show that Levothyroxine reduces the risk of cancer recurrence. Because of that, I am uncomfortable with considering Armour in you. Another problem with Armour is that is not as consistent at keeping the TSH stable, which is an important consideration for you.
    There is a very detailed "booklet" on the American Thyroid Association Website with a section on animal thyroid. ATA Hypothyroidism web booklet"
    So, in summary, I wouldn't recommend changing to Armour.
    Please let me know if you have any questions or concerns"

    *****

    Fortunately my doctor explained it rather than just brush me off. I think some doctors don't bother to explain, but I really like my doc. I don't have trouble converting the T4 to T3. Once my medication stabilized and I cut out gluten, I felt like a different person. I don't agree that everyone with a thyroidectomy to treat cancer should be on additional T3, specifically because of the reasons my doc pointed out. Each case is individual and T3 may be beneficial, but I don't think it is a good choice for everyone.


    Did she confirm that YOUR body is effectively converting the T4 into T3 by looking at your free T3 and free T4 results, and by testing your B12, iron, ferritin, selenium, and zinc levels? Did she discuss that the molecular structure of synthroid/levothyroxine T4 is not bioidentical to your body's natural T4, and therefore that it's a completely different conversion process?

    I was referring to all thyroidectomies, not just to ones for cancer treatment.

    Did she discuss that the cancer prevention is about suppression of your TSH levels, and that dessicated meds like Armour are just as effective at TSH suppression? Her comment about Armour not keeping TSH stable is INCORRECT, and is based on the "big pharma" companies promoting their synthetic meds. The American Thyroid Association also receives a lot of money in funding from the manufacturers of Synthroid.

    Overall it's up to you, and if you feel good. My discussion points were based on you mentioning symptoms that implied that you don't feel good. I feel that your endo's response is not accurate, or at least is selectively missing a lot of info. But again, all I can do is put forward other potential information for you to consider.

    I would just encourage you to keep an eye on your symptoms, and if you have any hypo symptoms even though your TSH is low and your free T4 is high, that you revisit the conversation or consider a 2nd opinion.
  • myalienbody
    myalienbody Posts: 15 Member
    Options
    After seeing the T3/T4 discussion a lot, I asked my endo and this was her response:

    "Thanks for your question. Yes, your thyroid replacement is T4 only.
    In general most Endocrinologists do not recommend taking Armour or other preparations of thyroid replacement. It is not necessary to take T3 in a pill form since your body converts the T4 you take to T3.
    In treating thyroid cancer, we have the extra concern over prevention of recurrence of the thyroid cancer. Studies show that Levothyroxine reduces the risk of cancer recurrence. Because of that, I am uncomfortable with considering Armour in you. Another problem with Armour is that is not as consistent at keeping the TSH stable, which is an important consideration for you.
    There is a very detailed "booklet" on the American Thyroid Association Website with a section on animal thyroid. ATA Hypothyroidism web booklet"
    So, in summary, I wouldn't recommend changing to Armour.
    Please let me know if you have any questions or concerns"

    *****

    Fortunately my doctor explained it rather than just brush me off. I think some doctors don't bother to explain, but I really like my doc. I don't have trouble converting the T4 to T3. Once my medication stabilized and I cut out gluten, I felt like a different person. I don't agree that everyone with a thyroidectomy to treat cancer should be on additional T3, specifically because of the reasons my doc pointed out. Each case is individual and T3 may be beneficial, but I don't think it is a good choice for everyone.


    Did she confirm that YOUR body is effectively converting the T4 into T3 by looking at your free T3 and free T4 results, and by testing your B12, iron, ferritin, selenium, and zinc levels? Did she discuss that the molecular structure of synthroid/levothyroxine T4 is not bioidentical to your body's natural T4, and therefore that it's a completely different conversion process?

    I was referring to all thyroidectomies, not just to ones for cancer treatment.

    Did she discuss that the cancer prevention is about suppression of your TSH levels, and that dessicated meds like Armour are just as effective at TSH suppression? Her comment about Armour not keeping TSH stable is INCORRECT, and is based on the "big pharma" companies promoting their synthetic meds. The American Thyroid Association also receives a lot of money in funding from the manufacturers of Synthroid.

    Overall it's up to you, and if you feel good. My discussion points were based on you mentioning symptoms that implied that you don't feel good. I feel that your endo's response is not accurate, or at least is selectively missing a lot of info. But again, all I can do is put forward other potential information for you to consider.

    I would just encourage you to keep an eye on your symptoms, and if you have any hypo symptoms even though your TSH is low and your free T4 is high, that you revisit the conversation or consider a 2nd opinion.
    [/quote

    No, she did not go into great detail, thank you for adding in all you've learned. I also don't take Synthroid (perhaps I have a doctor not in cahoots with the drug companies?), nor did I say I wasn't feeling o.k. That was someone else. Before I went gluten free I was NOT feeling great. All that changed after I stopped eating wheat and gluten in general. So, I'll make my own blanket statement that we should all give up mutant wheat! (I might be biased after reading Wheat Belly and feeling SO much better).

    I stand firm in saying that additional T3 *may* not be right for everyone. I'm not expecting people to abandon the idea of talking to their doctors based on what my doctor said, no they certainly should explore it. It's merely opposing info to help people ask MORE questions of their doctors to find what is right for them. I figured more info was better...was I wrong?
  • islandmonkey
    islandmonkey Posts: 546 Member
    Options
    Did she confirm that YOUR body is effectively converting the T4 into T3 by looking at your free T3 and free T4 results, and by testing your B12, iron, ferritin, selenium, and zinc levels? Did she discuss that the molecular structure of synthroid/levothyroxine T4 is not bioidentical to your body's natural T4, and therefore that it's a completely different conversion process?

    I was referring to all thyroidectomies, not just to ones for cancer treatment.

    Did she discuss that the cancer prevention is about suppression of your TSH levels, and that dessicated meds like Armour are just as effective at TSH suppression? Her comment about Armour not keeping TSH stable is INCORRECT, and is based on the "big pharma" companies promoting their synthetic meds. The American Thyroid Association also receives a lot of money in funding from the manufacturers of Synthroid.

    Overall it's up to you, and if you feel good. My discussion points were based on you mentioning symptoms that implied that you don't feel good. I feel that your endo's response is not accurate, or at least is selectively missing a lot of info. But again, all I can do is put forward other potential information for you to consider.

    I would just encourage you to keep an eye on your symptoms, and if you have any hypo symptoms even though your TSH is low and your free T4 is high, that you revisit the conversation or consider a 2nd opinion.

    No, she did not go into great detail, thank you for adding in all you've learned. I also don't take Synthroid (perhaps I have a doctor not in cahoots with the drug companies?), nor did I say I wasn't feeling o.k. That was someone else. Before I went gluten free I was NOT feeling great. All that changed after I stopped eating wheat and gluten in general. So, I'll make my own blanket statement that we should all give up mutant wheat! (I might be biased after reading Wheat Belly and feeling SO much better).

    I stand firm in saying that additional T3 *may* not be right for everyone. I'm not expecting people to abandon the idea of talking to their doctors based on what my doctor said, no they certainly should explore it. It's merely opposing info to help people ask MORE questions of their doctors to find what is right for them. I figured more info was better...was I wrong?

    Ah ok, I flip through a LOT of posts so obviously got it mixed up. I still stand by my comment that if one is on a T4-only med (synthroid, levothyroxine etc) you should be very aware of symptoms and still get free T3 checked, to make sure your body is converting appropriately. I think I've just seen SO many people unhappy and it's clear why, but their doctors are T3-resistant.

    And absolutely agree that asking for more info from doctors is always the right path! I firmly believe you should question everything they (and that others, like me!) say; whether about thyroid or other health things.

    While I don't agree with everything in wheat belly, I do agree that most people feel better after removing wheat from their diet! Especially people with thyroid issues. Are you positive for Hashi's anitbodies? If so that would definitely explain why you feel so much better (though I think people usually feel better anyway).
  • myalienbody
    myalienbody Posts: 15 Member
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    Did she confirm that YOUR body is effectively converting the T4 into T3 by looking at your free T3 and free T4 results, and by testing your B12, iron, ferritin, selenium, and zinc levels? Did she discuss that the molecular structure of synthroid/levothyroxine T4 is not bioidentical to your body's natural T4, and therefore that it's a completely different conversion process?

    I was referring to all thyroidectomies, not just to ones for cancer treatment.

    Did she discuss that the cancer prevention is about suppression of your TSH levels, and that dessicated meds like Armour are just as effective at TSH suppression? Her comment about Armour not keeping TSH stable is INCORRECT, and is based on the "big pharma" companies promoting their synthetic meds. The American Thyroid Association also receives a lot of money in funding from the manufacturers of Synthroid.

    Overall it's up to you, and if you feel good. My discussion points were based on you mentioning symptoms that implied that you don't feel good. I feel that your endo's response is not accurate, or at least is selectively missing a lot of info. But again, all I can do is put forward other potential information for you to consider.

    I would just encourage you to keep an eye on your symptoms, and if you have any hypo symptoms even though your TSH is low and your free T4 is high, that you revisit the conversation or consider a 2nd opinion.

    No, she did not go into great detail, thank you for adding in all you've learned. I also don't take Synthroid (perhaps I have a doctor not in cahoots with the drug companies?), nor did I say I wasn't feeling o.k. That was someone else. Before I went gluten free I was NOT feeling great. All that changed after I stopped eating wheat and gluten in general. So, I'll make my own blanket statement that we should all give up mutant wheat! (I might be biased after reading Wheat Belly and feeling SO much better).

    I stand firm in saying that additional T3 *may* not be right for everyone. I'm not expecting people to abandon the idea of talking to their doctors based on what my doctor said, no they certainly should explore it. It's merely opposing info to help people ask MORE questions of their doctors to find what is right for them. I figured more info was better...was I wrong?

    Ah ok, I flip through a LOT of posts so obviously got it mixed up. I still stand by my comment that if one is on a T4-only med (synthroid, levothyroxine etc) you should be very aware of symptoms and still get free T3 checked, to make sure your body is converting appropriately. I think I've just seen SO many people unhappy and it's clear why, but their doctors are T3-resistant.

    And absolutely agree that asking for more info from doctors is always the right path! I firmly believe you should question everything they (and that others, like me!) say; whether about thyroid or other health things.

    While I don't agree with everything in wheat belly, I do agree that most people feel better after removing wheat from their diet! Especially people with thyroid issues. Are you positive for Hashi's anitbodies? If so that would definitely explain why you feel so much better (though I think people usually feel better anyway).

    I don't have Hashimoto's (spelling?) or antibodies. I have Celiac (confirmed via biopsy). I didn't agree with everything from Wheat Belly either. As with all those types of books, I take them all with a grain of salt. Having experienced it myself, though, I am convinced the book has much merit (although not enough to drive me to a paelo diet).


    My doctor periodically tests my T3, so I'm covered. Also, I'm feeling really well so I don't believe I have any issue converting the T4 to T3. If I change in any way that isn't diet related, then I always call my doctor. That's how I found out I had celiac disease. It took over a year to figure out what it was. I blamed my issues on the medication or something thyroid related, when it wasn't. NOT that my thyroid surgery didn't trigger something, I think it might have...or the RAI treatment.
  • JayMri
    JayMri Posts: 241 Member
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    I had a total thyroidectomy in February of 2010 due to thyroid cancer. I am hungry a lot of the time but balance that out by snacking frequently and mixing in some extra carbs & protein as that seems to help. I do struggle with fatigue and would love any advise/thoughts to help with that. Maybe even some vitamins to add? I take a multivitamin and my thyroid levels are all good, well within the range they need to be anyway.